Haven't written in a while....

I haven't written on here in a while so I thought I'd post a quick update. I've been doing good in general, no hydro issues. Just been a bit more tired than usual. I think I just really need to exercise more. lol.

I am thinking about participating in a DW walk/run that will be somewhat close to where I live next May. I'm pretty excited about it, because even though I've met a few people in person with hydro, I have yet to meet anyone (that I know of) in person who has DW because it's a lot rarer than hydro. I'm hoping there will be a few adults there with DW but more than likely it will be just kids. I wouldn't be surprised if I will be the only one walking who actually has DW since most people will probably be doing it in honor of their kids or other family and friends with it. I've never done anything like this before so I don't really know how it works but I guess I will find out in the upcoming months. It should be fun. There will be entertainment there for kids so my 2 year old daughter should have plenty of fun and maybe she'll get to meet some kids who share her Mommy's condition. I'm really looking forward to it and hope we'll be able to go! I'll make sure to update if we go.

Article

For those of you reading my blog because of my IBC post, I am posting this article that David Haas sent me about the importance of cancer support networks for cancer patience and their families. Sorry that it is hard to read, but I had to copy and paste it and now it won't let me change the color of the font. I'm kinda dumb when it comes to that kind of stuff... lol. If I can figure out a better way of posting it later I will do so. Anyways, I hope some of you will find it beneficial. I'd like to thank David for writing this article and allowing me to post it in my blog!

Coping With Cancer Using the Support of Others

Patients who have been newly diagnosed with cancer will experience a variety of emotions including disbelief, anger and fear. From the moment the doctor gives the news, patients may feel lost and hopeless with no idea of what to do next.

Cancer patients do not have to deal with these feelings alone. They can find a good cancer survivor network, which will provide them with encouragement and useful information to help them cope. According to Duke University, cancer patients who have good support groups have less depression, stress and anxiety than patients without a network.

By interacting with group members, cancer patients get support and information from those who understand their situation. Patients will likely have a lot of questions about treatment. Support group members can talk about their experiences with surgery, chemotherapy, radiation and any oral medications the doctor prescribed. Group members can provide information on side effects of treatment and how to deal with them.

Seeing how other group members are coping with treatment can give patients the strength they need to deal with their own medical issues related to cancer. When groups have members in different stages of dealing with cancer, this can be uplifting. For those going through treatment, it can relieve some fear of dying to have group members who have successfully completed treatment or who are in remission.

Support groups are helpful for patients with all sorts of cancer.  While common cancers like breast cancer have many support groups, it’s especially important for support groups to exist for rare types of cancer such as mesothelioma. A support group is even more crucial for this rare cancer. This form of cancer has a low survival rate, so it is beneficial for patients to have the encouragement and support of others who are dealing with the disease.

Online support groups can also provide encouragement and information that cancer patients need. Internet support groups can be in the form of message boards or chat rooms.  Online support groups allow a cancer victim to reach out and access their support group at any time of day.  The Internet can provide around the clock support with its easy, flexible access.

Patients in cancer support groups report having a better quality of life than those who are not in groups. Patients or medical professionals may manage support groups. When doctors facilitate groups, patients get important medical information about dealing with cancer in addition to encouragement from group members.

By: David Haas

New Tattoo!

In honor of hydrocephalus awareness month and my upcoming 2 year anniversary of getting rid of my old malfunctioning shunt (and my headaches along with it!), I decided to get this tattoo. It represents the pain and suffering I went through because of my old shunt and my desperation to just be out of pain. I got it done at Naked Art Tattoo by Halo! He did an awesome job! I am hoping to spread lots of hydrocephalus awareness with this tat!

Hydrocephalus Awareness Month

September is National Hydrocephalus Awareness month! I submitted a video for an infomercial about Hydrocephalus and it got in! Here is a link: http://www.youtube.com/watch?v=Js9c8QdJnVE&feature=mh_lolz&list=HL1314887437  I am one of the only adults in it. I am towards the end (at about the 3:05 mark). Just trying to do my part to spread more awareness about this condition. :)

My Mom's Story

     This is somewhat off topic for this blog which has mostly been about my medical problems, but I thought it needed to be written to spread awareness. I didn't feel like making a whole new blog so I am putting it here. Even if you found my blog because of interest in my conditions I would still encourage you to read this entry as well. For info on my conditions please read my very first entry.
     First I will explain what I know about inflammatory breast cancer (IBC). IBC is a rare and aggressive form of breast cancer. I don't know a lot about the physiology of it, but the symptoms are usually much different from most other forms of breast cancer. It usually can not be detected by a mammogram and usually doesn't present with lumps (at least not until it gets into the lymph nodes in and near the breast). It usually starts off looking and feeling like a bruise on the breast. The affected breast may become enlarged and eventually the skin on the breast my develop a dimpled, orange peel-like appearance. The nipple may also become inverted. From what I have read, most people diagnosed with IBC have a life expectancy of about 6 months because it is such an aggressive and fast spreading cancer, but it is very possible to survive if it is caught early enough and if the treatments are effective.
     I believe it was some time in the fall of 2004 that my mom started complaining to me about a mysterious bruise on her left breast. She said it was just a bit sore and she wasn't too worried about it at that point. She figured she must have somehow done it in her sleep.
     A few weeks later, her breast was still sore and the bruise had not gone away so I encouraged her to go to the doctor. Even then, I was concerned it might be breast cancer, but I didn't worry too much since at the time I thought people usually got lumps with breast cancer and my mom said she had no lumps and had just had a mammogram a few months earlier. She went to her primary care provider and he said it was probably an infection and gave her antibiotics.
     After taking all of the antibiotics, her symptoms still hadn't gone away. She was tired of the embarrassment and didn't feel like going back to the doctor again for it so she put it off for a few weeks even though I told her she should probably go right back since it obviously wasn't an infection or it was a really bad infection that needed more antibiotics. She just brushed it off.
     When she finally went back to her primary care provider, he found a small hard lump in her breast area but said he did not think it was cancer. He said she probably just had a calcified duct and refereed her to a breast specialist.
      The breast specialist did a biopsy just in case but he didn't think it was cancer either. When the results came back, they said it was cancer, but it was a very mild and treatable cancer and was no big deal. My mom got referred to an oncologist who did more tests.
     After a few weeks of trying to figure out my mom's exact diagnosis, they  finally told her that she had inflammatory breast cancer. At that point they told her that she would need chemotherapy and may need surgery and radiation as well. But they still were acting like it was no big deal, and that she would be ok. I was devastated to find out my mom had cancer, but was reassured that everything was going to be ok because my mom said that the doctors said there was a lot they could do for her and she was going to be fine. I looked IBC up on the internet and found a different story. It said that most people only live six months after being diagnosed. I decided not to tell my mom this, since she had such a good attitude about it and I didn't want her to be upset or stressed. I just hopped that her doctors were right and the article was wrong.
     By the time she got diagnosed it was February 2005 and in March she started chemo. She was told she would probably lose all of her hair after a few treatments. At first she felt great. She said she didn't even feel like she had cancer.
     Her hair stared to fall out after a few weeks or so as predicted, slowly at first, but then it started coming out in fist fulls. She asked me to cut her hair as short as I could so it wouldn't make as much of a mess in the bathtub. I felt so bad as I was cutting her hair which was falling out in huge chunks as I was cutting. My mom thanked me afterward not just for cutting it, but for not being freaked out by it. I offered to shave my own head to make her feel better about being bald but she begged me not to because she loved my long hair so much so I didn't. She was very self conscious about being bald and got two wigs, some hats, and some scarfs for her head. She would let me and my dad see her bald head but no one else. During the summer, the wigs became too hot and itchy so she mostly wore sun hats outside. When my husband (then boyfriend) would come over she would scramble to get a scarf on her head so he wouldn't see her. I told her he didn't care but she still didn't want him to see.
     The chemo made her feel tired and fatigued but she still was quite active and went for lots of walks with her dog and went to the mall and so on. She tried not to let the cancer get her down. She believed that the key to survival was having a good attitude and staying positive and living as healthy as she could. She tried to exercise and eat a lot of fruits and vegetables and stay away from junk food. She bought a bunch of books on breast cancer and a cook book for people with breast cancer. She ate a lot of foods with antioxidants and drank a lot of water. She was determined to survive.
      After her last chemo treatment, her doctors gave her body a short break and then decided to do a mastectomy to be sure all the cancer was gone. They gave her the option of removing both of her breasts so that it would be less likely the cancer would return. My mom decided this would be the best idea because she just wanted the ordeal to be over with for good.
     I think it was in the fall that my mom had her double mastectomy. My dad and I stayed in the waiting room the whole time she was in the OR. I couldn't help but fear the worst, that there might be a complication during surgery and she might not make it. I was a wreak but I kept it all bottled up for my parents sake. After a few hours the doctor came out and told us that the surgery was a success and mom was just waking up. I was so relieved! Soon we got to go see her. She looked terrible and was pretty out of it but I knew she was going to be ok. They kept her over night and released her to go home the next day.
     They said they removed both breasts and five lymph nodes in her left armpit area. They would be checking both breasts and the lymph nodes for cancer and then they would make the decision whether to do radiation and more chemo or not. The results came in and they found cancer in 3 of the 5 lymph nodes they took out. I thought for sure they should do more chemo and some radiation but they had a meeting and decided that they got all the cancer and no more treatment was needed. They told my mom she was cancer free and that if she started not feeling well again they would do more test but they anticipated she would make a full recovery and wouldn't relapse.
     I was very happy that it looked like my mom was all better and was going to be ok, but in the back of my mind I still had my doubts. I still had anxiety about the cancer coming back. I told myself that I was just being a worry wort and tried to let those thoughts go but it was hard because I was still so nervous that the doctors may have made their decision too hastily.
     My mom felt great for the next few months. Her hair started growing in again. It came in curly at first even though her hair had been strait before, and it was gray instead of brown. But she was happy to have it back.
     Soon though, she started getting some tingling and swelling in her left hand which was the side that the lymph nodes had been removed from. The doctor said that this was a normal side effect of her surgery and it was due to the fact that without the lymph nodes in her armpit, the lymph fluid in her arm wasn't flowing as smoothly and was putting some pressure on her nerves. They told her to try light exercise and not to lift anything too heavy with that arm.
     My mom tried light aerobics, yoga, and even got a bicycle peddle thing that she used with her arms to work them out. She only got worse. Her hand got so swollen she had to have her wedding band cut off. At that point the doctor referred her to massage therapy for lymph massage which he said should take care of it.
     Mom went regularly to massage therapy for several months and only got worse. She even got a machine she could put her arm in to do lymph massage at home. She had to keep her arm wrapped up to keep it from swelling more. Her whole arm was huge and she was now in unbearable pain and was slowly losing the ability to move her hand and arm. Soon it became completely numb except for the pain which was now mostly focused in her shoulder area. The "dead" arm was so heavy that it pulled out of her shoulder socket. She would be in so much pain sometimes she would almost be in tears.
     All this time her doctor kept telling her this was all side effects from the surgery and kept giving her narcotics, nerve pain meds, and valium for the pain which didn't help much. She had to start sleeping in a recliner sitting up because it was unbearable to lay down in a bed. She would spend most of the night watching tv since she was in too much pain to get much sleep. She lived like this for months and hardly left the house except to go to doctors appointments.
     Finally she couldn't take it any more and convinced her doctor to schedule her for an MRI. The earliest appointment they could get her was about a month away. She was in so much pain one day that she called her doctor begging to have the appointment moved up. He said he couldn't move it up but she could go to the ER and have it done.
     My dad took my mom to the ER thinking that her doctor had called them ahead of time and told them she was coming to get an MRI. When they got there the ER doctor told my mom that they didn't usually do MRI's in the ER (WHICH IS BULL!) and my mom started crying. He caved in and said he would go prep the MRI machine but my mom was so upset and embarrassed that she made my dad take her home.
     When she finally got the MRI a month later the results were devastating. Not only was the cancer back, but it had spread to her shoulder (which was what was causing her so much pain and was blocking the flow of lymph out of her arm), her spine, both lungs, and her liver. I figured this was pretty much a death sentence but Mom assured me that the doctors were still hopeful and would do everything they could and that she could still beat it. I was pretty pessimistic but I knew I had to keep it together for Mom and for myself. I knew there was no point in being depressed about it and letting it ruin my life. I just had to hope for the best.
     Mom started chemo again. This time they tried a different type of chemo in the hopes it would work better then what they used before. She didn't loose all of her hair this time, but it thinned out a lot and she got terrible bone pain and mood swings from it. I tried to act as if life was normal and not dwell on what was going on thinking that would be what was best for everyone. But I did try to spend more time with my mom and keep her company since she was stuck in that chair so much. She told me she really appreciated that.
     One morning in November 2006, I was downstairs (I live in my parents basement) eating breakfast and I heard Mom calling for me. I rushed upstairs just in time to see her slump to the ground in the hallway between the room were she had been staying and the bathroom. I asked her if she was ok and what was wrong and she just kept saying "I don't know," over and over and seemed very disoriented. I called 911 and told them that my mom fell. I was still in shock and trying to grasp the situation so all I could think of to say was that she fell. I told them her age and that she had cancer and that she seemed confused and they sent an ambulance. I rode in the front of the ambulance and my dad who had just gotten home after the ambulance arrived followed in his car. 
     After they did a few tests they told us that she had some blood clots in her legs from being sedentary, and some had moved up into her lungs. Thank goodness they were small or she would be dead. The ER doctor questioned my mom who was now lucid. He asked her about her cancer and asked how long she was given to live. My mom shot me a very sad and concerned look. She had never told me that they actually told her her life expectancy. I could tell she didn't want to answer the doctor in front of me but she reluctantly replied that her oncologist gave her one year. I turned and looked away so that she wouldn't see how upset I was and did my best not to cry. I still don't know if that was one year since she was originally diagnosed or one year from the time they discovered the cancer came back. I suppose it doesn't matter.
     They gave her lots of blood thinners and kept her a few days in the hospital. When she went home they told her she had to have injections in her belly for at least six months. I gave her a few of the injections but my dad did it most of the time since after that incident he retired early to take care of her. I felt so bad for her because her whole belly was black and blue from the shots and soon became hard with scar tissue.
     Soon after she started feeling better from the blood clot incident, they decided to give her radiation in her shoulder where there was a huge tumor which was causing most of her problems. The radiation didn't get rid of the tumor, but it shrank it and broke it up. She immediately started feeling less pain and her arm shrank back to normal, although it was now quite thin and frail from muscle atrophy. It was too late to save the feeling in her arm though because it was now permanently paralyzed. 
     They also gave her another MRI to see how well the chemo was working. Miraculously, the cancer in lungs was completely gone! However the cancer in her liver was worse. They decided to switch chemo drugs to try and battle the cancer in her liver. She was supposed to get a biopsy of her liver, to find out if it was breast cancer that spread there or if it was a separate liver cancer so that they could figure out what the best treatment would be. Mom was all set to get it done but chickened out last minute and they told her she didn't have to do it.
     Before each chemo treatment, my mom always had to get blood work done to determine if her liver was healthy enough to handle the treatment. There were several times they had to postpone chemo to give her liver a little break because her blood counts weren't good enough. 
      During this time she also developed a wound under her arm from the radiation that would not heal right because of the chemo. It was like a burn. It never bleed, but it would leak lymph fluid everywhere and Mom had to keep a changing the bandages because they would quickly get soaked.
     Around march of 2007 I started to notice that Mom's skin looked a little yellow and I told her I thought she might have jaundice. She was really surprised by this. I guess her doctors had not said anything to her about it but they must have noticed since they were always saying that they didn't like her blood tests.
      She was still doing pretty good besides the jaundice at that point. She was just very tired and weak.
      It wasn't until late April that she started to take a turn for the worst. She started acting a little more confused and she would have dreams and wake up thinking they were real. She would also forget things easily. It was like she had the early stages of dementia. It was at this time also that her doctors started thinking about changing her chemo again to try and save her liver.
     When mothers day came in mid May, she was extremely weak and had very little appetite. Most days she would only eat one banana the entire day.
     The day after mothers day I was due to start a week long class at the community collage to become a certified life guard. I went to my first day of class which was several hours long. When my dad came to pick me up he said Mom wasn't doing too well and he was going to take her to the ER as soon as he dropped me off at home. When we got home Mom was clearly very confused. They soon left for the ER and I stayed at home.
     When my dad got home later that night, I could see in his eyes that things were not ok. I asked him how Mom was and he just said "It doesn't look good." He said that her potassium levels were very high. I asked him if I should keep going to my class or if I should just drop out and try to get a refund. He said it was up to me but I figured it was best to drop the class because I was too worried about my mom to go to class anyway and I didn't know what was going to happen.
     The next day my dad went back to the hospital and I went separately with my boyfriend so that if I got one of my headaches (see my first post in this blog) Dad wouldn't need to leave to take me home. When we got there, she was so much worse than I expected. She was in the ICU and she was barely conscious. She recognized me, my dad, and my boyfriend when we got there but she seemed very confused and would drift in and out of consciousness constantly. When she was asleep she would do this loud snore/moan that I knew was a death rattle. Sometimes she would wake up and start mumbling about nonsense and then slowly trail off and go back to sleep. Her skin was very yellow in color and cold to the touch even though she was dripping wet with sweat. He belly was so bloated it looked like she was 8 months pregnant.
     When the doctor spoke to us, he said she was suffering from liver failure and that there was nothing they could do but make her comfortable. He gave her two weeks to live and offered to put her in a hospice room so that my dad could be more comfortable while he stayed with her and she could die in a more peaceful atmosphere. We decided that would be best and a few hours later she was moved to a nice room that resembled a nice hotel room.
     I had hopped that Mom was too out of it to realize that she was dying, but I was extremely upset when she said something to my dad that implied that she knew. She said "I know I am near death," and then said something about getting me and my boyfriend out of there because she didn't want us too see her like that. Then she trailed off and went back to sleep. My dad didn't seem to understand what she had said since she was muttering and he was hard at hearing. He probably thought she was just babbling more nonsense. I'm glad he didn't hear her because it just would have upset him too.
     To my horror I could feel one of my headaches coming on after being there for a few hours. I knew I had to get home and lay down or I would end up in the hospital myself so I asked my boyfriend to take me home. Before I left I went to my mom's bedside knowing this might be the last time I ever see her alive and simply said "You get better ok?" She just mumbled "ok". I didn't want to say goodbye because I knew I would start crying if I did and I didn't want her to worry about me.
     Despite the emotional hell I was going through, I managed to get some sleep that night. I woke up at about 2:40 am to the phone ringing. I knew right away she was dead. I picked up and Dad told me Mom had passed away peacefully a few minutes earlier. She was only 53 years old.
     Dealing with the death of my Mom was the hardest thing I've ever had to do. Even though I fought with her a lot, we were very close and she was my world. If my husband had not been there for me when she died, I would have fallen apart and I probably would not wanted to go on living. I still break down and cry from time to time because my mother is no longer here. She didn't get to see me get married, didn't get to see her grand daughter, and didn't get to see me cured of my horrible headaches. All of those things would have meant the world to her and she was robbed of them.
     To everyone reading this, I would like to say: take care of yourself. Get checkups, go to the doctor if you think something is wrong, and if you know there is something wrong, don't rest until the doctor takes you seriously. I truly believe my mom would still be alive today if her doctors had taken her seriously. I feel guilt every day, that I did not force her to get a second opinion and that I didn't go with her to her doctors appointments and bully the doctors into getting her tests. I left it up to her because she was an adult and I thought that she knew what was best. She didn't and now she's dead. There is a whole in my heart that she left that can never be filled.

    

More Stuff...

     Thought I'd write about some more stuff that I left out of my original entry since it was so long already. From time to time I would try to find other diagnoses that I might have. Since no migraine medication ever worked I thought what I had must have been something worse. I would watch the discovery heath channel, and specifically the show "Mystery Diagnosis" looking for ideas of what I might have. At different times I thought I might have chiari malformation, orthostatic intolerance, pseudotumor cerebri, and even brain cancer but all of those were ruled out by mri's or other tests. I didn't mention in my story that after I gave birth and the headaches got really bad I was actually told I had a small mass on my pituitary gland. When I was a teenager they had told me that my pituitary gland was kind of an odd shape and my optic nerve was draped over it which should have caused me to have tunnel vision but for some reason didn't. Since they weren't worried about it when I was a kid I forgot about it. But when they told me that they found a small mass on it when I was so desperate for a diagnosis and a cure, I got really excited. I wanted it to be cancer so that they could remove it, or give me radiation or something. I figured that mass was causing my pituitary gland to release excess hormones which were causing my migraines. I was willing to have the whole glad removed if possible and was going to be willing to have hormone injections for the rest of my life if I could just get rid of the headaches! But they had an expert on pituitary masses look at it and he said it was too small to cause a problem. Around that time is when I almost died and finally got the right diagnosis. Looking back it's sad that I was so desperate to be diagnosed with a treatable condition that I actually hoped for cancer. And it's not like I don't know how bad cancer can be because I watched my mother suffer and die from it. I just wanted something that could be dealt with because if the headaches were migraines and no migraine med worked, then that meant that I would never find relief. At least if it was cancer, I knew I had a chance of getting rid of the headaches! I know enough about medical stuff to realize how lucky I am that I got a diagnosis and that it could be treated. I don't know how others live their whole lives in pain. Those people are truly the brave ones because they keep pushing on no matter what and I admire them!

Encephalocele vs. Meningocele

     I've joined a few encephalocele groups on facebook recently and done some more reading about it on the web trying to understand more about it and I'm a little confused. It seems like an encephalocele almost always has brain tissue herniating into it. I know that wasn't the case with mine. It seems like what I have is more of a meningocele which from what I've gathered is just a sac filled with csf like what I had. But I'm still confused because I only read about occipital encephaloceles being located where mine was on the back of my head, and meningoceles always seem to be located down further on the spine and are only associated with spina bifida which isn't exactly what I have. Maybe I have a hybrid of the two conditions? I'm wondering if what it is I had was supposed to be an occipital encephalocele because it was a defect in the skull in the back of my head, but maybe it was so small that only csf and meninges got through the hole making it more like a meningocele. Maybe that's why they used both terms in my medical records. Maybe the doctors weren't sure what to call it. I've never really been told by a doctor what the difference is or what I should be calling mine so I usually just refer to it as an occipital encephalocele/meningocele just to cover all bases. Make sense? Anyway, if anyone knows anything about this I'd love to know more so that I can understand my condition better. Feel free to leave a comment about it!

Just some ramblings of mine :)

     I just wanted to write a little about some of the things I've been reading lately, and some of the thoughts I've been having of about my medical conditions.
     I have been reading a lot of posts in hydrocephalus and Dandy Walker groups lately trying to find more info about the conditions and see what other people's experiences have been like since I have only ever met two people with shunts that I know of (and one was a baby who and I am no longer in contact with his mother) and have never met anyone with DWS. I was surprised at just how many people there are out there that suffer from these conditions, especially hydrocephalus in general. I have yet to look for a group about occipital encephaloceles/meningoceles (the other condition I was born with. See my first entry in this blog for more details.) but I have done general research on the web about it.
     Through my research I have found that most people with these conditions separately are usually at least somewhat mentally and/or physically handicapped. Many of them can't walk (or can't walk very well), can only talk a little or not at all, and have many other problems associated with the disorder such as seizures, Multiple Sclerosis, hydrocephalus, etc. Not too many of them have grown up to live full lives like I have. And that is people who only suffer from one of my conditions. It is apparently very rare (though not completely unheard of) for someone to have both DWS and an occipital encephalocele at the same time. I can't really find much info on what life is like for people like me who are born with both disorders. I'm guessing not so good since it seems that just having one of these disorders is usually severely debilitating, or deadly. I'm starting to think that I am extremely unique in having both of these conditions and still being able to be a high functioning person.
     I have read a lot about experiences that people have had with having children with hydrocephalus. It seems like the vast majority of the people in these groups are parents of children with these disorders I guess because the people who actually have the disorder are usually incapable of representing themselves and many times don't even live to adulthood. I have been trying to help out some of these parents who have so many questions and concerns about their child's disorder. I am hoping that it may help them to know what life has been like for me living with these disorders and to know what kind of symptoms they should be looking out for in their own child. I don't want anyone to have to suffer needlessly like I did, so I am trying to spread awareness of the symptoms people in the hydrocephalus community should be looking out for that may indicate something is wrong with their shunt. I do hope I have been of some help to someone!
     Unfortunately, in my readings I have also discovered that sometimes headaches similar to the ones I once had may just be a part of living with hydro, and may not always be able to be fixed like mine were. I have tried to help people suffering from these headaches by sharing my experience with them, but I'm starting to think that in most cases their situation can't be helped. Even if their shunt is malfunctioning like mine was, it seems that if they can't prove to their doctor that it is malfunctioning, then nothing will get done about it. I know that kind of frustration. I wish I could help these people more but I don't really know how. I feel like I just got very lucky that my doctors finally found evidence that my shunt was malfunctioning and so were willing to replace it. Other people don't seem to be that lucky. If their shunt appears to be working fine then doctors won't replace it. It also seems that with some people, no matter how many shunt revisions they get, they still have the headaches. That must mean that either the headaches have nothing to do with the shunt, or that the shunt just isn't being effective in treating the headaches for whatever reason. It has also occurred to me that shunts may not be 100% effective 100% of the time in treating hydrocephalus. I'm starting to get the impression that it is actually normal to get headaches once in a while when you have a shunt because sometimes the shunt just can't control the pressure levels in the brain as much as it should. Many people have said and I agree, that no shunt is perfect. A shunt is probably the best treatment for most people with hydro, but it is by no means a cure. I do still get mild headaches once in a while and when I do, I always wonder if it is related to my hydro. I consider myself relatively headache free since now my headaches are few and far between and are nothing compared to the headaches I used to get when my old shunt was malfunctioning. For a while, I thought the headaches I have been getting off and on since my last surgery have been just "normal" headaches like everyone else gets on occasion.  But now from what I have been reading about other people's experiences with shunts, I think it probably is my shunt. I do not believe my shunt is having a major malfunction, because if it was my symptoms should be much worse. It just seems that sometimes I have a "bad shunt day" in which maybe my shunt isn't working 100%. I will talk to my NS the next time I go for a checkup but I'm pretty sure nothing can be done about it. I'm not worried about it though, because these mild, barely even noticeable headaches aren't really affecting my quality of life very much.
     To anyone who is reading this who has any of the conditions I have discussed hear, know that you are not alone. And to the parents of children with these disorders, I would like to say that I truly admire your courage and your strength. As a parent myself, I know that raising a child is not easy as it is, even if you have a healthy child. But I can only imagine what it is like to have a child with such a severe illness. I feel bad that my parents had to go through that with me. I know it must be hell not knowing if your child will have a full life, or if they will even survive infancy. It takes a lot of guts to love a child so much when you know that you could lose them at any time. I know having grown up with these conditions myself, that the love, support, and dedication of family does make all the difference in the world.

Some Things I Forgot to Add...

     I thought that I would mention some of my other symptoms I forgot to add in my previous entry in case it is relevant to anyone reading this. Most of the time when I got the headaches, whether they were mild or severe, I would have light and sound sensitivity. These symptoms were probably part of the reason I was misdiagnosed with migraines since migraine sufferers often experience this. I used to have to lay down in a dark quiet room in order  to feel better just like migraine sufferers do.
     Also, sometimes when I got the really bad headaches I would get hot flashes. I don't know if I ran a fever or not, but I would feel really hot and would sweat. The only way to get any relief was to cool myself down with a cold, wet washcloth or something. Then after a few minutes I would usually feel better. Still don't know why this used to happen. The only explanation I can think of is that maybe the pressure imbalance in my brain affected the part of my brain that controls my hormones.
    

My Medical Ordeal

     This is my first ever blog. I'm mainly doing this just to get my story out there in case it can help anyone. I feel like if I can help keep this from happening to just one person, my suffering will not have been in vain. I don't know if I will continue to write more entries after this one or not. I guess it depends on how many followers I get and if I think of anything worth writing about.
     I was born with two birth defects: Dandy Walker Malformation, and an occipital encephalocele (also referred to as a meningocele). Dandy Walker Malformation or Dandy Walker Syndrome is a neurological defect in which the cerebellum is not formed properly and there is a cyst in the posterior fossa area of the brain. Most people with DWS get hydrocephalus (enlarged ventricles due to build up of cerebrospinal fluid) and may suffer from other complications as well (seizures, deformities, mental retardation, etc.). An occipital encephalocele is a defect in the back of the skull in which CSF (cerebrospinal fluid) and/or brain tissue can herniate out off the back of the head forming a mass under the skin.
     Growing up I never new very much about my conditions. The information I am providing here is mostly things I have recently read online. My parents never hid my condition from me, but they were very vague. I think it was mostly because they were not given very much information when I was diagnosed and they probably didn't understand a lot of what was told to them. All I knew was I had something called a Dandy Walker cyst (I always heard my mom saying that to doctors when I went to various doctors for checkups), I had something called a shunt put in when I was one week old that was like a tube that took fluid from my brain down to my tummy, and that when I was born I had a pouch on the back of my head that was filled with fluid (my mom said it looked like a pony tail because it had hair on it. Gross!). That's really all the information I ever had until a few years ago.

Above are pictures of me when I was two days old. In the one where my dad is feeding me you can see my encephalocele wrapped up. This is the only picture I know of where you can see it.

     When I was older I learned that I had hydrocephalus. Until recently, I thought I was born with hydrocephalus, but I read in my medical records that there was no evidence of hydrocephalus when I was born and I developed it a few weeks after being released from the hospital because of a shunt malfunction. I had always assumed that I was born with hydrocephalus because I was told I had a shunt put in when I was one week old and I figured they would only have done that if I had hydrocephalus. Apparently not. My medical records were very vague about why the shunt was placed but I suspect it was to drain fluid out of the Dandy Walker cyst to make it smaller because it may have been crowding my brain. At the same time they placed my shunt they also removed my encephalocele. My parents told me that when I was first born, the doctors were concerned that some of my brain might have herniated into the encephalocele. If that were the case it would have been more difficult to operate on and I could have had extensive brain damage or even died. Lucky for me it was only filled with CSF. According to my records, the encephalocele communicated with the Dandy Walker cyst. I suspect that having the encephalocele may have relieved some pressure in my brain and maybe that is why I grew up to be such a high functioning adult (from what I've read, a lot of people with DWS do not). I may never know.
      My medical records also said that when I was first born that my eyes drifted upward and to the side a little bit. It went on to say that my eyes seemed to become more normal after a day or two. Later however I developed crossed eyes (I suspect this may have been due to the hydrocephalus I developed when I was a few weeks old). The crossed eyes gave me double vision, and eventually I went blind in one of my eyes which I'm told was my brain's way of fixing the double vision. This is referred to as "Lazy Eye". When I was a little over a year old I had surgery to uncross my eyes and had to wear a patch over my good eye to encourage the blind eye to work again. I also wore glasses until my vision returned to normal. One of my eyes still drifts when I look up and to the side, but my vision is better than perfect now. I was just told that I could never be a pilot because of bad depth perception (which I've never really noticed a problem with).

Above is a picture of me with my eye patch and glasses after my eye surgery, and a picture of me with my parents showing my crossed eyes before the surgery.

     When I was a baby/toddler I was developmentally delayed (mostly physically) and had to have a physical therapist come to the house and work with me on fine and gross motor skills. I was told I didn't take my first steps until I was 19 months old (most kids start walking around 12 to 15 months). I can tell in my home movies that I had difficulty picking up objects and I didn't move around very much (at least not compared to my own daughter and other kids I have seen at that age).
     I also started rolling my head around when I was a toddler. This is something I still do. My doctors never had an explanation for it. They just said it resembled a tick (an involuntary movement) and since it didn't bother me my parents shouldn't worry about it. I usually do it when I'm day dreaming and I'm not usually aware of it unless someone says something to me about it. If I am made aware of it, I can stop. Since I've gotten older I have become more aware of it. Sometimes I can actually catch myself doing it now. I usually try not to do it in public, but at home I don't care because it kinda feels good to do while I'm daydreaming. It has recently been brought to my attention that I may have Bobble-head Doll Syndrome which is a very rare disorder (only about 30-some cases ever reported) that usually arises in people with hydrocephalus. I don't fit the description of the disorder exactly, but it is the best explanation I have ever found. 
     I went to two different preschools when I was little. The first one I think may have been for kids with special needs, but the second one I went to I think was just a regular preschool. By the time I was three or four years old I seemed to be mostly caught up with the other kids. I still have bad balance, but with practice I've been able to overcome it quite a bit. Throughout my childhood I was able to do gymnastics, ballet/tap, softball, swim team, jujitsu, yoga, kick boxing, and I even learned how to ride a bike although not very well. I have never been much good at sports but it didn't keep me from trying. I was always quite good at swimming though. Maybe because swimming doesn't take much balance. I went to a regular public elementary school and never even had to be in special ed. I did struggle in some areas, especially math and spelling, but I always passed. I was later diagnosed with ADD (Attention Deficit Disorder) when I was 15. I have no idea if me developing ADD or any of the other psychological problems I have (which I will discuss more about later) has anything to do with me having DWS or not.

Above is some of my activities and accomplishments from when I was a kid. Horseback riding, playing the drums, preschool, and 5th grade graduation. I was a very active kid and had a very full childhood despite my disorder!

      I felt completely healthy and normal until I was about 9 years old (give or take) when I started getting headaches. The headaches were pretty mild at that point, but I remember I went to the school nurse and got sent home a lot in the fourth grade. The doctors said I was getting sinus congestion and infections that were causing the headaches. At that point, that may have been the case since it was about that time I developed nasal allergies. I may never know for sure.
     The headaches seemed to die down a little in the fifth grade from what I can remember, but by the time I was about 11 or 12 I started getting headaches with new symptoms. I remember The first time it happened I went to see "Mortal Kombat: Annihilation" with my parents. I had a headache when we got to the theater but I really wanted to see it so I just ignored it. It seemed to get a little better while I was sitting in the theater, but when I got up to leave, the pain in my head got a lot worse. I started to feel and hear a pounding in my temples and the longer I stood/walked, the more the pain and the pounding increased. Soon I started to feel dizzy, and it felt almost like I was on a boat. The longer I stayed standing the worse it got. I felt slightly better and the dizziness went away if I sat down. I don't remember how long it took for my headache to go away that first time.
     The second time I remember the symptoms was about a year or two later. My mom was buying a baby Umbrella Cockatoo from a woman who lived several hours away from us. We were going to visit the bird because she wasn't old enough to take home yet. While we were there I started not feeling good. I felt fatigued and had a slight headache in my sinus area like I used to get in elementary school. I just tried to ignore it. Most of the time we were there I was sitting on the couch. When we went to leave and I got up from the couch I felt dizzy again, and the headache pain increased significantly. I started to hear and feel the pounding in my temples. The pain was all over my head but mostly in the sinus area around my eyes and forehead, inside my head between my temples where the pounding was coming from, and in the back of my head. I became so dizzy and disoriented that I found it difficult to make it down the steps and to the car. I had to reach out and grab the car when I got to it and get in and sit down as fast as I could. As soon as I was sitting down I felt a little better. My mom was pretty concerned when I told her what happened (I had tried to act like nothing was wrong so no one would notice while it was happening). I don't remember if I saw a doctor about it at that point. I know from the x-rays/ct scans/mri's that I have that I had gotten a few scans done in that time period but I don't remember if it was because of the headaches or if it was just a routine shunt checkup.
      As far as I can remember for the next few years, I only got headaches like that a few times a year randomly. I was fine most of the time. It was about that time that my depression (which probably started when I was 8 or 9) started getting worse and I also started to develop a lot of anxiety. At the beginning of the 8th grade I couldn't take it anymore. I was so depressed and I hated being around my peers so much that I convinced my mom and my psychiatrist to let me drop out of school and do homeschooling. At age 15 I was diagnosed with ADD, Social Anxiety Disorder, and Depression. Around the time I got diagnosed with the psychological problems my headaches also became more frequent and severe. I started to feel pain going down the spine in my neck, sometimes as far as between my shoulder blades. I always knew I was starting to get a headache (sometimes it was hard to tell if I was getting a headache or if I was just fatigued if I had been sitting down for a long time and hadn't stood up yet) if I couldn't touch my chin to my chest without feeling the pain in my spine. The dizziness when standing also got much worse. It got to the point that if I tried to stand for too long when I had a headache, I would start to loose control of my body and eventually my vision would start to go black too. If I laid down, or at least sat down,  my vision would return and I would feel better. At that point I remember going to a child neurologist who gave me an mri to see if the problem was my shunt, or if I had any other problems with my brain such as a tumor or an aneurysm. She also gave me an EEG to see if I was prone to seizures. All the tests came back normal and she said my shunt was fine. Since everything else had been ruled out, I was diagnosed with migraines. I tried many migraine meds but nothing worked. I even was put on topamax which is a seizure medicine that sometimes helps with migraines. Sometimes it was hard to tell if the medications I tried were helping or not because my migraines were so random. Sometimes I would go for months without one, and other times I would get them several times a week. I kept trying new meds because all the doctors I saw insisted that they would eventually find something that would work.
   Meanwhile, because of my depression, I didn't do my home school work very often and I got over a year behind. At that point the psychiatrist who diagnosed me with the psychiatric disorders told my parents that I had to go back to school for my own good. I became even more depressed and very angry. In my mind I was practicly an adult and I didn't want to be forced against my will to return to school which was hell to me. My parents and I decided that I would try a small private school (after I gave up fighting to stay in home schooling) thinking maybe the kids would be more accepting of me and that it would be less stressful for me. Long story short I was miserable there. The kids still made me so angry. But that's besides the point. Maybe I'll post more about my experiences with school and other kids in another blog post.
      After I returned to school my headaches slowly got even worse. Once, I was on a field trip to Philadelphia, and I got a migraine. I popped an over-the-counter pain pill someone had in their purse without even using any water and pushed on. We visited a mall for lunch and I parked myself at a table in the food court and could no longer move on. Eventually paramedics had to be called because my headache was so bad I couldn't walk anymore. I was hyperventilating so bad that my hands and face started tingling and my hands started to clench up so tight I couldn't open them. The paramedics told me to breath into a bag and that helped my hands unclench. They asked me what medications I was on and when I told them I was on antidepressants for Social Anxiety Disorder and depression, they told me I was just having a panic attack and there was nothing more they could do and that I just needed to relax and keep breathing into the bag. Then they left me. By then it was time for the bus to leave and even though I was feeling a little bit better, I still couldn't walk very well. One of the teachers had to practically carry me to the bus. On the way home I started to feel better until we got back to the school. I stood up to get off the bus and immediately felt intense pain and pounding in my head. I started too loose control and go blind. I felt pain in my butt and realized I had fallen and the side of my butt hit the arm on one of the bus seats. The only thing I remember after that was a few of the female students screaming for one of the teachers. The next thing I remember was laying in the bus seat while the teachers went to get my mom who was there to pick me up from the field trip. I was so terrified to stand up again! After a few minutes they convinced me to try to make it to my mom's car right outside the bus. I wasn't allowed to go on another field trip after that without one of my parents. It happened again on the next field trip when I went on to Gettysburg. I stayed on the bus half the time with my mom and when we got back to the school just getting from the bus to my mom's car had me in tears.
     I only spent one year at that school (10th grade. I was supposed to be in 11th but I was a year behind from the depression during home schooling) and decided that since I was now 17 I was going to drop out and get my GED and go to college with adults. My mom hated the idea but she let me do it as long as I promised to go to college. I took a few college courses for noncredit while I was waiting to get my GED. I passed my GED test with flying colors and officially enrolled in community college. I turned 18 during my first official semester. At that point I had a part time job working at the Sylvan Learning Center as a facilitator (I helped the teachers by making copies, getting books, setting up the computers for the kids, etc.). It seemed like the extra stress of going to school full time and having a part time job made my migraines worse. I got headaches at work more and more and would become useless when I had one and would have to go home. I decided to quit my job and drop a few courses (which I was failing anyway because of missing classes due to migraines) to lower my stress levels.
     Once, at school I got a migraine after my first class of the day. I staggered out of the classroom when it was over and made it to some chairs in the hallway. I tried to lay down and rest hopping the headache would go away in time for me to make it to my next class. It didn't. I ended up stuck there for about 6 hours. I felt too embarrassed to ask for help and I didn't want to bother anyone or make them late to their class. At the end of the day my mom came to pick me up and couldn't find me since I wasn't where she usually picked me up. She went to all the buildings I had classes in but couldn't find me because she didn't realize I was on the second floor in the building that my first class was in. By then I felt pretty hopeless. Not too many people were left in the building. I started crying. A young man studying down the hall heard me and asked if I was alright. I said no and told him I couldn't walk and he helped me down the stairs and outside. Once I got outside I felt nauseous and had to throw up in the bushes. While I was puking a woman walked by and asked me if I was the person my mom was looking for. She lead my mom to where I was and then a security guard drove us to my mom's car. My mom was very scared and I feel really bad about putting her through that. My psychiatrist thought it was "disturbing" that I waited so long to get help. I tried to explain to her that sometimes when I have a migraine I don't think right and I have poor judgment. It's kinda like being drunk. She didn't seem to believe me and blamed it on my social anxiety. Maybe that was part of the reason I didn't get help. I don't know.
     The next semester I met my husband in a health class we were both taking over the summer. We were friends first, and then started dating after about a year and a half. He knew about my migraines and knew that sometimes they could be really bad. At some point I also told him about my shunt. He never really acted like it was a big deal.
     In October 2004, when I was 19 I had a series of what was the worst migraine episodes I had ever had at the time. My parents had to call 911 three different times in one week. I remember the first time I had been laying on the couch with a really bad migraine and I had to go to the bathroom. I often got dehydrated when I had a migraine because I would purposely not drink so I wouldn't have to go to the bathroom since getting up would cause me unbearable pain. But sometimes I had to get up to go or else pee my paints. I ran to the bathroom as fast as I could because I knew the longer I was up, the more pain I would feel and the more dizzy I would get. If I wasn't quick, I wouldn't make it. I got to the bathroom, but while I was on the toilet the pain started to get worse. I collapsed on the floor. I don't think I completely lost consciousness, but I had to lay on the floor for several minutes to regain some composure. I pulled up my paints while still on the floor and had to lay there for a few more minutes. Then I got up the strength to unlock the bathroom door (I have a habit of always locking doors). Still on the floor, I crawled a few feet out of the bathroom. My parents were very upset and my mom asked me if I needed her to call 911. I said no. I didn't want to have to deal with going to the hospital. I had been to the hospital so many times for this, I was sick of it. I crawled a few more feet down the hall and had to stop again. I started thinking about how ridiculous it was that I couldn't even walk because I was so dizzy and in so much pain and I changed my mind about the ambulance. My mom called an ambulance and they took me to the ER. I had to lay on my side in the stretcher because when I got my headaches the pain not only intensified when I stood up, but also if I was on my back. I couldn't handle being on my back at all during a migraine. No one ever seemed to understand this. In the ER they gave me IV fluids and shot me full of narcotics (which was a routine I was very familiar with because of my frequent ER trips due to the migraines). I guess at some point I was good enough to go home.
     A few days later it happened again. Just as bad as before. I don't remember any of the details of my second ER trip that week, but I know my mom had to call 911 again.
     I don't think I was home form the second ER trip for very long when I started to feel really bad again. I remember I was laying on the couch with a headache and my mom was trying to sooth me by describing an ocean vacation to me. I was really trying to visualize what she was saying and relax, but all of a sudden the pain started to slowly spike. I remember screaming "It's not working!" (referring to my mom's attempts to help me calm down). I felt myself loose control of my movements and my whole body clenched up. The pain started in my head and ran down my entire body as if I got hit by lightening. Only, it seemed to happen slowly. I then realized I had peed my paints. It was like someone grabbed my bladder and squeezed it really hard. I remember thinking, "Why did I pee?! I don't even have to pee!" I was in so much pain at that point that nothing else existed in the world except for pain. I couldn't hear, I couldn't see, I couldn't move. The last thing I remember is thinking, "I have to end this! I have to die!" I have never wanted to die before because of pain. I would get through the pain by telling myself that the pain won't last forever and if I could just make it though it, I'd be ok. This time was different. I had never been in that much pain before. I couldn't think of anything else but ending it. I couldn't kill myself though, because I had no control over my body.
     The next thing I knew, I was laying on the couch and my pain was almost completely gone. I was very confused at first and didn't remember what had happened. Then I heard my mom say "Oh thank goodness, the ambulance is here!" I was very confused about why my mom called an ambulance. Then I remembered the pain and peeing my paints. I said, "Mom, I think I peed my paints," to which she replied, "It's ok honey, you had a seizure." I was very shocked by this.
     When the paramedics came in they wanted me to get off the couch and walk around the couch to get to the stretcher by the front door behind the couch. I refused to move because I wasn't in pain anymore, and I was afraid if I moved, the pain would come back. I felt very tired and just wanted to sleep. The paramedics figured out a way to maneuver around the couch to put the stretcher right next to me. I didn't want to slide onto it, but they threatened to roll me onto it and I didn't want that so I slid over.
     Once they got me feeling better at the ER they told me they were sending me home and I should follow up with a neurologist about the possible seizure. I was very upset they wanted to send me home. I thought they would keep me overnight for observation to make sure I didn't have another seizure. The doctor assured me that it is very uncommon for someone who has just had a seizure to have another one so soon. I didn't trust him, but I went home anyway since I didn't have much choice.
     I followed up with a neurologist after I recovered from the headaches I had, and I told him what I remembered and what my mom told me had happened while I was unconscious. She had said that I was screaming louder than she had ever heard me scream and I wouldn't stop no matter what she did. Then she said I turned onto my back and my eyes rolled back into my head and my arms clenched up close to my body. She said that I appeared to stop breathing and she was afraid she was going to have to do CPR. Then she said I started hyperventilating. Then I took a deep breath, rolled back onto my side, and that's when I woke up.
     The neurologist insisted that it was not a seizure based on the fact that I remember loosing bladder control (he said when people have seizures they loose consciousness before they loose bladder control) and the fact that I felt so much pain (he insisted that seizures are not painful). He said that I may have clenched up because I was hyperventilating, and I probably passed out because of a drop in blood pressure because of the pain. He was very dismissive of the whole thing. I asked him what caused the sudden surge of pain and he said he didn't know and that we may never know. Since I had already had and EEG and an MRI a few years ago that were normal, he told me there was nothing he could do right now but if it happened again to call him. I was very upset with this, but what could I do?
     In the spring of 2005 my mother was diagnosed with inflammatory breast cancer, which is the deadliest form of breast cancer there is. She received chemotherapy, which made her loose all her hair, and had both of her breasts removed in an attempt to get rid of all the cancer. After that her doctors declared her "cancer-free" and I had hopped that she would be ok. The cancer came back in less than a year and even though they tried more chemo and some radiation, it spread throughout her body and she died May 16, 2007 of liver failure (due to the cancer spreading to her liver and the chemotherapy damaging her liver). If I decide to do more entries in this blog I will write one detailing my mom's illness and death. There is a lot more to it.
     My mom was my world. She had always been by my side when I was in pain. She always was with me in the emergency room. She was only 53 when she died. That is way too young to die. I was only 22 when she died. Even though I was legally an adult, I still felt like I needed my mother. If my husband (then boyfriend) hadn't been there for me when she died, I would have fallen apart. He took her place as the one who took me to the ER when I had a really bad migraine. He was my moral support. He was my shoulder to cry on. If he hadn't been there, I probably would have given up.
     The week after my mom's funeral, my husband proposed to me. He had planned on doing it the week before but had to wait because of the death of my mother. He told me that a few weeks earlier, he had told my parents that he was going to propose to me as soon as he got the ring. He said that my mom had hugged him and told him she already thought of him as part of the family. It really means a lot to me that she knew.
     My husband to be moved in with me and my dad a few months later. I had already graduated from community college in 2006 while my mom was battling cancer. I was happy I was able to get my A.A. Degree despite my migraines. Now I was focused on getting a job.
      By that time however, my headaches seemed to get a lot worse so I decided to see a new neurologist (I have been to quite a few) and hope he might be able to get to the bottom of what was causing my headaches and how I could treat them. He had me keep a diary of my headaches and write down when I had one, how bad it was on a scale of 1 to 10, and how long it lasted. He also took me off of my birth control pills insisting that was the main culprit. After a few months he insisted that my headache journal showed proof that I was improving because my headaches were nothing but 1's and 2's on the pain scale. I tried to tell him that it was because I started going to bed as soon as I felt a migraine coming on and I wasn't going out much anymore. He wouldn't listen. He told me I should quit my job (I was working at Fashion Bug at that time) to relieve some stress in case that was a trigger. He said my fiance should be making enough money for the both of us. That didn't go over very big with either of us. I still quit my job because I hated it anyway and my migraines were starting to keep me from working, but I never went to see that quack again. None of the meds he put me on helped anyway.
     I gave up on getting help for a while thinking it was hopeless anyway. I started to become more depressed. My wedding was coming up and I was afraid it would be ruined because of a migraine and I would end up taking my vows in the ER. We planned a small, inexpensive, simple wedding at the Maryland Renaissance Festival. I wrote our vows and kept it short in case I had to do them sitting on the steps of the chapel we were to be married in front of.
     On September 20, 2008 I married the love of my life. To my surprise, the day went off without a hitch. I didn't get a migraine at all! I was sure I'd at least have one by the end of the day since I always seemed to get them when I went to weddings, fairs, vacations, parties, etc. But fortune smiled on us that day and it was one of the best days of my life!

Above is a picture of me and my husband from our wedding at the Maryland Renaissance Festival.

     I got a few migraines right after we got married, but nothing too significant. I had decided at that point though, that my migraines were too bad for me to ever be able to hold down a job, so I was going to try to file for disability.
     While I was researching all of my medical records and x-rays/mri's/ct scans to gather information for my disability application, I came upon some information that I was very shocked about. I read some reports about one of my old mri's talking about several malformations in my brain consistent with Dandy Walker Malformation.
     I knew that I had a Dandy Walker Cyst, but I was never told that I had multiple deformities in my brain. I was very surprised! I decided to look up Dandy Walker Malformation online for the first time and was very surprised to find out that many children born with the Dandy Walker Malformation die, and those that live are quite often physically and/or mentally handicapped.  I also found out that the prognosis for Dandy Walker patients varies a lot from case to case. Some have no complications at all, others are severely disabled, and everything in between. I figured I must have been one of the luckier ones since I haven't ever had to deal with any major handicaps. I had never really thought of my condition as being a big deal because I had lead a pretty normal life. It is still surreal for me to know that my brain is so much different than other people's brains and yet I function pretty normally.
     My medical records didn't really say exactly how bad my Dandy Walker Syndrome was or what kind I have. I still don't know if I have the classic malformation, or the variant. My parents never told me exactly what I was diagnosed with but I'm not sure if they were told themselves. I think maybe they were just told I had the Dandy Walker Cyst and nothing else about it. I may never know exactly what I have. I just know I'm different.
     After we had been married a few months, I started to notice my migraines didn't seem quite as severe or frequent. This made me want to hold off on applying for disability for a while.
     In early December 2008 I found out I was pregnant. We hadn't been trying to get pregnant, but ever since the one neurologist took me off the birth control pills, we weren't using any back up birth control. I don't think either of us thought that I could get pregnant, at least not that easily!
     I had to see a doctor right away to get off of some of the pills that I was on for my migraines and anxiety/depression because they might be harmful to the baby. For the first time in many years I was medication free!
     It was recommended that I see a genetic counselor since I had a birth defect. The genetic counselor told us that there was about a 2% percent chance that the baby would have some kind of neural tube defect like DWS (Dandy Walker Syndrome). I was actually more worried that the baby would inherit my migraines since I was told migraines usually get passed down from parents (even though my own parents never had them).
     I was so scared that our baby would be born with some kind of problem, either because I passed down my own disorder, or because I didn't know I was pregnant for a whole month and took potentially dangerous medications and did not take prenatal vitamins. I did my best to eat a lot of fruit, vegetables, and protein while I was pregnant in the hopes that it would help make my baby healthier.
   Shortly after I found out I was pregnant I noticed that my migraines went from being less frequent to nonexistent. I was thrilled! I had read that sometimes migraines go away during pregnancy, and that sometimes they came back after childbirth, and sometimes they didn't. I thought for sure that the fact that pregnancy made my migraines go away meant that they were hormonal. I figured if they came back after I had the baby, I could just try to get a doctor to put me on some kind of hormone therapy to make my hormone levels more like they were during pregnancy. I hadn't had so much hope in a very long time!
     I went through the entire pregnancy with almost no headaches. I did get a few mild headaches when we took a trip down to Louisiana for my sister-in-law's funeral, but I blamed it on heat, stress, and being tired.

 Above are some of my pregnancy pictures. In the lower one, my husband painted the green man on my belly.

     On August 19, 2009 at a little past 4:00 am my water broke. I hadn't started any noticeable contractions yet but since my water broke the hospital told us to come in. I started getting very painful contractions soon after I got to the hospital with my husband. I wasn't dilated very much and after a few hours of contractions I wasn't progressing very much so they gave me pitocin.
     The pitocin speed up my contractions but made them even more painful. I had really wanted a natural childbirth but the pain was starting to make me hyperventilate. The nurses all said I was breathing very well but I guess I was breathing too deep because my hands and face started to tingle and I felt light headed. I was used to breathing like this to help me deal with the migraine pain. They gave me a bag to breath into but it only helped a little bit. I decided since they said it would probably be a few more hours until I was ready to push, that I'd better get an epidural. It's not that I couldn't handle the pain. It actually paled in comparison to my worst migraines, but I was afraid that I would end up passing out because I couldn't control my breathing.
     When I sat up to get the epidural I was horrified to discover that I had a migraine. I hadn't noticed because I had been laying on an incline and didn't feel the headache yet. But when I sat all the way up I felt my head start to pound and felt dizzy. I immediately started to panic.
     My midwife and the other nurses seemed very surprised that I was so upset about a headache. I was so afraid that I would not be able to deliver because of my migraine and they would have to do an emergency c-section! I had told my midwife early on in the pregnancy that I was a migraine sufferer, but that my migraines seemed to be gone. I never told her how bad they could be. I think that because they didn't know about my migraine history they didn't realize how serious it was and didn't understand my panicking. I think they thought that I was just hysterical because of the labor pain.
     I needed to lay down on my side immediately. They refused to give me the epidural laying down (I swear I've seen people get epidurals on tv laying down) so I had to do without until I felt good enough to sit up for a few minutes while they did it. I soon threw up and for some reason after throwing up I felt better.
     I sat up for the epidural and even though it took longer than I thought it would I still did ok. The nurse that was holding me and the guy who did the epidural were both very surprised how well I took it. I was calm and still the whole time. Apparently a lot of people freak out. I told them that this was nothing compared to my migraine pain.
     After the epidural was placed I felt really drowsy and apparently passed out. I woke up to the feeling of my lungs getting turned inside out. The nurse had used smelling salts to revive me. I was very confused and very upset. I just wanted to sleep but I couldn't after that. I just rested on my side for a few hours. The nurse had to flip me over a few times because the epidural made me unable to move my legs. I was happy though because I didn't seem to have a migraine anymore.
     After a few hours I started to feel contractions again. The nurse was about to go get the epidural guy to re-dose me but I started to feel like something was pushing out of me with each contraction. I told the nurse that either I needed to have a bowel movement, or the baby was coming. She checked to see how dilated I was and immediately saw the baby's head starting to crown! They hadn't expected me to be ready to push for a few more hours yet so they had to scramble to set up everything and get my midwife.
     By the time I started pushing my epidural had mostly worn off I think, because I felt the contractions petty well and I had some feeling back in my legs. The epidural was still working good enough that I didn't feel much pain though. Only the last 2 or 3 pushes were really painful. I pushed so efficiently that it only took a half an hour. At 4:09 pm I gave birth to a beautiful, healthy, baby girl. She cried as soon as she was delivered. She didn't have to be revived or anything. I was so relieved! I was so overcome by emotion that I think I cried for at least 10 minutes!

My little girl right after she was born.


     After the birth I had a few mild headaches that I was given motrin for and it seemed to help. I didn't stand up too much so it's unclear how bad they actually were.
     I was so happy that my daughter didn't have any birth defects and seemed completely healthy and normal. She was so perfect.
     My joy was short lived however. Even though my daughter flourished, I was devastated that it appeared that my headaches were indeed coming back. It wasn't so bad the first month, but the headaches soon became unbearable. For the first three months of my daughter's life I suffered. The headaches became more and more frequent until soon I was having them almost every day and was going to the ER one to two times a week.
     I had to stop breast feeding after the first month because I got put back on migraine meds and I was constantly getting narcotics from the ER. I had another new neurologist who insisted he could find a drug that worked for me. He gave me a course of corticosteroids that was supposed to stop the "chain" of migraines I was having. Then he put me on a seizure medication that was also supposed to prevent migraines.
     The first couple of days on the corticosteroids were amazing. I had no headaches for several days in a row! I was so happy! It was the first time I ever found a drug that actually seemed to work. After I started to tapper off of it though, (it was only a temporary treatment) my migraines came back. The other med he put me on to prevent them seemed to have no effect. I was back to having daily migraines.
      It was starting to get to the point that I couldn't even make it to my scheduled doctor appointments anymore because of my headaches. I had to keep going back to the ER constantly. I had a lot of difficulty taking care of my newborn while my husband was at work. It was a nightmare. I would lay in bed all day long with her next to me in her bassinet. I would only get up to get her bottle and to change her.
     We live in my dad's basement where there is very poor cellphone reception, so when I needed help I had to text my husband or father. I always kept my cell phone by my bed in case I couldn't walk to the house phone. One time I had to text my dad to come downstairs and help me because I was in so much pain I couldn't care for my baby. When he came down I decided I'd better text my husband at work and tell him to come home to take me to the ER. I had a surge of pain in the middle of texting and lost control of my body for few seconds. I was screaming and crying. I don't think my dad knew what to do. The episode finally subsided and I was able to finish my text.
     There was a scary incident one night when I was holding my daughter in bed with my husband. I was talking to him and all of a sudden I started slurring my speech. I just couldn't get the words out right. This video of reporter Serene Branson at the grammys shows EXACTLY how I was talking:  http://youtu.be/jGC0z40ZToU   I started having numbness in the right side of my face and in my right hand. I thought I was having a stroke! I gave my daughter to my husband and told him to call 911 (it was very difficult to communicate but I managed to get my point across). By the time the paramedics got there my symptoms had subsided. They had me do a few simple tests to see if I was having a stroke and they assured me that I was not. I still decided that I should go to the ER just in case. By the time I got to the ER my symptoms were starting to come back. The paramedics left me in the waiting room and I had to wait for my husband to get there. Soon after he arrived I started to not be able to communicate at all. I couldn't get out what I wanted to say to the triage nurse so my husband had to speak for me. We were in the waiting room for over two hours I think. The whole time I was desperately trying to ask my husband if he was ok and let him know that I was ok but it was almost impossible to get out what I was trying to say. They finally took me back to a room and at that point I was starting to get a headache. I started to be able to communicate better after I got to the room, but I still had a lot of difficulty. The nurse that took my blood pressure decided to announce that my breath stank really bad. I kept saying "I'm sorry" over and over. Now I wish I would have said "I'm sorry. I didn't have time to brush my teeth before the ambulance arrived!" I can't believe how rude she was. I was obviously very sick! They gave me some narcotics in an IV and did a ct scan. They said they didn't see anything wrong. I had taken an over-the-counter migraine pill for the first time that had a lot off caffeine in it and had been awake for over 36 hours as a result, and so the doctor blamed my symptoms on that and sent me home. Before I left the nurse asked me a few questions to see if my brain was working right again. I was able to correctly name the president of the united states after a few seconds hesitation, but when she asked me what year it was I said 1998. I knew that was wrong (it was 2009) but that was all that came out. I got sent home anyway. And on top of that, I still had a mild headache when I left.
     I had come to the realization that I was dying. I had always wondered if eventually my headaches would kill me, but now I was certain that I was going to die, and I didn't know why.
     Then in November I finally got some more hope. I was at the ER and they decided to transfer me to John's Hopkins. I don't remember why. While I was there I told them that I had been having vision changes for the past couple of weeks. My vision seemed a little blurry, and I had a rather large and noticeable blind spot in my left eye. Also I was seeing weird shapes and colors, and once when I sat up in bed, I went blind for a few seconds. This finally got their attention. They examined my eyes and told me I had papilledema (swelling of the optic disk). I was so excited they actually seemed to be taking my headaches seriously now. They seemed to think the papilledema may have been caused by a pressure imbalance in my brain. They admitted me and started doing tests. They tried (and failed) to draw CSF from my shunt, they gave me four lumbar punctures, took x-rays of my shunt, and did an mri of my brain. After all that was done they told me that they couldn't find anything wrong. The doctor said he thinks that I had chemical or viral meningitis but that it was gone now. My heart sunk. I did not believe that was the problem at all. After all those tests I couldn't believe that they still couldn't give me an explanation. 

My back after all the lumbar punctures.

     I went home with even less hope than before. That night I remember I was in bed, and my husband was next to me. He woke me up and said I had a seizure. I was very confused because I thought I had been asleep. He told me that I had my head titled all the way back, my eyes rolled back into my head, my body stiff like a board with my arms by my sides, was making a loud and constant moaning noise, and was completely unresponsive. After he told me that, I vaguely remembered what I thought was a nightmare. I just remember being uncomfortable, unable to move, and hearing a loud moaning noise. I don't remember it very well but I do remember it.
     My husband took me to the ER. I don't remember much of that trip. The only thing I remembered was I had a headache but for some reason was able to lay on my back. I was hoping to get an IV with some narcotics because that's the only way narcotics ever helped me (although they still never made my headache completely go away). I remember being handed two pills of vicodin and before I could tell them that vicodin pills don't do anything at all for me, they had left the room.
     My husband later told me that when he told the ER doctor that I had a seizure, the guy scolded him for not calling the number they should have given me when they discharged me from John's Hopkin's. Then he went on to say that there was nothing they could do for me because there was no one available to run the EEG. My husband was furious. We later found in my medical records that when they discharged me, my pain level had gone from a 3 to an 8 and my blood pressure was 138/130 (or something weird like that). I should never have been discharged in that condition without so much as one test.
      When we got home, I went right to bed. My husband spent the next 10 hours trying to get someone on the number that the ER doctor insisted he needed to call. He said that he kept getting transferred over and over and could not find the right number and no one he talked to was able to help him.
      After that I still had a headache and felt really dazed. When I was discharged from John's Hopkins they had told me that I could get a headache from the lumbar punctures and if it didn't get better I may need something called a blood patch. We decided to go back to the ER to ask for a blood patch thinking that might be what I needed. I do not remember hardly anything after that.
     According to my husband when we got to the ER they told us that they could not do a blood patch at that hospital and I needed to be transferred back to John's Hopkins. My husband said on the way there I started to get much worse, and by the time we got there I was screaming uncontrollably.
     He said when we arrived at the John's Hopkins ER, the triage nurse was very rude and absolutely refused to take my vitals until I "calmed down". My husband tried to tell her that I was in a lot of pain but she didn't want to hear it. The paramedics that transferred me ended up having to take my vitals.
      My husband told me that they then put me in a room that had several other patients in it. I was screaming so loud that they had to move me to a private room. They put me in a room meant for quarantining contagious people. My husband said I was so loud that my screams echoed off the walls and gave him a headache.
     The only thing I remember of all this is crying and screaming "Sedate me!" Even that memory is very vague. Luckily, I don't really remember the pain. It must have been every bit as bad as the time that I had a seizure (if it was a seizure) in front of my mom. I am so glad I don't remember it!
     They finally sedated me so they could give me an mri. After the mri they told my husband that I had hydrocephalus and were telling him about the surgery they would be doing later that day, when I started seizing. They rushed me right into emergency surgery.
     I don't really remember much when I first woke up. I know after I became more lucid, I was told that they had to put in a temporary drain to relieve the pressure.

Me after my first surgery.

     I remember the CSF leaking out of the hole in my head, leaving my eyebrows and what was left of my hair wet and sticky. I had to keep wiping it off on my forehead so it wouldn't run down into my eyes. I will never forget how it smelled.
     After a day or two (I can't be sure, I lost track of the days) they told me they were going to do another surgery to remove the drain, and do a procedure called an Endoscopic Third Ventriculostomy in which they would poke holes in my third ventricle. If it was successful, I wouldn't need a shunt anymore.
     I was so excited that they actually found out what was wrong with me and were going to fix it! Words can't even describe how I felt. I finally had hope again. I wasn't even scared of the surgery because I knew that either they would fix me, or I was going to die. Either way, I would no longer be in pain, and would no longer be a burden to my family.
     After the second surgery, I remember waking up in a lot of pain. The headache was unbearable. I just remember saying "please help me!" over and over and being told that they needed a half an hour to prep the OR. I don't remember anything after that. My medical records said that on the way to the OR I had a decerebrate posture. Here is a link to a page I found about decerabrate posturing which my husband and I now think is what I did the night he thought I had a seizure and decorticate posturing that I think is what I may have done in front of my mom when she thought I had a seizure a few years back: http://www.wrongdiagnosis.com/symptoms/rigidity/book-causes-13b.htm
     They did a third surgery to put in a new shunt since it was clear that the third ventriculostomy had failed. Instead of a VP shunt (Ventriculoperitoneal shunt which goes from the ventricles of the brain down to the abdomen) like I had before, they gave me a programmable VA shunt (Ventriculoatrial shunt which goes from the ventricles to the heart).
     Like the first surgery, I don't remember much about first waking up. My memories are all so mixed up. I know that I woke up after one of the surgeries (not sure which one) to nurses removing staples from my scalp and going behind them with sutures. They said they couldn't give me any local anesthesia because it was too close to my brain. It was so painful that I could feel hot tears streaming down my face. They asked me if I wanted a narcotic and I screamed  "YES!" They put the meds into my IV and I must have passed out because I do not remember anything else.
     I remember bits and pieces of being in the Neuro ICU. I remember being woken up by nurses quite a lot to ask me to preform tasks to assess my condition. I think I passed every time however, from what I could hear, some of the patients in the other rooms weren't doing so well. My husband was only permitted to visit me for short periods in the ICU so he continued to work and then would come to see me after work every day.
     After I was moved to a regular room my husband was allowed to stay with me as long as he liked. I know he spent at least one night with me.
     I don't think I was in a regular room for long before they cleared me to go home. I was told I spent a total of two weeks in the hospital. My muscles were very weak from being in bed for two weeks and I could barely walk. My husband had to take at least a month off of work so he could watch me so I wouldn't fall going down stairs or in the shower and also to help me with our baby since I wasn't allowed to lift over 10 lbs. for a while.

Pictures of me right after I got home from the hospital.

     I followed up with the neurosurgeon who saved my life a week or two later. I told him more about the symptoms I had before my surgery and he told me that when I had the increased pain, dizziness, ect. when I stood up, it meant my shunt was draining too much (which seemed to be the case most of the time based on my symptoms) and when I was having seizures it was a sign I had hydrocephalus and my shunt was draining too little. I asked him why my headaches seemed to go away during pregnancy and he said that it was probably because my enlarged uterus was putting pressure on the tip of my shunt preventing it from over-draining. When my water broke my uterus shrank a little and moved down lower and unblocked the shunt. The more weight I lost after child birth, the more it over-drained.
      I still don't know why all of a sudden right before my surgeries my shunt stopped draining when usually the problem was over-draining. I also am not sure why my headaches were never properly diagnosed. The only explanation I can think of is that my shunt functioned properly most of the time and the malfunctioning was so intermittent that they never were able to catch it.
      It is now over a year and a half since my surgeries as I am writing this, and I have not had a headache since (a few "normal" ones but that's it). Clearly the problem was always the shunt and never migraines at all.

 Family portrait taken when our daughter turned one. A little about 9 months after I had the surgeries.

     It is unimaginably frustrating that I suffered for all those years when the problem could have easily been fixed years ago. I had to go through thinking I was crazy, people telling me I was bringing on the headaches myself either because of my social anxiety disorder or because I was expecting to get the headaches, people telling me I was making it up for attention, people telling me it was because I don't eat meat (I have only been a full vegetarian since I was about 14 or 15 and my headaches started years before that but they didn't listen to me!) and I have had to suffer the guilt of being a burden to my family.
     I am doing my best to come to terms with what happened to me and live my life as full as possible now that I can. I do live in fear that this could happen again and that I could die, or become a vegetable, or loose my memory, but I try not to dwell on those fears. At least now I know what a shunt malfunction feels like so I should be able to get help right away if it ever happens again.
     I hope this blog has been helpful. Feel free to leave comments and even share your own story. Thanks for reading!