So sorry to hear of your plight. I too was feeling hopeless. I finally found answers from my own research because doctors wouldn't listen and nearly killed me in the last 4 months! The nausea is probably because of a combination of your headache and the fact that you are not reabsorbing the CSF fluid correctly and it is building up in your abdominal area. Do you feel swollen/see it? I could, but the doctors couldn't--said it was normal swelling (20 lbs, rallly?) and noone would listen. I know I'm chunky (200 lbs) but there's a difference and you can see it. My plight was similar to yours. I had 3 revisions within a month to my LP shunt before they realized I wasn't reabsorbing right and the fluid kept backing up and causing the tubing and valves to leak. Last week they finally pulled my LP shunt out (like yours leaving part of it behind because it was embedded), and installed a VP shunt through a different incision in my chest. It seems to be working so far, but my fingers are crossed. I am a teacher and have been out of work since Jan. 19th....it has been very difficult for my family. My two children 7, and 13 have seen me go in and out of the hospital, and my poor husband who works long hours has had to do even more to take over the house as well. I don't like the feeling of all the hardware in my head though. I can't even lay on my right side because of the tubing and valve underneath the back and right side of my skull/scalp---which is why I'm hear, to find out if this is normal. But I suppose, I am alive, I haven't lost any more vision other than the initial left eye peripheral, and the headaches seem to have dissipated. So it is a tradeoff, and I'm happy for now. Can you talk to your health plan about getting a second opinion at an ACADEMIC facility (they are usually more up to date on research), and maybe have a VP shunt put in instead of the LP? Lots of problems with LP if you do your research! God Bless and you'll be in my prayers!
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Originally Posted by amberdnae
I have been battling this condition for about 4 years now. It took 2 years to get an actual diagnoses. 1 year of me ignoring the problem and the next trying to convince every doctor I saw that I was truly suffering. I was 23 and pregnant when all of it started. It was my 2nd pregnancy and I started having complications at 19 weeks. I look back now and realize that I went from what I would consider "average" weight at 146 to almost 200 lbs. The majority of the "weight" was swelling and soon after I delivered I immediately lost 30 lbs. However, I felt like crap. I was sick all the time. I like most doctors thought it was all in my head. That is why I waited so long to talk to someone. The moment I did try to get help that is exactly what I was told...It was all in my head. I was just stressed. A stay at home mom with 2 little girls and a very unsupportive husband.
My weight started creeping back up. I topped out at 200 lbs and this time I could not blame pregnancy. I was sick, exhausted and I ate too much. I began seeing a family doctor who ran a ton of blood work and of course everything came back fine. Here is where I am still confused. My symptoms where vomiting and feeling nauseated. I think back and I am not sure if I ever told my doctor that I had a headache. My number one complaint was feeling sick to my stomach. The beginning of 2010 I started throwing up multiple times per day. I rapidly starting losing weight. Towards May of 2010 I was throwing up more than 15 times per day, which does not even physically seem possible. In one months time I lost 30 lbs.
I went to the ER where they very unhappily admitted me, did an upper GI and found nothing. After treating me like an insane person, they sent me home. While sitting in the passenger seat on that ride home I realized that everything was blurry. I thought it was the medication I had been on. By that evening while watching TV, I began to panic. I was seeing 4 tv screens. By the next day I could barely see anything. Confused and still in denial I went to the eye doctor at Wal-Mart. He helped me more in that one visit than a year of doctor and hospital visits. He looked at my eyes, told me that both of my eye balls had been pushed forward and that I needed to see a specialist asap.
That visit to the opthomologist began like so many other doctors visits. He started to make light of the situation until my mother spoke up and told him that I had been vomiting non stop and had lost 30 lbs that month. He looked at me and said I know exactly what is wrong with you. From there everything started happening really fast. He called my family doctor right in front of me, explained the urgency of the situation and I got a much coveted appointment at Barrow's Neurological Institute. They got me in the next day and by that time my eyes had completely crossed, I could see colors but not much else.
Again that appointment started off like the rest. He was a younger doctor, very arrogant and made a comment about how young I was. Only when he turned off the lights and looked in my eyes did he start treating me differently. He left the room and came back with a much older doctor who began the whole process of looking into my eyes again. They then told me that I would be admitted to St. Joes that day. The neuro resident that did my lumbar punctur after I was admitted, screamed when the pressure and fluid popped across the room and hit the wall. The roller coaster ride the 2 weeks I was in the hospital was scary, lonely and I didn't know what my future would hold. They ultimately decided to put a shunt in my spine.
I wish that I could say my story ends there. However, it doesn't. I have been sick every day since. Some days are better than others. I had to have a shunt revision this past October and now I have 2 shunts in my spine. The first one became so imbedded that they had to leave it because of the damage they were afraid it would cause. I have nerve damage from both surgeries and I am in constant physical pain.
I feel at the end of my rope. I will be 27 in April, I am now a single mom to 2 beautiful little girls. I work 2 jobs and I am about to have to quit the main source of my income. I am missing to much work due to being ill all the time. I have missed 27 days of work this past year. My employer asked me to come back knowing my illness and a year later she is tired of it. I can not offer her an hope that I will be or feel better.
Here is where I am confused. I was not sick like this before this condition. However, after my surgery the pressure behind my eyes and in my brain is coming back fine. Why am I so sick? Why do I start off most mornings puking? Why am I so easily getting infections? Today after I worked, I had to miss a staff meeting because I have strep throat. I have been running fever all day. I am losing faith in myself, in doctors and in my body. I need to know if I am alone. Or if there are other people that struggle with their health after surgery and a diagnoses? Like most people that are diagnosed with pseudotumor cerebri it started off with me being over weight. However, I have maintained a healthy weight of 146 for almost 2 years now, at 5'2 my doctor tells me that is a healthy weight and no longer contributing to my condition. I know this was long, I know maybe even confusing, but I am at a lose over where I go from here....
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