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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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I have been diagnosed with pseudotumor cerebri since 2007 I am 16 now had a total of 7 spinal taps and am now starting to lose my speech from brain damage. I'm 142lb at 5'5 also very healthy height for me. When I tell people about this disease I tell them its the disease they slap on people when there not quite sure what to do... I suffered from head aches my whole life basically from the age of 5 and they didn't listen to my parents till I temporarily lost my sight in '07. So just like you I understand your frustration of losing faith in doctors, we know what's wrong with our bodies when we walk into the ER, they look at us like there's no way, like we don't kno what were talking about so we suffer and get further damaged and get our lifes taken away from us with medications and procedures with no results. On day you and I will have our peace from the nausea and head aches and distress though miss, that I believe. I've been against getting a shunt since my diagnosis but have recently lost this fight with my last check up with the doctors findings of brain damage.. I am scheduled of a consultation for an emergency shunt placement and I'm scared. I'm a teen a honors student and a patriot, because of this disease I won't be able to achieve my dream of joining the marines. You are not alone in this never ending battle hun... stay strong...