It seems like I always have to fight for myself when it comes to my health. Before it was when I was first started having seizures no doctor believed me they thought I was on drugs, crazy and everything in between but I still kept fighting. If one doctor didn’t believe me I went to another one. If that one wouldn’t help me Id go to another one. I knew something was wrong with my body. It took years but someone listened and helped me. I went from having seizures every couple months to going 2 years without one. That never would of happened if I fell victim to those other doctors thoughts that I was making it all up. I had to remind myself of that and draw strength and at times hope from it more recently when I had to start fighting again.

I have known for a year that something was wrong. I didn’t know if it was a broken shunt a clogged shunt or something else but I knew something was wrong. My symptoms weren’t normal, no treatment was helping and my neurosurgeon said that everything was fine. I actually started to accept that this maybe my normal. I felt bad enough to cry and beg him plead for him to do exploratory¬† Brain surgery to find and fix whatever it is that is wrong. I knew it wouldn’t cure me but at least some relief, right? Well my doctors did not listen to me and we had run out of options so I found a doctor at Johns Hopkins one of the best hospitals in the country that specialized in my illness and did extensive research and worked in experimental treatments that would take my case. It took months to get approval from the hospital and insurance company and even more months sending records and images and setting up appointments but we did it because you do what you have to when its the only choice you have.

Once it was all complete it was time to put my body through hell and take this painful 7 hour drive to meet with a doctor who might say that he doesn’t have anything to help me either but I did it. The first two days was nothing but poking and prodding with countless test. On the last day before the doctors appointment my body is exhausted and mentally i’m drained, emotionally I am guarded. I don’t want to get excited or nervous and set my self up for bigger disappointment if he sends me away with nothing. We will call that cautiously optimistic because lets be honest in the back of my mind I was still praying that he would open that door with “Good news” that something was indeed wrong but we sat there and waited. The longer we sat the more anxious I became. Finally he came in and tells us that one of my shunts is obstructed and one is draining way to much although he doesn’t know why, he has a way to figure it out. Figuring it out means at least 2 more brain surgeries, possibly more and oh yeah I will have to drive 7 hours back to have these surgeries away from home, away from my family. He said all the concerns I had over the pass year were valid there was something wrong and had been wrong for awhile, what he found explained my abnormal symptoms. SIGH. I could breath again. For the first time in days I smiled. I was so happy I could’ve cried. It didn’t matter that hearing I was right meant that I had to surgery 8 and 9 and possibly 10 or that Id have to make a painful trip again, away from my family home. It meant I could get help, it meant someone listened, it meant the possibility of some relief, it meant validation.

Now if I had stayed at home, at the same hospital with the same doctor I could’ve gone even more years without help. I would be in so much pain for longer than needed all because I didn’t keep fighting.I listened to my body and I kept trying. No matter how many specialist said nothing was wrong with me.Who knows what answers you can find if you don’t even seek to find them. One doctor may not have all the answers but he may know someone who does. Or they may have a piece to the puzzle you need. And trust me I know that fighting can be emotionally depleting and financially hard but I promise it is worth it. If you know that you are not the type of person who can speak up for yourself or find the answers you need that is okay too but ask for HELP. There are patient advocates out there who will fight for you and stand with you. The validation you’ll feel from fighting for yourself and your health is a feeling that nothing can replace.



Published by enduringminds

Welcome to my blog!! This is a place where everyday people can come to talk about their problems, ask questions and hopefully find support. I am a normal person who suffers everyday from Pseudotumor Cerebri or Idiopathic Intracranial Hypertension, also from epilepsy. Everyday I have to endure and I know you do too so lets endure together!!

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