I know that it's been quite a while since I have posted. A lot has changed but are still the same in some aspects.. I have seen 3 doctors in Jacksonville, but never did make it to the Mayo Clinic. I see my neurologist this afternoon, and have a lot to talk to him about. My seizures and drop spells have come back with a vengeance. They are happening almost daily. I am going to see if he will do another lumbar puncture to check my pressure again. All my symptoms have gotten worse and a few new ones have popped up.
I had reached my breaking point, and started giving up on doctors. It just seemed as though they didn't care or want to try and take the time to figure anything out. My neurologist did put me back on a seizure medicine and doubled my diazepam daily to try and help settle them them down. I got tired with traveling and wasting the money for no reason. After everything, my insurance still won't approve the Mayo Clinic since they are out of network.
Things are starting and going to be changing drastically for myself and my family. My husband started this week to get out of Army under a Family Care Plan Chapter. I am having more and more trouble taking care of myself and the house. Plus having my 5 year old, he gets scared when things happen to me. He knows how to call my husband, if he is gone, if something happens and I need help. We will be moving back home where we will have much more help and support. I was lucky enough to get the house next door to my parents. This will be a huge stress reliever I think.
There are some good doctors the next town over, including a neurosurgeon who has dealt with Chairi and is one of the neurosurgeons on the East Coast. We should get to keep our medical for a little while after he gets out, which is great. I am going to talk to my current neurologist about contacting someone up there so I can have continued care and they know the basics of my case already. Hopefully, they will listen to me and do the shunt surgery and/or do the decompression again to see if something went wrong or didn't do enough and will do the full decompression surgery.
I'm looking forward to this process speeding up and finding out soon an estimated time for when we will be able to move. I am looking forward for start doing things to raise awareness at home about Chiari and Syringomyelia. I'm trying not to get my hopes up too high again for it to turn out the same it has down here. I feel that having all of our family and friends so close will be a huge help and major stress reliever. My husband and I believe thismis best for us and will be a huge help to have a bigger support system near by.
