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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Cindys601....Well your reply prompted me to send out the paperwork to TCI. It has been sitting on my desk for over a month now and I had been going back and forth....decision now made! I live in NJ and they are about an hour away. I have nothing to lose and much to gain.

I actually was scheduled to have a lumbar tap last year to look for lyme (for all the neurological stuff) when it was cancelled because I found out just a few days prior about the Chiari and Syrinx. I am so sorry that you have been in pain ever since yours......When I hear of your struggles I just cannot imagine.....I complain about not being able to be a competitive athlete anymore but at least I can still carry on with normal every day acitivites (most of the time) with some pain related restrictions. Somedays I feel fine other days - like this morning - like I want to chop off my head. Either I was not breathing in my sleep or a storm front is on the horizon when I wake up with a headache like this! Did you have the tap for diagnostic purposes?

My husband jokes with me that I should be a meterologist:). Like you, I can tell ya when a storm front is close by. It could be clear sky and sunny but I will begin getting flashing lights in my peripherial vision (same ones I get with exertion) and I know right away it is going to storm. Very sensitive to changes in barometric pressure-I understand why.... but storms are something I use to enjoy - now I dread them.....It seems like everything I use to enjoy know just brings pain and visiual dusturbances...That is my frustrated voice speaking but I know that there are still things I can do to stay healthy in mind/body and spirit and try to touch those things every day. If I am having a bad head day:) then I don't run on the trail I walk.....and am grateful for my still stong legs and lungs.....But sometimes I get so fatigued I cannot even get through the day and I don't know if that is Chairi and lack of CSF flow -which would make sense to me - or some old unresoved lyme issues. Sometimes the not knowing what is causing what is most difficult. Yes, I agree with you..adaptability and flexability is the lesson in all of this for me and I think for most anyone struggling with a chronic medical condition. I do know one thing for sure, while I do have chiari and I strive to become well informed regarding this condition and to understand all that I can about it, I do not want to become defined by it- I need to continue to do things that keep me inspired and connected to my healthy self.

Are you going to do the decompression surgery? How did you recover from your first surgery for the tethered cord? Did that provide any relief for you? How was your experience at TCI in general? Do you remember how long it took to get an appointment? Sorry...lots of questions!

I am so very grateful that you shared your experience and it is very helpful to be validated - sometimes I feel even well meaning friends and family do not truly understand what is it like. Thanks again! TG





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