I have started experiencing severe nerve pain everywhere over the last week. Everytime I move it feels like I am being stabbed by glass shards. This is something new for me. I have always had the on and off nerve pain in my hands and feet but not all over. In addition I have begun having bouts of vertigo with nausea.
My decompression surgery was done in January last year and I am wondering if I should have further tests done to see if I have syringomyelia. No one has ever tested for this and I am at a loss to understand my ongoing syptoms.
I would appreciate any input on these syptoms and treatments that have helped.
When they did your decompression surgery they would have known if you had a syringomyelia. It couldn't have been missed. If someone hugs me wrong I go down on my knees and have nerve pain all over. Even if I am washing my hair I sometimes hit it. You should defiitely check it out with your NL or NS.
Thank you Tracy. I am just so lost. I haven't had a hug from my husband in days and forget the shower. Both hugs and showers are excrutiating at this point. I had a new CT scan done Friday and waiting for the NS to review it. I am still seeking a NL that knows anything about Chiari or is willing to learn. SO FRUSTRATING!!!
I’m so sorry that you are experiencing these new symptoms:( I have Chiari and Syringomyelia and it is very painful. Syrinxs are usually found by doing a full spine MRI. Have you had this done? I hope your NS has some answers for you soon.
I have never had a complete MRI of my spine. Sounds like I should ask them to do one. The NS initially said there was no need for one but as I do further research I am thinking it should have been done before this.
Thanks for sharing.
Crystal said:
Maryelainey,
I'm so sorry that you are experiencing these new symptoms:( I have Chiari and Syringomyelia and it is very painful. Syrinxs are usually found by doing a full spine MRI. Have you had this done? I hope your NS has some answers for you soon.
Hi MaryElainey, I was wondering if you got any answers, or more importantly, any relief from your pain. I am so sorry for your suffering. My son has nerve pain that rendered him unable to stand or walk. He could not be carried, the scotch tape used in a somatosensory test felt like a needle in his back, the "wind" between his bare toes hurt so he always had to wear socks. Although he still can not stand or walk, the pain does seem to have subsided to the point where it isn't excruciating but he still hurts. He is also nauseous and dizzy at times, which kills us, esp as it only began after his surgeries. We've heard that time helps and sometimes it can take upward of a year. We've also ben told he needs occipitocervical fusion and a repair of his dural patch leak but other ns disagree. Are you better than you were five months ago?
As for our son, we learned he also has celiac (positive genetic marker test), and is low in iron and vitamin D so we are addressing these issues, plus using topical neurontin on his legs but honeslty, it seems TIME is the best medicine. We hope and pray with every passing day, week and month, he gradually improves and does not need another surgery.
Thanks for listening, Regina
I have a lot of trouble on tis site....I just lost a two paragraphs somehow...maybe they'll show up somewhere else on the site!