I was a VERY healthy, in shape person who really took care of myself. I am 38. Two yrs ago I was dx'ed with a RARE placental cancer. I had sx, and chemo and bounced back quickly, free of ca and had no issues since then which was 18 months ago. I have been having some tingling in my back for a couple months. I saw a chiropractor and a neurologist, both were puzzled. It resolved, and then started up again. I went to the ER as it got really bad and also to my hands at times. I was just dx'ed with syringomyelia at c6, c7 and T1. They said it is not chairai (sp), a tumor, and I did not have an auto accident. They told me I'd have to be monitored by a Neurologist and neurosurgeon. I have an appt with the NS on the 5th. I am in shock. I have NEVER had any back or neck problems and was a specimen of health before this. The more I read, the more devastated I get. I have 4 childrenand 3 are young. I am also a pediatric physical therapist and very good at what I do and help so many kids. The thought of not being to be an active mom and help kids who need me is heartbreaking. I don't want to jump t conclusions before I see the NS, but if what I feel like now is any indication of what I will be feeling like, it is pretty bad. I can not sleep as my head and neck hurts when I lay down, my back is tingling and hurts, and at times I get burning and tingling pains in my hands. How did this happen? Do I need to see a NS who specializes in this? I am in Chicago and while the hospital is good , I do not know if the ns is a specialist in this disorder. I feel I should not lift anything, do any resistive exercise, and limit my ped pts. to babies until I see the NS. Is this a good idea? Any guidance would be appreciated. I feel they did great in dx'ing, (mri's, CT's, nerve conduction tests, x rays) but have no idea what to do now. They gave me a script for neurontin, but I do not want to take a med that I will have to take that often. I do nor even take a tylenol. I can't believe this.
I know exactly how you feel. I am a 43 year old female who was diagnosed with syringomyelia about 8 years ago. Everytime I excercise the next day the pain in my neck and upper body is excrusiating. I've been seeing my neurologist for 8 years he does not recommend surgery but some days the pain, tingling and numbness makes me very depressed. I'm still trying to find some answers. It's just horrible to live this way. Good Luck.
There is no indication of how long ago your message was posted.It is now June 16, 2012.Do you have undiagnosed Chiari 0 or Chiari 1?To verify, whether you do or not will require an x-ray of your posterior fossa. The type of neurosurgeon with a specialty in syringomyelia needed will depend on the answer.Suggest you read: Clinical and Neuroimaging Features of “Idiopathic” Syringomyelia, E. I. Bogdanov, MD, J. D. Heiss, MD.If you do NOT have Chiari, read Indian Journal of Neurotrauma (IJNT2), 2009, Vol. 6, No. 1, pp. 21-26, Posttraumatic Syringomyelia, Harjinder S Bhatoe VSM, Department of Neurosurgery.If you do have Chiari 0 or Chiari 1, contact , P.O. Box 1586, Longview, TX 75606-1586 • 800-ASAP-282 or 903-236-7079
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Posted by andi
I was a VERY healthy, in shape person who really took care of myself. I am 38. Two yrs ago I was dx'ed with a RARE placental cancer. I had sx, and chemo and bounced back quickly, free of ca and had no issues since then which was 18 months ago. I have been having some tingling in my back for a couple months. I saw a chiropractor and a neurologist, both were puzzled. It resolved, and then started up again. I went to the ER as it got really bad and also to my hands at times. I was just dx'ed with syringomyelia at c6, c7 and T1. They said it is not chairai (sp), a tumor, and I did not have an auto accident. They told me I'd have to be monitored by a Neurologist and neurosurgeon. I have an appt with the NS on the 5th. I am in shock. I have NEVER had any back or neck problems and was a specimen of health before this. The more I read, the more devastated I get. I have 4 childrenand 3 are young. I am also a pediatric physical therapist and very good at what I do and help so many kids. The thought of not being to be an active mom and help kids who need me is heartbreaking. I don't want to jump t conclusions before I see the NS, but if what I feel like now is any indication of what I will be feeling like, it is pretty bad. I can not sleep as my head and neck hurts when I lay down, my back is tingling and hurts, and at times I get burning and tingling pains in my hands. How did this happen? Do I need to see a NS who specializes in this? I am in Chicago and while the hospital is good , I do not know if the ns is a specialist in this disorder. I feel I should not lift anything, do any resistive exercise, and limit my ped pts. to babies until I see the NS. Is this a good idea? Any guidance would be appreciated. I feel they did great in dx'ing, (mri's, CT's, nerve conduction tests, x rays) but have no idea what to do now. They gave me a script for neurontin, but I do not want to take a med that I will have to take that often. I do nor even take a tylenol. I can't believe this.