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Chiari and syringomyelia with DDD
I have had fusion at C5,6 and 7 already in Dec2011 then was diagnosed with 2 syrinx's in my thoracic spinal cord, I have no feeling in my back region and also have Chiari malformation type 1. I have constant migraines, pressure and sometimes my leg just stops working. My left theigh is constantly numb and tbh I am scared out of my mind about all of this. I requested an apt with neuro at Mayo up in MN to....i do not know what to do. I am taking over 5000mg of IB a daily and it's really starting to upset my stomach but right now thats what i keep getting told to take for all of the pain and the 5000mg is only taking edge off...not getting rid of it...
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My daughter had Chiari Malformation. Its been 10 years ago.....her Dr. sent a request to NIH (National Institute of Health) in Washington DC. She had 1 Syrinx. with the same diagnosis you have. Thank God they accepted her as a research patient. Surgery was done and was very successful. She had one of the top surgeons in the nation. Please, get help before its too late. UCLA Medical Center, in Los Angeles California has done many successful Chiari Malformation surgeries. God bless you as you find solutions for this problem.
Dr Ryken did surgery on the chiari but now i have no feeling at all in left leg. He said that it's probably from one or both of the syrinx's. I do not know what to do with this because those are in middle of the spinal cord and i do not want to just go to just anyone. I do not want to end up in a wheel chair!!
Why not ask your Dr. if he would recommend National Institute of Health..Dr. Heiss is known around the nation for his research, and surgery on this medical problem. My daughter's neurosurgeon in Bakersfield, CA recommended Dr. Heiss(sp) at NIH.
My 4 1/2 yr old grandson was just diagnosed with (thoracic) syrinx in his spinal cord (mid back). His symptoms were weak muscles particularly in his legs. I find much info on line about chairi malformations (near the brain stem), but not much info when it involves lower spine. It's so hard to tell with a small child if he has back pain, numbness, but we do know he has limited muscle strength because he has trouble walking stairs, standing from the floor, etc. and was a very late walker. Didn't sit up alone until 18 mo, never crawled, etc.
If we are intereted in a reseach study what type of study would we look for? I understand there is no medication for the condition itself and dr. is not recommending surgery. at this point. We want to do everything we can do to monitor his condition so as not to allow more damage to the spinal cord, if possible. Who was your daughter's surgeon?
My daughters surgeon at National Insitute of Health was Dr. Heiss. However, it was her Neurosurgeon in Bakersfield, CA that connected her to NIH. The first neurosurgeon my daughter went to did not recommend surgery......glad she got a second opinion. We are so grateful for the Neuro. surgeon that recommended her to Dr. Heiss at NIH. I will be praying that your grandson will get the medical attention he needs.
Hello. My Nero doc has put me on Gabapentin and Baclofen ( prob spelled that med wrong) and Percocet and I'm doing well with the pain. It's making my symptoms better. I used to get this feeling on my legs like I had something ice cold on them, like a cold buckle on different places on my legs. My worst part of my day is waking up in the morning. But when I get up and get my mess in me I can get on with my day. Without them my temperature is all off ( I'm freezing) and I'm in excruciating pain all over especially in my legs and back. I hope this helped. I would really like to know your symptoms that you have. I've never spoke to anyone yet with our condition (syringomyelia in your thoracic) I can't wait to read your symptoms.
Ms. Joyce, is your daughter stillin Bakersfield? My 13 year old son had Chiari and had a succcessful decompression three years ago in madera.