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Adult with Spina Bifida Myelomeningaocele
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luvsmidgs posted:
I was born with the above Disibility.
I wil be 50 yrs old in November 2010.
The Older I get the worse my back gets. I have Degenerative disk diease. Curaturve of the spine. I have shrunk 1 1/2 inches in about 2 yrs. On My MRI you can see thru my disk. I have a tumor about the size of a small ladies thumb on My lower spine that is getting bigger with ever passing moment. I have Nerve Ending Damage that goes down the right leg ,on the out side thigh (very painful) I can't walk maybe a few feet before my right legs starts to HURT & Soon stops working and I have to sit down before I fall down, in Pain, like I have never felt before. If I sit a more than 10 minutes I have to get up and walk or change the way I an sitting. Sleeping, Well I am not real sure what that is anylonger. As I Do Not Get Alot of it.
For some reason I cannot find a Dr. that will touch me. I live in E. Tennessee and have traveled as far a Greeneville S.C. to no avail..
My question is. What can be done with the walking pain and the breakthrough pain & just the all around pain. I can now still walk but it is getting Very Hard. I take very High Powered Pain Meds to No Avail..
Please does anyone out there know of anyone, that might know of any help or maybe someone else this is an Adult with Spina Bifida with any Info.
Thanks and Hope everyone understands me about my Disability.I have filled for Disibility but turned down for the second time in 10 yrs. Got A Lawyer this Go Around.
All Info and suggestions will be Greatley Appreciated..

PS I can't remember for the Life of Me who the Dr they said to put Attention to. I have Dial Up and don't want to go back cause it took so long to get this page to load up. If Someone could direct him to my Post. I would Greatly Appreciate it..
PEACE
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Caprice_WebMD_Staff responded:
Hi Luvmidgs and welcome to WebMD,

I'll direct Dr. Maine to your post, no worries.

I hope that others here will chime in with their thoughts while you're waiting for him to respond.
Treat people as if they were what they ought to be, and you'll help them to become what they are capable of becoming. ~Goethe
 
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David Maine, MD responded:
I would point you to the spina bifida association. They have terrific resources and should be able to guide you in the right direction along with providing numerous support outlets. I know this disease is a struggle and poses many challenges. I wish you luck and hope the resource proves useful. Good luck!
http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700317/k.2E6D/Adults_Living_With_Spina_Bifida.htm
 
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acconway responded:
I can relate to your problem and my heart goes out to you. I am 778 years old. I was born with a hole in my mid-back and the doctor not knowing what it was sewed my back up which left a scar which looked like a navel on my back. Growing up I had no significant problems except "don't touch my back". If you did it would cause a terrible sensation. When I was 68 years old my lower back and legs began hurting terribly. I could nnot sit up or stand for anything length of time. My medical doctor finally sent me to an orthopedic doctor who did an X-ray and immediately told me I had Spina-Bifida and my spinal cord was tethered. He told me if I did not have my spinal cord released I would be in a wheel chair in a year or two and lose control of my bowels and bladder. He sent me to a neurologist who agreed with hi diagnosis and immediately sent me to a neuro-surgeon. I had surgery to release my spinal cord in August of 2004. Since then I have had pain in my lower back and various pains in my legs; muscle spasms, numbness, tingling, sharp pain and electro-type pains. My tail bone feels numb and hurts at the same time. The doctor did a nerve test and found I had nerve damage in my legs. I have tried many things; however, nothing has helped to date. Lyrica made me looney tune, Neurotin numbed my entire left side. I have been taking Ultram; however, it does not help. I have had physical therapy, injections, etc. etc. to no avail. I tried a Spinal Cord Stimulator trial and it did not help. I am at a loss as to what to do....so I stay off my feet as much as I can. My surgeon and other doctors I have seen have no answers. I went to Duke and the doctor their said I had "Radiculitis" and there was nothing he could do to help me. I am going to have another injection in my back this week ... we will see. If anyone has any suggestions would certainly appreciate your reply. I hope you find some relief ... it is no fun being in pain all the time!!
 
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Magsjeanea responded:
what part of East Tennessee do you live in? I am in the Chattanooga area and have a wonderful spine specialist in Knoxville. If you would like to email me at: Jeaneau3454@yahoo.com
I will be willing to give you the name of my spine doctor and my pain management doctor and they are really close to each other, in distance. Please do not hesitate to contact me if you need this information. Don't worry, this is a throw away email account so I am not worried about anyone having it.
Hope you find the answers you are seeking.
Take good care,
Love Goes There, Mag's Jeaneau
 
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Hutchinsbillie0 responded:
Hi my name is Billie Sue and I also have Spina Bifida I am 27 years old and I know exactly how you feel... the no sleep because any way you lay causes pain it is so difficult to even get out of the bed. I cant stand very long and I cant sit for very long either. It is becoming more of a struggle every day even just to do the simplest things. I wish you nothing but the best and hope you can get help soon for the pain for I know how that feels. I hope to hear how you are doing very soon, take care and god bless!!!


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