spinal fussion or detethering for spinal bifida occulta paitients

[maggie113]

I would like to find a physician or someone who can help my 21 year old son woith answers to questions on spinal fussion or dethering as he has been to many doctors and specialists for his spinal bifada occulta condition and its allways the same answers- Physical Therapy, Pain Management, and Pain medications we have been through all of this time and time again to no avail, simply they just do not help. He is suffering in pain beyond belief and nothing helps He can barely walk or move most days it has gotten so bad. We have found articles on people who say that there are no doctors who believe in detethering or spinal fussions for this condition yet found in past years these surgeries were performed and those that had it are greatly improved and almost like new! Please help me and if you have any information on any specialist that does these procedures let me know.

[Lemmon334]

I too have spina bifida occult in my c6 and c7 vertebrae. I also have a fused disk in my neck. I have chronic neck pain and my left arm pulls upward and the left muscle between my neck and shoulder is much bigger than my right side. Every doctor treats me like I have a mental condition instead of a physical condition and just prescribes pain meds. I also have a continuous burning sensation in my neck. Does anyone else have these symptoms or answers on how to treat these symptoms?

[Momma12]

I have just read your article about your son. I am 32 yrs old, mother of 2, wife, and nursing assistant. As you can tell I am very active. I have spina bifida occulta and tethered spinal cord. All my life I have had so many back problems and extreme pain that there are days that I could not move. Like your son I have gone to so many doctors and they have all told me physical therapy, and so on. It does get frustrating. Three years ago I was diagnosed with a tethered spinal cord. I had gone to see a neurosurgeon at cleveland clinic and he told me because I wasnt having any systems that he was not going  to do anything about this. So after 2 years of nothing, last year in september I started having problems walking my legs would become weak and it felt like I had walked miles  and miles. This was only from taking about 2-3 steps and it was worse going up stairs or doing anything strenuous. I had gone to my regular pc doctor and told her about this and  she did some blood work and to no avail nothing showed anything was wrong. As time has gone on it has gotten worse. After months of frustration I finally became my own advicate for my medical care. I had taken my own research and doctors and found a neurosurgeon at Cleveland Clinic Foundation (different one) His name is Dr. Steinmetz. He is absolutely wonderful. As soon as I saw him he knew right away that it was my tether cord causing all of my problems. Weak, numb legs. Cant hold my arms above my head for more than a few minutes, recurring urinary tract infections. He said that we need to go in to detether the spinal cord as soon as possible. On Sept 25th I am having a lumbar laminectomy and detethering. Believe me I know what your son is going through. This pain is so unbarable that I am in tears most nights and can barely sit up, lay down or stand up. So I am very glad that I am having this surgery. The Cleveland Clinic is the best of the best...that is all I have had my whole life and I wouldnt trust this surgery to any one else. I hope that this helps.

[kittyluv1]

Unfortunately MedHelp does not advocate any posted information related to specific doctors or treatments which identify personal information (although it does happen!)
The fact that you have had your son seen by so many doctors and specialists is a concern as a recommendation for either fusion or detethering has not been suggested.
My only recommendation would be to contact a major teaching facility in your area and ask for information related to board certified neurosurgeons having experience with complex spina bifida problems.  There may be some reluctance to performing surgery for his condition as spina bifada occulta is the mildest form of this condtion.  There is usually one malformed vertebra, but the nerves are generally intact and normal and covered by a membrane.
This does not mean that his condition is not serious or his symptoms not relevant.
Pain is a very subjective finding and difficult to quantify between individuals.
You could also try any website devoted specifically to spina bifida treatment and see if there are options available to you.  One web site is www.spinabifadaassociation.org which has links to clinics throughout the US and a guide to available resources.
I hope that you do find the best available treatment for your son.
Best wishes ----