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Neurology (Expert Forum)
Tethered spine
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.
Tethered spine
by Amy, Oct 26, 2000 12:00AM
My daughter, who is now 18, was born with a mild form of spina bifida. Her closed sack was between her back and she has hydrocephulus (slit ventricle syndrome). She had surgery when she was 2 days old and the neurosurgeon said she was the mildest case of spina bifida he had ever seen. There was a pin hole in her spine where one of her ventricles was blocked. and it allowed the fluid to for a closed sack on her back. She had an adult sized shunt put in when she was 2 days old and didn't seem to have any problems with it until she started developing headaches around 12. When she was 13 she had her 1st shunt revision. She had a Torkelson shunt put in and it failed. Her back was hurting after that and I noticed her scar on her back (from the original sack) had stretched and look different. After so many surgeries we've lost count, her shunt seems to be working pretty well. She still has headaches but they seem to resolve with staying in a prone position for a while. She has an adjustable valve with another pressure valve inline. Her shunt goes into her heart. She has complained about her back hurting for quite a while. When she mentioned the pain to the neurosurgeon they looked and said it was probably just muscle. In May she was diagnosed with staph infection and spent 15days on IV antbiotics. I remember her asking the doctor if that could have been why her back was hurting.
The pain has gotten unbearable at times. Her back is numb at times from the waist up and she has pain that radiates to her shoulder blades.We went to the neurosurgeon and, after an MRI, they said she has tethered spine. He wants to do surgery. What would the surgery involve and how great are the risks involved? How long of hospital stay?
The pain has gotten unbearable at times. Her back is numb at times from the waist up and she has pain that radiates to her shoulder blades.We went to the neurosurgeon and, after an MRI, they said she has tethered spine. He wants to do surgery. What would the surgery involve and how great are the risks involved? How long of hospital stay?
Doctor's Answer
by CCF Neuro[P] MD, RPS, Oct 26, 2000 12:00AM
Dear Amy:
Sorry to hear about your daughter's problems. As you are aware, most children with spina bifida have tethered cords. This is not something new in your daughter as it has likely been there from before birth as the spinal canal was developing. Yes, it can cause problems but now at 18 years of age, whether it is causing the current problems is difficult to assess. Surgery is an option for release, but if she has not had problems due to this before then whether it needs releasing depends on the extent of the tethering. I think I would get a second opinion before undergoing surgery once again. As with any surgery, there is a risk of infection, surgical mix-ups, anesthesia problems, and having the surgery have little overall effect. The average stay in the hospital depends on the complications encountered. The usual stay also depends on the insurance and the surgeon, but is usually 3-5 days. I hope that things can be sorted out for your daughter.
Sincerely,
CCF Neuro MD
Sorry to hear about your daughter's problems. As you are aware, most children with spina bifida have tethered cords. This is not something new in your daughter as it has likely been there from before birth as the spinal canal was developing. Yes, it can cause problems but now at 18 years of age, whether it is causing the current problems is difficult to assess. Surgery is an option for release, but if she has not had problems due to this before then whether it needs releasing depends on the extent of the tethering. I think I would get a second opinion before undergoing surgery once again. As with any surgery, there is a risk of infection, surgical mix-ups, anesthesia problems, and having the surgery have little overall effect. The average stay in the hospital depends on the complications encountered. The usual stay also depends on the insurance and the surgeon, but is usually 3-5 days. I hope that things can be sorted out for your daughter.
Sincerely,
CCF Neuro MD
well I'm glad the surgeon still has SOME input. It's a sad state of affairs when the insurance companies whose primary desire is to earn as big a profit as possible for their executives and shareholders are the ones deciding what the "usual stay" for anything, much less neurosurgery, might be!
Dee
I WOULD TAKE YOUR DAUGHTER TO A DOCTOR WHO WILL FIND OUT WHAT TI IS DR. NELSON HENDLER 1-410-653-2403, HE IS GREAT AND HE WILL NOT PLAY HE WILL FIND OUT WHAT IT IS AND WILL GET THE PROBLEM EITHER RELIEVED OR THE BEST SURGEON HE KNOWS. HOPE I HAVE BEEN HELP, LOVE, DEBBIE