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@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred by my nl to one neurosurgeon, because of my diagnosis and symptoms and I was not comfortable with his history of relatively few decompression. We then sought a second opinion from a different facility/group of physicians and a nl and nsg there concurred I may never NEED surgery. Confused by the conflicting opinions, I decided to wait and when my symptoms progressed, returned to my original nl for a referral to the chief of neurosurgery @ a neurological institute/hospital. He recommended I should have surgery sometime SOON as I had a large syrnix in addition to a complex Chiari. I had surgery 6 days later and have residual nerve damage to my left side but timing was not a factor here, nerve damage occurred from cord compression years before my surgery.
I recovered quickly from surgery, but was told by my nsg, it may take a full year to "be yourself again"! And, he was right, patience and pacing your activities is the key to bouncing back and attitude, attitude, attitude!
Replies to "@anorwalk: re: your differences in opinions from nls and nsg for needing surgery. I was referred..."
Kjh2017. Can I ask if you have been left with nerve pain in your back and if so what medication you take for for it?.
Hi,
Just curious. Can I ask what medication you're taking for your back pain?. I have and had exactly what you had and I too am left with damaged nerves in my back. I take pregablin 150mgsx2 daily and I use a patch on my back at night which helps a bit. Some nights are bad and I often have to take another pill before I can get back to sleep.
U gave Chiari and a cyst on my spine! They are hoping the Chiari fixed the nerve damage! What do you think? I'm having surgery on Sept 4th and I'm scared and my husband don't want me to have the surgery! I dnt know what to do! Any help would be great!!
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Thanks @kjh2017 for sharing more of your experience. It can be so confusing and frustrating to navigate the waters of differing opinions and recommendations. In case you're interested, we have several active discussion groups about EDS and scoliosis. You may want to check these out.
- EDS https://connect.mayoclinic.org/discussion/eds/
- Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/
- Scoliosis - Introduce yourself and meet others https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/