To release or not to release...
So I saw my neurosurgeon today. My Mri shows a pretty big difference since my last one back in 2009 (it's taken me that long to find a neuro who is familiar with adults and sb). Basically my cord is re-tethered and the scar tissue/fluid/whatever he has increased quite a bit. He explained that he almost never recommends tethered cord release surgeries for adults because they "never improve function and carry such high risks". But in my case he said surgery might be beneficial. He also said there is a minimally invasive procedure (they don't use it on pediatrics yet, not sure why) where only a very small incision is made. This helps to reduce the chances of spinal cord fluid leakage and the procedure requires maybe a one night hospital stay at most. Outside of that it's sounded basically the same as a regular release.
Prior to this appointment I had no intention of having surgery. I have discovered that using a wheelchair helps relieve the pain/pressure in my back. I had planned on finalizing my wheelchair order and using the chair and some lifestyle changes to manage my progressing symptoms. Is this a ridiculous idea?
I have a multitude of health problems and having surgery of any kind is very hard on my body. I'm just now finally recovering from shoulder surgery and because of that surgery I lost my job. I'm only working part time and the job I have is very physical, often outdoors or in a house where the doors are opened constantly leading to warm temperatures. I can not afford to be out of work for the 6 or whatever weeks of recovery. But because of the shoulder surgery I have met both my deductible and my out of pocket maximum so the surgery would potentially be free if I have it before the end of the year.
Is it stupid to invest in equipment instead of surgery? I am so anxious to get my life back. I feel so trapped right now since I either have to limit my activities or suffer in pain for days or weeks but I don't want to rush into this.
lipomyelomeningocele, tethered cord, nerve damage began as a young adult, still have lots to learn about living with SB!