I’ve posted here before about my chronic health issues, and now it looks like I might possibly have tethered cord syndrome. The doctor casually suggested it and then as she did more research about testing for it, she is feeling stronger in the possibility that I could have it. It would explain some various things, mostly my insanely large bladder which has grown due to the fact that I retain urine for way too long due to missed signals. Does anyone have this? Looking for resources and possible support. I am possibly going to be tested by MRI this summer, after finals are over for school.
Well I know when my daughter’s specialist had mentioned it, it was because she was constantly soiling herself, not really growing, and her constantly complaining of lower back pain as well as flank pain. It was ruled out as a possibility.
If you do have tethered cord, hopefully the nerve impairment can be reversed.
I had tethered cord release almost two years ago in my 30’s. In retrospect there were subtle symptoms my whole life, but it got to the point where I was between the rock and hard place. I decided to take a risk with surgery and play the odds: 50% neither gain nor lose function, 25% have improved function, and 25% get worse.
How, those numbers are HIGHLY dependent on you individual case AND THE SURGEON. I also have Ehlers Danlos Syndrome so I made sure the surgeon I chose was intimately aware of the precautions that needed to be taken. I decided to go ahead with surgery because I was already using a wheelchair about 50% of the time. Worst case was that I hit fast forward and ended up in a chair full time, which was where I was headed without surgery.
Some issues held ground which was good. A few have improved along with great physical therapy and some medication modifications.
Be sure you are screen for Ehlers Danlos Syndrome or any other connective tissue disorder BEFORE surgery.
I’m absolutely positive that I do not have EDS, I’ve got 4 good friends with that and they’ve all urged me to get checked so I am for sure good that part thankfully! I’m going to hopefully get an MRI in 2-3 weeks, to see if I really do have it or not.
Yes, I have EDS and tethered cord along with some other spine issues. I have not had the cord release yet.
Hi hi! I have hEDS and am suspected for occult tethered cord. I am traveling to Dr. Petra Klinge’s office end of February in Rhode Island. She’s not available unfortunately so I’m meeting with another doctor she referred me to, Dr. Sullivan. I can keep you posted on whether or not they recommend detethering surgery for me and how that goes.
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