I was diagnosed with a spinal dural fistula at the T6 level in 2007. First, I had an embolization, which worked–for 3 months. Then the fistula recruited another feeder vein, and all my symptoms returned, causing me to be unable to stand upright. Then, in early 2008, I had the fistula excised through a laminectomy.
Soon, I was able to stand again. I regained about 85% of my functions, although I was beset by the usual neurological deficits … burning, tingling, constant pain at a 1 or 2 level from the waist down, slow transit consipation, etc. etc. I was good with this, though, as I was able to live a basically (ab)normal life.
Then, unfortunately, about 3 years ago (in 2022) my symptoms began to re-emerge. Stiffness and spasticity increased. Pain went up to a constant 3 or 4. I had to use a cane to get around. Now I have to use a walker.
I had another angiogram in 2024 because my neurologists/neurosurgeons saw something hinky in my MRIs, and everyone assumed my fistula was coming back. Wrong. The only thing they found in my spine was an Arachnoid Cyst … and everyone swore it had nothing to do with my symptoms.
Now, after cervical, thoracic, and lumbar MRIs, all my doctors are at a loss. No one can explain what’s happening to me. All they say is I’m getting old (I’m 68) and my system is losing the resiliency of youth, causing the re-emergence of symptoms.
Frankly, this is NOT a diagnosis. If you can’t explain the mechanism, you’re explaining nothing. You’re just saying a diagnosis is beyond your expertise.
I’ve scheduled a couple more MRIs, to see if there’s any change from the last batch 10 months ago. I’m open to ideas. Has anyone gone through a similar scenario? Please, let me know. Also, I’m looking for medical providers willing to go the extra mile to achieve a real diagnosis. If anyone knows of one such, please, let me know.
Thanks, everyone … and keep the faith!
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Not great news for sure, but I’m always a believer in seeking further expertise! Are you still with he original team or are they a new group? I’d be knocking on another door for opinion for sure. I don’t buy the age explanation either, have you thought about sending your scans to Barrows? John.
I don’t really have a “team” now, just bouncing around from dr to dr. All the drs from my first go-around are either dead or retired … it was almost 20 years ago, after all. And who or what are Barrows? Let me know and how to contact them. THANKS!
It is Barrows Neurological Institute in Phoenix. They have a great “second opinion” process. World leaders in a lot of areas.