So, I had decompression surgery in mid-April and have recovered from the experience up to a point. Basically, I feel the same as before the decompression. Prior to surgery, I was experiencing extreme fatigue, stumbling, balance problems, "seeing stars" and almost fainting, tinnitus, pressure in my head, myoclonus (involuntary jerking movements), weak/stiff muscles, memory/word recall problems, and headaches. Four months post-op, I am no longer seeing stars or having gray-outs and the stumbling problem does seem to have improved a lot. My balance seems a bit better and I'm not falling over. Everything else is the same.
I know that with decompression surgery, results vary widely, but has anyone had a similar experience? Some of my symptoms are scary - it's like my body is still constantly nagging, "Something's wrong, something's wrong!" Could this mean my surgery was inadequate? Or could this be a sign of dysautonomia or some other condition? Or should I give it a few more months before trying to draw any conclusions?
Any thoughts are welcome.
Mizfeldy, im sorry you are still having pain and issues. Considering your decompression as a failure or inadequate is a tough place to be, and I can relate those feelings- so sorry. It is possible that you could continue to heal out of your symptoms. It is also possible that your journey still a few more turns…I think we know ourselves well and if something is off we just know. Have you had a post op MRI? Do you have a syrinx (those take longer to shrink and heal)? Did you have the full decompression with duraplasty and a plate? You are right to consider other conditions too. Dysautonomia can make you feel like you have the flu- complete with headache and dizziness. Check Dinet.org. An electrophysiological cardiologist is best to be tested for these cardiac issues. I developed dysautonomia AFTER my first decompression. Now I just had a second decompression and cranio cervical fusion a couple weeks ago and I think maybe the dysautonomia may be resolved- I haven’t taken my beta blocker since surgery and so far my heart rate is staying low. Yeah!
Another condition to consider is EDS. Not everyone with EDS has the doughy skin so don’t stop there. Google the Brighton Criteria and the Beighton Vriteria. Approx 1 out of 1000 people have Chiari, and 20% of those people also have EDS. EDS can cause cranio cervical instability (abnormal, extra movement of the skull in relation to the spine), and there may also be congenital, structural CCI too, like a basilar invagination or sharp clivo axial angle. It was recommended to me to start wearing a cervical collar when the CCI was suspected- and let me tell you it made a world if difference for the pain. You may want try it and see if makes a difference for you.
I hope you begin to feel better as you heal. If you there are still some stones unturned for you though, please remember you’re not alone!
Hugs Jenn