Hi everyone, I have felt quite good the last few weeks apart from the back of the crown area that wasn't checked. the doctor hopes it will heal but it hasn't changed one bit so it seems I have to wait a few months to have it taken care of. Meanwhile it gives me the same pain as ON on that one branch. A few days ago when I went to a hospital for rehab physio to get some strength back after laying around for the last few years I had a setback that shocked the begeesus out of me. I am five months out from my first surgery and with my ON I did struggle with severe sound sensitivity which has been the last to go. Most days it's pretty good now. But the noise in the waiting area where I had to register for the physio was so bad on my nerves that within minutes the whole back of my head ... even the right side that had been going well took me to a level 10... I was devastated! I fumbled through the physio and can't really remember much, only that I did only a few minutes on three machines just so the physio could see where my base strength was at. I was freaking the phsyio guy out a bit because he could see that I was in physical pain with constant spasms and really didn't want to do anything but talk about where to start. I went home sobbing and collapsed in bed with what felt like full on ON. I iced and lay quietly for the night and by the next evening I was doing fine. I don't want to sound crazy but I am positive it was the "building noise" with the kids crying in the waiting room, the two televisions were out of sync and there were so many conversations happening that the whole back of my head was spasming. All this to say it sure surprises me so far out of surgery... but I am hoping that because I still have one area not done in surgery thatit could be this area that was referring the pain elsewhere. I am very thankful that I have had the surgery, however, I think each of us wishes we will be part of the 29% who have complete pain relief from these surgeries but realisitically it is under 1/3. However, it has dramatically changed my life for the better already and I am hoping that my surgeon will find the last compressed area and things will be great. I have to post the bad with the good here to make everyone aware that recovery with this surgery is not always a piece of cake. My doctor did say that nerves can take a long time to heal. I still have hope I will one day be part of the completely healed group. hugs, Chloe I am not a medical professional. I sufferered Occipital Neuralgia and had right and left occipital nerve release surgery in 2010.
Before surgery I would throw up almost daily from the severe dizziness and had severe light and sound sensitivity. I stayed in bed, curled up in the fetal position wishing I had the courage to kill myself. If I didn't take a cocktail of antiseizure, opiates and muscle relaxers I suffered hundreds of electric shock type pains per day in my head and had a constant migraine type pain 24/7 from july 2008. I lay grieving for my life that once was the friends who once were and the void in my future.
Right surgery 100% relief; left surgery, scarring grabbed a crown nerve and I had surgery again to relieve that june 2011. Surgery really helped but was left with daily migraines triggered by certain sound pitches making living in this noisy world very difficult
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