So I am about a year and a half post op for my AVM
We Found it when I was 25, it was 3cm and in my right Occipital Lobe, I got the Embolization followed the next day by the craniotomy.
I was in pain form Day 1, which I assumed to be expected after such major surgery. But it didn't get better. After about 3 months my Surgeon passed me off to a Pain specialist, he said blatantly that "He doesn't deal with pain" Ok fine. We waited almost 2 months to meet with the Pain specialist, and once we finally do, we find out he doesn't TREAT Neurological pain..at all, and I was still taking the regular narcotic pain medication (having been allergic to Tramadol and intolerant to a few other things they try right off the bat so you aren't stuck on opiates) So we found a Neurological Pain Management and he has been working with me for over a year. We have tried EVERYTHING.
Blood Pressure medication
Anti-convulsants
Migraine Medication
Morphiene
Hydromorphone
Accupuncture
Nerve Block Shots in the occipital nerve region
Hypnosis (worked for my PTSD from the IVs in the hospital, but there were complications when the professional tried to do the work on pain. My Psychologist has been trying to push it on me for a while..it hasn't worked and I want to know what's CAUSING the pain so as to better fix it. Obviously there is something else going on or the hypnosis would have worked like it did with the PTSD stuff)
And finally Botox.I waited a YEAR to try the Botox because I am allergic to over 50 medications. I have a SUPER sensitive system. But they told me Botox would work. Ok Fine.
I went in had 155 units spread over 31 injection sites. Freaking Ow.
I was bed ridden for a week and a half AFTER the Botox. Which then speaking to my Pain Management specialist she said she never hear that before (shocker)
So Here is the Bottom Line, they have exhausted all their options. They don't think the pain pump would be good for me and the implanted electro neuro-simulators are out of the question. You cannot get MRIs or anything with those, so it's out of the question. Plus they deem the success less then the hassle of having them implanted.
So we are back to square one. And were told to go BACK to the Surgeon.
My Theory is that they are diagnosing the pain as Occipital Neuralgia, and treating it as chronic Migraine, but its Neither. If it were the Botox would have done SOMETHING. They told me and I understand that with the Botox there is only a 50% pain reduction, max, so maybe I DID have some relief, but not enough. I still take 15 mg of vicodon a day, 1o mg ov Valium 2x a day, 10 mg of Flexeril 2x a day plus anti-nausea medication every 12 hours as needed, and Maxalt for the occasional extreme migraine (it doesn't help much)
I am wondering if anyone else has had long lasting chronic pain from a craniotomy. What treatments have you tried that have worked, And if you were diagnosed with problems that may fit my situation.
I don't want to spend the rest of my life in pain. I KNOW I am Super lucky to have found my AVM so young without a rupture and to catch it and get it removed. Aside from difficulty with numbers and a little blind spot, I don;t do too bad. I still dance and do artwork, and I want to continue to do these things. But this pain, as I am so sure a LOT of you know..clouds EVERYTHING.
Any help you all can give I would greatly appreciated.