Sorry it has taken me so long to reply and also I can't even put into words for the emotions I feel for what you are going through. I have not posted because I live on the I near banks of north Carolina. this is where the hurricane Earl glanced. they expected it to be fairly nigh storm so I had a lot of preparation to do. we have 2 boats which had to be taken out of water and everything secured on dock, around house.... we were lucky, the storm petered out and it was nothing really. have lived on coast for years, so I am used to this, just takes a lot of work.
about your questions. My ON pain feels like TN kind of, but in back of head. my pain starts at base of neck and runs like a rams horn and into my eye. I have constant debilitating pain. it feels likeI have a steel bear trap clamped I to my head and it is just gripping away. I get sharp stabbing pain and shocks. it is with me 24 hrs a day and never stops. I also get pain thru my left eye, which they say that pain is probably like cluster headache pain. it comes and goes on and off all day long. the pain is so severe, it makes me nauseous and I occasionally throw up from it. I have a hard time eating and in the past month it has been so bad, I have lost 20 pounds. I cannot afford to loose anymore weight. I have not been able to eat so far today from pain, keep throwing it back up.
I am using a high dose fentanyl patch and percocet for break thru pain. I have been thru all the anti seizure drugs and anti depressants and none of them work any longer even at the max dosages. I am 46 and can't move without the narcotics and with them I can barely function and then only some of the time. I cannot live and that is what keeps me trying to get better. it is a very hard decision and a very scary one. I do know the risks and know I do have a chance of having your problems, but eternal optimism, horrid debilitating pain and not being able to function keep me trying.
I have had a total of three surgeries. my first MVD was not very bad considering it was brain surgery, but I was left with the shredded nerve. my second MVd was harder. I woke up with intense head pain and they discovered I had excesst air trapped in my head. I was ordered flat on my back for days with oxygen in the hopes that it would dissipate the excess air. it was really horrible. I could have had a lumbar puncture and then I had a 20 % chance of having to have a bleed. I choose to wait it put and see if ingot better. it did go away. took several weeks.
the second MVD left me with no more TN pain. I had a third surgery to explore my occipital nerve and find the cause for the Intense pain in the back and side of head. they discovered my nerve shredded, probably from the retractor. I did not have thes first MVD in Pittsburgh. The Occipital nerve was shredded in the first MVD.
it has been 4 months since my third surgery. I came home and decided to see if the pain got better, if I could treat with drugs.... the usual nerve drugs no longer work at all. the strong narcotics take about 20% of the top pain off at the most. the pain is not getting better, it is getting progressively worse. I also wanted to look at my different surgical options, the different surgeons and try to make an informed choice if I did another surgery. I have had help from a dr here in my home town to try to figure what my next step would be.
I had a choice of having a stimulator implant, which is not as invasive as MVD. it may or may not work. I do not like the idea of something in my body and having the leads... it also will not end my pain, but may make it small enough to be able to function. I had a choice of 2 dr I liked, one in Arizona and one it Pitt. this is all they do. stimulator implants and they concentrate on the occipital.
my other option is where they go in at the c2 and crack the spine and get to the origin oft the occipital nerve and basically cut it. the statistics for this surgery is 90% success and 10% with the pain the same or worse. my surgeon for this said these are not the worst odds, but not the greatest either. he was very honest with me and gave me people to talk to that have had both outcomes to speak directly with. it is a rare surgery and they only preform it couple of times a year.
when I came home in April, I really had hoped to adjust, the nerve to calm down and be able to live with meds, but I cannot. if I do not take the narcotics, I really cannot move the pain is so severe. I understand your story of laying, holding your head, crying and not even being able to talk. that is what it is like for me as my pain meds wear off. I do have occasionally better days, but these are still horrible. I continue to try to keep putting my foot in front of the other and trying to stay a Fu crooning human being.
I have chosen to try the stim implant and leave for Pittsburgh on Sept 6. I will be there for at least 2 weeks if everything goes well. I am very aware of all the complications I could have, even from just another surgery, but I feel I have no choice, but to try something. I also know I could regret it. I am sure you wish you could take back having ever come to America.
I am so sorry for the loss that you have had. I hope that things slowly get better and the pain reduces. I will be in Pitt until Sept 20. I would be glad to meet with you, if I am able. it can be very nice to talk and see someone who understands. Also, please continue to update us.

Easygoing