Hi all:
It has been a long journey for me. I havent posted on here in quite some time. Long, long story short- I had my original MVD in September of 2011. I ended up with Anesthesia Dolorosa, a stroke, and foreign accent syndrome from the MVD. I am overcoming my stroke still yet but much much improved, and well- I will always sound British even though I am not; but it was the AD that I could not see past.

I seriously considered ending my life due to pain a while back. Pain doctors kept asking me WHY I was finishing all of my prescribed medicine, I was being run around in medical circles, etc. Not to mention I had to have another surgery because a screw on my titanium plate covering my MVD POPPED OFF and lodged itself behind my right ear. If you have a painful lump behind you ear, believe me- its probably a screw!

But what ticks me off the most is that I wasn't diagnosed or given ANY help at all other than my pain doctor ( thank god for him) until after my neurosurgeon quit and left the hospital. Once that happened, I got REAL HELP. He quit and left in December of this year guys. Just a mere 30 days later, I was diagnosed by an oral surgeon as having AD, and two other neurosurgeons as having AD- all at the same hospital as my original surgeon.

They gave me a few options: Cutting the nerve which they said is out because of my stroke, and some other options which would all be ablative ( damaging) to the Trigeminal nerve.. So in other words, they said don't have the nerve messed with- you do have AD, but it MAY may may fix itself when alot of time passes. (HA!). So they offered me the motor cortex stimulator. They would implant this in my neck though. I asked why I couldnt have the PNS unit and they said they didnt do them there.

So, I found a doctor at a different hospital who does the PNS and his secretary is going to call me on Monday and get me in to see him. ( we have been talking via email, me and this new doc).

Does anyone here have the MCS or the PNS? I feel alone. Really alone. I am indecisive for which I want. The MCS will make the pain just turn into a tingle. I can live with tingling. BUT you are limited with the MCS system: You cant exercise alot, bounce and dance, etc. And, other things can set it off and you can get shocked! I am a huge exercise buff, so I am not seeing how I am to live my life not being able to bend, twist, dance, jump rope, etc.

The PNS from what I understand doesn't take the pain and turn it into a tingle. You still have the pain, but the more the pain gets- you just turn up the machine. Am I getting this right? Does the pain tingle with a PNS unit or just decrease dramatically?

I want to try trials of both of these machines if insurance will let me. To get the MCS implanted, you get a needle to the neck area much like having an epidural needle stuck in there. Way to freak me out! There is no way in heck they are even putting that trial on me for the MCS if they dont knock me out.

Can anyone with either of these machines sort of guide me? Which do you have? Where is it in your body? And please tell me that you quality of life has returned. That is the biggest thing for me- just a loss of life. I am usually curled up somewhere writhing in pain too much to even talk. I want my life back. If I have to be the bionic woman then so what!

Hi, I am looking into a PNS, a peripheral nerve stimulator, it does not go on your spinal cord but rather they implant leads which direct impulses to the affected areas of pain. I have NOT had anything else that worked and this is my only shot at relief. I have been researching it and have talked to 2 Neuro surgeons about it and they think it might really work. Read about it on the Internet and talk to your dr. Don't give up!