MVD in September 2011. AD Diagnosed after neurosurgeon that did my surgery left the clinic in January of 2013. Notice how they waited almost two years to just give me the danged diagnosis. Nice. Been running around to a few doctors lately since then: A different neuro, and two different pain doctors- all with the intent of having a spinal stim implanted to control the pain of AD. It CONTROLS the pain-it doesnt cure it.
I had the implant on Thursday; June 20th. Just to let anyone considering this know, you are awake for this procedure. You have to be, because they will turn the stimulator ON while they are in there to see if they are in the right area. The FIRST time they turned it on, the stimulator was in my chin but my mouth pain up and walked away. I knew they were in the right area- but since he wasnt in my mouth ( my AD affected my mouth NOT my face, NOT my jaw, etc), he wanted to see if he could get it directly in my mouth. I know, that just sounded so weird HAHA. Anyways, unfortunately, he couldnt seem to be able to get the stimulator leads back in the right place. He was stimuling my fingers, my arm, my shoulder, my EAR, etc etc etc but just couldnt seem to get back to that spot. The closest he could get was shoulder and neck extending into my chin.
They just gave me some numbing shots for this procedure then stuck an epiduarl in me. Placement was T1. They wanted to go through C1 which is the neck. I told them before hand that they WOULD NOT be able to go in my neck, but instead of xraying me they disregarded me and still planned for my neck. I was on the table when they were snapping pictures ( this happens religiously while they are placing the lead) and he said :"yep, you were right, you have extensive narrowing of the disks, I cannot go in through your neck". DUH! So anyways,
they went in through T1. To note: I was NOT opened fully for my stimulator trial. My doctor is a rare breed and had invented a way to make a small slit in the skin and slide it up UNDER the skin and make it relatively an easy procedure. I was in and out in 30 minutes. I could just feel pressure. The only thing that hurt was when he was trying to get it as "far up" as he could to reach my brain stem area without going into my brain. That hurt and not to be gross or anything, but I could hear tissue popping. It was nasty. Yeah, that part hurt.
Needless to say though, ,after the procedure, the technician programmed my machine. Every single setting would stimulate my shoulder. Her idea was that if she turned the amps up high enough, it would stimulate the mouth. Yeah.. dumb idea and didnt work.
So my next steps are back to her tomorrow. She is going to try to use some different programs to see if she can get it to stimuate the chin and or mouth instead of my shoulder. If that doesn't work (and in any event) i get it removed on Thursday. After Thursday, I go back to my new neurosurgeon. If what she does tomorrow doesn't help, they are in the wrong area, and my neuro is going to have to implant the trial way deep down in there ( which means a full out incision) to try to capture the pain. IF THAT doesn't work, he is going to go peripherally and wire it behind my ear, through my face and into my mouth.
I for sure have one more trial coming up- maybe two. After the trial, I will go in for the big implant. IF any of the trials WORK. If they dont work, no permanent implant. I can already tell you this didnt work. There is no sense in my turning it on as it stims my shoulder and is painful.
I just wanted to point out that the blood you see is just blood they didnt wipe off after the procedure. They dont want the leads moving when they do this, so they do NOT clean the lead. They just throw some tape down to secure the location of where they went in. But man is it itchy as heck.
IF YOU HAVE AD, AND IF A PAIN IMPLANT STIMULATOR HAS NOT BEEN SUGGESTED TO YOU OR IF YOU DO NOT KNOW WHAT IT IS, YOU ARE MISSING OUT. This IS your only hope for AD, unless you want real risky brain surgeries.
I tried to ADD photos to my profile, but instead it replaced my current default photo. I will mess with it more when I have more time. I also have other photos. I will post them for anyone who has this.
DO NOT HAVE AN MVD FOR ATYPICAL OR T11 PAIN. Just don't unless you want all this. They wont tell you that the nerve is already beat to heck and back and damaged so bad that it became T11 type pain and that doing an MVD on an already badly beaten up nerve WILL CAUSE THIS. They just want to line their pockets. That was my experience. I have been through the danged MILL.
I also refuse to get legally married until I can kiss my hubby and have it not hurt. That is how bad this messed up my life. I wouldnt wish it on my worse enemy.