Hi all,
I've been a lurker for a while here, and Dear lovely BMW told me about this thread that she had going here on NT. I'm signed up for PNS on July 26. I have a mixture of excitement and trepidation, and am praying and hoping with all my might that things work out with this surgery.
A little history...I began feeling pain somewhere back in 2007, the usual - thought is was a sinus infection / tooth sensitivity / eye condition until it broke through the NSAIDS that I was taking for it and went gangbusters. I had one neuro for about 6 months that tried to convince me that it was "psychogenic". I tried with all of my might to believe that, (with more than a little resentment of this guy for thinking that about me), but the pain was so rapidly escalating that I requested a second opinion, and got to another neuro, this one the Chief of Neurology at another hospital. He got me diagnosed through well-placed nerve blocks, then referred me for an MVD.
We did the MVD in 2008, and, after miriad complications due to high CSF presssure, found that it gave mixed results. The sharp stabs were gone, but the &*%$# (
) constant pain was still there. This was SO disheartening. I'm sure many of you have been down this road too.
So we talked about the high CSF pressure, (referred to by my doctors as Intercranial Hypertension/Pseudotumor Cerebri) and decided to see if it may have been the THAT that was causing the pain. So I had a shunt placed on mid 2008. It's called a VP shunt, and it taked excess CSF away from my brain and delivers it to my abdomen, where my body reabsorbs it. This surgery should also have been simple, but I had a seizure and coded. My husband was there and had been about to leave to go to the bathroom when it happened. So he screamed for help and they got to me in time. The unfortunate outcome of all of this is that the pain was STILL there.
So spring forward to today. I am still fighting the type 2 pain, and it is with me almost daily. Those days that it doesn't show up are like small gifts from heaven. I cherish them. Otherwise I am on that strange brew of antiseizure meds, antidepressants, and narcotics, just trying to make it through each day. In spite of all of this, which I know you all can identify with, I make it a point to count my blessings every day, and they are too many to count. I am lucky, all things considered. I have love, and a home, and enough $ for food and stuff, so, life is good.
We are more than a little fearful of opening my brain up anymore, so we are VERY hopeful that the PNS will do the job. I have realistic expectations, however, and am aware of the limitations that it has. While I wish for the "magic bullet" someday, I know that it is not likely. So I will take what I can get in the meantime.
Also, this is the first of my neurosurgeon's trigeminal stims. He has done others. like for ON, but not this one. I am very confident in his skills - he has helped many, many people through DBS and MCS, so he is highly skilled - but this will nonetheless be his first. I know that it has been a rocky road for me, but I do not hold him resposible for my unusual issues. I also have much arachnoid scarring in my brain, called Arachnoiditis, which also complicates it all.
So I will take any and all prayers that you might have to get this done and have it done right.
Like BMW says, PEACE, and love to everyone here.
and Mark, thank you for your kind words and prayers
I will keep you posted.
Mylastnerve/Lily