I'm new to the site and everyone seems great. A little about myself. I was diagnosed with TN 14 years ago when I was 19. I've had 2 MVD"s and a Rhizitomy. My last MVD was 6 years ago and I get a couple attacks a year but medication will help to stop them quickly. I just had an attack start last week and it has been very bad. medication is kind of helping.
I have been reading about a shot called a glycerol shot. I was wondering if anyone hs had this and if they have had any success with it. I go see The doctor in a couple days and I want to bring it up if it works. Thanks for your input.
I have not had this myself but I can tell you there has been tons of discussions in the past about these shots. If you put key words in the search box at page top right you will see what is there. All the best with this and I hope you will come back and tell us all what you decide.
Glycerol Rhizotomy involves creating a lesion along the trigeminal distribution by injecting glycerol through a hollow probe inserted through the cheek. If I'm recalling correctly, over 50% of all patients have pain recurrence within three years, but the procedure can be repeated. It is probably less expensive (in the US) than any other peripheral surgical procedure. But it's the least effective of the five commonly used surgeries.
is it the least invasive. is it the same as burning the nerve. there are no guarantees with any procedure. surgery for me would mean more scar tissue, even leads. It really depends on your case. i have listed the info as to finding competent drs in a not very competent state. I hate to say that, but it seems to be true.
elaine48 said:in my case, it may be the least dangerous. deciding on which dr. i was nowhere without the board. i cannot tell you how much you have helped.
My doc told me that they don't want me to do it. This is the first time I saw him and I wasn't too happy with him.
David, did your doc indicate WHY he didn't want you to do a glycerol rhizotomy? That's often more important than yes or no....
This is my most likely plan.
Whats your thoughts about this ?
I'm sorry Elaine -- for which of us was your question? I think you already know my thoughts about Rhizotomy: because your face pain was an outcome of plastic surgery rather than a spontaneous emergence, I think your risks with Rhizotomy or any other destructive procedure would be high for relatively little probability of improvement.
Actually i didnt. why is that??
I just had my second glycerol rhizotomy yesterday. My scalp is totally numb, my left eye is VERY numb, and the numbness has crept down to my mouth (which is the only place I had the TN pain. I'm hoping the numbness will let up a bit in time because it is annoying and I feel like my eye could be scratched without me knowing it. I have MS, so the rhizotomy was the only pain reduction alternative that was deemed effective for me. The MVD wouldn't likely work in my case. I'll let you know how this settles out. I do hope the eye numbness resolves without injury to my eye. Anyone else want to share their experience with repeated glycerol rhizotomy?
This isn't my personal experience, but rather a result of 17 years of studying the literature on behalf of other patients. If your eye feels "numb" then talk with your doctor to determine if your tearing reflex has been interrupted. If it has, then you'll need regular irrigation to replace tears which keep your cornea from being scratched or ulcerated. FYI, Glycerol is one of the two procedures with the least persistent pain relief. But unlike Gamma Knife, it can be repeated multiple times for some patients. I've talked with a few who have had five or six glycerol rhizotomies, at intervals of a year or two.
Regards and best,