Has anyone tried this glycerin rhizotomy for atypical pain? I am at my wits end, and need to try something. I'm curious about this, as it seems to be much less invasive than MVD and last for 1 - 6 years. Sounds like if it didn't help, there wouldn't be much long term harm in trying it. I'm particularly interested in Canadian patients who have had this, and where they went for it, but any information would be great. Thanks!
Ducky
I had a glycerine rhizotomy in July, it helped me most with the lightning strike pain, but sad to say it didnt do anything for the boring pain in my ear or the teeth feeling like they all need a root canal. I did find that antidepressants and narcotics helped me with the atn pain, but I am scheduled to have an mvd. Having an mvd is a personal choice, i hate being on all these medications and my body doesnt like it as well. I am pretty functional on the drugs now, but I cant work because I drive about 100 miles a day as an insurance adjuster, and driving on narcotics is a liability for my company. I do drive occasionally but not long distances.
I will say the neurosurgeon that did the rhizotomy did say that he was doing it as an experiment (ie, lab rat) with me to see if I responded, and he said that some people get total relief and others do not. It is something to talk to your neuro about if nothing else.
The atn2 pain is a bugger and I feel your pain,, litterally and figurativly...it sucks
Wish you well
Wendy
Thanks for the info! I just saw my neuro and she warned me about 'quack' treatments. I actually don't think she knew what the glycerol rhizotomy was! The only place I know of in Canada that does it is in Winnipeg, very far from where I live, so there is that to consider. That's interesting that the procedure only worked for the sharp pains. I, too, suffer the most mentally from the dull, boring pain in my jaw. The short term attacks are almost easier to bear. I can't take any drugs, narcotic or otherwise, while working, though I've tried Tegretol on 3 different month-long vacations. It didn't work for me at any levels up to 800mg. May I ask where you had your rhizotomy done? I appreciate all the info! Good luck.
Ducky
I had the rhizotomy done at Johns Hopkins, Dr. Michael Lim, he actually has a very good video on his site, its about an hour long and goes over all the proceedures for this, its really informative if nothing else. The only issue with Hopkins is, they dont really deal with the type 2 pain, so he sent me to Dr. Jeffery Brown in Long Island NY, thats where I am having the mvd done. Dr. Brown isnt sure he will cure the ear pain, but thinks he will and at least get rid of all the other.
I live in Delaware, about 4 hours from the hospital so I understand the drive, but I figure if this doctor can help me, its worth it and I have a friend that is a nurse that offered to take me, she has relatives up there she can visit as well, so its kind of a vacation for her, not so much for me lol.
The ear pain is the worst, it wears you down I have been to the point of utter exhaustion from it, but the anti depressant,celexia really helped. Only bad side is I gained weight on it...grrr.
and you can ask away, i am an open book and brutally honest, maybe too much for some people, lol
Wendy
Ducky, Have you thought about emailing Winnipeg (there’s an email address on the site) to get an opinion from the neurosurgeon? Or maybe your doctor could? It wouldn’t hurt to see what kind of response you’d get? I’m in Alberta, looking into MVD. I will email Winnipeg for a second opinion regardless of what neurosurgeon here in Alberta says, my appt with him is oct. 10th.
Knowledge is power.
Good luck ! (( hugs ))
Hi Mimi,
Yes, I emailed Winnipeg months ago but never heard back. I am going to get a bone scan first and see what the results are before pursuing the rhizotomy issue further, I think. I'm in Newfoundland, so going to Hopkins is an option as well, assuming I have to pay for it all myself! I'm in the information gathering stage at this point. I'm not sure of the efficacy of this for ATN, which is my biggest concern. Will you keep me posted on what you find out? I'm not sure how much longer the status quo is going to work for me so any info is great. Thanks!
Ducky
When are you having the MVD? Good luck with that! I hope it helps. Will you let me know what happens with it? I'm interested in anything that is not drug-related, as I can't take anything more than Advil and Tylenol while I work, and unfortunately I can't retire for a while! Distance is not an issue if I could be sure that something would help me. Thanks again for all the info, and brutally honest is fine with me. :-) Good luck!
Ducky
crashgirl said:
I had the rhizotomy done at Johns Hopkins, Dr. Michael Lim, he actually has a very good video on his site, its about an hour long and goes over all the proceedures for this, its really informative if nothing else. The only issue with Hopkins is, they dont really deal with the type 2 pain, so he sent me to Dr. Jeffery Brown in Long Island NY, thats where I am having the mvd done. Dr. Brown isnt sure he will cure the ear pain, but thinks he will and at least get rid of all the other.
I live in Delaware, about 4 hours from the hospital so I understand the drive, but I figure if this doctor can help me, its worth it and I have a friend that is a nurse that offered to take me, she has relatives up there she can visit as well, so its kind of a vacation for her, not so much for me lol.
The ear pain is the worst, it wears you down I have been to the point of utter exhaustion from it, but the anti depressant,celexia really helped. Only bad side is I gained weight on it...grrr.
and you can ask away, i am an open book and brutally honest, maybe too much for some people, lol
Wendy
My MVD is October 3rd , I will definitely let everyone know how I am doing afterwards, if you have atypical symptoms I would try dr brown, since hopkins only deals with tn1
thanks for the good wishes, i have all my fingers and toes crossed, per Dr. Brown, he feels he can get rid of 90% of pain if not more and get me drug free. He averages 5-15 years before you would need another surgery if at all. Per his staff he never has anyone come back, or if so very rarely
Wendy
ducky said:
When are you having the MVD? Good luck with that! I hope it helps. Will you let me know what happens with it? I'm interested in anything that is not drug-related, as I can't take anything more than Advil and Tylenol while I work, and unfortunately I can't retire for a while! Distance is not an issue if I could be sure that something would help me. Thanks again for all the info, and brutally honest is fine with me. :-) Good luck!
Ducky
crashgirl said:I had the rhizotomy done at Johns Hopkins, Dr. Michael Lim, he actually has a very good video on his site, its about an hour long and goes over all the proceedures for this, its really informative if nothing else. The only issue with Hopkins is, they dont really deal with the type 2 pain, so he sent me to Dr. Jeffery Brown in Long Island NY, thats where I am having the mvd done. Dr. Brown isnt sure he will cure the ear pain, but thinks he will and at least get rid of all the other.
I live in Delaware, about 4 hours from the hospital so I understand the drive, but I figure if this doctor can help me, its worth it and I have a friend that is a nurse that offered to take me, she has relatives up there she can visit as well, so its kind of a vacation for her, not so much for me lol.
The ear pain is the worst, it wears you down I have been to the point of utter exhaustion from it, but the anti depressant,celexia really helped. Only bad side is I gained weight on it...grrr.
and you can ask away, i am an open book and brutally honest, maybe too much for some people, lol
Wendy