Has anyone had this procedure done?(Percutaneous Glycerol Rhizotomy) I would like to hear the story because the surgeon that i saw today is suggesting this procedure but i am worried about the painful numbing that can happen and is not reversable.
There is a larger issue with Glycerol Rhizotomy to be concerned about than painful numbing (Anesthesia Dolorosa). This procedure has a record of very limited pain relief -- that is, the probability of pain recurrence is at least 50/50 after two years. The procedure can be done again, but over time its positive effects tend to last even shorter periods. If you have the option, and have a type of pain that is considered to be responsive to a destructive procedure, RF Rhizotomy has better outcome statistics. If you're dealing with ATN pain, then none of the surgeries has a strong record.
I realize from reading your profile that you have a lot of fear with regard to micro vascular decompression. But I really don't see why that is. Have you talked recently with a neurosurgeon about Micro Vascular Decompression? Has anyone worked you up for a medication change?
Regards, Red
Yes I tried to speak to him about the mvd but he kept pushing the other procedure and said that everything depends on my upcoming MRI, my neurologist has been steadily increasing my meds but the benefit is minimal and it is making me very sick so he says that since I have been dealing with this for so many years now that maybe it was time to speak to a surgeon.
It does seem like time to speak with a surgeon -- but not necessarily one whose preference is for glycerol rhizotomy. I think you need a second referral to somebody who performs RF Rhizotomy or MVD. Likewise be advised: MRI should be treated as a possible confirmation of nerve compressions -- but if none are seen in the images, that doesn't mean they aren't there. MVD procedures frequently find them even when a previous MRI has not.
A more meaningful question is what is the total pattern of your pain and how did it start. If you began with sharp stabs of "typical" type I TN, then MVD may be a more reasonable option than if you began with the constant achy, burning boring pain of "atypical" type II TN.
Regards and best,
Red
For years it was the shar p stabbing pains and just on one side, it has just been the last couple years with the changes.
I really don’t want the procedure that he is recommending because if I have to have anything done I want it to be just once if possible. The mvd seems like a harder recovery but a lot less long term affects and a higher success rate so I am pushing for that.
With your history, a lot of neurosurgeons would consider you a candidate for MVD. You may need a different doctor to be accepted for one. If you need help locating a doctor who has produced good results, then start with the patient support groups at the Facial Pain Association: http://www.fpa-support.org/find-help/tna-support-network-3/. People who regularly participate in such groups will often know of physicians who have been successful.
Regards and best,
Red
Thank you for the link, my doctor is not on the list and the closest that is on the list is 5 hours away so I guess I am really limited
Contact the support group leaders, Chica, to see if they know of someone closer. YOU ARE NOT LIMITED. And don't let yourself be conned into thinking that you are. There are plenty of neurosurgeons in Australia who have been trained better than the folks you've talked with so far.
Regards
OK I will, thanks so much
I've had two GR's..one about three weeks ago, and one three years ago. The first one did not result in permanent numbness, but the second one has. The TN came back with a vengeance this winter. I was eating only pureed foods for months. When drugs were leaving me too whacked out to function, I decided to have a second procedure. I didn't know the risks of permanent numbness increased with repeated procedures. I have MS and the glycerol rhizotomy was felt to be my best alternative to drugs. Sometimes there aren't a lot of choices. The laser focused rhizotomy can be more accurately targeted and may spare one the extended period of numbness about the face and scalp. Should I have a recurrence of the TN, I'll definitely go with the treatment that can be better targeted.
My thoughts on that subject :
my doctor last week also wanted to do me the RF Rhizotomy ...(He called it Ablation of the Gasserian gangellion) something like that.
i wonder is it the same Rhizotomy as the Glycerol Rhizotomy ?
anyway - he also talked about numbness - but other side effects.. he said for a year - when the nerve construct itself.. i can feel the pain in very "annoying ways".
i have a tip for you - my doctor done me a nerve injection so i can feel how this numbing of the face feels. the shot lasted for only 5 minutes or so.. and i felt numbing.. tickling of the face. it's not realy nice (and the pain DIDN'T go away !!!!) .. so maybe you can ask him that - so you can know what to expect.
my doctor also mentioned MVD but - suggested the RF RHIZOTOMY/
i was too disoriented and forgot to ask him - how can i suggest MVD if the MRI is fine.. and why does he prefer the RF RIZOTOMY.
my guess is - that probobaly many doctors go with what their field is.. they want to proove success in thier field... if a doctor doesn't do the MVD.. of course he will recommend a procedure he is aware of.
i do agree with your "gut feeling" for the MVD.. althout of course it's frigethening .. no one can tell what happens. does you MRI showes anything ?
RF Rhizotomy is performed with a probe, the end of which is heated by passage of radio frequency current. Glycerol Rhizotomy is done by injecting a type of alcohol through the probe, and is somewhat less "targeted". It is also significantly less persistent and effective than RF.
Regards Red
Red.
one of my dentist specialist warned me and said - that if the injectioni did to the nerve didn't eliminate the pain...that in no circumstances should i do the RF Rhizotomy.
and i understand his logic. he said had it been the nerve - the injection would affect even for a while.
when i asked my neuroligist ... he said - that the fact that my face got numbed.. (even for just 5 minutes or so... and even if the pain never did go away- that's enough for him).
from your knowledge.. .what do you think of these two theories ? i can how each of them is right.
my thought - would be opposite. had i seen that the nerve injection would effect and leave me pain-free it would have helped me make a decision to "shut down" the nerve in more permenant way.
but - the injections didn't effect the pain.. so why should the RF Rhizotomy effect differntly ?(i've done "simple RF" once - that didn't show and decrease in pain ?
Nir, I'm having a hard time understanding your written English (and precision is important in the decision you are about to make).
Do I understand properly that a dentist has told you that if a nerve block doesn't stop the pain, then RF Rhizotomy isn't likely to either? Because if that's what you heard, then I'm afraid the dentist was very badly misinformed. RF Rhizotomy "partially" shuts down the nerve by placing a controlled scar at a selected position along the nerve. The intention is to do that without creating total numbness, but numbness does occur in some people, regardless of the intention.
You can have facial numbness from any of the percutaneous procedures or from MVD -- and I don't see a great deal of difference in statistics for facial numbness between the three major types of Rhizotomy (RF, Balloon, and Glycerol).
Regards and best,
Red
Red,
you understood right.
the dentist told me that if i've done injections to the V2 V3 nerves (and that is what i have done) and it didn't helped (it caused my face to get numb for 5 minutes.. and the pain was still there, even with the numbness).-
than if that's the case - he said the there is no point of doing a "larger" operation to the nerve. cause it's probobaly not the nerve.
logically - he seems right. i mean - if i didn't get relief when "numbing" the nerve.. maybe it's not the nerve.
but - not to disrespect him - he is A DENTIST.. he doesn't know much of nerological issues. it's not in it field. so i take his advice in a limited way.
my neurologist, who has done me the injections explained that the injections aren't strong enough..and they were only to give him indication if i react to them.
i admit - i do fear sometimes that some doctors want to take this cases as a trial for thier experince.. so that's why i wasn't sure the the neurologist was right.. and i decided to postpond the procedure for now (although he is a GOOD doctor.. and he REALLY understood my suffering and tried to help).
he said that with these procedure the healing of the nerve can take up to a year - in which i can experience pain and numbness .. .and that's seems a long time to me.
Hi: TN crushed me out of the blue in Aug of 2011. I had the glycerol injection done in the Nov 2011 and it did help my classic TN type pain by about 1/3 then after a routine acupuncture treatment (which seems to help with my ATN pains) I had a massive relapse.
I think it did help but not nearly enough so I could "live with it" so I then had a Gamma knife procedure done in Jan 2012, which I am just now starting to feel the positive effects, but I am not sure this one is going to do it either.
I remain optimistic that things will improve and I have had made huge strides on learning how to live with this even to the point where I am making good progress on the separation of my mental state and physical state. Anyways, take your time and really evaluate all your options before looking for a quick fix...
Albee - thanks.. . but as you said... you, like me.. .are still trying to find ways.. cause "living with that" - what the pain is still high - it's not thinkable to live like that.
i once said to my doctor.. even a 24/7 pain of level 3 - would be enough.. cause it can drive a person crazy.