After an unsuccessful MVD performed a year ago, my wife is close to a decision to go ahead with an RF rhizotomy; we have had the pre-op conference with the doctor--who is regarded as highly competent at this procedure.
Her remaining concern is the degree of difficulty associated with the post-op numbness of the lower left cheek (inner & outer), her gums, teeth & left half of the tongue. (I am familiar with the common short-term numbness associated with dental freezing, when your cheek and tongue seem huge and dead, and the dentist warns you to take care not to bite your tongue or cheek. It was weird moving food around on the one side of my mouth.)
So... for those of you who have lived with the post-op consequences of any kind of rhizotomy, have you found it difficult to cope? Have you had trouble biting your tongue or cheek? Have you had dental problems because you didn't feel warning twinges of pain due to a developing cavity or abcess?
I interact daily with 10+ Facebook groups with a focus on chronic face pain. If you like, I can cross-post your inquiry in those forums and digest/summarize the main responses from a potential audience of over 10,000 people, in addition to the responses from members here.
The willingness of 'volunteers with knowledge' to lend help to strangers is one of the finest, highest results of the Internet. Thank you very much for your offer.
Posting is out there to nine groups with an aggregate membership of over 12,000. I will try to digest the responses on Monday or Tuesday. Ping me if you haven't heard from me by then.
Yes. I have serious numbness. It’s been five years and still not used to it. It didn’t happen till after my third one. I don’t bite my cheek but I can’t feel food so I have to be careful. I needed a root canal for a cracked tooth this summer but because I was numb I didn’t get help as soon as I would have normally. Luckily it didn’t get abcessed. Worst is my eye which is numb. They use that to test if you’re out during surgery. I woke up during a biopsy because they tested my eye and didn’t give me enough anesthesia. I wear a Med alert tag so that won’t happen again.
The good thing is most pain does not get through. Best of luck to you.
I thought I would send along the collection of responses I got to your posting. I have so far heard from 13 different people. There might be a few more responses tomorrow.
As you read through this collection, please keep in mind that there are three different kinds of rhizotomy, and patients may have substantially different medical histories prior to having one. That combination means we can't generalize very well from what is represented here. Likewise, the responses of chronic pain patients on Facebook will tend to be dominated by bad outcomes. That's why people are searching for support on Facebook (and here at LWTN) in the first place.
Thank you, Anna, for your reply. It sounds like the road you are traveling is even rougher than Alice's. It is to your credit that despite your pain and suffering, you are still reaching out to help others with info. I guess a main point here is to be absolutely sure of the over-all competence of the neurosurgical team that can do so much good, or so much unintended harm. It seems unbelievable to me that you were inadequately sedated. Sorry for your woes.
Art (& Alice)
Anna Willard said:
Yes. I have serious numbness. It's been five years and still not used to it. It didn't happen till after my third one. I don't bite my cheek but I can't feel food so I have to be careful. I needed a root canal for a cracked tooth this summer but because I was numb I didn't get help as soon as I would have normally. Luckily it didn't get abcessed. Worst is my eye which is numb. They use that to test if you're out during surgery. I woke up during a biopsy because they tested my eye and didn't give me enough anesthesia. I wear a Med alert tag so that won't happen again. The good thing is most pain does not get through. Best of luck to you.
Thank you, Red. I've gone through them all, and, as you suggested, interpreted the information as probably being skewed towards bad experiences. Nonetheless, it is most useful for us to have this info as we make our decision as to whether to proceed to an RF rhizotomy ...or not. (For the last couple weeks, Tegretol did not seem to be effective; suddenly, over the last few days, it seems effective again. This is not the first time we've been on this roller coaster!)
Art & Alice
Richard A. "Red" Lawhern said:
Art and Alice,
I thought I would send along the collection of responses I got to your posting. I have so far heard from 13 different people. There might be a few more responses tomorrow.
As you read through this collection, please keep in mind that there are three different kinds of rhizotomy, and patients may have substantially different medical histories prior to having one. That combination means we can't generalize very well from what is represented here. Likewise, the responses of chronic pain patients on Facebook will tend to be dominated by bad outcomes. That's why people are searching for support on Facebook (and here at LWTN) in the first place.
I truly do not intend to hurt, degrade, or down-play any TN or ATN pain but I must say this: I have ATN 24/7, when I had a glycerol rhizotomy I had all types of weird sensations 24/7 even extreme numbness. However, the pain I had which was sharp, burning, stabbing, knife-like, side of face and head burning pain, I welcomed the previously mentioned symptoms. I could speak, smile, laugh, eat, socialize, all of which I couldn't do because of the other pain(s) I described. I'm sorry but I don't understand how the numbness (etc) is so difficult to deal with and accept after severe TN/ATN pain.
Prudence, I believe your intention is kind. Over the past 19 years of talking with chronic pain patients, I've heard similar sentiments regarding numbness versus agony, a good number of times. For some folks, continuing numbness seems to reinforce a feeling of being out of control of their lives. And for a few people, surface numbness may be mixed up with underlying pain in Anesthesia Dolorosa. So as in much else that is involved in the pain journey, outcomes and responses can vary greatly between individuals.
I'm glad for any improvement that you have experienced.
Thank you, Prudence, for your reply. I'm happy for you that your rhizotomy has given you relief from what was surely a pain-filled life.
My wife's situation is somewhat different: she has other health issues that are painful in addition to TN. Most of her pain related to TN can usually be eased through heavy doses of Tegretol, but there are very unpleasant side-effects. All I am trying to do is provide informed advice to her so she can decide whether or not to proceed with a RF rhizotomy. That is, over all, would it be better for her to gain relief from the TN portion of her pain, or will tongue and cheek biting, and difficulties in chewing and swallowing be a greater burden on her than the side effects of Tegretol and occasional bouts of TN pain?
In your case--unrelenting severe pain on both sides of your face due to ATN/TN (but no other pain-causing whole-body condition mentioned)--it might look like an easy call: get on with the rhizotomy and get over the side effect of indefinite numbness. But in other instances, like Alice's, it's not so cut-and-dried. I'm only trying to not make things worse for her through giving inadequate or incorrect advice. But I'm still happy for you and the relief you've obtained.
Prudence said:
I truly do not intend to hurt, degrade, or down-play any TN or ATN pain but I must say this: I have ATN 24/7, when I had a glycerol rhizotomy I had all types of weird sensations 24/7 even extreme numbness. However, the pain I had which was sharp, burning, stabbing, knife-like, side of face and head burning pain, I welcomed the previously mentioned symptoms. I could speak, smile, laugh, eat, socialize, all of which I couldn't do because of the other pain(s) I described. I'm sorry but I don't understand how the numbness (etc) is so difficult to deal with and accept after severe TN/ATN pain.
Prudence, I believe your intention is kind. Over the past 19 years of talking with chronic pain patients, I've heard similar sentiments regarding numbness versus agony, a good number of times. For some folks, continuing numbness seems to reinforce a feeling of being out of control of their lives. And for a few people, surface numbness may be mixed up with underlying pain in Anesthesia Dolorosa. So as in much else that is involved in the pain journey, outcomes and responses can vary greatly between individuals.
I'm glad for any improvement that you have experienced.
The research at University of Strassburg is certainly interesting. But we should also recall that several of the anti-seizure meds used against chronic neuropathic face pain are in the general class of Sodium blockers. There is more than one mechanism involved in this class of meds.
A number of other groups have been doing work in this area as well. See for instance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3185237/ "Recent Developments Regarding Voltage-Gated Sodium Channel Blockers for the Treatment of Inherited and Acquired Neuropathic Pain Syndromes". The following is a quote from the article:
"At present, most of the clinically available sodium channel blockers used to treat pain are non-selective across sodium channel isoforms and can contribute to cardio-toxicity, motor impairments, and CNS side effects."
The large question to be asked and answered before the approach of the Arstechnica report can be widely applied is "what else does the sodium channel do?" If this channel is primarily dedicated to transmission of pain or sharp sensation, then the chances for safe pain cures may be higher than if it serves a wide variety of other functions that may be affected by such treatments.
It is certainly to be hoped that further research will be done. But as in so many other realms of human activity, a general principle stated by H.L. Menken may apply: "for every problem there is at least one solution that is simple, plausible... and wrong."
Red, Excellent analysis‎! I am very much of the scientific-method bent myself. Great caution is warranted, and sweeping generalizations based on early work must be avoided.
Still, if the various sodium channels and the signaling molecules can eventually be sorted out...
Regards, Art Richard A. "Red" Lawhern said:
The research at University of Strassburg is certainly interesting. But we should also recall that several of the anti-seizure meds used against chronic neuropathic face pain are in the general class of Sodium blockers. There is more than one mechanism involved in this class of meds.
A number of other groups have been doing work in this area as well. See for instance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3185237/ "Recent Developments Regarding Voltage-Gated Sodium Channel Blockers for the Treatment of Inherited and Acquired Neuropathic Pain Syndromes". The following is a quote from the article:
"At present, most of the clinically available sodium channel blockers used to treat pain are non-selective across sodium channel isoforms and can contribute to cardio-toxicity, motor impairments, and CNS side effects."
The large question to be asked and answered before the approach of the Arstechnica report can be widely applied is "what else does the sodium channel do?" If this channel is primarily dedicated to transmission of pain or sharp sensation, then the chances for safe pain cures may be higher than if it serves a wide variety of other functions that may be affected by such treatments.
It is certainly to be hoped that further research will be done. But as in so many other realms of human activity, a general principle stated by H.L. Menken may apply: "for every problem there is at least one solution that is simple, plausible... and wrong."
I underwent an MVD in November 2015 which proved to be unsuccessful. Although the MRI showed significant compression, when the surgeon got in there, he said the artery was not really compressing the nerve. He did the MVD, but also performed a procedure called "nerve combing", where he "roughed up" and separated the nerve fibres, in the hope that would stop the pain signals. It didn't work either. Consequently, I am left with both my pain AND numbness (I'm still on trileptal and gabapentin to control the pain.)
I am numb on the left side of my face in the lower part of my jaw, lip, half my tongue, up the left side of my face close to my ear, and sometimes my left eye/eyelid. It's interesting - although the numbness never goes away, sometimes it actually gets worse as the day goes on and I get a burning sensation in my tongue and lip. Although it usually feels similar to when you go to the dentist, it's different - you have to remember it's just sensory numbness, not muscle numbness. I've noticed some minor problems when I eat - not being able to taste the food as well as I did, hot food causing pain in the numb areas - but no problems chewing or swallowing (I mostly chew on the right side now.) I bit the right side of my tongue twice last week, so I'm more careful now and haven't had any problems.
A friend who's a speech pathologist said that it makes sense there would be difficulties if the tongue is numb and you can't always feel where it is in your mouth.
When I complained to the surgeon about the numbness, he said most people would trade the pain for some numbness - I guess I would have too, if the surgery worked. Now I'm worse off than I was before!
Thank you for your reply.My heart goes out to you for the pain & hardship that you must fight through every day.
Do I understand properly that you had a rhizotomy which, of course, caused numbness, but didn't stop the pain. What type of rhizotomy was performed? Radio frequency (RF)? Alcohol injection? Glycerol injection? Or balloon compression?
Did your unsuccessful MVD operation take place after your rhizotomy? This amounts to unimaginable suffering. You are one tough lady to be in this condition and still reach out to try to help and advise others, and your efforts are much appreciated.
My wife takes up to eight 200 mg Tegretol daily to control her TN pain, but even with this level of medication continues to suffer pain strikes. Is your pain generally controlled with the Trileptol and Gabapentin? Dosages?
We are about to make our decision re: RF rhizotomy, but any information would still be useful. Again, thanks for sharing your experiences.
Art (and Alice)
Barbara said:
I underwent an MVD in November 2015 which proved to be unsuccessful. Although the MRI showed significant compression, when the surgeon got in there, he said the artery was not really compressing the nerve. He did the MVD, but also performed a procedure called "nerve combing", where he "roughed up" and separated the nerve fibres, in the hope that would stop the pain signals. It didn't work either. Consequently, I am left with both my pain AND numbness (I'm still on trileptal and gabapentin to control the pain.)
I am numb on the left side of my face in the lower part of my jaw, lip, half my tongue, up the left side of my face close to my ear, and sometimes my left eye/eyelid. It's interesting - although the numbness never goes away, sometimes it actually gets worse as the day goes on and I get a burning sensation in my tongue and lip. Although it usually feels similar to when you go to the dentist, it's different - you have to remember it's just sensory numbness, not muscle numbness. I've noticed some minor problems when I eat - not being able to taste the food as well as I did, hot food causing pain in the numb areas - but no problems chewing or swallowing (I mostly chew on the right side now.) I bit the right side of my tongue twice last week, so I'm more careful now and haven't had any problems.
A friend who's a speech pathologist said that it makes sense there would be difficulties if the tongue is numb and you can't always feel where it is in your mouth.
When I complained to the surgeon about the numbness, he said most people would trade the pain for some numbness - I guess I would have too, if the surgery worked. Now I'm worse off than I was before!
Thank you for your reply. I apologize if I wasn't clear: I have not had a rhizotomy - at least not in the typical sense. During my MVD surgery the surgeon also performed a different procedure, "nerve combing", which also damages the nerve and causes numbness. There is a similar procedure called "partial sensory rhizotomy" where they actually cut through the nerve fibers. In any case, the outcome is the same: permanent numbness.
I take pretty low doses of the meds because I have extreme sensitivity to them (Trileptal 600-900 mg daily, Gabapentin 900 mg daily.) I have also only had TN symptoms since last June and was diagnosed at the beginning of August. I was quick to do the surgery because of my medication sensitivity and the fact that the surgery is supposed to be more effective closer to onset of symptoms.
While the medication does control the pain for the most part, I do get breakthrough pain, and from what I read and have been told, the medication loses its efficacy over time and you have to increase the amount you take. Since I've only really had symptoms for 7 months, I am not looking forward to a lifetime of this.
Although the numbness is extremely annoying, if a procedure can take away the pain, I believe that the tradeoff would be worth it.
I am so very sorry about your wife's ordeal, and I hope that the rhizotomy helps. You sound like a wonderful, caring husband!
I'm a civil engineer, not a doctor, but I think it's possible that a rhizotomy might put an end to your TN pain. The best site I have found for information on TN is this University of Manitoba (Canada) site:
I have read everything in this Guide; it has, I believe, given me a good grasp of the whole issue, including various possible treatments. (Being a techie, I like to understand the details!) The three treatments that I would consider are:
MVD -- but, like you, it didn't help Alice;
Radio Frequency rhizotomy: the most carefully controlled, accurate procedure; causes numbness (but you already suffer this).
Stereotactic Radiography -- the so-called Gamma Knife: limited damage to the TN ganglion that gives pain relief to many within a few weeks.
We would try the Gamma Knife, but the closest facility is at the U of Manitoba, in Winnipeg, and Alice isn't fond of flying. If there was a facility in Vancouver, that would only be a ferry ride away.
I suggest you read up on the treatments as outlined in the above Guide.
Art (& Alice)
Barbara said:
Art,
Thank you for your reply. I apologize if I wasn't clear: I have not had a rhizotomy - at least not in the typical sense. During my MVD surgery the surgeon also performed a different procedure, "nerve combing", which also damages the nerve and causes numbness. There is a similar procedure called "partial sensory rhizotomy" where they actually cut through the nerve fibers. In any case, the outcome is the same: permanent numbness.
I take pretty low doses of the meds because I have extreme sensitivity to them (Trileptal 600-900 mg daily, Gabapentin 900 mg daily.) I have also only had TN symptoms since last June and was diagnosed at the beginning of August. I was quick to do the surgery because of my medication sensitivity and the fact that the surgery is supposed to be more effective closer to onset of symptoms.
While the medication does control the pain for the most part, I do get breakthrough pain, and from what I read and have been told, the medication loses its efficacy over time and you have to increase the amount you take. Since I've only really had symptoms for 7 months, I am not looking forward to a lifetime of this.
Although the numbness is extremely annoying, if a procedure can take away the pain, I believe that the tradeoff would be worth it.
I am so very sorry about your wife's ordeal, and I hope that the rhizotomy helps. You sound like a wonderful, caring husband!
Be aware that according to the practice standards of the International Radio Surgery Association, pain recurs within three years for about half of all initially successful Gamma Knife procedures in typical TN. Stats weren't quoted for atypical TN.
I had you pegged as not only Canadian, but as an engineer! Although I live in the States now, I'm originally from Toronto and lived in Vancouver in the early 90s. It was the "dental freezing" comment - Americans call it "numbing". People look at me very strangely when I talk about being frozen after a dental visit (but luckily my dentist, who diagnosed my TN, is also Canadian.) I also have 3 engineer brothers so....
My surgeon does not think the rhizotomy procedures will do much for me, since he's already injured the nerve, I have numbness, and I still have pain. I believe that I may seek out another opinion at some point, but it's only been 2 months since my surgery and I'm really still recovering (I had a very bad first month - still not up to speed).
My surgeon told me what Red reported above: that pain will most likely reoccur for rhizotomy procedures within a few years and the procedure would have to be repeated.
Do they know why your wife's MVD didn't work? I feel so very badly for her. And I don't blame her for not wanting to fly. My neurologist specifically told me NOT to fly because the changes in air pressure could affect the pain. I can't believe that there isn't a facility in Vancouver that does Gamma knife!
Please make sure to update me after she has her procedure.
Best,
Barbara
fastartcee said:
Barbara,
Thanks for your reply and your kind words.
I'm a civil engineer, not a doctor, but I think it's possible that a rhizotomy might put an end to your TN pain. The best site I have found for information on TN is this University of Manitoba (Canada) site:
I have read everything in this Guide; it has, I believe, given me a good grasp of the whole issue, including various possible treatments. (Being a techie, I like to understand the details!) The three treatments that I would consider are:
MVD -- but, like you, it didn't help Alice;
Radio Frequency rhizotomy: the most carefully controlled, accurate procedure; causes numbness (but you already suffer this).
Stereotactic Radiography -- the so-called Gamma Knife: limited damage to the TN ganglion that gives pain relief to many within a few weeks.
We would try the Gamma Knife, but the closest facility is at the U of Manitoba, in Winnipeg, and Alice isn't fond of flying. If there was a facility in Vancouver, that would only be a ferry ride away.
I suggest you read up on the treatments as outlined in the above Guide.
Art (& Alice)
Barbara said:
Art,
Thank you for your reply. I apologize if I wasn't clear: I have not had a rhizotomy - at least not in the typical sense. During my MVD surgery the surgeon also performed a different procedure, "nerve combing", which also damages the nerve and causes numbness. There is a similar procedure called "partial sensory rhizotomy" where they actually cut through the nerve fibers. In any case, the outcome is the same: permanent numbness.
I take pretty low doses of the meds because I have extreme sensitivity to them (Trileptal 600-900 mg daily, Gabapentin 900 mg daily.) I have also only had TN symptoms since last June and was diagnosed at the beginning of August. I was quick to do the surgery because of my medication sensitivity and the fact that the surgery is supposed to be more effective closer to onset of symptoms.
While the medication does control the pain for the most part, I do get breakthrough pain, and from what I read and have been told, the medication loses its efficacy over time and you have to increase the amount you take. Since I've only really had symptoms for 7 months, I am not looking forward to a lifetime of this.
Although the numbness is extremely annoying, if a procedure can take away the pain, I believe that the tradeoff would be worth it.
I am so very sorry about your wife's ordeal, and I hope that the rhizotomy helps. You sound like a wonderful, caring husband!