Hi Folks: !! Merry X’mas & Happy New Year !!
Wondering if any member who has this procedure experience and kind enough to share his/her take away insightful precautions for pre/in-operation/post operation care/blindspots/pitfalls and adaptations. And, what to watch out for during the operation? I had a failed MVD and have to consider an interim remedy that offer effectiveness on pain control and economy of cost.
Can’t stand the medication side effects anymore!
Any suggestions are welcome. Many thanks!
Snowboot
Thank for the Question, I am in the same boat, Had a failed MVD, Now taking Oxcarbaopene, would like to get off the meds. It is either Rhizotomy or Gamma knife. Any information would be helpfull and appreciated.
Thanks
Si
Me too
I would love info ,too
Having a hard time finding anyone in Toronto Canada that wants to do anything.
Hi, Seatlesi & ellen6:
I found some very good info on previous discussion on the topic in the following link:
Try and see if you find what you are looking for. I found it very educating and mentioned areas that the surgeon may not be aware of. Best wishes and Happy Xmas!
Snowboot
I have had a failed MVD, and a failed gamma knife. My TN pain comes from my neck specifically from bone spurs pinching the nerves at 3-5. I can prove this any time I want to by bending my neck from the base and looking down, looking too far over my left or right shoulder, or extending my neck out over my spine so that it is not in alignment. If I try two or more of these movements at the same time, that is a recipe for disaster. I found it helpful to do micro neck exercises ala Dr. Jeff Turner in San Antonio (https://www.texasmigraineclinic.com) I am not affiliated was just a patient. He recommended rhizotomy on top of the PT. Worked like a charm. However, the rhizotomy was performed on my C - spine not on my face.
I am still peeved that two Neurosurgeons, did not bother to check for problems in my neck BEFORE surgery. I am no longer on meds except when I do some stupid movement, and then a Frovatriptan usually takes care of it, PDQ
The numbness after a rhizotomy means that it worked.
I had it done 3 years after a partially successful MVD, but the pain steadily got very bad. The results were about 75-90% effective. A permanent numbness (cheek, lip, tongue) set in, but I learned to live with that. The procedure and recovery is relatively tolerable, and I’d do it again if given the same circumstances. You might also want to check out Dr. Jeff Browns Balloon Rhizotomy, as I have a friend with MS and Tn, and she has been pain free for 7+ years. I had a Gamma Knife, and I don’t think I would have had that done if I knew the consequences and limited efficacy of that. Good luck
Hello everyone,
Merry Christmas. 
I remember the pain I experienced with my first bout of Trigeminal Neuralgia. I was blessed that the very first doctors who saw me (in an ER in Boston) were able to identify what was going on.
I am writing to share that I have found something that really helps. And it’s helped me get off dreadful medication. It’s called NUCCA and it’s a chiropractic specialty. There’s no popping or cracking… it’s focused on the neck area and reminds me, as I experience it, of reiki. Very gentle yet profoundly effective.
I hope that you will find this to be helpful. Here is a website to learn more: https://nucca.org/what-is-nucca/
This has changed my life. I have no investment in or relationship with NUCCA or its practitioners. I didn’t even find it on my own; a friend in New Zealand was researching solutions for me because I was, just five or six short years ago, in dire pain all the time. That went away within weeks of beginning NUCCA therapy.
May each of you find peace and be relieved of pain in the new year.
1 Like
I had a Percutaneous stereotactic rhizotomy done about 4 years ago. I had no problem with the procedure. I do have numbness on the left side of my face where I have TN. The numbness in my eye is the most bothersome but bearable. I have more numbness that I or the doctor who did the procedure expected. If ever needed I would have it done again.
The numbness is from above my left eye to below my left lip about 2 inches from my nose.
I also had a failed MVD. I then had Rhizotomy, which was a pretty simple out patient procedure (in and out the same day)- and the pain relief was immediate- right when I woke up it was gone. And the numbness wasn’t too bad- but for me the pain relief only lasted about a year- so I had another rhizotomy, and again I got about a year of pain relief, so I had another, and again I got about a year of relief. By this point the pain and trigger point had moved from lower jaw to middle of face along nose and above upper lip. At this point the surgeon said that’s about it for using that procedure. So now I have numbness and pain at same time, and I treat with medication. I am considering a gama knife, which is actually less invasive, and I wonder if I shouldn’t have tried that first after the MVD- because it is less invasive.
All that said, the frequency of the pain spikes are less often than before the surgeries, and the months of my life pain free were priceless. The numbness is manageable.
Good luck, and good health.
Please be very careful. DO NOT have the procedure if you are in the middle of flares. I had it done Dec 2014 by one of the best NS in Chicago and ended up with Anesthesia Dolorosa. Please read up on Anesthesia Dolorosa first. The procedure burns the nerve at the Meckel’s cave which is where the three branches come together/split apart. If the nerve absorbs too much of the burning it will basically kill the nerve-your worst nightmare. Please be careful and really research Anesthesia Dolorosa. The best NS in the country to consider for an MVD redo-if you are still having shocks, you are a candidate PLEASE look into Dr Mark Linskey at UC Irvine. Many NSs are good at MVD but very few are good at re-dos ant he is the BEST.
Hi, everyone:
Thankyou for your valuable inputs and experience sharing to the topic.
Carl: you mentioned a very interesting symptom which I also experienced and had been pondering on it all these time. That is, the trigger points do change location from time to time. Can you elaborate more on the symptom you came across?
My right side TN has transitioned from type 1 into type 2 where the pain is more of a constant pain when triggered until it dies down. Everyday when I woke up in about 30 minutes, the trigger zone (lower jaw-rear molar teeth) gotten activated by normal jaw motions which is still bearable. As trigger zone gotten irritated by more jaw motion, the trigger zone become heated up to a burning feeling until it reaches a cracking threshold and touches the trigger point which initiates an explosive like attack with (stabbing pain, knive cutting pain pulsating with the heart beat like & burning pain). The unbearable pain continue as long as I fight against the nerve attack. I normally got to freeze myself up on stopping what I am doing and try to bring it down by breathing technique or rest by lying down. These triggering can result from daily routines like face washing, tooth brushing, eating & chewing, shaving…etc. I found over time, these trigger points will move around near the triggering zone areas generating different pain pattern with each new location. Sometimes it also surfaces in my lower chin and lip areas for sometimes and disappeared, then come back in future dates. I have been wondering about it eversince I have the TN and none of the doctors/specialists seem to be able to answer! All the time, beside the meds I have been trying to minize activating or irritating the trigger zones which is very hard to do during everydays routines. I am still wondering WHY it is a moving target, May be someone who has similar experience can share their insight. I also wonder whether the Rhizotomy will fix all the typical trigger points associated with the branch of the TN nerve? or will it only fix only the trigger points that are prevalent at the time of the surgery?
Grateful for any inputs. Thanks
Snowboot
If RF Rhizotomy is what I think it is I can tell you what someone went through. And, that’s “IF” it is the inserting of a needle by the facial trigeminal nerve and heating the needle up to affect the nerve. If its not that ignore the following: This guy had it done and he told me if he could have gotten up off that table he would have choked that doctor to death. His words, not mine. I think he meant it. Whatever the procedure was called it involved inserting a needle along side the T nerve in the face and heating the needle up (I think) to damage the nerve and relieve the pain. He said he would not recommend it at all. I , myself, had a GK treatment in 2000. 100% effective. Pain free for 9 years. Then it came back so the CK was out by then and they gave me that since I responded well with the GK. Left me with a lot of numbness but I learned to live with that. Numb was better than screams. Now I take just 2 Lyricas / day for neuropathy caused by the CK. That numbness is now 10 years later about 10-20% of what it was. Doing good.
Hello friend, I used to experience rhizotomy even though I was anesthetized locally but still had extreme pain during it and after about 2-3 weeks thereafter without success. indeed in some countries such as Israel, before the mvd surgery will be carried out rhizotomy as a standard procedure. a few years later I looked for a neurosurgeon and performed mvd surgery. for almost 2 years it worked but since June this year it hurt again so I tried to find a neurosurgeon in Japan today. indeed many neurosurgeons will suggest that mvd surgery is the last resort if the pain is felt to be very disturbing to our lives and of course after the dose of tegretol is already so high.
Can I speak with you privately? Scatheyp@gmail.com thank you.
Hi, Gueni:
Check your e-mail please, thank you.
Snowboot