Hi All,
I had MVD in April of this year and was doing much better, however over the past month, my pain has come back. I was completely off all medicines and now I am back on tegretol. I go back to see my surgeon next Monday, he mentioned possibly doing a numbing procedure. I just wondered if anyone else has had this or know anything about it.
Thank you,
Donna
He could be talking about either nerve block or some form of Rhizotomy. Hard to say which without hearing more.
Regards, Red
Thanks Red,
I talked with the nurse and she didn't go into details, she just said he wanted me to get back in to see him before I was on too high of dosage of medications and the pain got worse. It's a 3 hour drive to see him, I thought I was finished with everything and ready to get on with a normal life, but I guess not at this time.
I will look up the nerve block and Rhizotomy and see what they entail.
Thanks again,
Donna
Try our Face Pain Info tab on the menu above, Donna… Regards
I did see Dr. Tew again on November 7th and he is suggesting Rhizotomy as I discussed earlier in another discussion. I am so torn about what to do. Since the MVD failed, although my pain is not as bad as it was before the surgery. I am back on the meds and I hate the side effects. I'm just not sure I want to put myself through another procedure to be disappointed if it doesn't work or if it makes it worse. I've read lots of information about this procedure and still cannot come up with anything to help me make this decision.
Has anyone had it that would recommend it after having MVD? Is the numbness something hard to get used to verses the pain and side effects of the meds?
Thanks for all y0ur help.
Donna
Interesting I find myself exactly at the same point. MVD 3 yrs ago, dosed to my max on tegretol, and Dr. is scheduling my consult for rhizotomy.
Donna Mills said:
I did see Dr. Tew again on November 7th and he is suggesting Rhizotomy as I discussed earlier in another discussion. I am so torn about what to do. Since the MVD failed, although my pain is not as bad as it was before the surgery. I am back on the meds and I hate the side effects. I'm just not sure I want to put myself through another procedure to be disappointed if it doesn't work or if it makes it worse. I've read lots of information about this procedure and still cannot come up with anything to help me make this decision.
Has anyone had it that would recommend it after having MVD? Is the numbness something hard to get used to verses the pain and side effects of the meds?
Thanks for all y0ur help.
Donna
Just coming out of an MVD -- I had scrutinized every word I could find out about my surgeon Dr. Casey.....even though Missouri to Michigan was a trip. I know of people who have had successful MVDs with him from my support group. I would make this decision very carefully --- some proceedures make it very hard to eventually have a successful MVD down the road.
Keep Posting!
I had an MVD which lasted a whole 2 WEEKS. I've been in and out of remission since. Then I had a Glycerol Rhizotomy which lasted longer but now I feel the beginning of the TN starting again. I would LOVE to have a numbing procedure but haven't heard of it............let me know if you get it and how it feels........
After my glycerol rhizotomy i didn't have numbness in my face. I had NO pain for a few years.....now back on meds because of breakthough pain.........
Jim1956 said:
Interesting I find myself exactly at the same point. MVD 3 yrs ago, dosed to my max on tegretol, and Dr. is scheduling my consult for rhizotomy.
Donna Mills said:I did see Dr. Tew again on November 7th and he is suggesting Rhizotomy as I discussed earlier in another discussion. I am so torn about what to do. Since the MVD failed, although my pain is not as bad as it was before the surgery. I am back on the meds and I hate the side effects. I'm just not sure I want to put myself through another procedure to be disappointed if it doesn't work or if it makes it worse. I've read lots of information about this procedure and still cannot come up with anything to help me make this decision.
Has anyone had it that would recommend it after having MVD? Is the numbness something hard to get used to verses the pain and side effects of the meds?
Thanks for all y0ur help.
Donna
Hi Spikiegirl,
The procedure Dr. Tew is suggesting I do after the failed MVD is PSR (Percutaneous Stereotactic Rhizotomy). I probably shouldn't say failed MVD because the pain is not as bad as before the MVD, the pain has come back but it is not nearly as bad as before, I do think I am going to try to stay on the medication for a while to see if that helps before I consider doing another procedure.
Good Luck.
Donna
Hi Donna
My mom had a failed MVD as well. She was never free of pain after the MVD but it did make the attacks a lot milder so I cant complain. We're still thankful for the mild relief.
I have been reading a lot about Botox injections and they seem to have worked for many people. Perhaps it would be worth asking your neurologist about. We're quite unfortunate to be living in Africa so she cant get any of these procedures done here so please let me know what your doctor says.
Best
Asmara
Donna,
I had the MVD 4 years ago. Within the last year i started feeling like I was getting little twitches again. It went away for a few months and now for the last 2 months I am feeling pain going in behind my ear. The pain is nothing like it was before but it scares me it is coming back. How did yours come back? Rita
Hello again,
Ditto Donna, Ditto Rita;
I had MVD 4 yrs ago and found myself back to the same pain levels & meds. My Dr. performed two Rhizotomies in one operation - one injecting a few drops of glycerol, the other "radio frequency" rhizotomy (or burning of the nerve). The proceedures were run through the same "needle" one after another. That was on Dec 21st past. Since I have had narry a twinge or hint of any pain. I have been completely off any med for over two weeks.
This was an outpatient surgery. Unlike MVD, it acts by destroying pain signals by damaging the target branch of the trigeminal nerve (low left jaw in my case). I have had no facial numbness; only some lack of tearing in my affect side's eye which I still treat with artificial tears in the evening but to a lesser extent as time goes on. This side affect is common, one that I would gladly accept over the nerve pain.
This is not a permanent fix; patients typically get 1-6 years releif, but it certainly has less recovery time that a physical skull opening needed for MVD. Eventually the 'damaged' nerve will recover, but, nice thing about it, repeat treatments are performed as needed.
The only advice that I can offer is to get with a full-service Nuerosurgeon. I don't post my dr's name but if you google trigeminal and Johns Hopkins Baltimore Md you'll run right into contacts there if you are interested.
Best regards to all,
Jim
Hi Jim,
I'd like to take the same successful, albeit temporary, route that you recently took. I'm also a Maryland resident and after having quite a few surgeries/procedures in the past decade; nothing sounds sweeter to me than "possibly 1-6 pain-free years" and "outpatient". I'm trying to avoid the MVD procedure at all costs. I'll go to the Johns-Hopkins link to learn about Rhizotomy and the J-H neurosurgeons who are involved.
Please feel free to provide any additional info (Here) that you can. I have Type 1 TN on the left lower-center quadrant of my face and the shocks are very bad for months at a time with maybe a month of twinges in-between; pretty typical around these parts, I'd say. No joy...
Blessings, Rick
Jim1956 said:
Hello again,
Ditto Donna, Ditto Rita;
I had MVD 4 yrs ago and found myself back to the same pain levels & meds. My Dr. performed two Rhizotomies in one operation - one injecting a few drops of glycerol, the other "radio frequency" rhizotomy (or burning of the nerve). The proceedures were run through the same "needle" one after another. That was on Dec 21st past. Since I have had narry a twinge or hint of any pain. I have been completely off any med for over two weeks.
This was an outpatient surgery. Unlike MVD, it acts by destroying pain signals by damaging the target branch of the trigeminal nerve (low left jaw in my case). I have had no facial numbness; only some lack of tearing in my affect side's eye which I still treat with artificial tears in the evening but to a lesser extent as time goes on. This side affect is common, one that I would gladly accept over the nerve pain.
This is not a permanent fix; patients typically get 1-6 years releif, but it certainly has less recovery time that a physical skull opening needed for MVD. Eventually the 'damaged' nerve will recover, but, nice thing about it, repeat treatments are performed as needed.
The only advice that I can offer is to get with a full-service Nuerosurgeon. I don't post my dr's name but if you google trigeminal and Johns Hopkins Baltimore Md you'll run right into contacts there if you are interested.
Best regards to all,
Jim