I am 68 yrs old and have had TN for 13 yrs. I am considering a MVD but wonder how successful it would be considering my age and the length of time I have had TN. Has any one any experience here.
I had MVD ten days after my 71st birthday. Age should not be a problem, but your neurosurgeon can give you better advice based on the assessment of your overall health. I had my first attack of TN in 1987. It was not diagnosed until 1994, and I was treated with Tegretol, then 3 times with gamma knife (1997, 2004, 2009; all were successful), and finally, when TN came back again, with MVD. I hope TN is now finally gone from my life.
Desert Dweller said:
I am 68 yrs old and have had TN for 13 yrs. I am thinking of having MVD but wonder what my chances of success are due to my age and the length of time I have had TN. Has any one had a MVD at my age or older and what were the results?
The hardest part for me was the wicked sharp pains in my neck as the cut nerves in the neck healed. I also have fibromyalgia and I am sure that made it harder. I was also shocked at how tired I was. I am ADD and being so tired was hard.
Where did you have your surgery - a university hospital or other? what state?
Ellen said:
I had MVD ten days after my 71st birthday. Age should not be a problem, but your neurosurgeon can give you better advice based on the assessment of your overall health. I had my first attack of TN in 1987. It was not diagnosed until 1994, and I was treated with Tegretol, then 3 times with gamma knife (1997, 2004, 2009; all were successful), and finally, when TN came back again, with MVD. I hope TN is now finally gone from my life.
Desert Dweller said:I am 68 yrs old and have had TN for 13 yrs. I am thinking of having MVD but wonder what my chances of success are due to my age and the length of time I have had TN. Ha
s any one had a MVD at my age or older and what were the results?
I just had it done in July of this year after suffering for 6 years with TN. I am 60 years old. I have been wonderfully pain free since the surgery. The first day after surgery was a little rough but from the second day on it was a very easy recovery. Everyone responds differently but I would not hesitate one minute because of your age if it would give me a chance for a pain free life or at least some improvement from the pain that we all know.
Best Wishes for wisdom and strength from North Idaho!
Jay
I had surgery at Barnes Jewish Hospital (the academic hospital for Washington University in St. Louis) in St. Louis, Missouri. It's a major university hospital. There are two neurosurgeons on the faculty who do MVD a lot. I had excellent care in the hospital (both in the specialized Neurosurgery ICU and then the "regular" unit) and afterwards had several followup appointments with the neurosurgeon, Dr. Keith Rich. He's a kind capable person, with a quiet sense of humor and no arrogance. He was glad to answer every question I had. I had my final appointment and was "discharged from surgery" in mid-October.
Desert Dweller said:
Where did you have your surgery - a university hospital or other? what state?
Ellen said:I had MVD ten days after my 71st birthday. Age should not be a problem, but your neurosurgeon can give you better advice based on the assessment of your overall health. I had my first attack of TN in 1987. It was not diagnosed until 1994, and I was treated with Tegretol, then 3 times with gamma knife (1997, 2004, 2009; all were successful), and finally, when TN came back again, with MVD. I hope TN is now finally gone from my life.
Desert Dweller said:I am 68 yrs old and have had TN for 13 yrs. I am thinking of having MVD but wonder what my chances of success are due to my age and the length of time I have had TN. Ha
s any one had a MVD at my age or older and what were the results?
I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
Mark - Did you have the MVD after you had a Gamma Knife procedure? I didn't think you could do that. I had 2 MVDs ('98 and '06) then pain came back in '07 and I had LINAC (like GK) but with no relief. Was told that's it for me...nothing more can be done now after LINAC. Thanks.
Mark Molter said:
I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
thanks.
Not Again said:
Mark - Did you have the MVD after you had a Gamma Knife procedure? I didn't think you could do that. I had 2 MVDs ('98 and '06) then pain came back in '07 and I had LINAC (like GK) but with no relief. Was told that's it for me...nothing more can be done now after LINAC. Thanks.
Mark Molter said:I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
I had a MVD seven months after a Gamma Knife, so it can be done.
Desert Dweller said:
thanks.
Not Again said:Mark - Did you have the MVD after you had a Gamma Knife procedure? I didn't think you could do that. I had 2 MVDs ('98 and '06) then pain came back in '07 and I had LINAC (like GK) but with no relief. Was told that's it for me...nothing more can be done now after LINAC. Thanks.
Mark Molter said:I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
Yes, the surgeon said there was scar tissue from the GK, so it took a bit longer. The surgery was successful, still no TN pain three years later. Mark
Desert Dweller said:
thanks.
Not Again said:Mark - Did you have the MVD after you had a Gamma Knife procedure? I didn't think you could do that. I had 2 MVDs ('98 and '06) then pain came back in '07 and I had LINAC (like GK) but with no relief. Was told that's it for me...nothing more can be done now after LINAC. Thanks.
Mark Molter said:I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
Hi Mark, it's nice to see you're still alive and kicking after all these years! I'm really glad to hear that you're pain free, that's fantastic! Best regards, Maureen
Mark Molter said:
Yes, the surgeon said there was scar tissue from the GK, so it took a bit longer. The surgery was successful, still no TN pain three years later. Mark
Desert Dweller said:thanks.
Not Again said:Mark - Did you have the MVD after you had a Gamma Knife procedure? I didn't think you could do that. I had 2 MVDs ('98 and '06) then pain came back in '07 and I had LINAC (like GK) but with no relief. Was told that's it for me...nothing more can be done now after LINAC. Thanks.
Mark Molter said:I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
My type 2 TN had become refractory ( resistant to meds). I have bilateral TN.
My MVD on April 9th, 2013 was a success in that I woke up pain free…AND I was able to go off 2/3 meds. I still have TN pain and am on a dose of 1400mg Tegretol XR, but at least now my pain responds to the meds.
Pre-MVD I spent 7 months with 24/7 horrid non stop pain on high doses of meds.
I’m very grateful I had my MVD.
I have written about my experiences in the MVD group including my surgical report.
I should also mention that in 10 years none of my MRIs ever showed signs of compression.
During surgery 3 were found.
My surgery took place in Winnipeg, Manitoba Canada with Dr. A. Kaufmann.
Knowledge is power so, anyone considering MVD please read as much as you can to make an informed decision.
Mimi
Maureen,
Glad to see you are still well. Miss our talks. All my Best, Mark
Maur said:
Hi Mark, it's nice to see you're still alive and kicking after all these years! I'm really glad to hear that you're pain free, that's fantastic! Best regards, Maureen
Mark Molter said:Yes, the surgeon said there was scar tissue from the GK, so it took a bit longer. The surgery was successful, still no TN pain three years later. Mark
Desert Dweller said:thanks.
Not Again said:Mark - Did you have the MVD after you had a Gamma Knife procedure? I didn't think you could do that. I had 2 MVDs ('98 and '06) then pain came back in '07 and I had LINAC (like GK) but with no relief. Was told that's it for me...nothing more can be done now after LINAC. Thanks.
Mark Molter said:I had an mvd 3 years ago after having tn for 6 years. I had a gamma knife which worked for 6 years until the pain came back. I think the mvd is the best choice with less chance of nerve damage. I have severe pressure and numbness from the GK so I would not go that route. Mark
Hi! I haven’t had mvd yet , but my doctors have spoken to me about having it done. Im ok with having the surgery if i have to. I am on 2 medcation and they don’t seem to be helping me . But I think I’m having pain on the right side of my face also, is that possible? The pain that i have right now Is on my left side, it effects all 3 of the branches of my face. My mri showed that the TN is on the right side but I was not having pain on the right side when I had the mri, its alway been on the left side . So I want to know if you can have TN on both sides of the face and has anyone had surgery on both sides.
I have to do something… I have 3 kids, a husband and a home to take of . I just want the pain to be gone.
Thanks
Priscilla
Priscilla Deleon said:
Hi! I haven't had mvd yet , but my doctors have spoken to me about having it done. Im ok with having the surgery if i have to. I am on 2 medcation and they don't seem to be helping me . But I think I'm having pain on the right side of my face also, is that possible? The pain that i have right now Is on my left side, it effects all 3 of the branches of my face. My mri showed that the TN is on the right side but I was not having pain on the right side when I had the mri, its alway been on the left side . So I want to know if you can have TN on both sides of the face and has anyone had surgery on both sides.
I have to do something..... I have 3 kids, a husband and a home to take of . I just want the pain to be gone.
Thanks
Priscilla
I am 15 days out and I am finding my sense of balance is still a bit messed up. Nothing major, but it is enough that I am still taking doing down stairs slowly as a precaution. My stitches are out and now the incision is really starting to itch.
I am 1 year out and the incision still itches. No pain and that is all that matters
My balance took a while to get back to normal following my mvd in July. The site that the endoscope traverses to get to the Trigeminal Nerve involves going thru the cerebellum your major equilibrium and balance center. Any external stimulation is bound to affect it in varying degrees. I still have some itching and numbness behind my ear at the site of the incision and likely will for several years. It reminds me that there was something corrected and how blessed I am to have no pain!!
Jay in North Idaho
By the way, I just looked at who had written this and I have been wondering how you did following your surgery. You have been definitely on my mind. I hope your results were all you had hoped for. Let us all know, okay.