I don’t know where to start. I’m in kind of in shock and awe right now.
I had a MD in 2009. After a very tough recovery I was put in all the awesome drug that we seem to all take (gabipiton, baclofen, tegritol) to keep the pain at bay. I got pregnant in 2014 and was weened off the pill rather quickly. I would get a zing here and there maybe a couple per month (they would last on and off all that day but would be gone the next.) So, I really thought nothing of it. Flash forward to 3/26/16. I woke up with fire on my right cheek bone. It has been going on for days now. I’m back on gabapentin, and in total fear!!
Has anyone out there had MD done and years lasted have the TN (1) symptoms come back with a vengeance?? What was your next step? Is another MD in order? I found one article stating that 58% that have success with the MD have basically a relapse 7-9 years later. But I can’t find what those people do when this happens. Any information would help ease my mind.
I had MVD in 2014 but only had 6 mos til symptoms back so not quite as bad at first. When I spoke to my surgeon he said would not do another MVD due to scar tissue and he recommended thermal rhizotomy as last surgical resort. Have not summed up courage to do it yet, trying to manage with meds. Doesn't sound exactly like your situation, hoping you get some relief!
Hi. I had a successful MVD done in 1997 (pain free and no medication necessary) and a relapse in 2004 and a recent MVD done in 2013 which was unsuccessful and pain is worse. He mentioned it was difficult 2nd MVD, scar tissue etc. etc. On a new MRI they see an impinging vessel on the nerve still. I'm in the process of figuring out to do another MVD. Yes, you are correct. There is a percentage of people that will have a relapse from 7-10 years after a successful MVD. However, it does not seem you had a successful first MVD. I consider success- pain free. But maybe it is success when all u need is low dose medication to be pain free. Hoping you get some relief.
Hi Hanging in There. That is interesting. I replied to Elizabeth S regarding her pain return after a MVD. I had a 2nd MVD. The pain returned worse about 6 months after. On his Operative notes, the surgeon said it was very difficult. There was a lot of scar tissue etc. etc. When I called to tell pain has returned, his RN stated that another surgical intervention will not work, the nerve must be damaged, try Gamma Knife or other procedure. However, upon a new MRI it still shows a "vessel" on the nerve. I have 2 surgeons from top institutions that say the scar tissue would not be a problem. The angle of my neck would not be a problem and if the artery or "vessel" is embedded in the nerve, then may be able to carefully dissect it away and "comb" the nerve. I'm off the Johns Hopkins in a month for another consult, so as to make a decision. That thermal rhyzotomy scares me. They wake u up , find the area, then put u back under and electrocute that area. Supposedly, you don't remember. Have they mentioned Glycerol Rhyzotomy? That's my other alternative that one neurosurgeon just mentioned. Originally, he said MVD. When I emailed further questions about scar tissue the "vessel' being impacted in the nerve. They replied. They would do a glycerol rhyzotomy. No word back as of yet to "WHY" the change in procedures from MVD to Rhyzotomy. So, your answer had me curious. Hoping your hanging in.
Hanging in there said:
I had MVD in 2014 but only had 6 mos til symptoms back so not quite as bad at first. When I spoke to my surgeon he said would not do another MVD due to scar tissue and he recommended thermal rhizotomy as last surgical resort. Have not summed up courage to do it yet, trying to manage with meds. Doesn't sound exactly like your situation, hoping you get some relief!
Hi there, am trying to reply to Artfan and not sure if I'm doing this correctly, will try. I go to Barrow's Neurological Center in Phoenix (drive there since I live in NM) and feel like they have been good!. Had Gamma once before and after the MVD with no success. They discussed Thermal but doc said sometimes side effects can be bad (numbness etc) have also heard horror stories about how they do procedure and side effects. Am able to work now but topping off on meds and unless find something that works will have to do something in the next year. What is difference between Glycerol and thermal?? Nothing shows up on MRI when doing mvd they found 3 small veins and tefloned them and massaged nerve. Any info is appreciated!!
Hi Hanging In There. Interesting that nothing shows up on your MRI. I'm certain it was but make sure it was a Tesla 3 Fiesta Sequence. I can't imagine it wasn't if from a neurologist or neurosurgeon. Thats unfortunate, if no compression. I always had a "vessel" showing on my MRI Here is the difference from my perspective. But PLEASE google. There is a wealth of information on the internet. With thermal. They anesthesia (not sure how much) insert a needle. Then wake you. Find the correct area. Anesthesia again and electrocute the area. Supposedly, you do not remember a thing. I'm not to certain about that. With glycerol, the sort of anesthesia (not certain extent). Insert needle and bathe trigeminal ganglion with glycerol. take out needle. Wake you. You go home. Now. If I'm correct, There is also a balloon compression where they anesthesia stick a needle insert a balloon, blow it up. destroy nerve, deflate and take balloon out. Wake you up. i'm not going to give you any recurrence rates, efficacy rates etc, since I'm not a licensed physician. BUT PLEASE research them. Go to NIH website (National Institute of Health) and I think Mayfield Clinic , if I remember, has a nice spread on different procedures. OR just google "Different ablative procedures for Trigeminal neuralgia". That should bring up a wealth of information. Look for Efficacy (Pain Free) Recurrence and Side Effects. Sometimes you can find a published article that is done on 100's of procedures that list the "average" in those categories. That's what I always refer to. I always try keep in mind some people's experiences wildly differ from someone else's. Its nice to get some thoughts though from others who has gone "through" it. Unfortunately, I have not had either one done. I'm still working on a 3rd MVD or maybe glycerol rhyzotomy. I hope that helps.
Hanging in there said:
Hi there, am trying to reply to Artfan and not sure if I'm doing this correctly, will try. I go to Barrow's Neurological Center in Phoenix (drive there since I live in NM) and feel like they have been good!. Had Gamma once before and after the MVD with no success. They discussed Thermal but doc said sometimes side effects can be bad (numbness etc) have also heard horror stories about how they do procedure and side effects. Am able to work now but topping off on meds and unless find something that works will have to do something in the next year. What is difference between Glycerol and thermal?? Nothing shows up on MRI when doing mvd they found 3 small veins and tefloned them and massaged nerve. Any info is appreciated!!