Mara,
My Mom is on Tegretol (brand name of carbamazepine, I think). Your comment about a magnesium supplement intrigues me. Is that a known regimen?
I am considering MVD, and this link to your story was SO VERY HELPFUL! Thank you a million times for sharing this. My surgeon told me I would be back at work probably at about two weeks; you said it took you six weeks to recover. That concerns me a bit⌠Well the whole thing is scary as hell, as you know. But I donât think I can keep going with the 24/7 pain either. In my case, there is a vein compressing the 5th trigeminal, and it is quite visible on MRIs and has been for two years. I have had issues for more than 6, but it only became unmanageable within the last maybe six months or so. Anyway, I am not certain what path I will choose, but thank you for your sharing of first-hand information.
Pam
Hi Pam,
If you have more of an office job, I believe you could go back to work in two weeks but maybe part time that first week back. I had to wait 6 weeks because my job is a fitness instteaching Spin classes, which is vigorous exercise. I felt really good though after 2 weeks and was virtually recovered by that point but still got tired. I could have gone back at that point to a part time office job for sure.
Yes, I am a legal assistant with a desk job. And my employer is a great one, and I am sure I could work remotely from home a bit, and/or work part-time in the office at first, etc. I am a very healthy, positive-attitude person, so I tend to heal up quickly and well (though I only had two surgeries beforeâC section and the like). Thanks for the response. Take good care.
Pam
YOU shouldnât have MVD without trying ALL other avenues. Your TN has come and gone over the last five years. MVcompression/ demylination why should it vary so much? If you come up with the answer, concentrate on it as part of the solution. MVC is not proven, and MVD as a procedure was dreamed up by some folk who at the time didnât have knowledge of the anatomy of the trigeminal complex, possibly driven by egos. Does it help possibly, with potential catastrophic side effects. You might find a general aneasthetic as helpful.
Ksears, look them up on the search bar, after having MVD.
Ends their post after in around about way extolling MVD, must have felt really crap prior, which I know a lot of folk do. Finished with;
The pain is so intense right now I donât know where to turn and I know this is a long story but I really need helpâŚplease someone help me!!!
I donât know the answer, but as an informed guess donât consider it to be MVD
I have had TN for at least six years, maybe longer. It used to come and go. But as I have aged, or perhaps as the compression worsened (there is a vein leaning on the 5th trigeminal), it got worse. I finally consulted a physician a couple of years ago. It was still quite manageable. But six months or so ago, it really got bad, and I have, literally, not had a single hour in a single day without pain (it is type 2). While I recognize the surgery is not a guarantee, for me, I feel the possible benefit outweighs the risks at this point. I am willing to live with pain, but it has started to interfere with regular life (I cannot chew without a ridiculous amount of pain), and sometimes I cannot talk without so much pain I have to stop, and I work for a living and have to be able to talk with my superiors etc. It is about quality of life for me. And at some point, for me, I just no longer want to live like this. It is like people who finally give up and have a knee replaced. they donât HAVE to, but they choose to, when it simply becomes unbearable. It is all about choices. We each choose what is best for us. I found medication unbearable, and my choice is not to live feeling like that. Others may choose differently. I respect everyoneâs choices, and I wish for the best for everyone suffering this insanely painful disorder.
AlexsMom, as long as you have a clear compression and have done your research (which you clearly have) I say go for it. You have to do what you feel is right for your situation. Just be aware of negatives as well as the positives.
I donât have a clear compression so surgerical intervention is completely off the table for me. Keep us (or me) posted on what you ultimately decide to do and how it goes. Of course my fingers are crossed for you.
I am all too aware of the negatives. Not just in terms of possibility pain will not be gone (stats seem pretty good that it will be) but in terms of loss of feeling, numbness, tingling, and possible loss of hearing in the ear on that side, not to mention a million other risks of any serious surgery, and especially cranial. I surely do not let someone drill a hole in head lightly⌠Every day I think âIâll just live with this,â and then I got a sharp pain and realize, this is a ridiculous way to live, and that I canât continue it forever. I am quite terrified, but think this is the right decision. The surgery isnât till July. Thanks for kind wishes, as always.
And yet youâve tried Acupuncture and cpd only, go figure, forget the alternatives, your wrapped up with your neuro/ surgeon who recommends what? DESTRUCTIVE treatment. After all it has been a long time struggling, and thatâs all youâve tried, why? Not trying to be insensitive, just why/
Yes. I tried acupuncture, I tried CBD oil, and I took gabapentin for a month and managed to get to 1200 mg a day, and while it reduced the pain, it but made me feel absolutely horrible (foggy, cloudy, stupid) and caused certain physical side effects that were unbearable. For me, I believe MVD is the best option. Much thought has gone into this. I do not make the choice easily. I discuss it with my various of my medical practitioners, my family, and my close friends. Even my neurosurgeon told me this was my decision to make, and his job is simply to support whatever decision I choose. So this is my choice, and I see no need to justify it further to you, though I appreciate your concern. I hope my choice removes my pain, and I hope whatever choices you make do the same.
Of course itâs your choice to make. Donât expect you try to justify it to me anymore than to your newsagent/ local shop keeper. Your neuro, whilst saying it is your choice isnât going to be spelling out the possible alternatives, he is after all a neuro and they donât tend to, yours may be different. Donât intend you should listen to me any more than your neighbour, who may be a tree surgeon, just wish everyone would consider all options prior to destructive procedures. I had a mate whoâŚ
The fact youâve already replied, rather than have left this site suggests your unsure, had I been sure of my mind I couldnât be bothered to respond. No harm.