I am one of those who has been away from here for a while simply after having an MVD in April of last year... to enjoy almost a year and a half of no pain after 7 years of hell. I just wanted to spend time enjoying life again. And I did.
Until today. The pain has inexplicably returned in full. Whereas before for the 7 years I had it pre-surgery it was most concentrated in V2/V3, this time around it is concentrated in V1 only.
There is no way on earth I wish to live with this again. In fact, I had planned to do away with myself (I can't believe I'm writing that) shortly before I got the call for surgery. I know I will feel no different this time around. I am amazed at every one of us that continues on living with this hellish pain (and/or the fear of it) but I know I can't be one of them again. I put myself back on Tegretol (only 200mg x 3 daily) and on a very low dose to start as these leave me dopey... with no family/friend support here (Sydney) I simply can't afford to be zombie-like on the job.
I plan on consulting the same surgeon who performed the surgery last time as I consider a year and a half without pain a success. I'd like more (who of us wouldn't?)
I assume the cause of it this time around could be teflon slipping out of place, another vein/artery deciding to move and grate up against the nerve and/or scar tissue... as I certainly haven't done anything different that might account for the recurrence.
I'm scared to ask for another MVD... has anyone here had a second and found it worked better (longer) for them? I am unwilling to live long-term in pain or on zombie-fying meds so I'd like to see the surgeon asap. I would really appreciate hearing from anyone about their 2nd MVD experience, scared as I am.
Treating the V1 branch can be problematic. To totally treat the pain also means you numb the tear ducts putting your eye sight at risk due to corneal abrasions. I had a internal neurolysis to treat the pain to the V1 branch, and while it did not remove all the pain, it has lessened it, without risking my sight in my left eye.
thank you for that, saraiderin. I didn't know what internal neurolysis was so looked it up. looks pretty scary. terrible time to try and get an appt with any dr so at least the tegretol is working - that way I know it really is TN that has returned and at least I have that to lean on while I wait for that appt. I'm very happy to hear that your sight was not compromised. any lessening in pain has got to be a good thing.
For me the thought of any surgery is scary, but I knew I was in excellent hands. I wish you lived here in the states. I was recommend my neurosurgeon to you.
belau said:
thank you for that, saraiderin. I didn't know what internal neurolysis was so looked it up. looks pretty scary. terrible time to try and get an appt with any dr so at least the tegretol is working - that way I know it really is TN that has returned and at least I have that to lean on while I wait for that appt. I'm very happy to hear that your sight was not compromised. any lessening in pain has got to be a good thing.
Hi Belinda, so sorry your not great at the moment.
You’ve said out loud what I’m thinking, (often) I would think many of us are thinking, at one time or other…
But somehow we go on, I’ve had TN since 2009, I had an MVD in November 2012, but by December (the next month) the excruciating pains were back, so here we are, two years later, struggling on…
I think the pains are more intense since the operation, but don’t come so often?
I think that when/if you get your meds organised you will be able to deal with your pain better, eg even though I religiously take my meds, even through the night (thank goodness for alarm clocks) I still sometimes have “break through pain” September and October were just hideous, unbearable, and for no apparent reason, then November the pain just left, now I am in remission again, maybe for months? Hopefully?
As regards to a second MVD, I would put my hand up again in a minute, I think having an MVD was the best decision I ever made. I did ask my neurosurgeon if he would do it again, I think he was insulted in some way, he told me he did the surgery, to the best of his ability, and he did it right, so why would he contemplate doing it again… (That was me put in my place).
Keep in touch Belinda, I’m sorry you don’t have family/friends for support, you can contact me whenever you want…
I hope you manage to have a pain free Christmas Day, I’ll be thinking of you,
Hugs Anne x
I wonder if the decision to have surgery the 2nd time around is not more scary, as one has a better idea of what to expect. I know for me going ahead with surgery again was very scary. First time around I had a CSF leak out my nose, and a total bowel impaction due to the pain medications. It was also learned I have a very narrow windpipe, and adult intubation tubes are too big. Thing is I went back to the same neurosurgeon, the one who was there when everything went wrong the first time. Knowing the structure of my body, child size intubation equipment was ordered from the children's hospital, that is part of the academic medical center I had my surgery at, the lumbar drain to prevent the CSF leak out the nose, was started in the OR, and every time I took a pain pill, it was chased with warm prune juice, and a laxative. While 2nd time around, I was stranded one more time in a hospital bed for five days, and I do not care to drink a cup of warm prune juice for the rest of my life, but things went well. I can not totally have the pain to my eye removed, without putting my sight in the eye at risk, but the attacks are not as bad.