I was diagnosed with TN in June 2016. Initially I was text book TN but after going on high doses of meds for the pain the diagnosis became more likely atypical TN. After two allergic reactions to the meds I am only on a very low dose of gabapentin...100 mg at night. I was actually on nothing for two months before going back on the gab. When I was on nothing the pain was there every day...no quite the electric shocks but lesser jabs...over 30 a day...I gave up counting. The gab does dull the pain but it also dulls me even more! I saw a neurosurgeon last Sept and I am on the list for MVD in May 2017. I am scared. Do I proceed with the surgery even though the pain is currently tolerable? Oh, I guess I should mention I have the TN on both sides of my face, one side worse than the other....and I am 68 years of age. Also my MRI shows the blood vessel and nerve parallel with each other but no distinct comparison.
Any thoughts fellow TN people?
Hey Karen,
This is just my opinon but I would not have the surgery but try 1500mg of gabapintin each day. That is what I take but everyone is different but since you have TN on both sides of face it must
be so horrific for you. I will rememberyou in prayer
and please let me know how everything goes.
Thank you Marilyn. I have been on as high as gabapentin 2700 mg a day for a couple of months during the first 3 months after I was diagnosed. I still had pain and I was a zombie...plus a whole lot of other side effects. Hence my dilemma.
Hi Karen, I had an MVD less than 2 weeks ago. I was terrified and spent a lot
of time worrying if I was doing the right thing given the risks. I had a lot of pain
and was on maximum levels of Carbamazepine. As most who take it will tell
you the side effects are horrendous. At the moment you say your pain levels
are bearable, and I see your dose of gabapentin is quite low. I can't imagine
having both sides of your face affected though. If the neurosurgeon thinks you
need the operation and that it will help I'd be tempted to go for it. If you are
unsure could you postpone the operation to give you more time to decide?
Did he give you other options to consider? For me the MVD was the best
option and it's worked and I am now pain free, but only you can decide the
right option for you.
Hi Karen, I am 67 and have had TN for 8 years, I have typical and atypical but only on one side. I can't imagine how awful it must be to have both sides. Mine has been constant for the last two months until a week ago and has now gone. I had Gamma Knife last year which has not cured it but has made it more manageable. I take Oxcarbazepine which seems to have less side effects for me having tried lots of different drugs. I also have progressive MS.
Has your neurosurgeon suggested anything else other than MVD? Unfortunately only you can decide to go ahead or not but when TN is bad anything is worth trying.
I was not offered MVD because of MS (they said it would not work).
Thinking of you and wishing you good luck, do please keep in touch.
Sally
The neurosurgeon said that surgery is my only option, nothing else ...none of the destructive procedures are an option for me. I am allergic to carb. and oxycarb....bad reactions. The gabapentin dulls the pain but makes it more constant and dulls me even more....really life altering. I am just scared. Thanks for you support
Thank you Sally. I am very allergic to both carbazepine and the oxy version of that drug. The gabapentin dulls the pain a bit but makes it more chronic and dulls me even more...takes the enjoyment out of life. The neurosurgeon says nothing else, no other procedures will help. Thank you for your support.
Hi Karen,
If your neurosurgeon has said it is the only option because of your allergies
it looks like he thinks it is the best way to relieve your pain. I did a lot of research
and asked lots of questions. Some answers scared me so much I was considering
not going through with it. I wrote letters to all of my family and put them in a
safe place just in case I didn't make it. That's how terrified I was. Even waiting
with the nurse to go into theatre I was in tears wondering if I was doing the
right thing. Now 15 days later I know it was the right decision. To be pain free
is wonderful. I still keep poking my face to see if it will hurt! I still am careful
when I go to brush my teeth with my electric toothbrush expecting the vibration
to trigger the pain. To be able to smile and laugh again is a blessing. It is a big
decision but weigh up the other option. Can you live with the pain until you
possibly go into remission? I know that may sound harsh but I know how
hard a decision it is to make. If I can help in any way please don't hesitate
to ask. Take care.