Trigeminal Neuralgia Support Group

i dont quite understand the question... i just had the surgery MVD 2 weeks ago and the trigeminal pain is gone. there is also meds that you can take for it. the meds didnt work for me.
elaine

I guess what Im saying is has anyone had the experience of it resolving on its own without any treatment.
Dona

I had asked that same question to the Specialist in Pittsburgh, Pa who deals strictly with TN patients and invented the MVD (Micro Vascular Decompression) surgery..He told me that it is rare, but that some people may "grow out of it" if they are of a younger age.. He didnt specify the "younger" age part.. but I'm guessing since TN is seen more in patients over the age of 50.. maybe if you're younger than 50 you have a chance of it going away.. but I would definitley get treatment anyway just incase.. Nobody should have to put up with that pain. The medication never worked for me, but since the surgery, i've had no pain at all except for a couple tiny jabs when they weather is cold. I hope this helps and Good Luck! :)

Thank you Leah ..that does help a lot..
Im not in the "young " years .. over 50.
I did try medication but felt like a zombie on it even in small dose so I didnt even attempt to go a higher dose .
Just wondering what the surgery was like.?
How long were you under the knife?
Dona

Dona,
It depends on where on the 5th nerve the damage is. With MS the TN comes and goes even then it still depends on where the damage is. Mine is right where the nerve starts at the pons in the center of the brain and to give you some hope my pain comes and goes but my last MRI the other day you could barely see the plack build up on the 5th nerve at the pons. By the pictures I shouldn't have pain at all. OH well.
Hang in there and take care of yourself,
Mike

Hi Mike

I have actually made an appointment with a neuro for next April and maybe he will do some testing to see which nerve is my problem . I guess it will be an MRI which is not something Im looking forward to ,thats for sure...but Ill just take it step by step....and yeah hang in there...
thanks Mike

Dona

Actually I have a friend who's TN was caused by dental problems and once he got them solved his TN went away. He had the problem for less than 3 months.

My neurologist told me there's a type of TN that comes with shingles in the nerve ganglia. In this type of shingles it's all internal so you don't know you have it. That kind of TN can resolve itself in 6 months or less.... and it may never return. There's another type caused by shingles in the nerves that is permanent.

One gal who was here for awhile had the other kind of shingles that are visible and once she treated the shingles her TN went away.

Like Mike said, MS is another possible cause.

Bone infections can also cause it.

Do you know what has caused the onset?

Take your earplugs to the MRI if you're sensitive to noise. Boy, I sure wish I had done that.

C

HI C

My TN developed with all my Lyme disease symptoms.. Treatment took care of a lot of symptoms but the TN just hangs on so after 8 years Im assuming that its permanent and something is damaged.
When I had an MRI 8 years ago nothing showed up . Maybe something will show up this time.. I hate MRIs . i cant do it without some sort of sedative...although Ive heard of open MRIs but I dont know if they are used for head scans.
Dona

Oh, I see. I should have gone to read your profile first. I usually do that. SORRY to make you explain.

I've heard of that...Lymes being the cause. As though Lymes is not bad enough, Dona.

Is this next MRI going to be the kind I've heard of but never had, the "thin cut" MRI ? It shows more minute details I guess.

Maybe someone here has had that.

I'm so sorry you're having a mega dose of pain. The nerve damage is a thing I'm dealing with. I still have a numb tongue from the onset of TN that began 9 months ago. I bite it and burn it with drinks that I don't realise are too hot. I do this frequently. Not good. I know it's what they call nerve damage, but no one has figured out why I have it.

I'm a claustrophobic person too. The MRI machine that I've been in twice had the opened end near my head. I think it really helped. I also prayed the whole time, really had to pray to keep myself still. (And I wished I had worn ear plugs!!)

I hope your pain will lessen.

XXO

Hi C
Im not looking forward to having the MRI but I dont have to worry about it until April..maybe I will completely chicken out by then.. I am claustrophobic as well . If its not going to be an open one ,I dont think I will be able to handle it..
Ive been reading some reports from someone who had the botox and I have to admit it didnt sound too hopeful. Maybe I will chicken out of that too.
Im just very confused. Im hoping that by April I will find some good reports on its efficiency .
I dont have any numbness in my face but I have a slight droop on the left side..no one else would notice it but me.
anyway I guess Ill just wait until April.
Take care
Dona