http://neurotalk.psychcentral.com/thread68330.html

I hope I did that right - if you have not already please read the post from Judy M posted yesterday in the above thread. Maybe it will give you some hope.

BLESSINGS,
RHONDA

UPDATE:

I saw the neurosurgeon yesterday and he's booking an MVD for within the next month.

The extreme 'atypical' nature of my TN has him a bit concerned, and he says that if I were a classic TN1 he could give me some better odds of success. Right now he's saying about a 60-65% chance of a positive outcome (ie: no more pain).

The big issue is my hearing, as I am deaf on the RH side due to the previous acoustic neuroma. Chances of damage to the nerve during the MVD ranges from 2.5 to 5%. That includes everything from slight damage to complete hearing loss. He is optimistic they can be extremely careful with the acoustic nerve and I am comfortable with those odds.

Thanks for listening. I don't have too much energy right now, yesterday took it all....but I'll post more later.

cat

Deb:
I'm going to try the heating pad instead of an icepack tonight. Thank you for the tip.

Percocet? hmmm.....I tried OxyContin and it did absolutely nothing except make me sick as a dog the next day.

I need to be able to function at work (at least I'm off the stupid-pills, a.k.a. Tegratol). With the Lyrica I don't feel nearly so stupid but no improvement in the pain relief, yet.


Cat

Cat...

wondering how you're doing ?? good to hear some pains --'ice pick' --better.
did suggestions, heat help??
for me COLD is trigger & exacerbator. as is Stress...

Lidocaine may 'calm' some pains. it's often in nerve blocks & other injections that can help.
also, Lidoderm --RX transdermal gel patches--can be cut into smaller pieces and placed over [some] painful areas.

i 've also used compounded topicals w/ Lidocaine & other meds for 'nerve' pain included in preparation, but now no DRs that know how or willing to RX
some compounding pharmecy's online have info. (will try to find & share ....) they can put various meds into alternative forms-- like topicals, or make special prepartions customized for you...

pain meds, like percocet may help. seems most DR prefer to RX other meds for nerve pain. it may take a combo... and most of the 'nerve' meds like lyrica & other AED's can take awhile to get used to and/or be effective.


Hope u find things that help
let us know...
pray you & others find relief...

Happy New Year

A quiet holiday for me: it seems that this Monster now determines my family and social activities more than I would have imagined.

The Lyrica isn't doing a very good job. Neurologist's appt is on the 6th so only a few more days.

I've started to notice the affects of hot/cold foods and drinks on this pain. Cold things definitely flare things up, and I believe hot does as well, but maybe not so severely.

I see the neurosurgeon on Jan 14th for a review of Radiology's findings of the examination of my MRI.....and am hoping that there can be some sort of "fix" to this thing. The concept of being medicated for the rest of my life is not something I want to consider.
Just want it over. My world is shrinking....no one really wants to be around someone with this thing, do they?

Cat