Quote:
Originally Posted by _Jen
Hi all,
I'm usually a bit of a wallflower here and just end up lurking on the forums but I decided it's time I became more of an active member!
I've got a balloon compression surgery coming up this wednesday and hopefully I get some relief from this! 
A quick rundown:
Atypical TN, left sided V2 and occasionally V3
sept 2004 - Diagnosed within 2 months at age 16
march 2006 - Cryosurgery (first time)
aug 2006 - Cryosurgery & Glycerol injections (second time)
feb 2008 - MVD - 6 hours of tracing the nerve and no compressions found
I am currently taking 4000mg Neurontin & 400mg Sodium Valporate (as I also have epilepsy)
This wednesday I am having the balloon compression and I will keep you all posted incase you are consider it also. I seem to be a challenging case as this dreaded pain will not go away and after each procedure I have only have about 1 month of relief.
My surgeon said that if the balloon compression does not give me relief then he will do the radiosurgery (I have to travel to the other end of the country for this!). If that doesn't work I don't know what is going to happen. I don't even want to think about it!
I have lost a couple of really good jobs because of this and I can count my lucky starts that I've now got a very understanding and patient boss. I couldn't and wouldn't have made it this far without my dad and my partner being here for me. We're trying to save up for a wedding but it's not really happening with all the time off I've had lately!
So that's where I'm at... I will be posting with my progress 
Pain-free wishes to you all
Jen |
Hi Jen,
Just want you to know, I'm thinking of you and hope for success in this procedure. I post on the Reflex Sympathetic Dystrophy Forum regularly, but also have been diagnosed with TN by my neurologist. It has just got to my right side recently. I remember him saying it usually doesn't affect both sides, so my next appointment will tell him the new news.
Wow, that's a lot of Neurotin, I was on 3200 mg for several years, but it stopped the electric jolts, shocks, spasms. Gained weight on it. I've been off for a year, and am surprised the electric jolts etc didn't come back.
Please continue to come to this group for support, we all need to be supported and learn from each other. I'm grateful for all the support I've received. RSD is extremely painful and I've had it 15 years following surgery. It's now full body and internal. Please let us know how everything goes.
Hope all works out well for your job and wedding plans. Take care, loretta