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

Jen,

I hope this helps you. I'll be sending lots of positive thoughts your way for a successful outcome. This condition takes a lot from those of us with it. You are fortunate that you have found an understanding boss who works with you through this. Mine were complete !^&$#@#$$.

Take care, Ellena

I had gamma knife on April 30th, 2009...so far so good! I wish the same for you!!

Jen - I had balloon compression in March 2008 and so far, so good. I had pain constantly before that - the meds numbed it somewhat, but did not take it away.

My neurosurgeon said there was a 40% chance the pain would return. If it does, I will go back in to have the same surgery. It is not very invasive and recovery is very quick. I had a day surgery, had to take 5 days of quiet time and then I was better than ever.

I hope your surgery is successful. I was without pain immediately. The only side affect I had was partial numbness, which eventually disappeared.

Good thoughts your way!
Judy

Hi all!

So had the balloon compression 2 weeks ago today. I only just got out of hospital a few days ago as there were a couple of other problems that arose but feeling pretty good now.

Pain was originally in V2 area on the left side, since surgery the pain has now moved to V3 on the same side and now affects my lips, gums, teeth and chin. I guess this is from messing around with the nerve, the pains not really where it originally was as it's just numb there now. It feels horrible in my bottom front teeth, like something is pushing them together really hard! And biting is a no-no at the moment too.

The surgeon said give it a few weeks for everything to settle down and if this hasn't worked then they will look at referring me for radiosurgery, I hope it all just settles down as there's a massive wait of about 9-12 months!

Still taking 4000mg Neurontin, 400mg Epilim, a day + codiene & tramadol as needed.

Can't wait for some permanent relief!

Painfree wishes to you all

Jen, I'll be hoping right along with you. I would caution you about radiosurgery. If its like radio frequency ablation, it damages the nerve to interrupt the pain signals and its not a permanent fix. It can also lead to the pain becoming worse after the nerve regenerates itself. Please get all the information you can before you agree to this procedure to be sure this is what you want to do. Just because the surgeon recommends it, it doesn't mean its the best procedure. If you haven't allready, you may want to get a second opinion. Take care

Jen, The best thing that my neuroligist ever said was "Go to Mayo clinic".
This is after an MVD in Kansas city that did not work and two balloon
compression's that failed..............amd more.
Bless, Doodle bug7

hi, I had the same thing done 3 weeks ago and have been left with the same problem. my gums and teeth have now settled but the paid in my lips and chin are driving me to distraction. my surgeon and his assistant are on a course all week and my neurologist is on holiday for a fortnight so have no one with any specialist knowlage to help and no after care given what so ever as yet.

the operation came afet 2 and half years of anti-convulsant meds that didn't really take the pain away and as i'm newly married I wanted to get off the meds completely to try to start a family. I'm now on 4 additional meds that don't really take the pain away either.

I hope your pain resolves, I'm not going to have anymore procedures done as the cure is worse than the cause!

good luck and keep me informed of your progress

I had a balloon procedure in Jan 2008. I got a big hemotoma on my face at the end of the surgery, and I had pain around my eye after the procedure (my TN pain was around my jaw and lips). Because of that pain, I stayed on Tegretol for maybe 6-7 months before decreasing. (As my neurologist said, the Tegretol helps with all nerve pain, not just Trigeminal pain.)

The good news is that the eye pain went away. There's a slight sensitivity around the eye now, but no pain.

The bad news was that I was only off the Tegretol was a week or two and the TN started again. HOWEVER, I didn't need as much medication as I'd needed before for the first 6 months.

Jean

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