MVD January 19 2009
 

Hi everybody.

My MVD is scheduled for the 19th at Toronto Western Hospital.

I've stepped back the Lyrica to 50% dose for this next week per surgeon's instructions (he wants minimal meds in my system so after the MVD they have an idea if it worked or not).

Here's the original thread, to save me re-writing my story, such as it is:

http://neurotalk.psychcentral.com/thread66979.html

Thanks for listening. I appreciate your helping me get through this last week.

CAT

Cat,

I do hope that you have a great outcome. From all the posts I've read, sometimes there is still pain right after an MVD, but that isn't always indicative of the end result. A lot of people stay on their meds a while after surgery and then gradually taper off of them. So don't be discouraged if there is still pain after the MVD. I'm also sending you a PM. EE

Good luck NanaCat.

Toronto huh? :) I'm actually originally from Brampton, Ontario. Too cool! :)

I hope that u have great results with the mvd surgery, I have atypical TN as well, but when I had my MVD surgery, the docs didn't find anything AND severed the nerve so I am left in more pain than I was before. I am not saying that I regret having the surgery b/c no matter the side effects, I would have tried anything, I 2 feel as if I could pull my own teeth! I just hope that the docs that u see gave u full info of the side effects of this type of surgery b/c mine did not and it was disappointing 2 find out that the pain that I am left with is not curable. Again good luck with everything and remember u will still feel pain after surgery, but if it works it will gradually go away!

Jess: I am sorry you still have pain. I actually asked the surgeon about his thoughts on severing the nerve, and his answer to me was almost the same as what you posted: that severing the nerve can result in numbness PLUS pain. He stressed that under no circumstances will he ever do anything to leave the patient worse off than before the MVD.

I'm about ready to grab those pliers any second now..there's gotta be 5 or 6 rotten teeth up in that jaw, dontcha think?

Thank you for your reply. I am being rather cautious due to the atypical nature of my situation. Plus, the surgeon is being very conservative as to possible outcomes.

I *hope* to be able to post a success story. But in my gut I'm not expecting a 100% turnaround.....there were too many oral surgeries that have mucked around with the nerve endings at the front of my face to get a complete resolution. But I believe this is the best option for me.

CAT

Well, it has been a very long day. 5 hours at a pre-op assessment and admissions process.

I've been poked, prodded, needled, weighed, measured and checked from stem to stern.

EKG, chest X-Rays, blood work, more bloodwork, swabbing for super bugs (nope, got none), BP checks, and interviews with nurse practitioners, anaesthetists, pharmacists, etc etc etc.

So they say I'm good to go. I'd like to run in the other direction.

It was a very long night. I had to get up at 4 a.m. and yet was still awake at 3:10 a.m...

Brings back a lot of memories. But I must say, I have never experienced such professionalism, empathy and sheer kindness from healthcare staff. EVERY single person I interfaced with today 'wished me well' as they then moved me further along the assembly line of admissions to a neurosurgical unit....it was an amazing experience. And all from people who didn't know me personally.

Monday morning I am to be there 4 hours before surgery start time for another round of CT scans and testing....

The surgery is scheduled for 11.

cat

So I'm in TN hell tonight: have cut back my meds to almost nothing, as the surgeon wants me off as much as possible. We've been cutting back for about 2 weeks now.

I want to get the pliers out and yank all my teeth on the top left of my jaw.

oh god what if the surgery doesn't work????????????? I'm going to lose my mind.

I hear your pain but right now you need to focus on what you are about to do and try to do so in a positive manner, if its at all possible. There is no guarantee that the surgery will work, and if it doesn't, you can always go back on meds. If you try to focus on the pain, it may ease some of your suffering. I know this sounds crazy and it took me about a year to be able to do it myself, but it really does work and it can give you a break from it. I also suffer from type 1 and 2 TN and know what you're describing. If you have any meditation tapes or CD's, now is the time to pull them out. Do whatever you have to do to get through these next few days and try to stay focused on the present. I hope he doesn't want you to reduce your meds anymore over the next couple of days. If so, I think you should call his office tomorrow and tell him what this is doing to you. Hang in there and take care of yourself :hug:

Thanks EE03. I am feeling so alone tonight.

It just sometimes gets away from me. I'm usuaully pretty good at dealing with pain, but tonight it's making me nuts.

Since cutting back to almost nothing, my pain symptoms have been all over the map. Yesterday, in fact, I was second guessing the surgery altogether. I thought, "this isn't so bad, what are you complaining about?".

Then today hits, and BOOM it's off the scale.

I've been trying to use today as an example of why we need to do the MVD. I've been concerned since seeing the surgeon because he was so surprised at my combination of symptoms. "one of the most atypical combinations I've ever seen" or so he says, anyways. Frankly, reading these forums, mine seem no more or less atypical than a lot of you.

I guess I'm going through the usual pre-op anxiety. Having had a similar surgery 15 years ago, I have a pretty good idea of what my life will be like for the next little while. That is both a good and bad thing! Sometimes it's easier going in "blind".

I've had a cookie. And am going to bed with the furkids for a cuddle.

Thank you for listening. I really needed that!

Cat

No problem Cat, anytime. I know that if I ever decided to go for surgery, I'd be bouncing off the walls. Have they given you anything for anxiety? It might be something you could use right now and its just a thought. :hug: Ellena