Just got the call...on a wait list for MVD

1

Omgoodness!
I don’t even know what to think… I’m a bit overwhelmed with many thoughts and emotions swirling about in my mind…

My story in short… I have TN 1 on my right side, first presentation in 2002, within 3 mths i had what i called breakthru pain on opposite side more like TN 2, bilateral tn, on meds for almost 9 months then remission for 8 years.

Fast forward to 2010, TN returns again on right side, classic TN1. Managed on 800mg Tegretol for almost 2 yrs, in April of this year flare up with TN 2 on left side, have been struggling to manage pain since then…
I am currently on 1600mg Tegretol and 50mg Baclofen, since getting to 50 mg of the Baclofen this past Wednesday, my pain went from 8-9 to a 1-2 out of 10.
I’ve been enjoying this relief since friday.

This summer I started researching the MVD process, saw a neurosurgeon here in Alberta where I live, who agreed to do it starting with left side, no guarantees as left side is atypical tn2 pain.
Emailed another neuro surgeon in Winnipeg ( my first choice because of his experience with TN and MVD) and I heard back today that he is willing to do the MVD, also on left side first, as my pain had not been managed until a few days ago.
However that being said he was very honest that the success rate for atypical pain is not great, he rarely performs MVD on type 2. But based on my neurologists reports of my medical history he feels it would be worth a try.
Then later on we’d look at right side.

I am officially on a wait list…aprox.8 months…

But if I was experiencing a level 10 pain they could bump me up, of course that would bump someone else down, so only in a dire situation. I’m also on a cancellation list, where they could call and I would have a chance to say yes or no to the MVD with 2 weeks notice prior to surgery.

I don’t even know what to think right now. I’m thrilled to be given hope at a chance to reduce my meds or get off them altogether eventually, but I also wonder about going through a serious operation with no guarantees…And eventually again on the other side…it’s really a crap shoot, like playing the slots in Vegas.

My husband is very supportive, and although he knows it’s my decision, he really thinks I should go for it.

I wonder how many on here with atypical presentation have found that MVD helped in some way??
I’m grateful for the opportunity, just scared I guess of the unknown…
Thanks for allowing me to bounce of you all…
(( hugs)) Mimi

2

Mimi, I am thrilled for you. At the same time I understand your angst. I am suggesting you contact my great friend here Mandy. She has recently had MVD on one side and she is Type II. She could tell you better than me. I have always said when my pain is out of control, I would have MVD with a second's notice. In fact I would run to the hospital. I understand anybody wanting to rid themselves of this pain and the meds. {{ Big hugs}}

3

Thank you Jackie, I know YOU understand, I was just thinking of Mandy today actually…
I am 80% sure about trying MVD don’t think I’ll get much higher than that, I’ve researched as mch as possible and think its worth a shot. Im really fortunate that I am experiencing some relief right now and enjoying it soooooo much, it’s been a rough go lately.
I’m also a firm believer that ‘things’ happen for a reason and so far ‘things’ are lining up in the right direction…
((( hugs))) to you always, Mimi

4

Hi Mimi,

Thanks for keeping us updated on what's going on with you. I seriously could have written this post because my situation is so similiar! I'll send you a private message soon because I just returned from the neurosurgeon and am feeling tired and emotional. I just wanted to let you know that you're not alone. I could relate to every word.

I'll write soon. :)

xo

Vicki

5

Oh, I’d like that Vicki, when you’ve rested, send me a note. Thanks for reaching out to me, it means a lot. ((( hugs ))) Mimi

6

Mimi,

There are many out there in a similar situation, I am sure, and you will hear from them. I dealt with type 1 on my right side and was able to have an MVD about 6 weeks ago. Although our situations are different, I want you to know that I am thinking of you and I know that you will be making the right decision & at the right time.

Dixie

7

Thanks Dixie! It means a lot.
How are you feeling 6 weeks post op? I hope your experience was a good one, I’ve read a little here and there on other threads you’ve posted in.
(( hugs )) Mimi

8

I feel great! I am outside doing yard work right now in 80 degree weather.

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That’s sooooo awesome Dixie! Enjoy! I’m really so encouraged.

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SO EXCITED FOR YOU!!! Its weird to be happy that someone is having surgery, but in this case I am. Regardless of my other post and the issues I am having, I dont regret for one minute having the MVD, and if I can just get this other crap sorted out I will be pain free!! I do hope you get bumped up and dont have to wait that long, but at least you are on the list!!

Wendy

11

Thanks Wendy! Hope you’re feeling better really soon! (( hugs)) Mimi

12

So excited for you!!! I will continue to keep you in my thoughts and prayers!!!!! Best of luck to you in your wait to hopefully a VERY successful surgery!!!!!!!!!!!

13

Hi SaraM, thanks. : )
Good luck at your neuro surgeon visit!
Let me know how it goes!
(( hugs)) Mimi

14

Very happy for you Mimi, hope your MVD is sooner rather then later. I am one month post op, feeling better and believe it is definitely worth it. Hoping all the best for you "Linda"

15

Thanks Linda, so glad to hear your csf leak was repaired and you are starting to feel better!
I too, hope it is sooner rather than later, I’ve had too add Dilantin to the mix of meds and increase the Baclofen as well since I wrote this post…and still little to no relief…
I definately feel more confident about the MVD now then I did a month ago even.
Continued healing to you!
((hugs)) Mimi

16

Sorry to hear that Mimi but keep looking ahead hopefully it won't be long. You reminded we all talk about a day when we will be pain free but have forgotten that we will also be drug free. Won't not watching the clock and having to carry drugs and make sure we take them be so nice. We are honestly tied to our TN. I start weening off my drugs in two weeks. Very excited. Let's all look to a pain free drug free day...Whoot Whoot. Hoping that surgery day comes soon. In the mean time big hugs and positive thoughts your way "Linda"

17

I have been pain free and drug free since November, following my Oct. MVD. It is so good to be in this place!

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Have been suffering…really truly suffering…8-9/10 most days for weeks, I increased the Dilantin again…neurologist although supportive was quite frank on the phone saying, “we’ve tried everything…surgery is our best chance”.
Heard from surgeons office, they are bumping me up…due to the severity and increase of pain…

I will hear within the week what my date will be.

I again expressed concern about bumping someone off the list, and she reassured me that I am their worst ( pain wise) patient, priority is given …

Just wanted to update …
Mimi xx

19

Hi Mimi,

Great news and I know how worried but also excited you must be feeling right now. As you know I had my MVD in Oct and am still getting pain on both sides. I saw NS yesterday for the first time since my op and he feels that my MVD was successful but the pain relief was un-successful, although we thought this might be the case due to the TN been so badly damaged. He now wants to look at doing MVD on the left side later in the year but is also talking about doing the right side again at some point and even mentioned Gamma Knife as a further option!!! I think I will possibly have the left side done but do have serious thoughts/concerns etc at the prospect of having to go through it another 2 times. There is a chance for any of us to continue getting pain following an MVD but I really think that, in my case, that if the actual nerve hadn't been so damaged then the op would have worked as it does for many people. I know you are a deep thinker like myself ha ha, but I'd say give it a go, I would rather be pain free on one side than live my life with this level of pain on both sides and writing this has kinda made me think a little more about having it done on the left and my conclusion at the moment is that I will go for it, but I know when I come to it I'll be feeling just the same as you are now.....should I, shouldn't I, but only you can make that final decision honey! I really wish that i could have told you that mine was successful to ease your mind a little but I know you are aware of the complications I had so do bear that in mind when making your decision!

keep me informed of any progress and when you get your date through

(((Hugs)))

Mandy xxx

20

Great news Mimi!!!

I had mine last October and I can say each month gets better and better. I rarely have any tn pain now and if I do its an annoyance and nothing else. best wishes to you!! Soon you will be pain free, hang in there!!

Wendy "crashgirl"