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

Hi, I was reading your thread and have a few suggestions to help you temporarily. Go to www.emofree.com. You can learn this little technique called EFT. I use it when I am having a severe pain episode and it seems to work. I don't know if it just makes me stop freaking out or if tapping these spots really helps, but it is worth a try. Also, if you could try getting a massage (you might want to ask your doctor first). If money is an issue, call the local massage school and see what time they do public clinics. Normally, they cost significantly less and if they know what you are going through, may offer to do it for free. This may help you relax some. Trust me, I don't think any of these things will fix you, but might help you get through until Monday. I hope all goes well and I will be thinking of you.

Thank you Deb. I appreciate the link.

I have a spot on my cheekbone just below my eye, if I put pressure on it with the icepack, it helps a bit.

But sometimes it just gets away from me. Today the Monster isn't so noisy.

I am looking forward to a long weekend at home with husb and dogs + big roaring fire so it doesn't get much better than that. 1 more day of work too.

I'm going to bed. Haven't been sleeping much lately which I'm sure is adding to the problem!

CAT

The pain tonight is really bad.

My surgery has been moved to 8 a.m. on the 20th instead of the 19th. The neurosurgeon had 3 procedures booked that day, and I was #3 of 3. So he moved me to Tuesday to make sure we have the extra time he's anticipating he might need....

I am looking forward to a quiet, peaceful day at home.

If nothing else, the pain I've had this week is a bit of a blessing: it convinces me that this MUST get done. When I have days with 'tolerable' pain I second guess myself....

Night everybody (though I don't see many people on this forum these days: is that a sign that everyone is feeling good? Hope so)

CAT

Cat, I'm kind of glad for you that you'll be first. I know these guys are used to this stuff, but if it were me, I'd want a fresh pair of eyes and hands working in my brain. Take care and pamper yourself tomorrow :hug:

Thanks EE

Yeah, first is good.

Now if I could just get through tonight....

CAT

I had my surgery on Tuesday the 20th and came home today.

Have had a migraine since then and a lot of facial swelling, so it's hard to tell if it "worked" yet.

CAT

Sorry to hear about the migraine Nana, get lots of rest. :hug:

Oh Nana, get lots of rest. Coming home that soon is a good sign. I hope the swelling goes away quickly for you. :hug:

Here's the hole in my head. It looks quite good. ALMOST matches the one on the right side, but the wound is slightly shorter.
CAT

Wow, that does look good considering it was just a few days ago. Take good care :hug:

I'm feeling really pukey today. My migraine won't let up unless I keep on the Percocet (2 every 4 hours). But my stomach doesn't like it. And I'm hardly eating anything so that's not helping.

And then today I got (as predicted by the doctor but still...) pain in my face.

cat

Ugh Cat, I am hoping this is just adjustment period for the body and things will even out for you. :hug:

Thanks.
Today is better. Working on the migraine (caused by a wrench to my neck in the OR while positioning for surgery apparently). I've gone off the Percocets completely even though they work really well. I don't like how I feel on them.

So, hot baths, chiro/massage on my neck and time are healing things up.

I am still surprised at the amount of pain I have with this surgery. When I had my AN removed 15 years ago I had NO pain, but no brain function either for about 6 weeks. This time, I have this horrible pain but the brain is just fine....starting to think that option #1 is more fun.

Staples come out on Friday.

CAT

Hang in there Cat. Everything gets better with time, at least thats what I keep telling myself, lol(and except for TN). All the MVD accounts I've read all seem consistent about the recovery. Its long and rough and especially hard on the neck muscles. I'm glad to see you post again. I've been wondering how you're doing. :hug:

Hi

I think I've crossed the line into upcoming wellness... :)

Woke up today with just a headache - no migraine
My balance is back to normal - no more falling down
Neck muscles are relaxing - yay

AND! (ta da!)

This is now day 5 of NO MONSTER IN MY FACE. I still have a lot of weird numbness and a strange thing going on with my chewing on the one side, but no extreme face pain since Saturday night (24th January). I'm almost afraid to post this, because my one fear is that the monster will once again reassert itself into my face. But what the heck, I'm feeling lucky today!

CAT

That's GREAT news!!! I'm so happy for you! :hug:

CONGRATULATIONS on your new lease on life. That is awesome, I have been following the thread to see how you were coming along and just hoping to see a positive post from you. God knows, everyone who suffers from TN has just cause to expect the worst, but am so thankful to see you feeling better. I hope you don't mind if I continue to pray for you? :hug:

All the best for continued improvement,

Rhonda

Thank you Bassetcase, for taking the time to post.

I think I can now definitively say that the MVD has resolved the TM pain in my jaw. Where I continue to have difficulty is severe numbness/pain in the front area of my jaw. This is a result of the many, many surgeries performed on my mouth due to "dental issues" before the TM was figured out.

The neurologist thinks that the secondary mouth pain may settle down now that the big monster TN is gone. We'll see how that goes.

I am having a fair bit of difficulty with vertigo and subsequent nausea. My balance nerve on the RH side was severed 15 years ago when the acoustic neuroma was removed. With the MVD on the LH side, it seems as though the balance nerve on the left is affected, let's hope temporarily. As I no longer have a compensating nerve on the right to take over in the meantime. When I get into a large room with noise and lots of people, I am barely able to maintain my equilibrium. Hope that goes away soon!

Thank you for your prayers: I believe all positive energy, no matter how it is directed at a problem or a person in difficulty, brings results.

CAT

Thanks for your on going updates on your recovery. I will keep checking on you.

All the best,
Rhonda

Thank you!
CAT

Cat,
Great news that your pain free. I'm somewhat distracted here so I've not been posting that much. Anyway, things can only get better from where you were. I hope you continue to recover and be free of the beast.

Cat change your mood hun! You shouldn't be sad anymore! :)

:hug:

Here's to more pain free days in your future I hope!

OK I took changed my mood to 'no mood' because there isn't one for 'disappointed.

I don't think the MVD worked. Not 100% at least.

Atypical TN symptoms gone: (the doctor warned me that I was an extremely 'atypical' case, so much so that he felt that more than one thing could be causing the pain).
Constant burning in the top of my palate on LH side
Burning at the back of my tongue on the LH side
Severe "axe handle" out of my jaw

Symptoms NOT gone, and flaring up lately:
All the teeth in the top left side of my jaw feel like they need root canals (still!) inspite of them all having more than one root canal procedure. New crowns, caps, plus other surgeries above the gum line (where they cut off the points of the roots..)
Numbness in my face and trigger points still hypersensitive

New symptom:
Increased numbness in the side of my face.

It was predicted, pre-op, that my face pain may be caused by 2 things:
1. A compressed nerve at the brain stem end.
2. Permanent damage to nerve endings at the front of my face in the surgical site.

So I think we got #1 covered. but #2 is still quite irritated. I was hoping by now (2 wks + 2 days post op) that this would have settled down, but no such luck.

I am also experiencing a lot of vertigo and balance problems. Partly because I have no balance nerve on the RH side. There is a large hyper-sensitive area of my scalp (approx the size of a palm print) from the surgery site to the crown of my head. And lots of neck soreness. I expect all of THESE will settle down.

Was mostly hoping that the MVD would be the END of things. Doesn't look like it. But I am very open to be proven wrong.........

CAT

I do hope you continue to heal. The body can be truly remarkable about managing pain (for example). I'm keeping hope that you'll make it through this Cat and be pain free :)

Thank you!
 

Thank you for posting this. It is so difficult to find information about Atypical TN and possible options for relief. I am truly praying and wishing you a speedy recovery and solution for your pain.

I have also been going through the trials and tribulations of diagnosing and treating ATypical TN. It is so frustrating and I'm thinking about the MVD surgery option. The medicine cocktail is not working for me and I want my life back!!!

Thank you again for posting and I'm praying for you.
Tara

Thank you Tara. I share your frustration. Even when I MET with the neurosurgeon, all of a sudden the 'rules' and 'outcomes' changed because my situation was considered so 'atypical'. He even went so far as to say to me "I'm not even 100% positive this pain originates solely from TN".

As far as the medicine cocktail was concerned, that was very low on my 'want to do' list. And now that we have a partial success from the MVD, it looks like I might need to still medicate the nerve damage at the front of my teeth from the oral surgeries. I'm not looking forward to that, but apparently is might be more manageable than the pain from the nerve root. At least the BIG monster is gone, and I no longer have the ax in my face every time my heartbeat goes up the slightest (ie: the artery compressing my trigeminal nerve was flaring up the TN every time my heartbeat went up).

I'm also really pleased that the hypersensitivity to cold air and cold foods has settled down. GIMME THAT ICE CREAM!

I guess more than anything I wanted a TOTAL FIX of this problem. That hasn't happened. But maybe (and I truly hope so) the pain I am left with is more easily managed.

My suggestion to you would be to be very assertive with the neurologists and neurosurgeons: keep pushing for answers, and try and get the very BEST surgeon you can, should you go the MVD route. Don't settle for someone who does a dozen a year, but someone who does them all the time.

Best of luck!

Cat

UPDATE:
WOOHOOOO!!!!!!!!!

I have now had 3+ days of pain no higher than a 3. YAY YAY YAY I think it's finally working!:D

It is 24 days post-op and I was starting to give up on a total FIX.

The pain in the top 6 teeth on the LH side has now settled down. When it does flare up, it's not monstrous. But for the most part, I've been at a 3 or 4 tops since Tuesday morning. There was one night where they kind of started screaming, but two Tylenol#3s settled it down.

YAY

CAT

Congratulations!
 

I'm so happy for you - and thankful to actually hear some good news regarding this curse. Did you celebrate Valentine's day with that bowl of ice cream?!!

NO ICE CREAM :(
My husband and I spent the night in the ER investigating a possible CSF leak. Turned out to just be a fluid buildup underneath my incision.

So no dinner, no wine, no flowers. BUT, we each had a Mars Bar from the vending machine in the emerg waiting room!

hmmm. that reminds me. I need to change my mood!!!

CAT

Well, I don't know what a CFS leak is, but I'm glad it turned out to be the other instead. Sorry to hear you had to spend the night in the ER, but aren't you glad you have a loving husband to hold your hand and be there with you through it all. I hate to think there are some out there suffering alone.

BTW - I'm not preaching, I'm sure you realize all that. :)

Hope you have a good day, and a better week ahead. I'll be checking on you.

Rhonda