I am having my 2nd surgery tomorrow .
After the 1st surgery life was great for 3 1/2 years so I know how it feels to be pain free!! I’ve had several really bad flare ups & Trileptal & Baclofen just weren’t working at the prescribed dosage. I just kept popping them to control it but my body & mind didn’t tolerate it very well.
My new neurosurgeon specializes in TN & I found him through someone’s posting on this site - 
( links to TN Facial pain ) & so appreciative as he is in my city-Tucson Arizona & patient with a great demeanor & experienced!!
I am getting nervous and also remember the terrible nausea & actually I think I dont have any memory of my day in ICU, which kind of freaks me out.
They finally gave me an anti nausea drug that worked & it was one they give to cancer patients so he knows the name.
I will post as soon as I can & just hope he can help me. I did consider radio surgery but the radiation scared me to death & the prospect of waiting up to 6 months didn’t feel right for me. I sure hope it’s successful!! And uneventful!
Linda! Good luck tomorrow! I’ll be sending positive thoughts your way…huge ((hugs)),
Hope your recovery goes smoothly, and the outcome gives you pain relief!
Be sure to post when you can, thinking of you, Mimi
Hi Mimi- thanks for your kind thoughts & hugs! Will post when I can!
God bless and we can't wait to hear from you! Wishing you complete success this time around!
Hi everyone! It went very well. He didn’t find another compression but removed one of the original sponges & added a new one & repacked it . I haven’t had any pain & so happy. Actually afraid to say that & hope I don’t jinx myself!, the dr was concerned about facial numbness & I didn’t think I had any but my forehead might be a little numb. I have a huge wrapped head of gauze including my forehead so hadn’t touched it till tonight. He said if I had any it would subside within 6 months. I can certainly live with a little numbness to eliminate the TN pain.
Drugs helped with the nausea & now in a regular room & should go home tomorrow.
Can’t wait to get the bandage off & wash my hair!
Thanks for the kind wishes & thoughts!
Oh wow Linda! That’s so awesome!!
Continued best wishes as you heal , rest girl!
So happy for you!
(( hugs )), Mimi
Linda this is such good news. Had the original sponge slipped, is this the reason why TN returns for some people after a few years? Wishing you a pain free life xxx
Thanks for the good wishes & still pain free! I do have facial numbness on my left side( where my TN is) but not really annoying. My forehead is the most affected but should subside in 6 months. Can live like this forever if the pain is gone.
The 3rd day was hard. Nausea was the worst but made the decision to go home vs. stay another day in the hospital. My husband was afraid I’d vomit in his car & took a plastic bag but was fine.
I don’t know if the sponge slipped or he didn’t like the placement. When I see him for my post op visit will ask him. I was fighting the nausea when he told me that & wasn’t thinking too clearly.
My husband is surprised I am moving around so much but do get tired easily & naps are good. Kind of afraid to put my glasses on as the temple might hit the incision but will try later on. The incision is much larger than the 1st time & might be because he fixed the original depression.
The dr encourages walking & took a short one (accompanied) yesterday & was kind of pooped. Wore a big hat to cover the scar! 5 inches of staples not too pretty !!
Linda, I'm glad your surgery went well and that you are feeling pain free.
I heard that one of the side effects of trileptal, is that your sodium levels go down dramatically. That is what was taking for the TN pain before.
When I had my MVD Surgery, I was also very nauseus on the first day and on the second day, they realized that my sodium level was very low and it think it's what was causing the nausea, so they gave me salt pills, which helped almost immediately, the nausea stopped. Do you know if they checked your blood to see if your sodium levels are low?
Hmmm don’t think they checked for sodium levels. Glad it’s over & 22 staples were removed today. So happy!!
I know I have had issues with my sodium levels with trileptal in the summer ( I live in Arizona).
Good to know & pass on to others!!
The neuro thinks the scar tissue from the original surgery was creating the compression. Today he told me he pondered to stop but took it 1 step at a time & he’s glad he continued & so am I!,
Thanks for posting about your experiences with MVD. At first I was skeptical about the outcome, but right now even 6 months to a year pain free would be a blessing.
I will pray for a swift and full recovery. May you stay pain free!!
It is worth trying. The pain is so devastating. Not sure where you are in the process but do find an experienced surgeon! My 2nd surgeon does a few a month vs. 2 a year! Good luck & we all try to help one another & listen sometimes that can ease the pain for a few moments. 1 step at a time & you will know what is right for you.
Best of luck & happy holidays!!
Don't wash your hair too soon -- take your time with everything - slllloooowwwww
Wishing you a continued speedy recovery but I agree take things slow, I'm now 4 weeks post op and feel as though I've had a bit of a relaspse, so back to the couch it is!
Mandy hope its just a small blip xxxx
Hi Elaine, yeah think or really hope it’s only just a small blip. I’d managed to come off all the pain meds by Sat night and was doing really well until Mondayvwhen I started getting kind of a dizziness but not actually dizzy and by lunchtime the headaches came back with a vengeance! That night I was up all night and ended up back at the Drs who didn’t really know what to make of it as have never come across MVDs before. She faxed the NS for advice as follow up apt isn’t until 5th March!!! Haven’t heard anything back from them and still not feeling too good! I maybe just came off the pain meds too early…I just want to feel well again! Xxxx
I hope you are just having a small setback. Did you wean off the drug? 1st time I was on trileptal. & had a terrible time when I came home. Pain was worse than before. Gave me codizone & back on trileptal & ADDED. Baclofen. Then got relief. Eventually weaned off them both successfully .
This time ( different Neuro) weaning me off Baclofen but stopped trileptal cold turkey!!
Supposedly different schools of thought on the weaning process. I truly hope you get back on your feet quickly!
Hi Linda, I;m stillon the TN meds it was just the pain meds I came off which were Tramadol,paracetamol and oramorph. The pain/headaches following the op seemed to have subsided although I still had a lot of tenderness around my scar, especially my temple which I couldn't touch. These pains seem to be different and initially they felt as though they went in a circle around my head, as though it was a headband. Now my head just aches all over and I just feel rotten, I was hoping that when I woke up this morning that it would have gone but NO, it's still here! I think I wouldn't be worrying so much if I knew that recovery could go like this but I wasn't really given any do's or don'ts or what really to expect following discharge from hospital.
I hope that your recovery is still going well and that you are feeling okay in yourself! How are you feeling being taken straight of the trileptal?
Mandy could you start a new thread asking how others felt after their MVD? Could you telephone the hospital where you had it done to ask their opinion? I dont like the thought of you struggling at home without proper advice. Take Care xxxx
I also don’t like you struggling at home. Your surgeon should be more responsive. If the hospital doesn’t have much experience they might not be a great help either but worth a call, Your experience is very different from mine so dont really know what to say & Yet I feel so bad & can relate. This is a horrible ailment!
I am still doing well & with my staples out my incision is less annoying. I do have facial numbness which my surgeon says happens the 2 nd time & he did some things to cause it but really not too annoying. Should subside within 6 months.
I think it is a good idea for you to start a thread & might get some useful information. Take care & I will be thinking about you & checking in!