Has anyone else had unsuccessful mvd?

1

I feel like the only person who has had an unsuccessful mvd. I was doing great up until about 4 months post op and the pain slowly started creeping back. At about 6 months it had gotten to the point that the pain was increasing in intensity so quickly that we decided a second mvd was in order stay to see what was going on in there and to be more aggressive with the nerve. My surgeon let us know that because of what he was doing to the nerve my TN attacks may be more frequent and more intense for a bit but as the nerve heals they will slowly start to get better and then fade away completely eventually (hopefully). Since the mvd 3 weeks ago ive also had a spinal tap to try to find thd cause of post op pressure headaches and a blood patch bevause the spinal tap left a leak that left me 4 days of a screaming headache everytime i moved my head. Obviously I’m still on a TON of medication, and I’m now having to see a pain management doc. So far I’ve only seen the pain management doc once when I was in crisis from the headaches from the spinal tap, but he was amazing and prescribed some better pain management meds. I’m seeing him again next week thank god.

I just didn’t know if anyone else here had such a troubling experience. I am so happy for all of the successful mvd’s out there for sure! I just feel like a failure or something. Like “why didn’t mine work?” And I feel like a wimp for not recovering as well or as fast as other people I read about. Maybe I’m just having a pity party over here. Who knows.

2

Heather, My daughter has had 2 mvd's also. The first she was pain free for about 3 weeks and the second for about 2 weeks. She is back on all meds and was recently released from the hospital after 6 days. Another MRI showed another compression. She is 18 and has been dealing with this for almost 2 years. I have again started looking for docs, as her current docs do not know what else to do for her. They have referred to her as "having 2 failed mvd's", but I assure her that it is not because of HER. Everybody's body is different! Do not give up, look forward one moment at a time! Sometimes, that is all you can manage. Prayers for you!

3

Hi Heather, Just read about your resent MVD. Don't feel alone! I have Bilateral TN.. MVD on both sides plus other surgeries for the TN. Always comes back, but differently. My face is almost completely numb. Now 2 yrs from my last MVD and the burning and eye pain are unbearable now. Plus face mussels tighten up so it's hard to talk or open my mouth. Just went to pain Dr.. I'm on 4 x 600mg Gabapentin, now new Dr. added 3 x 1/2 10mg Baclofen.. Better.....but very drugged out.

I also had many pity parties! I read about so many successes and I'm so very happy for them. Not one of my 5 surgeries didn't have complications. Spinal leak, surgicalfluid leak, brain bleed, etc. Last one I was in the hospital 2 mo.. I still have hope and try to deal with the pain as silently as I can because I know my kids are tired of hearing about it. Don't give up hope. It has only been a short time for you and the healing does take time. Hang in there!!! I find reading about other people doesn't make me feel so alone with TN. Family and friends don't understand the pain. Venting helps! Short pity parties help! Will keep you in my prayers!

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Thank you guys so much for your replies. I’m so sorry to hear that you both have been through so much :frowning: it does help to hear I’m not alone though. My surgeon is Avery skilled surgeon and has not had many (if any) patients that were not pain free after the first mvd so he seems quite baffled by my case. My mom is friends with the CEO of the big hospital here so when I was diagnosed and it was decided I needed surgery she asked him who he would send his daughter to and he said Dr. Zubay, so I know I have the best surgeon. I guess I just have to keep the hope that it will get better slowly.
I have amazing parents who have rearranged their lives to help me. I’ve sold my house, and moved in with my parents. The most amazing thing is they’ve agreed to sell their house too and we are now building a house with two full masters so I can live with them comfortably as long as I need until I’m pain free. I couldn’t ask for better support. Of course it makes me feel even worse when I snap at them or shut myself away in my room
all day because I just can’t take dealing with anyone of anything.
Ok now I’m just rambling on. Thank y’all for sharing your stories and being an extra support system. This website has been such a gift to have found.

5

So sorry Heather for all the pain you have been through. I too had unsuccessful MVD, came out of surgery with the same facial pain I went in with. Had it done in a large well known hospital by their trigeminal Neuralgia specialist. (four to five hours away from us.) Saw him twice after that, once to have the staples taken out and the second to have the hearing test, kind of cut and dried, he told me if that didn't work all the other procedures probably wouldn't work .

He wouldn't give me a RX for Dilantin to take four times a day, only three, said he saw too many people with head injuries from falls but he wanted me to work my way up on Gabapentin as far as I could bear, said I could take up to 4000 mg a day.I slowly added to my Gabapentin (I was already taking 600 mg three or four times a day) I got up to 3400 mg a day and just couldnt' handle anymore plus still had the lightning pain shoot through my face. Went to my Neurologist here, he increased my Dilantin to the 400 mg a day, we cut my Gabapentin down to 600 mg four times a day and started trying other drugs to add, found one I could tolerate called Lamotrigine, I take 100 mg four times a day. (Had to quit taking calcium before it would work for me.) and of course am still on the other two also.

Right now I am doing okay, my TN reminds me every now and then that it is still there. I still have to take precautions like slowly brush my teeth, I went for several months that I couldn't brush on my right upper side. I always cut a sandwich in half so I don't bite straight into it. I pour my soda into a glass to drink instead of drinking out of the can, I had six big hits once when drinking my soda from the can, notice I said "Once"- didn't want to do that again. Try to cover up that side of my face from the wind and I don't what all else I do.

To sum it up, I had unsuccessful MVD- left my balance off - with all these meds that may be part of my balance problem.

My mind is the pits, forget how to spell simple words and constantly looking for the correct words to use when talking.

I also started a new pain with my TN on top of the Lightening strikes, I started with a searing hot burning pain in my face

that pulsed and sent me screaming lasting fifteen minutes to an hour. I thought nothing could be worse than the striking pains but then the burning & pulsing pains started.

My Neurologist has said not to go to the Dentist for anything, not even a cleaning.

I am starting to have some tooth problems but he has said just pick my pain, TN or Teeth.

This affliction truly is a hell on earth, this site is a blessing, you find out you aren't alone and can read about other peoples experiences with different procedures for this. Don't know about you but I keep hearing, "Well, if I had pain that bad i nk I would try anything." Easy for others to say cause trouble is you can be left with even more problems than you started with.

Sorry I made this so long but that is what is nice about this site, we can talk about it and others know what we are talking about. Hang in there, cause you are definitely not alone.

xxOxx

6

Successful then unsuccessful. Meaning I was completely pain free for literally (exactly) two years to the week of my surgery. Then suddenly the pain started and within a month I was struggling to manage without drugs and since then I have been on full meds and even more than before. As long as I am dope up with my combo of drugs I have no Pain. A very large victory with an equally huge sacrifice as I work with computers 10 hours a day and I have so little attention span and focus.

However the alternative will never out weigh my stupor. I elected to not do a second surgery because I have heard so many others say they were still in pain after 2 or even more surgeries. I was very fortunate to not have any complications or side effects (like numbness, additional nerve loss) I do get good pounding headache every once in a while, but easily managed with Advil and minimal exertion until Advil kicks in.

BTW, I have mentioned on this forum a while back, I also see an amazing Upper Cervical Chiropractor Specialist. She is beyond amazing. She has several TN patients and all of them except me are pain and drug free. I am pain free and I contribute her work as a big portion of relief. Without her work, I would be on higher dosages. We are still trying to figure out why I am not responding as her other patients have. I guess I am just so special (UGH!)

Hope this helps... PS, Don't give up looking for other alternatives and supplements to your pain management.

Sincerely,

Andy

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I feel ya on other people’s input who don’t suffer from this, or any chronic pain for that matter! I know they are only trying to be helpful, but it frustrates me so quickly. I’m always just on the edge of losing it anyway after two years of near constant pain. My dad is a real joker and we’ve always shared a common sense of humor but now sometimes he tries to joke with me and I just burst into tears. I feel so bad for him because intellectually I know he obviously didn’t mean to say anything to upset me, but I’m so close to losing it all the time that I just never know when the dam is going to burst. Once it starts I have a hard time reeling it back in too because I’m really crying about everything I’ve been through, am still going through, and may still be facing in the future, nothing to do with what my dad said at all. He’s so great though he doesn’t take it personally and usually just hugs me and lets me cry. Of course the crying totally sets off bad pain attacks too. With as bad as they get I can’t imagine how bad they’d be without the meds I’m on. I’m taking neurontin 600mg 4 x a day, tegretol 200 mg 3 x a day, exalgo 8mg 1 x a day (basically 24 hour lasting dilaudid), hydrocodone/acetaminophen 10-325 ( norco) up to 3 x a day as needed when pain is just too much, plus I take Wellbutrin twice a day for my anxiety and now Xanax as needed for the PTSD this all has caused. Sometimes I think the Xanax helps the pain better than the norco because it allows me to relax instead of freaking out and focusing on the pain. Even on all of that I had a night of breakthrough pain last week where I really thought I was going to have to go to the ER. Not much they can really do there except knock me out for awhile to at least give me a break from the pain. If I’m lucky sometimes that’s enough to break the cycle. This thing we live with is a real beast. It’s a true monster inside us!

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Hi Heather, I had an MVD at Mayo in Oct. 2011 and for three months no TN pain... severe numbness and some pain and crawly feeling with that, and eye issues... then in Jan 2012 TN came back full force. I've suffered through the pain this past year and on a lot of medication and many other issues I'd not had before the surgery. I felt I was ruined. I saw a surgeon new to Des Moines that had worked with one of the top TN Dr.s in the country, (he studied under him for two years.) Well, the Dr here told me,"if I were his patient, he would want to see me and know that the surgery didn't work". So another appt. was made for me to go back up to Mayo. A real fine MRI without /with contrast was done. Then I saw my prev. surgeon. He was just as wonderful as he was before. He explained that what they saw on the MRI was not what was expected. I'd had a stroke after my surgery.The entire TN nerve from one end to the other was totally ruined. He showed me the MRI and explained it all and showed what both sides look like. No more surgery could be done. It would only cause more unrelenting pain. They brought in another Dr to talk about a deep brain cortex stimulator being implanted. When my husband and I left Mayo for our drive back to Des Moines, I pratically cried the whole way being scared to death. Right now holding off on stimulator, and staying on meds. I know, I have been told on "toxic" levels, but the other surgery is way to drastic for now.

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Holy crap that’s awful and so scary! You’d think SOMEONE would have noticed that you suffered a stroke :frowning: I’m so sorry for everything you’ve been through. I’ve had stimulator implants mentioned to me before by friends and family with other kinds of nerve damage. I wasn’t sure if there was one for TN and if so where they would place it. I guess now I know! Is that a surgery you have to be kept awake for?

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Yes Heather it is. You are put under to begin with …yeah when they open the top of your skull…Anyway you are awaken after they get you open. Then keep you awake while testing for locations. You stay in hosp. a week with temp wires sticking out , and they test and shut off and turn on stimulator. Said I’d most likely suffer some seizures and would not be able to drive for a while. When done testing and finding what works best they put you under again and instal perm. wires. Run the wire down under scull and open neck run it down to clavicle. And install battery pack. It’s like a pacemaker. I would forever be tied to Mayo. They said I would need to go back periodically for adjustment and for new battery. You know how when we get used to medicine and it either needs to be increased or we are put on another? Well this stimulator would act the same way. Once we got to a certain point…it would have been adjusted so much …that it wouldn’t work anymore…It wouldn’t stop the pain. Sometimes I feel so bad and think “what’s the point”. But then I get hope again that a new med. will come along with not so many side effects. Always gotta have hope!

11

Dear Heather,

I wish I had words of wisdom, but for now, all I can do is join your pity party. You are not alone.

Best Wishes for some relief,

JaniceW.