Who has had an MVD?

HI

I am due to have an MVD soon, just want to know other people's experiences please.

Many Thanks

Hi Natalie, I will look out for replies here too as I was diagnosed by surgeon 2 weeks ago (finally after suffering for 4 years!) and he suggested that I have MVD too. I havn’t agreed yet, need to get my head around it, but likely that I will sooner rather than later! Hope you are well today.
Suzanne

Hi Natalie and Suzanne,
I don’t want to discourage you from the surgery, but I will share my experience with MVD. My pain didn’t seem to be typical - I had a constant, deep ache in my ear and jaw with terrible teeth sensitivity. I would get shots of pain in my ear, popping in both ears and lots of pressure. When I mentioned atypical TN to my neurologist he said something like, “TN is TN” and didn’t want to label it ATN. When I told him I don’t seem to have a trigger point like others do, he said my teeth were my trigger point. After months of tegretol, becoming very sick on another med, and suffering from pain when not on tegretol, my neurologist sent me to the surgeon who specializes in MVD. This dr. examined me and was very confident that he “saw” a compression on my MRI…that is why I decided to have the surgery. Well, when he went in he didn’t see a compression. He moved some nerves and pinched the trigeminal nerve. So…my surgery was not a complete success. What I have learned is that the MRI cannot be depended on to determine if there is or isn’t a compression. I have also learned to speak up more confidently to my doctors. If I have a gut feeling I need to believe it rather than letting a doctor’s opinion change my mind so easily. For those who have typical pain (a trigger point on the face with intermittent, electric shock like pain) it seem MVD is more successful and I would recommend it if several doctors have diagnosed you with TN. However, for those with atypical TN I would be more hesitant. One never knows though. As my doctor said, “Every BODY is different”. Good luck with your decision!

Hi Natalie
Thanks for the post. I am considering MVD having suffered for 8 years now. The thought scares the hell out of me so want to know experiences of those that have been through it rather than just going on what the Docs tell me.

I am sure you are looking forward to being pain free. Do keep us updated on how you get on.

Good luck and here’s wishing you a successful pain free outcome.

All the best

Ajay

HI AJay,

Thanks for your comments. Its a hard choice to make, that’s for sure. What is your pain like Ajay?

Best wishes
Nat xx

Ajay said:

Hi Natalie
Thanks for the post. I am considering MVD having suffered for 8 years now. The thought scares the hell out of me so want to know experiences of those that have been through it rather than just going on what the Docs tell me.



I am sure you are looking forward to being pain free. Do keep us updated on how you get on.



Good luck and here’s wishing you a successful pain free outcome.



All the best



Ajay

Hi Natalie,
I had MVD in May 2009. I was 55 years old. I had TN for eight years and was on Tegretol, Lyrica and Baclofen. I was at the end of being able to take the Tegretol(which was my main med for eight years) and was having double vision and level of med was high. Even though I knew about the MVD, I said I wouldn’t have this done. I researched alot and found a neurosurgeon with experience with this surgery only 3 hours from home. It took me 6 months to make up my mind and yes this is a scary decision. I have been pain free for over a year now. I have my life back and feel very normal now. Untill I came off all the meds, I didn’t even realize how much I was living in a daze. I had the surgery on a Thursday and came home on the following Saturday. Ofcourse their is head pain, but they have pain meds for that. I was off pain meds altogether within a week. I needed someone with me the first week at home. After that I was alone and besides being carefull, I was just fine. I didn’t have any complications from having the surgery. I was released to go back to work after 6 weeks. I was weaned off all meds by three months. If this pain comes back, which they say can happen, I would not hesitate to have this surgery again. I can enjoy my life, family and especially grandchildren again.
I was able to talk to a person who had the MVD three years previous by the same neurosurgeon. He was 15 years older than me and he said it had given him his life back. I made my decision to have this surgery after talking to him. It was such a relief to know I was finally going to try to do something.
My best advise to you is make sure the neurosurgeon has alot of experience in this surgery and does several monthly.
Good luck and hope you can become pain free.
Connie

Hi Natalie

Symptoms are pain on the left side of my face triggered by brushing, chewing or touch. In winter a cold breeze can set it of. Occasionally I get shooting electric shocks which can last from 30 mins to an hour. Currently the pain is bearable as my meds were increased in May when the pain was intense. The problem now is the meds have slowed me down and make me drowsy through out the day.

I am thinking about MVD as I don’t think I can continue on the level of meds and their effects plus the pain. I want to get back to normal and have a life. As you know it is tiring dealing with the constant pain and the effects of the meds.

Ajay

Hi Natalie,
I had MVD about three years ago, the decision to do it was not hard due to the pain levels. I even considered the 5% odd fatality rate from the surgery as a good outcome. I was lucky as one of the top people in the field of MVD was my doctor, Dr Vini Gautam Khurana - Australia, Canberra, ACT.

As for the experience:

  • Earache, that was quite painful, lasted about four weeks,
  • Tinnitus, was about the volume level of people talking, made sleep near impossible, last roughly five weeks,
  • Micro Skull fractures, the clamps they used to hold the head still had to be super tight, pain was ok, more itchy, lasted three to four months,
  • Numbness in the right leg on the surface of the thigh, they had no idea why, lasted for just over a year,
  • The wound site, itchy as, no real pain there, got to watch it though, make sure ZERO infection gets in there as it will go straight to the brain, that’s not good at all, my wife said I was low risk of that, she pointed out she was not talking about the infection, and
  • HEADACHE, my head felt like it was going to explode. Seems after surgery I said I didn’t need pain meds etc. I was still out of it from the surgery anaesthetic. I was wishing for TN all the night, docs could only give me enough meds to keep me from going insane without giving too much and stopping my heart.

But the best experience:

  • NO TN, not even a mild headache, nothing, zip, dead parrot. I love to read, my wife brought my favourite book to the hospital, I read the first line and sobbed. TN had stolen my love of reading.

Sadly though the TN is on the way back. The doc said the nerve in my head was the most damaged he’d seen, best he could do was crush it and hope that when the TN returned it was manageable (with the nerve as it was he was 80% I would get TN again). Also due to all the scar tissue inside he recommends only having MVD once. As going back in is risky.

Hope things work out for you if you travel down this path, if not I hope you are able to cope with TN in another way. A drug called Lyrica was a life saver for me. Wish you all the best. If I can answer anything more about the MVD or expand on the above give a hoy.

Kind Regards,
Q

P.S. Awesome cat in your picture!

HI Connie and thankyou so much for you positive comments, it really is good to hear! I am so pleased its worked for you and you are having relief from the vile pain. Long may it continue Connie!!

Just wondering Connie, did you have classic TN or Atypical? Im getting confused with it all.

Best wishes
Nat xx

Connie said:

Hi Natalie,
I had MVD in May 2009. I was 55 years old. I had TN for eight years and was on Tegretol, Lyrica and Baclofen. I was at the end of being able to take the Tegretol(which was my main med for eight years) and was having double vision and level of med was high. Even though I knew about the MVD, I said I wouldn’t have this done. I researched alot and found a neurosurgeon with experience with this surgery only 3 hours from home. It took me 6 months to make up my mind and yes this is a scary decision. I have been pain free for over a year now. I have my life back and feel very normal now. Untill I came off all the meds, I didn’t even realize how much I was living in a daze. I had the surgery on a Thursday and came home on the following Saturday. Ofcourse their is head pain, but they have pain meds for that. I was off pain meds altogether within a week. I needed someone with me the first week at home. After that I was alone and besides being carefull, I was just fine. I didn’t have any complications from having the surgery. I was released to go back to work after 6 weeks. I was weaned off all meds by three months. If this pain comes back, which they say can happen, I would not hesitate to have this surgery again. I can enjoy my life, family and especially grandchildren again.

I was able to talk to a person who had the MVD three years previous by the same neurosurgeon. He was 15 years older than me and he said it had given him his life back. I made my decision to have this surgery after talking to him. It was such a relief to know I was finally going to try to do something.

My best advise to you is make sure the neurosurgeon has alot of experience in this surgery and does several monthly.

Good luck and hope you can become pain free.

Connie

Hey Ajay,

Sounds awful Ajay, I really hope you get some relief. Are you able to work?

Nat xx

Ajay said:

Hi Natalie


Symptoms are pain on the left side of my face triggered by brushing, chewing or touch. In winter a cold breeze can set it of. Occasionally I get shooting electric shocks which can last from 30 mins to an hour. Currently the pain is bearable as my meds were increased in May when the pain was intense. The problem now is the meds have slowed me down and make me drowsy through out the day.



I am thinking about MVD as I don’t think I can continue on the level of meds and their effects plus the pain. I want to get back to normal and have a life. As you know it is tiring dealing with the constant pain and the effects of the meds.





Ajay

HI Q,
Thanks for your reply. Im sorry the pain is returning. Whats next for you then? I know what you mean I was so bad In Nov/Dec last year I did not want to wake up to face another day. Why did you have so much nerve damage?
Why is this thing so awful?. I hope it does not return in full force for you.

Many Thanks again your comments are really appreciated!

Natalie xx

Q said:

Hi Natalie,
I had MVD about three years ago, the decision to do it was not hard due to the pain levels. I even considered the 5% odd fatality rate from the surgery as a good outcome. I was lucky as one of the top people in the field of MVD was my doctor, Dr Vini Gautam Khurana - Australia, Canberra, ACT.



As for the experience:
  • Earache, that was quite painful, lasted about four weeks,
  • Tinnitus, was about the volume level of people talking, made sleep near impossible, last roughly five weeks,
  • Micro Skull fractures, the clamps they used to hold the head still had to be super tight, pain was ok, more itchy, lasted three to four months,
  • Numbness in the right leg on the surface of the thigh, they had no idea why, lasted for just over a year,
  • The wound site, itchy as, no real pain there, got to watch it though, make sure ZERO infection gets in there as it will go straight to the brain, that’s not good at all, my wife said I was low risk of that, she pointed out she was not talking about the infection, and
  • HEADACHE, my head felt like it was going to explode. Seems after surgery I said I didn’t need pain meds etc. I was still out of it from the surgery anaesthetic. I was wishing for TN all the night, docs could only give me enough meds to keep me from going insane without giving too much and stopping my heart.



    But the best experience:
  • NO TN, not even a mild headache, nothing, zip, dead parrot. I love to read, my wife brought my favourite book to the hospital, I read the first line and sobbed. TN had stolen my love of reading.



    Sadly though the TN is on the way back. The doc said the nerve in my head was the most damaged he’d seen, best he could do was crush it and hope that when the TN returned it was manageable (with the nerve as it was he was 80% I would get TN again). Also due to all the scar tissue inside he recommends only having MVD once. As going back in is risky.



    Hope things work out for you if you travel down this path, if not I hope you are able to cope with TN in another way. A drug called Lyrica was a life saver for me. Wish you all the best. If I can answer anything more about the MVD or expand on the above give a hoy.



    Kind Regards,

    Q



    P.S. Awesome cat in your picture!

HI Q,
forgot to say, My Cat is called Elliot (Big El). He is fed up of me telling him about this TN!

Natalie said:

HI Q,

Thanks for your reply. Im sorry the pain is returning. Whats next for you then? I know what you mean I was so bad In Nov/Dec last year I did not want to wake up to face another day. Why did you have so much nerve damage?

Why is this thing so awful?. I hope it does not return in full force for you.



Many Thanks again your comments are really appreciated!



Natalie xx



Q said:
Hi Natalie,
I had MVD about three years ago, the decision to do it was not hard due to the pain levels. I even considered the 5% odd fatality rate from the surgery as a good outcome. I was lucky as one of the top people in the field of MVD was my doctor, Dr Vini Gautam Khurana - Australia, Canberra, ACT.


As for the experience:
  • Earache, that was quite painful, lasted about four weeks,
  • Tinnitus, was about the volume level of people talking, made sleep near impossible, last roughly five weeks,
  • Micro Skull fractures, the clamps they used to hold the head still had to be super tight, pain was ok, more itchy, lasted three to four months,
  • Numbness in the right leg on the surface of the thigh, they had no idea why, lasted for just over a year,
  • The wound site, itchy as, no real pain there, got to watch it though, make sure ZERO infection gets in there as it will go straight to the brain, that’s not good at all, my wife said I was low risk of that, she pointed out she was not talking about the infection, and
  • HEADACHE, my head felt like it was going to explode. Seems after surgery I said I didn’t need pain meds etc. I was still out of it from the surgery anaesthetic. I was wishing for TN all the night, docs could only give me enough meds to keep me from going insane without giving too much and stopping my heart.



    But the best experience:
  • NO TN, not even a mild headache, nothing, zip, dead parrot. I love to read, my wife brought my favourite book to the hospital, I read the first line and sobbed. TN had stolen my love of reading.



    Sadly though the TN is on the way back. The doc said the nerve in my head was the most damaged he’d seen, best he could do was crush it and hope that when the TN returned it was manageable (with the nerve as it was he was 80% I would get TN again). Also due to all the scar tissue inside he recommends only having MVD once. As going back in is risky.



    Hope things work out for you if you travel down this path, if not I hope you are able to cope with TN in another way. A drug called Lyrica was a life saver for me. Wish you all the best. If I can answer anything more about the MVD or expand on the above give a hoy.



    Kind Regards,

    Q



    P.S. Awesome cat in your picture!

Hi again
I had TN but in the eighth year it was becoming a constant pain in my mouth. It was along the lower left jaw and effected my face, lower teeth and tongue.
Connie

Natalie said:

HI Connie and thankyou so much for you positive comments, it really is good to hear! I am so pleased its worked for you and you are having relief from the vile pain. Long may it continue Connie!!

Just wondering Connie, did you have classic TN or Atypical? Im getting confused with it all.

Best wishes
Nat xx

Connie said:
Hi Natalie,
I had MVD in May 2009. I was 55 years old. I had TN for eight years and was on Tegretol, Lyrica and Baclofen. I was at the end of being able to take the Tegretol(which was my main med for eight years) and was having double vision and level of med was high. Even though I knew about the MVD, I said I wouldn’t have this done. I researched alot and found a neurosurgeon with experience with this surgery only 3 hours from home. It took me 6 months to make up my mind and yes this is a scary decision. I have been pain free for over a year now. I have my life back and feel very normal now. Untill I came off all the meds, I didn’t even realize how much I was living in a daze. I had the surgery on a Thursday and came home on the following Saturday. Ofcourse their is head pain, but they have pain meds for that. I was off pain meds altogether within a week. I needed someone with me the first week at home. After that I was alone and besides being carefull, I was just fine. I didn’t have any complications from having the surgery. I was released to go back to work after 6 weeks. I was weaned off all meds by three months. If this pain comes back, which they say can happen, I would not hesitate to have this surgery again. I can enjoy my life, family and especially grandchildren again.
I was able to talk to a person who had the MVD three years previous by the same neurosurgeon. He was 15 years older than me and he said it had given him his life back. I made my decision to have this surgery after talking to him. It was such a relief to know I was finally going to try to do something.
My best advise to you is make sure the neurosurgeon has alot of experience in this surgery and does several monthly.
Good luck and hope you can become pain free.
Connie

After 10 yrs of dealing with TN I had MVD surgery last January 14th. I ended up spending 16 days in the hospital due to a Cerebral Spinal Fluid leak that came out my left nostril for 10 days. 6 of those days were spent in ICU with a lumbar drain in my back. The drain drew off cerebral spinal fluid to lower presure so the tear in my dura could start to heal. For 23 1/2 hours a day I could not even lift my head off the pillow. The strong narcotics that were IV pushed to treat the spinal headaches that come as a result of the drain caused my bowels to totally shut down.



I did a lot of research before I went into surgery so I knew CSF leaks were the most common post-op complication. Had the CSF come towards the incision I would have been fine as it would would have not leaked through the incision. The fact it came out my nose meant air could get in around my brain so it needed to be treated agressively. That and the fact the risk for meningitist went up quite high with the leak so it could not be left alone.



My neurosurgeon told me it takes up to a year to totally recover from MVD surgery even if one does not have the surgery complications I had. Boy, was he right. I was also warned not to worry if I did not get good pain relief right away. That the nerve was not injured over night and it would not heal over night. Boy was he right again!! It was 6 months before I started getting good pain relief.



After a great year the TN came backWas a very hard winter and spring here. Back and forth weather kept triggering the TN, but now the weather has warmed up and stayed stable I am back in remission.



I do not regret having the surgery. I would not have it done again for 2 reasons though. One, with all that happened I do not want to even come close to running the risk of going through that again. 2, everything I have read shows that the more the nerve is manipulated the greater the risk for long term problems like AD.

Hi Natalie

I am between contracts at the moment so its easier to deal with however the stress of looking for another contract does not help.
When I was working it was hard work being in meetings, having conversations or taking calls.

This is one of the reasons I am thinking of MVD. The thought of getting back to work and not performing to the fullest, scares me.

Its good to see the responses you are getting, very helpful and encouraging.

Ajay

Natalie said:

Hey Ajay,


Sounds awful Ajay, I really hope you get some relief. Are you able to work?



Nat xx



Ajay said:
Hi Natalie

Symptoms are pain on the left side of my face triggered by brushing, chewing or touch. In winter a cold breeze can set it of. Occasionally I get shooting electric shocks which can last from 30 mins to an hour. Currently the pain is bearable as my meds were increased in May when the pain was intense. The problem now is the meds have slowed me down and make me drowsy through out the day.



I am thinking about MVD as I don’t think I can continue on the level of meds and their effects plus the pain. I want to get back to normal and have a life. As you know it is tiring dealing with the constant pain and the effects of the meds.





Ajay

Hi Natalie,
I had typical pain from the start with atypical pain the last 4 months before my surgery. My surgery was a breeze and I wish the same for you. I didn’t have any surgery pain. I didn’t have a headache or nausea. My pain relief was very good and got better over time. But it didn’t go away. I take roughly the same medicines but they relieve the pain now. But I’m afraid my pain is getting worse now. I am considering surgery again but the pain is still much better than pre-surgery. But I have read that there is a better outcome with the second surgery if it is done soon after the first. But I probably have already missed that chance. It has been 14 1l/2 months since my surgery. Please have someone post while you are recovering from surgery. When is your surgery?
Liz

Hey Liz,

Thanks for your reply. I have not had my date come through but I have many doubts about it all. The surgeon said August/September. What a dilemma! I hope I will be like you, I really do.
.
Liz K. said:

Hi Natalie,
I had typical pain from the start with atypical pain the last 4 months before my surgery. My surgery was a breeze and I wish the same for you. I didn’t have any surgery pain. I didn’t have a headache or nausea. My pain relief was very good and got better over time. But it didn’t go away. I take roughly the same medicines but they relieve the pain now. But I’m afraid my pain is getting worse now. I am considering surgery again but the pain is still much better than pre-surgery. But I have read that there is a better outcome with the second surgery if it is done soon after the first. But I probably have already missed that chance. It has been 14 1l/2 months since my surgery. Please have someone post while you are recovering from surgery. When is your surgery? Liz

HI Ajay,
Im off on long term sickness right now, nothing has been the same since all this happened. I hope you get sorted soon.
Nat xx

Hi Natalie

Thanks. Like you I too am hoping to find a solution. Hope you are getting the confidence from the replies you have been getting for the MVD.

All the very best.

Ajay

Natalie said:

HI Ajay,
Im off on long term sickness right now, nothing has been the same since all this happened. I hope you get sorted soon.

Nat xx

Hi Nat,
As you are probably finding out, each case of TN is different but without a doubt MVD is the most successful treatment. I had MVD in May and, I’m not going to sugar coat it - post surgery was rough. Thankfully it was short - appx 24-30 hrs of heavy discomfort. Funny thing, I did get electric “shocks” in intensive care post surgery, and it was a reminder that nothing compares to TN. I’m still on meds post surgery. I have had smaller jolts of pain, and thankfully nothing like what I had previously. My neuro’s had let me know this may take a year before they will know if surgery is successful. I’m OK with that. I’m hopeful i can click down on meds. One thing for sure is I’m absolutely 100% glad I did the surgery - win or lose. I’m not in pain currently.

I would encourage you to do it. My Neuro - who is young - only had a small number of MVD’s under his belt. I was totally fine with that. He did a awesome job. Very clean, used dissolving stitches, scar not even noticeable. I know he researched the best way to go about it. My sense is that he was involved and paying attention to me and the upcoming procedure.

Hope that helps.

Andy