MVD without serious side effects?

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Has anyone had an MVD without suffering long term side effects?

I’m asking because I’m scheduled for an MVD to resolve a trapped nerve, but the many horror stories on here are putting  me off. Has anyone actually had an MVD without suffering post surgery consequences like numbness, loss of hearing, headaches and anaesthesia dolorosa etc? I appreciate that all surgery has its risks but the stories on here sound awful. Anybody out there gone through the operation with minimal post operative complications, or at least, side effects that cleared up within a few weeks? 

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  • Posted

    Unless the TN is absolutely ruining your life, I would not have this surgery.
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  • Posted

    If you’ve got a clear and unequivocal demonstration of arterial pressure on the Trigeminal nerve root, then MVD is by far the best option. Your neurosurgeon will have discussed the other available options (for “your” case) of which there are several and given you the predicted outcome. There is a huge international database of surgical and other options for TN Type 1 (is this what you have?) with detailed probabilities of likely and unlikely outcomes. 

    There are loads of people on this site who have had very successful outcomes of all the available procedures including MVD and probably several others who haven’t. However, it’s worth noting that you tend not to hear of the masses of success cases because these people get back to their full lives and don’t follow these forum pages anymore. That’s what happens in the UK with the TNA site. 

    I wouldn’t wait for replies to your query and then count up the + and - responses in order to decide. Your neurology team and your neurosurgeon should have told you exactly what the possible bad outcomes might be (which will range from “surgical strokes” down to “no adverse effects”) - and also the likelihood of complete success and relief from pain. They also will tell you the possibility of recurrence after a year or longer and what they can do if this occurs.  If you get a Teflon pad inserted the chance of that moving or falling out is pretty remote!

    Yes, I had MVD after we saw the clear hi-definition MRI results and considered what a terrible life I was having on 1600mg Tegretol per day. 

    I was only in for a short time; surgery at 17:00 on a Thursday and home by Sat lunchtime. Minor problems with hearing but they cleared up in 6 months. No surgical/wound healing probs or numbness etc. Weaned off Tegretol completely over 3 months (can’t stop suddenly in case you get a seizure) and had normal eating/drinking/laughing/kissing life from the week I got home. 

    Make sure you have all the info from your consultant and make a decision together with him based on real clinical evidence. 

    Finally, if your surgeon has done hundreds of these ops, then you should feel pretty confident.  If he is new to this, go for second opinions and referrals. 

    Very best wishes to you and keep us informed of your progress and thoughts. 

    Sorry this message is so long!

    Keep safe

    Big D 

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  • Posted

    I had MVD for Trigeminal Neuralgia in Jan 2002. No long term side effects. Short term, I suffered from Headaches

    ?for 2 weeks after surgery - but not a single headache since. The MVD surgery lasted 7 yrs, then pain came back and I had non-invasive radiation therapy (can't think of exact name at moment) that worked for 4 years, then a 2nd radiation therapy that has worked since. I never stayed on Meds long term after surgeries until this year. Now I take 200 MG of Tegretol 3 times daily (no side effects) and If pain does return I can eliminate it quickly with a 72 hr Fentanyl Pain Patch on my left arm. I mention left arm as the pain shoots on left side of face. Hope this helps.

    ?ps-my pain gets so bad on the mandibular branch of my Trigeminal nerve that I literally can't eat, drink or brush teeth when pain hits. When it gets really bad I lose about 1 pd of weight each day. In remission since Apr 2017

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  • Posted

    Sasha,

    MVD worked for me ( so far 1 year and counting)  to relieve the TN pain, but i had a LOT of complications following the procedure.  Mine was a slightly unique case though because i didn't have just a small blood vessel touching the TN nerve, in my case it was the Basilar Artery touching the TN nerve and the procedure was very complicated.  I would suggest only going with surgeons who have done PLENTY of these type of surgeries. That's what i would do if i had to do it again.  My experiences are posted so i won't retype the long story, but if you click on my name, you should be able to see my posts dating from April 2016 forward ( which was one month post surgery)

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  • Posted

    My MVD has been perfect for 13 months now with the exception of a twinge now and then . I do have some headaches but they usually occur when I am getting sinus trouble and there is a low pressure> Go For It ....... Any thing is better than the horrific pain I was having so I am grateful !!

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  • Posted

    Thank you, ben, army, michael, esther, saaz and mallory for your replies, I have found them all extremely helpful and food for thought. With the increasing stress as my op date draws nearer, my TN is getting worse and I’m having to up my dose of Tegretol, which is probably a good thing as it makes the prospect of relief through surgery seem more attractive. I really don’t want to spend the rest of my life wired up to the National Grid and in a Tegretol haze. 

    Thank you all again for taking the time to reply and share your thoughts, I really appreciate it. 

    I’ll let you know how I get on. 

    Best wishes

    Sasha 

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  • Posted

    Sasha

    I am newly diagnosed (3 months) ago and it has literally ruined my life. I am also looking for treatments. So I apologize but don't have any advice over DMV. I've gotten good advice in this forum so I'm hoping you will too. However there is another support group on fb that has helped me A LOT. If you don't have Facebook, I suggest looking into it. There are over a thousand of us that can get and give fast and good advice. t's under "Trigeminal Neuralgia support group". Hope to see you on there and good luck with your treatment.

    Paty

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  • Posted

    Sasha,

    I had MVD surgery on October 5, 2017. Before surgery I was like you taking 1600mg of tegretol a day and living in a haze. My surgery was about 6 hours because not only was my trigeminal nerve and artery touching, the artery was wrapped around the nerve. I woke up from surgery with no shocks or pain other than surgical site pain. I have been pain free and no complications at all!!! I can’t imagine not doing this surgery. I went back to work in only 3 weeks. I wish you good luck on your surgery 

    Kim

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  • Posted

    Finding a surgeon (and his/her) team with a lot of experience is critical!  My daughter's surgeon had done about 1,000 rhyzotomies and 1,000 MVD's and was open to sharing the surgical outcome numbers.  Outcomes are dependent on a number of factors- are the symptoms typical?  What can bee visualized on a high resolution MRI?  If the compression can be seen on the pre-surgical MRI a positive outcome is more favorable.  Although even we could see my daughter's compression it was not until surgery was being performed that the doctor could see that it was both an artery and a vein compressing the nerve; this is where experience comes in!  A good surgeon should be able to explain why one procedure is recommended over another, what factors affect outcome, and how many time they have done this surgery.  Remember, outcomes are different for  different sets of preexisting factors so not only do you need to consider the doctor's success rate but how your preexisting factors align with a positive outcome.   If you have typical symptom patterns success is more likely.  That's why comparing outcomes antidotally with members of this forum is problematic, while it does let you know potential outcomes many people who have had successful surgery are no longer on the site, you don't know their medical history, the level of experience of their surgeon, and how long they have had the condition.  There is some theory that earlier surgical treatment is better (even though the current standard outside of medical research hubs tends to be medicate until medication is no longer effective), this makes some intuitive sense.  In many cases, the symptoms are brought on by compression and friction from blood vessels on the nerve.  Medications only helps dampen the neurological signals from the compression to the pain centers in the brain but do nothing to affect the physical situation.  Some neurologists believe that this treatment allows the fatty cover of the nerve to continue to wear away and this is why the medication, after some time, may no longer be effective in dampening the signal sufficiently. 

    Good luck and continue to do your research and make sure that your question are sufficiently answered before surgery.  Army183 summed it up very well.  My 20 yo daughter wanted the surgery and the surgeon gave her confidence of a favorable outcome based on pre surgical conditions and his level of experience.   She had all the advantages in terms of her pre- surgical symptoms, MRI data, world class hospital care, and experienced doctor contributing to her success.  She went in on a Saturday morning and on Monday we walked across the street to a restaurant, had lunch and I took her home to rest for a couple of weeks. She had the surgery the beginning of May and about a month ago returned from back-packing around Europe with her boyfriend.  She hasn't looked back!  I wish I could guarantee this outcome for everyone and everyone had the same access to great care. We feel so fortunate and blessed and we work to advocate for healthcare access for all....  

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    • Posted

      Esther, that's great to hear.  Only a lucky few have found the right surgeon for this rare condition.  I request everyone reading to share the name and location of their surgeon when they know they have found one with a lot of experience as you have.  Can you please list who helped your daughter. Thanks!

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