Hi everyone. I was officially diagnosed in 2011 with both types of TN. Spent 2 yrs prior with pain thinking it was everything else but TN. Fast forward past the hit and miss drug trials, endless pain, etc. In late 2015 I stopped having pain, out of no where. I finally felt normal again. Unfortunately, this month a severe tooth abcess brought back thr TN pain in full force. I dont think I can physically go through it again. I see a neurosurgeon on the 29th to discuss MVD surgery. I have done thorough research but am looking for input on personal recovery stories. How long were you out of work, how does it feel, what daily life limits did you encounter, etcesearch can’t tell me what I’m looking for.
I would take a little more time before you go through with an MVD surgery. A tooth abscess can really kick things up, and takes a long time to resolve. You have a history of remission, which is great, so I think it is likely to happen again. MVD does not have a good record with TN2 types of pain and dental pain.
Take care of yourself, avoid alcohol, caffeine, sugar. Eat a really good diet and take a B12 supplement if you can handle it (I can’t–insomnia). Do research on other pain relief techniques such as lidocaine, capsaicin, medical marijuana, etc…Hopefully you can get a handle on this without surgery.
All patients are, of course, different. I had my MVD some time ago (1996). I awoke from anesthesia pain free! Only surgical pain which was minor. I was out of the hospital in 3 days, went back to work in a week. Never even had a headache. Unfortunately, my pain returned after 4 years and was on meds for many years and then went into remission, and have been there for over 12 years. As Ziggy mentioned, I take V B12, sublingually, 5000mcg daily and fully believe it is keeping me in remission. Good luck with your decision.
This could be a short term flare up due to the tooth issue, so while it’s certainly worth consulting a nerologist/surgeon, it might be worth seeing if it calms down before surgery, or discussing less drastic options first.
That said, I’ve had TN since 2007 and I had the MVD with internal neurolysis (splitting the nerve bundle in the hope that it prompts it to heal itself) about a year ago. The surgery itself went well, and honestly, recovery was quick (4 days in the hospital, then a couple weeks at home). The “side effects” were pretty benign too and I was back to normal pretty quickly. The neurolysis part (which isn’t normally done) caused some facial numbness, but it’s coming back slowly and I’m pretty used to it now. Of course that’s only an issue if you need the neurolysis done. A standard MVD is invasive, but non destructive. I needed it as there was actually no compression on the nerve detected, and surgery was my only option to stay at my current job (the medications are prohibited for what I do).
The good news is, I’ve been TN pain free since my surgery. I’m happy I went through with it. But it was certainly something I only agreed to after other options failed.
Good luck with your decision!
MVD is only suggested if there is a clear compression of the nerve. Do you have this? If you do not you really need to stop in your tracks and re-evaluate. Unfortunately there’s a percentage of doctors who throw MVD at people at a last resort of sorts even when there is no clear compression.
I also agree with several other people who have said to wait until your most recent dental issue is fully resolved before you do anything at all. Dental issues are well known triggers to set off TN and ATN. Once the dental issues are fully resolved and healed the flare could stop.
I guess the biggest thing for you to keep in mind is CAUTION.
I had MVD in 2015 for TN1 with a vein entangled around my trigeminal nerve. Vein was removed. Recovery was quite easy. Just a few weeks of minor head ache/ pressure and I was through it. The down side is after 8 months all symptoms of TN1 retuned. MVD can work for some but I would research the percentages of true success before going ahead with surgery. My surgeon now says that medications are my next best choice.
I too have experienced many remissions with this condition and am always hopeful that the next remission is just around the corner.
I do take B-12 sublingual and high quality fish oil as well as Tumeric supplements daily. Controlling inflammation is imperative with this condition
Best of luck to you my fellow sufferer
I’ve had 2 MVD procedures for atypical GPN and compression on 9th and 10th cranial nerves
First was 31October2014 second was 6March2017 … both times pain returned after 8 months … due to the invasive nature of the surgery, I’ve been unable to continue with my very specialised professional occupation since my cognitive and executive functions are impaired.
I still have the chronic pain … so as long as possible … put off MVD surgery as a last resort which might fix your nerve compression but won’t necessarily fix your pain
Lorraine, I had GPN nerve cut many, many years ago. Have been left with serious pain for ages. I was glad to have read your post. Thank you. As I have been referred to Neurological Unit for a further chat, after last MRI. Some Pica loop pressing in area of GPN. As my Neuro said, may be related, may be not.
At present I have Occipital Blocks every 3 months. B12, always. Use salt and bi carb for gum pain? Strange I know!! Unfortunately, totally unable to take usual meds prescribed for this pain. Eg head, neck, gums, throat, tongue. Other new thing my Neuro mentioned is available at a compounding Chemist. It’s called PEA. Palmitoylethanolamide. Big word, hope it delivers Big results!! So, go easy, just for today. Let’s by happy as we can be, trudging along!!
Hi, I‘ve had MVD and I would not have done it if I had known before what it was going to be like. I am now total numb on the one side, I can not taste anything, my nose runs and drips like a child because I can not feel it, I am deaf in my right ear (the side I had TN on), my right eye hurts because its dry and does no longer produce tears from the MVD. So think twice! It is NOT the silver bullet. Best of luck to you. I know what you are going through. Wheel4legs said all that.
Hi Jackie_Alley, My heart goes out to you, yet, surgery is not always the answer. Mum had 20years of pain before she had her operation and worked 100%, although her entire left face, lip, tongue was numb, although she lived with that. Then 17rs later (she was told it would only work for 3-5 yrs, but she got 17yrs out of it, it returned. She would hold her head and scream, couldn’t talk, clean her teeth or chew. Her very tongue hurt and any movement of it caused her agony. I tried every known drug and painkiller, opiates included and none did the trick. So, because she could no longer eat I felt that a liquid formulation of vitamins, minerals, amino acids and herbs would at least give her the nutrients her body needed to stay alive, so I upped her dosage from 10mls a day to 20ls three times a day and voila, all the pain went and as the twinges returned I upped her vitamin liquid and they went again. I know this sound so simple to be ridiculous, but it worked. Try this first. Sometimes its the easiest things and nutrition is what keeps our body functioning at its best. Good luck
I have bilateral TN. I am having long period of remission lasting upto 2-3 years. When pain returns I take Tegretol 200mg it works for me. Have you tried these tablets? I have had my right side surgery in 1965 since than no pain but my pain has permanently gone on that side. The left side face I have not had MVD as Tegretol controls my pain.
You should get remission soon. And may be for long time. If Tegretol does not work there are several other brand which you can try and it may work.
Best of luck
Youre re overy would be dependent on your age, general health and other issues. For me, at age 50, moderately healthy, I was back at work after one week. Just be sensible, etc. My TN was so bad pre-surgery that I didn’t care how long or bad recovery was going to be. Be brave, be tough and help your surgeon do his or her best job by being “with” them and pray. You’ll be fine.
MVD is a major surgery. If it goes well, average duration is 5 years or so, although that can vary considerably. Early on, feeling panicked and alarmed, my wife had MVD. Major vein and artery compression was found. 8 months later, however, all symptoms returned.
Now, with a better understanding of the risks involved, she opted out of doing the procedure again. We feel fortunate and blessed that there were no permanent negative side effects. She manages her pain with both diet, stress reduction, and, when necessary, medications. Yes, there are periods where it is very, very difficult. However, there are also long periods where life is wonderful and the pain manageable or even non-existent. During the difficult periods things can seem very dark, but during the low/no pain periods life never seems better. With another MVD, the risk of never having a “normal” period again where just unacceptably high for her.
I had mvd surgery in February 2017 after 8 years of tn pain. Meds were no longer helping and side effects were horrendous. I certainly don’t regret having the op as I am now pain and meds free. But (there’s always one isn’t there) facial numbness has become a real problem. To start with after the op there was numbness but it gradually disappeared almost completely. However these last few months it has returned, getting progressively worse. My eye feels as though it is being dragged downwards and, while not painful it is uncomfortable. Eating and drinking make it worse and I sometimes dribble saliva out of the corner of my mouth. I am wondering if anyone has experienced anything similar or has any advice to offer.
Unforutnately what you are experiencing is a known side effect of MVD. I haven’t had MVD myself so am unsure if there’s anything you can do.
I just had my MVD surgery on July 2nd. I avoided reading post from others prior to surgery because I know every patient is different. I am 40 years old. Other than being overweight for my height, I am in pretty good health. I take no other meds except the tegretol. I knew the surgery could be intense but my meds were no longer working. My pain was constant. At times I could not even talk. My initial MRI a year and half ago showed the sergeon a possible vascular loop but my neurologist saw nothing. I first started with 200mg twice a day. I would still have pain and some sever flare ups around my monthly cycle, then boom, stayed flared up. Was put on 400mg extended release that made no improvement. I started combining the two. 600mg three times a day. Stupid, I know. My body started rejecting this idea and the pain was still ther.
My recovery is going well so far. I have numbness in my mouth and tongue. My hearing comes and goes. Headaches when I wake up. But the nerve pain is gone. My surgeon said that I had scarring on the trigeminal nerve. He says it was probably caused by an infection I might of had in the past. He says he cleaned it up. And I should not have problems again. So the pain isn’t always just from compression. I am glad I had the surgery. I’m no delicate flower and I can usually handle pain. I had four natural births. But the pain from my TN was a monster. I will take this little discomfort. To be able to enjoy a meal without pain is like heaven.
I wish everyone the best and I’m praying we all someday are pain free. I will say this, you are your best advocate. No one can care about you more than you. Keep going till somebody listens. I had multiple teeth pulled before my dentist said enough is enough.
I haven’t been on this site in a while. There is a FB (closed) group MVD Patient Support that I found specifically helpful as to the MVD, and I was kind of focused there. I have atypical TN, and I had MVD June 25. Out of hospital in two days, and very smooth recovery. Woke up from surgery pain-free. Have residual numbness which may or may not resolve–if it remains, I’m fine with it. Mild numbness beats pain any day. My NS cauterized a vein that was compressing the 5th trigeminal (and had been visible on MRI), also padded between nerve and a large blood vessel on other side he found, and he lightly combed the nerve. I was pretty useless for two weeks at home–watched TV. Found any exertion made me tired. I would shower and get dressed and have to lie down. LOL. Week 3 much better. Week 4 greatly better. Back to work at 4 weeks, though did part-time. Could have done full if had to, but eased in part time. Full time at 6 weeks without any issue and definitely could have done it at 5 weeks. I still tire sometimes or get a light headache when I overdo, but I am GREAT and am very glad I had the MVD. I get odd things as I heal (like opposing ear closed the other day/congested, felt like I was underwater for 2 hours; then it just resolved). Recovery takes months, and while I am back to work and going out and doing things, I do feel tired in a way I didn’t use to. All good. Just wanted to touch base with you guys.