We are patients living with Trigeminal Neuralgia, here for your support.

problems after mvd surgery

Had mvd surgery almost 4 ths ago. i have lingering problems including the numbness on half the face and now dry eye problems from it. teeth are very sensitive since the only thing you feel is the teeth not the gums. Looking for others who have had to face this and how you managed to do so. Looking for any help or suggestions on coping and any new treatments that might help.Thank you and to better days ahead

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Replies to This Discussion

Permalink Reply by Tami McGough on November 10, 2009 at 10:28am

I have had MVD x 2. 2-3 yrs ago. have the same issues and have not found anything that helps. the only thing i do is rub icy hot on the side of my face near the chin, lips and lower part of the cheek, being extremely careful not to get it into my eye. the neurosurgeon said it will not hurt, just keep it away from your eye. i use thera tears to help with the dry eye. you can find them at cvs or wal-mart, they were in capsule form. REALLY do be careful not to get icy hot into your eye. it does tske a little of the edge off, i think it just makes you feel the tingling of the icy hot and you don't think about the pain. my pain is 24/7=365days a year. I have found no relief at all. take care and hope you feel better, you can read my profile. if you are not my friend let me know and i can add you. blessing, tami sue.

Permalink Reply by jamie leigh on May 10, 2010 at 6:49pm

Hi Debbie,
I had MVD just four days ago. The right side of my face is numb and it feels like i have cotton stuffed in that ear. I hope this decreases with time. How are you now?

Permalink Reply by Val on June 2, 2010 at 3:29pm

I had mvd on May 11. The whole right side of my face is numb; my teeth on that side do not come together, and my ear on the right side hurts at times. I sometimes question my hearing too. My neurosurgeon says this will go away, but it will be slow. I am a bit bothered by the numbness, but will still take this over the pain; anything over that pain!

Permalink Reply by Tom Johnson on July 10, 2010 at 8:04am

Debbie: I had my MVD 6 months ago, I am still experiencing some numbness in all the areas that were trigger points for my TN and ANT. I have to watch hot foods though, I do not have a temperature sensing on the inside of my right cheek yet, so I am carful not to eat anything too hot. Also I have noticed as different groups of nerves come back "On Line" for me they are hyper sensitive for a while, and right before they come on line my sensation is that of your arm waking up after you slept on it the wrong way, that buzzing tingling sensation.

Have you tried sensidine tooth paste or one of the other sensitive teeth toothpaste yet, and if so does it help? Check with your eye doctor on a good saline solution or artificial tears till that bunch of nerves gets working again. You may also want to check with your neurosurgeon and make sure that he or she knows about all this stuff.

Permalink Reply by jamie leigh on July 10, 2010 at 8:13am

Hi Val,
My dentist just gave me some toothpaste for my sensitive teeth called GC MI Paste Plus. He said it works much better than sensodyne and the other over the counter toothpastes...I have the same exact symptoms that you describe...I feel like my lower jaw is out of alignment and my teeth are so sensitive. My jaw aches when I smile or talk too much. Hope you have a good weekend despite the pain and discomfort.
Jamie

Permalink Reply by Bonnie Gray on July 13, 2010 at 10:30pm

Hi,
I had my MVD approx. 6 weeks ago (June 2/10) on my left side. The severe TN pain is pretty much gone except once in a while (like tonight) I get a zinger but it only lasts a split second....thank God. The incision area and the area around my left ear is still very sensitive, like a bruise and also a little numb, and it is hard for me to sleep on my left side still. My bite is also a little "off" since the surgery. So far, no dry eye. I am also having a few shocks on my right side. Is anyone else experiencing TN on the opposite side?

I am anxious to see how you and others are coping with the numbness and if your doctor(s) say whether or not it will go away with time. Thanks and I wish all of you pain free days soon.

Bonnie Gray

Permalink Reply by Debbie Burns on July 15, 2010 at 10:18am

Hi i had my surgery aug of 09 almost 1 yr ago. I still have the numbness on the right side of my face. the dry eye is still bad and use drops daily many times aday. at times my face gets real tight and pulls near my cheak and eye. at times it feels like something is crawlng on me but it is the nerves. I started getting little zingers of electric some little some you go oh no but they do not last more then a few secounds. behind my ear also is sensitive and has a bump along the line. i noticd that with the weather and stress does change how i feel. solution stay away from stress and hope the rain goes away. yes it is better then the severe pain i was in but this is annoying 24/7 good luck to everyone who suffers from this

Permalink Reply by Linda Kindle on October 1, 2010 at 9:03am

Hi Debbie, I had MVD surgery on Aug. 30th of this year. My TN pain was on the right side of my face, just above my upper lip, nose and jaw area etc. Since my surgery I have not had any TN pain, not even a small shock. I did experience some numbness in the corner of my right lip area. I called my Dr. and he said it should be only temporary and to give it a few days. He was right, after about 3 or 4 days it just disappeared.
I do have an annoying "tingling" sensation in the area where my TN pain was. I also had this sensation before my surgery. I talked to my surgeon concerning this on my 3 week check-up and he said it was from the packing touching the nerve. He said; the nerve was very irritated from the blood vessel that was laying against it and that this sensation would go away in time as it all healed. I am feeling also a little bit of the same sensation, in the same area, on the left side of my face now, which does scare me some. I was wondering if anyone else had this same problem after MVD surgery.
The incision area and the area behind my ear is still sore , feels also like a bruise, but I do know it will take longer to heal from the surgery because of the extensiveness of the surgery, opening into the brain. My surgeon described how he took out the bone and tissue, placed in the padding, fused it all back together and then enclosed the incision. So I do know that it is going to take awhile to heal. I am just concerned if any one else after surgery has had a problem with this "tingling" sensation, seems worst, when I lay my head down or backwards. I am so proud that I have not had the TN pain anymore I still have the fear with this sensation is it going to come back again!

Permalink Reply by Pat on October 1, 2010 at 10:46am

Hi all,
I had an MVD 8 months ago now and am still numb (teeth, lips, tongue, nose tip, inner ear) with painful aching in my teeth and odd tingling sensations across my face and tongue. It sounds like those of us who have numbness and various forms of pain or odd sensations are now dealing with neuropathic, intractable pain. I was told that the scale ranges from mild to moderate to extreme, which is AD. In my case it's deafferentation and I was told it was moderate. If this 24/7 torment is moderate, I cannot imagine how anyone deals with AD.

So far I have found little that helps. I've tried all of the drugs, anti-depressants, and muscle relaxants. The only thing that helps some is Trileptal and a night bite guard that my dentist made to keep me from clenching my teeth. I notice that it has helped calm down the jaw muscles which play a big part in adding to or lessening the level of pain. Also I was given Nasonex by a pain doctor who said it would help keep the sinuses open and help some during barometric pressure changes - it does help some. So does EMLA cream with zostrix or capcasin topical over it. If you don't have the EMLA as a base, the topicals will burn your face too much. However, I personally cannot stand the numbing effect the topicals have because I already find the numbness that I have difficult to tolerate. What disturbs me the most is that I can no longer chew solid food (have lost 30 lbs.) and cannot talk for any length of time without serious pain. As a result I can longer work in my field of consulting.

Ironically I chose to do an MVD so that this type of nerve damage would be next to impossible and instead the MVD created nerve damage! Like all of you I also live with the fear that the pain could come back on top of the nerve damage done. Has anyone ever had any significant improvement with the painful numbness once they passed the 6 month mark after an MVD??? And, how do you all hold on to hope - I'd love to know. My best,

Pat

Permalink Reply by Debbie Burns on January 29, 2011 at 8:06am

have been out of touch on this site for awhile. an update on my mvd surgery. i had my surgery aug 2009. after t he surgery i was left with a numb 1/2 of my face pain and burning on the upper cheek tighten muscles and dry eye. some days it is really light and you can forget its there and then there are days the cheek burns and the mouth feels like there is a hook pulling the lip up. my eye also gets very sticky at times and watery at other times.i have evan felt like there was a bug crawling around my eye from nerves moving. i also have no temp feeling on half the mouth with very little feeling if something is on that side of my tongue. this was from the start and still is with me almost 11/2 yrs later. the dr told me it shoulld go away after 6 mths if it didnt he said it probably wont. he also said very small % of people end up like me lucky me. i guess it still is better then the sharp painful zings which i di get every once in awhile but it is something that is annoying and you do have to get use to it. im still trying. they said i had a really bad situation in my head with everything all twisted and inflammed so i guess the best was done as they could do. dont let this discourage anyone cause there are alot of success stories take care everyone good luck

Permalink Reply by Pat on January 29, 2011 at 9:43am

Hi Debbie,

I realize this is of no consolation but I am one year out from my MVD and have trigeminal deafferentation as a result of that surgery. That means 1/2 of my face is numb too, tingling/prickly sensations in my tongue and face, along with jabbing toothache pain in my upper and lower teeth. I have intractable pain when I try to talk or chew food now. So I've lost 25 pounds that I couldn't afford to lose and also lost my career as a business consultant since I can't converse or make presentations. To say the MVD turned my life upside down is an understatement.

We are in the 1% group of rare complications, or nerve damage, that is not supposed to happen with MVD surgery - that's the supposed advantage of that procedure. In my case I question the competence of the surgeon (who supposedly does 100 MVD's/year). That's because he could not answer one question directly when I asked about the 3 potential insults that occurred to my nerve - removal of arachnoid tissue, a vein, and an arterial compression. Mine was done at a teaching hospital and now I actually question who did my actual surgery having learned that residents-in-training well could have.

There are success stories out there which is why I chose to do the surgery. Hindsight being 20/20 vision, I'd advise anyone to make sure that they do their research and then pay attention to their instincts and follow them about treatment choices. I sensed that my neurosurgeon was an arrogant, aloof individual and unfortunately I was right - he dropped me like a hot potato afterwards. I just assumed after care was a normal part of "standard of care". Truth be told, I allowed my fear to rush me into a decision of convenience (because he was only 2 hours away) vs. getting at least one or two other opinions and traveling out of state. I hope anyone reading this and thinking about surgery will learn from my mistake. Best wishes to you, Debbie. You are not alone and I feel for you. Pat

Permalink Reply by Bob Snodgrass on January 29, 2011 at 10:29am

Hi Debbie!

Updating your status is important, and very much appreciated.

Concerning your MVD outcome; your saying - "dont let this discourage anyone cause there are alot of success stories", well, that is just a Great attitude!

My MVD left no injuries, it provided relief for 2 weeks to the day...I guess we both have a lot going on in our heads; )

Thank you for sharing!