I had Gamma Knife about a year ago and unfortunately it didn’t work. So my neurologist feels MVD is the way to go. I guess I feel it is too as the pain is awful and I can’t tolerate the meds anymore. I have no memory and am always loopy. I’m looking for anyone who has had the MVD and what they’re outcomes have been, both good and bad. Thank you in advance.
If you search using my username you should see my posts here. I had the surgery for GPN just over a year ago with a positive outcome.
Awesome, I’m going to check right now. Thanks so much!
Hello Monkey Mom,
I had MVD in 2015, and it was successful. My Trigeminal was on my right side of face. The Meds were killing me, and I had no choice to have the operation. The MVD did have a side affect for me. I have pulsing and buzzing in my ears 24/7 and is a really challenge to live with every day!!! I have learned to live with it, and is sure better than the facial pain. I hope helps you with your decision. I wish you the best and hope this is helpful?k
MVD is a major decision. Before going that route, it is a good idea to try out other, much less evasive options.
My wife had MVD. It worked for 8 months, then TN came raging back. Now she uses Calmare treatment. Expensive, but completely non-evasive and works well for her. Fortunately her nuerologist used an acrylic patch rather than a metal mesh one in her MVD surgery, otherwise she would not have been eligible for calmare treatments.
Also, she is on a strict anti-viral diet, which seems to help a lot. We are pretty sure her TN is due to virus, and not vascular compression.
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It is interesting that you believe that your wife’s TN is caused by a virus since I have recently been told that I do not have TN rather, I have shingles of the brain stem. I have never heard of Calmare treatment can you tell me what it is. Also, where did you find the “anti-viral” diet. I am in constant pain that no amount of drugs will help. Thank you
TN for some reason is almost always associated with vascular compression. However, any kind of trauma to the trigeminal nerve can result in TN; consider how many people developed TN after dental procedures for example. Virus’ are known to settle in the trigeminal nerve, and would most certainly express itself as pain.
The virus issue is particularly vexing. As mentioned, my wifes approach at this point is to follow a very strict diet in order to support her bodies own efforts to fight it. Patience is required, she expects this to take at least 6 months…if it works. And when fighting virus’, what works for one person body may not work for anothers. I can get more details on what she is doing specifically, but research and personal trial and error may be what is needed.
Calmare does not ‘fix’ the root cause, it just changes how your brain interprets the signal it is receiving from the nerve. When the nerve sends the signal “I’m hurting”, the brain deciphers it instead as “everythings ok here”, and consequently the patient feels no pain. It’s pretty remarkable to watch. She can go into the center in significant pain, get hooked up to the treatment, and immediately the pain is gone. Some big asterisks though; it’s expensive, you must go to a skilled practitioner (my wife goes to Dr D’Amato who has clinics in Naples Florida and Rhode Island), it’s impact is most effective when the pain is neuropathic and not the result of an ongoing damaged tissue issue (it can still work, but you will be back at the center at some point getting the treatment again, as the brain is smart enough to figure out at some point that something actually is wrong, and begins to interpret the signal as pain once more), and, as I mentioned, if you have any metal in your cranial space it will not work. Lastly, some people just have more elasticity in their brain, and the procedure works. For others the brain refuses to make adjustments. Another dead end can take an emotional toll.
One point of note; my wife went in for two week of treatment last October. Almost four months of remission followed. She has come out again (she went back to the treatment starting yesterday. First day went great), but this time the pain is in only one branch of the nerve rather than two. She attributes that to her ongoing anti-viral diet.
My best advice is to be patient. When one door closes, go find the next one. Have a plan and keep working at it. With TN there is a lot that’s out of your control, but a determination to never give up is always in your grasp. Don’t be discouraged when what worked for one person doesn’t work for you; your body is diferent, and the root cause of your TN is probably diferent, but one day you’ll figure out what works for you. We spend a lot of energy, faith, and prayer, and it has made a tremendous diference during the most difficult, painful days.
Success rates with MVD following a Gamma Knife are somewhat lower that when the procedure is used as a first surgery. It’s really going to depend on whether the GK procedure left adhesions between the nerve and surrounding structures. And those are unlikely to be fully visible in MRI imagery. However, in the 20 years I’ve been talking with TN patients, I’ve seen multiple papers in medical literature which a general success rate for MVD as a second procedure, in the range of 50%-70%. An alternative to MVD would be some form of cortex stimulator. These devices are generally regarded as “experimental” by insurance companies so the surgery and follow-up can be expensive. Suggest you be advised by a neurosurgeon familiar with both MVD and cortex stimulators, on whether you seem to be a candidate for either. You might look up Dr. Ken Casey who practices outside Detroit MI. He’s expert in both procecdures.
Well, I thinking that I may end up having the MVD. Last week went to the neuro and he increased my Lyrica. Said that I was on a low dose. Well, the pain is wicked and lasting longer each time a shock comes. I do know when it is coming some times as I get facial surface numbness - three quarters of my face only. Left eye is not affected. However, then a headache to migraine appear. My hope is that I am a candidate for MVD.
Unfortunately, I am also going through iron IV infusions over the next three weeks as my iron stores are extremely low. Between the TN and low iron, I am going crazy.
Going to call the neuro and explain what is happening. He did mention that he would send me to a neuro-surgeon. So we will see.
Thank you for explaining Calmare and how effective it has been for your wife. I have tried every medication out there for TN, plus Cyberknife, a nerve block, a surgically implanted neurostimulator and a Ketemine IV. The pain doctor discharged me a couple of months ago because he was out of options. A well known neurosurgeon in Ft. Worth checked my MRI and said that I was not a candidate for MVD surgery. Mayo in Phoenix said they have nothing to offer me. Working through the University of Texas I was able to find a neurologist that specialized in facial pain. He just does consultations so he has referred me on. This doctor is the one that put forth the theory that I do not have ATN but rather a virus (shingles) of the brain stem. When I saw that you believe your wife has a virus attacking her trigeminal nerve I thought that perhaps whatever she was doing to help her pain would also help me. I live in a small town outside of Austin, Texas. I do not believe that Calmare therapy is available in Austin, I would probably have to travel to Houston or Dallas. When you hurt you just want to cling onto anything that will give you some hope.
Thank you for your reply.
Blessings to you both.
Hi Nancy
Please tell me more of this shingles of the brainstem?I have never heard of that.Who diagnosed it?And what are you getting to help with the pain?
thanks
I’ve had 2 MVD’s in the past 20+ years with TN. Most of us feel the procedure is well worth the try. Success rates are generally better than Gamma Knife, so hang in and think about having it. Talk to the surgeon in depth first to be sure he/she feels it will have a good chance of providing some relief based on your situation.
I hear MVD is usually the way to go. I had 2 of them but I have MS too. Recently the nerve grew back to touching and now I am gonna have gamma knife as I hear it usually works for MS patients. The first time I went from 1600 carbamezapine to 600. It worked for years until the nerve grew back. I think I had the second surgery too fast and I was still recovering but they bad-mouthed my first doctor, and I also had a 3rd opinion. Anyhow, recovery is a little hard for the surgery but it will probably work.
I had MVD (TN types I & II) in 1998 after four miserable years of one med failure after another and intolerable side effects. They found one artery and 2 veins compressing the nerve. The pre-op MRI was inconclusive. I woke up TN pain free and remained that way for almost 9 years. Then the monster came back with a vengeance. In 2006 I had a repeat MVD and they found the teflon paddies has slipped and there was a boatload of scar tissue tethering the nerve. They cleaned everything up and again I was pain free. Unfortunately, my freedom only lasted about 9 months. I assume I have more scar tissue tugging on the nerve, since I have a tendency to be a scar tissue-former. I then had Gamma-Knife, but it did not do anything. For the past almost 10 years I have tried every med out there for relief,with no success and too many side effects. Right now I am just keeping my pain level low enough (low dose Oxycontin ER) that I feel like I have somewhat of a life worth living. I get a lot of breakthrough pain affecting my left eye though. May be looking into some kind of nerve stimulator, but first have to jump through all the neurology “hoops” before I can get referred. This disease sucks…as does our medical care system…and I fear for us that it is only going to get worse. Good luck to you…and keep us posted on how you are doing.
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You are an inspiration to me. I’ve had TN 9 years total and am scheduled for MVD April 18th. I can’t tolerate the meds anymore and need higher and higher doses to help at all. Currently on oxcarbazapine, 1800 mgs daily, no memory light headed walking crooked. I can only hope to get 9 years of relief. I know how pain can make one want to give up, it’s just hard to feel normal. You are so brave, I hope I will be as brave as you. Keep fighting and hoping for a cure someday.
Thanks. Some days I don’t feel like much like anything…let alone inspirational. Best of luck with your MVD. May you wake up TN pain free (but be warned you’ll have a whopper of a headache for a few days…but it is different from the TN pain) and able to get off all those meds that interfere with memory, balance, etc. Although I understand the consensus for success is a 50-75% reduction in meds, I feel success is not needing any of those horrible meds. I’ll be thinking of you and praying for your success. Please keep us posted.
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Hi Ellen,
This episode of pain came after surgery to remove a cancer from my nose/cheek area. It pretty much encompasses the whole right side of my face. The inside of my mouth feels like it has been scalded. My lips and the corner of my mouth burn constantly and my teeth on that side are numb. When I get a fluttering in my ear, my mouth stops working. My cheek feels like bees are stinging it and my forehead aches. My skin is hypersensitive to everything, sun, wind, air-conditioning, even my hair brushing my face. The worse is my eye. The corner closest to my nose is extremely painful, most of the time it feels like I have grit in it. The more I blink, the worse it gets.
My neurologist sent me to a neurosurgeon who sent me to a pain doctor. Nothing helped so he discharged me a couple of months ago. Subsequently, I wrote to the neurology department at the University of Texas who recommended a neurologist that specialized in facial pain. All he does is diagnose. After about a 2 hour evaluation it was his opinion that I did not have ATN but shingles of the brain stem. He is referring me to another pain doctor that he has worked with in the past. I have made the appointment for a consultation but yet to see him. I had never heard of shingles of the brain stem but apparently you do not necessarily have a rash with shingles (who knew?) I have not found anything to help the pain. I have tried every medication out there for TN so I was beginning to suspect that maybe something else is going on. I have recently tried an anti-viral (Valtrex) but it did nothing. I hope this new physician has the answer.
We all suffer with this, I hope you find something to help your pain soon.
Nancy
Hi Nancy
I really wish you wellness and that someone will be able to sort it out.It really takes a doctor who wants to learn to be able to diagnose and treat stuff like this.I just wish our bodies would auto-correct a little bit more.Someone said that lysine can help get rid of viruses. It is cheap enough-might give your body the boost to get rid of whatever is there.
I hope you come back on and tell us the results of the next appointment.
This crap really sucks.
Wow everyone, I never expected so many responses! This is wonderful, thank you so much. It sounds like MVD is the way to go. After seeing my neurosurgeon I decided to schedule the surgery. We have a date of May 1st. I am scared to death but trying to see the good in all of this. I am scared to have my skull drilled and brain moved around. I am scared of the pain after and I’m scared of missing all the time from work and making things financially. It’s just a really frightening thing. But I know that I can’t stay on all of these meds. They truly make me a zombie. I’m an idiot at work and can’t remember anything.
Thank you all so much for your stories and encouraging words. Please keep them coming, I could really use some friends right now who understand me.
Hi
You are on the right board.So many people here who actually know ,that have been through it all.
It is normal to be scared of the unknown.It is also pretty important to think of all the good things that will happen after the surgery.Try and spend a few minutes a day just thinking about the good.
And May 1?
Wow-not that long at all.
Please keep thinking the good.