MVD Surgery Vs. Medication(HELP PLEASE)!

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Ive been told by several neuros and internists all different ways to cure this pain. Ive been told that the surgery would be a great idea and because of my age its better for me to fix the problem then to be medicated in pain management and taking other drugs for the rest of my life. Im on 27 years old and i cant ever see myself living on medications like that forever. I want this pain to go away forever, and if that means doing a more invasive procedure i don't have a problem with that. Ive been suffering for a year now, i cant take much more. Pain medication helps, but DO NOT FULLY RELIEVE THE PAIN! I also am in a bad place bc my body has horrible reactions to anti consultants and the anti depressants. So as of now im stuck on pain medication and thats it. I feel hopeless, confused, scared, and lost. If i cant have a surgery i will be on this medication forever. I never want to feel what i feel every day again and i will never give up until im out of pain. If im told by my neurosurgeon that MVD surgery is definitely out, i will have no other choice but to stay on pain management. Does anyone have any thoughts regarding both treatments, and if the surgery did work for you, or why you chose to stay on medication. Im trying to learn as much as i can about this to make the right choice to get my life back...please help me with any opinions or experiences you have or know people that have. More than anything i wished the gabapentin (neurontin) diddn't mess me up the way it did because it was the one time in combination with pain meds i had little to NO pain...SO now i need help figuring out what to do next...and who better to ask then people that are going through the same thing . Thank you for your help, this is all so new to me- Jen

p.s i was told by my endo that he would choose pain meds for the rest of his life if he had my diagnosis... and never the surgery...i dont get why some people want to stay on the meds? and is the surgery that risky or does it not always work?

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I just wanted to let you know that I am in the same state of confusion that you are in. With every question I asked, I get answers that I don't want to hear. I am on the anti convulsants right now, and I am not doing well with them. I am losing my words, and having trouble multitasking. We own a business and I do the books and payroll, plus I work for HR Block during tax season. I am having a terrible time working, but the different surgical options don't give me a lot of hope either. I am going to try upper cervical chiropractic. Even on gabapentin and tegretol, I can feel the pain trying to break through. It is so scarey. I am older than you, so I can't imagine how I would feel dealing with this younger. I too, am getting relief with the medication, but the side effects are driving me insane. I also am overwhelmed with the choices of treatment, and the lack of success that is possible with each one. I will let you know about the upper cerivcal. I have a friend that swears I will get better. What the heck, it's non invasive and I have to try something. I hope you find some peace.

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Candy thank you for the response. Your right medication is just no way to live and i did have to quit my job because of it. I havent talked to my nerosergeon about the surgery get what did you find out regarding the lack of success? i was told the MVD has the highest rate although it is the most invasive. If you dont mindme asking do you have TN or aytipical TN and where do you feel the pain? TRUST me you are not alone in feeling the way you do on the anti convulsants! Have you tried pain medication along with the gabapentin? that actually helped my breakthrough pain alot! i took a vicodin with it and it made a world of difference, although it makes you more groggy :( Yes please let me know about the upper cirvical, im waiting to see a top Neurosugeon in NYC and want to know about all options so i can discuss them with him! Im sure this procedure will help you, never give up! Somewhere, somehow, there is going to be reliefe for us! :) Hugs- Jen

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Hi Jen,

Let me try and answer all of your questions. As I go through this site, I see where so many people have had so many different procedures, and then they say that they only worked for a period of time. I have talked to people who have also had successful procedures. I have just also heard of many that have failed. I think some of this has to do with the actual cause of your TN. Mine started shortly after oral surgery, and it started as what I thought was extreme sensitivity in my upper teeth. (In the area where I had the periodontal work done. ) I kept going to the dentist, and telling him about my bouts of sensitivity where I would eat or drink something hot or cold and I would get this jabbing horrible pain, and then it would stay sensitive for weeks and then go away. He never caught on. Then this past March, I had two migraines with a light aura, which I had never had before and then about a week later, I was driving and chewing a piece of gum and suddenly I got hit with a 15 on a scale of 1 - 10. Having worked for neurosurgeons in my early 20's, I remembered them talking about this horrible thing called trigeminal neuralgia. I googled it when I got home and I knew what I had. I went to the dentist, and asked him to refer me to a facial pain specialist here in my area. He mostly specializes in TMJ, but I knew he would know what this was and send me in the right direction. He actually started me immediately on gabapentin, and it worked for me. I only had one breakthrough in six months. However, once I went on the gabapentin I realized that I had had a nagging, knawing pain all the time that I had just gotten used to. So to answer your question about whether I have tn1 or 2, I think I have both. Not sure. Anyway, I was doing pretty good, and adapting to the gabapentin until about three weeks ago and I suddenly had 4 days of almost continual bursts except when I was sleeping. I went to my physician and he put me on steroids and depakote. Finally, in two days the pain subsided, but I was almost comatose. I think if not for the steroids, I would have been., My physician says that pain meds will not work for this. I saw a neurologist, who switched the depakote out for tegretol. He also thought that the steroids were usless.

My pain is mostly in my jaw and teeth, upper and lower. I feel like it builds up and then tries to blast its way out through my teeth. My ear also hurts inside when I am flared up. I am lucky, I am a golfer and wind and cold on my face don't seem to be triggers for me. Triggers are talking, laughing, eating, drinking, crying or trying not to cry, and just about any movement of my facial muscles. I had a mouthguard made, and I wear it when I am golfing, and when I am sleeping. When I come down into the ball, I tend to clench, so I would feel the need to take a gabapentin any time I was playing golf.

Today had not been a good day. I am not myself on these meds. My husband and I always laugh, and laughter hasn't come to easily lately. I got sad today, because I just don't want to be like this anymore. I am our states senior amateur golf champ, and I can't really play a whole round without mental fatigue any more, I have an appointment with the upper cervical chiropractor on Monday, so I will let you know. I just don't want to get my hopes up too much.

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Hi ladiesssss,

Lemme tell you about my experience and maybe it will help you, and maybe it won’t. Let first start by telling you I am 42, no kids.

Back when I was 17 (youngggg for this nightmare) I was get really bad shooting, stabbing pains in my face; the left side. Like someone was stabbing me in the head with an ice pick. It would come and go, and the attacks lasted less than a min, but were in cycles. Sometime one right after the other and sometimes not. This went on for a while, and the desist was sure it was my teeth and set me up in a TMJ splint. This continued on, and I would never have an attack while I was in at the dentist, of course.

So when I am 29 I move to Seattle. I land at a neurologist off who know exactly what it is. TN, dic deloreaux. I was put on 2100 mg of Trileptal and the pain was still breaking thru. In 2002, maybe 2003, I went in for an MVD. Horrible surgery, horrible. Not gonna lie. BUT, I had to try something. I have a veryyyyy high stress job… Very high stress.

So here I am 2012. I am still on 2100 mg of Trileptal, but I load heavy a night so I sleep off the extreme fog and it lingers in my body all day. My breakthrough pain attacks are few and far between.

It was WELL WORTH IT for me. If it is an option, I would certainly ‘try it’.

Anyhoo, that’s my experience in a nutshell. I WILL add though, it is very tough for me to remember things…but I am just chalking that up to age, and I just accept it. :slight_smile:

Jessie

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My doc wanted me to try oxcarbazepine and Cymbalta, less side effects and it is helping. I’m hearing surgery is not permanent. However, if you get years pain free, might be worth it. I’m trying everything else 1st. Neuro said I will know when it’s time. I think weather, airplane triggers mine. Also a sinus infection can cause attack with teeth pain. Read about Steven Bender DDS in North Texas. I may see him. There is hope for all of us.

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Hi Jen
I was on meds for eight years. I had TN 1. I was living in a fog with all the meds. I had MVD surgery in May 2009 and have been pain free since the surgery. The surgery is the least invasive to the nerve. They cushion the artery away from the nerve. I first looked into gamma knife which is radiation to the nerve but this damages the nerve. They told me that I was in good health and this was not an option for me. I was so afraid of having the MVD surgery that I put it off as long as I could. If I only knew then what I know now I wouldn’t have suffered for eight years. Most definetly would have had the surgery earlier. Even though the MRI showed no compression, I had two arteries and a vessel compressing on the nerve. I found through out the eight years that dentists and endonists don’t know very much about TN. Even neurologists would rather have you on meds than do the surgery. My advice to you if you look into the MVD surgery is to find a neurosurgeon with a lot so experience in this surgery. He will put your mind at ease. Good luck to you. I have gotten my life back from this surgery.
Connie

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I have had two MVD's, the first one June 2009 and my second one July 2012. Unfortunately for me they were unsuccseful and I am back on Tegretol and Gabapentin. The Gabapentin makes me feel like I'm medicated all the time and not a very nice feeling. In my humble opion you are too young to stay on drugs for the rest of your life and not have a normal life style. If the parin and the drugs are bothering you seek out a doctor for an MVD. But make sure the doctor you choose has done more than just a few MVD's as you want it done properly. I went to very good doctors for both my MVD's but I just fell into the 10 percent that it didn't work for. Quality of life is what you want and if you're not getting it with medications then the next step is surgery. It's a tuff call and only you can make it. I'm ready anytime now for the next procedure but it's not an MVD, it's a needle through the cheek pushed back to the brain stem to numb the trigeminal nerve. It's better than this awful feeling of feeling like a zombie. Good luck in what ever you decide.