I have had TN for 12 + yrs and was misdiagnosed with TMJ. 1 yr ago I saw a neurologist who put me on Tegratol and changed my life. I take 600 mg per day and am pain free except for some aching and unpleasant sensations. I could happily live out my life the way it is now on Tegratol, however, I am told that the pain will become worse and worse over time as more of the nerve is damaged and then not much will help. I have an MVD scheduled for early Feb, 2014 at UC Irvine. I am very afraid of having this done. Can someone tell me what to expect in the hospital and at home. How much pain is there? What is the longest that someone has been pain free on medications such as Tegratol?
Besides progressive disease, over time meds stop working…for many.
Think of it as cranial surgery, not brain surgery. Dr ken Casey did mine two years ago… Said that 90 %. plus chance that you will be better than before MVD… He’s done them since 1970s, so I trust him… I researched for months before flying to Michigan! Normal is one night in ICU, one night in regular room…one hell of a headache for a couple days, then go home to bed for at least two weeks mostly
Total healing takes one year for many.
My word was. TERRIFICATION,! I came here and begged that I would be okay, and it was.
Some get bad nausea, some dizzy, low percent… I did not. Get somebody to do most everything for you for two weeks…take the codine and sleep the healing process away!
So happy for you on your decision to have an MVD. It is a tough decision to make but I think, the best. I had my MVD 12 weeks ago by Dr. Casey (same as KC Dancer) and it is honestly one of the best decisions I have made in my life - it has changed my life! I am pain free! I do still have a slight pressure sensation that comes and goes on one tooth and the cheek above but it does not hurt at all and really isn't noticeable. It appears that my nerve still just has a bit to go to heal. If I'm left with this though, that's AOK with me as it's really nothing.
I will be 100% off meds (Tegretol ER) on Monday. I was on 1200mg, taking pills 6/day. The meds changed my life more than anything. I experienced my first symptoms and was diagnosed 4 days later with TN last January (very lucky on the quick diagnosis). I was started on Trileptal and got to a high dose in a couple of months to control the pain before I had to switch off because of horrible side effects and not very effective on the pain. I then started on Tegretol XR, and just like the first, quickly upped the meds until I got to 1200mg. The side effects were so hard to live with. I am a fitness instructor and a busy mom of a teen daughter and younger daughter. I couldn't keep up with anything in my life, my energy sank, my mind was gone, my social life tanked, etc. etc. and the worse part is that this med didn't even do a great job of controlling my pain. I was upping my dose every few weeks to get on top of it and then had to go through the worse side effects each time. In the meantime, I researched like crazy and settled pretty quickly on having an MVD. I then just had to meet the right surgeon. Dr. Casey was the 3rd surgeon I consulted with and he was the one for sure.
What to expect? The first 24hrs (for me) were by far the worse. I was in ICU that night and I was non-stop nauseous with dry heaves and a horrible headache the entire time. After that day, I was moved to a regular room for a night and was so much better. After that, it was all quickly uphill recovering. The headaches were bad but really just unbearable that first day. The meds they give you work well and you won't need them long.
Be sure to "move" as soon as you can. I was on a treadmill going 2mph for 10min 4 days after surgery and then walked every day after that, adding more minutes and speed gradually. It was the thing that I think helped me recover the most. Plus, I had organized friends to come pick me up and walk with me those first few weeks so it was great to get out of the house and see a friend :). I also did gentle neck stretches almost right away since my neck was very stiff and sore (I looked them up online under physical therapy). This helped a ton.
Be sure to have meals lined up for you for the first couple of weeks and have help to take care of any kids at home, laundry, etc. Try to eat healthy too for the weeks before and after the surgery - lots of fiber and water in your diet. I had my MIL and then mother here with me for the first 3 weeks and by the 3rd week, I really didn't even need them but it was nice to have them there. Catch up on movies and books for those first 2 weeks. Also, try to sleep elevated, either on a recliner or a sectional with pillows arranged well (I did the later). I slept like this for 3 weeks because if I slept in my bed (tried it a couple of times), I had a bad headache in the morning. The recovery overall was not nearly as bad as I thought it was. The only bad day I had was that first one in ICU and after that, it was really not that bad at all and gave me a great chance to escape from my now crazy, busy life :).
One week until my MVD. I am more than a little anxious. Thank God I have a supportive family. We will be staying in a hotel for 2 weeks. I'd much rather be home but it is too far from the surgeon.
I stayed in a patient apartment for 2 nights after my 2 nights in the hospital, which is all I needed. We are a 5 hr drive from where I had the surgery. I was so anxious about the drive home. We had originally planned to stay 3 nights but I felt so much better after the 1st night in the apartment that I decided to go home a day earlier. Honestly, the first 24hrs were very tough but after that, it was all uphill and wasn't even close to that first day. And I would go through the whole surgery, recovery etc. 100+ times or more to feel the way I feel today, 3 months later! It was so worth it and was way easier overall than I had every expected. I will say a prayer for you on the day before and the day of your surgery. Thank God for a supportive family :).
mybell pretty much said it all. i only got nausea when they gave me pain meds intravenously, so switching to pill form was way better, but they can give you a shot that takes the nausea away too. for me it was that my lower trac was not waking up so i had constipation and that is a bear, so start with stool softners the day or two before just as a precaution. it is really hard not to do anything...but you should just be taking it easy, not lifting or carrying stuff.
Had my MVD tues and never felt worse in my life. I spent 3 nights in the hospital. I had lots of nausea, vomiting and dizziness but am so much better now. However, I cannot feel the right side of my face and head. I can't feel my rt eye, nares, tounge and mouth. It feels completely numb and very scary.It is supposed to go away, at least partialy in a few months. I have serious trouble eating like this. Has anyone had this problem and did it resolve?
Things do get better with lots of rest and patience. Your nerves are still swollen and irritated from surgery. Once all the swelling and irritation go down you will feel much better. Time is now the healer. Rest, rest and rest.
i hope the tn pain is gone at least. there is not a way to see how much damage the nerve has til they open you up and it will heal now, just takes time. remember that your body can only rebuild so fast and to get protein so it can. good luck.
i hope the tn pain is gone at least. there is not a way to see how much damage the nerve has til they open you up and it will heal now, just takes time. remember that your body can only rebuild so fast and to get protein so it can. good luck.
Thanks. I am 6 days post-op and have a little sensation back
Following my MVD I could not feel the left side of my face, ear, and scalp. I also could not hear very well out of my left ear. The numbness and hearing loss gradually improved. I still cannot feel my scalp and the top part of my ear but it doesn't bother me too much. You are in my thoughts. Rest and be well!
Following my MVD I could not feel the left side of my face, ear, and scalp. I also could not hear very well out of my left ear. The numbness and hearing loss gradually improved. I still cannot feel my scalp and the top part of my ear but it doesn't bother me too much. You are in my thoughts. Rest and be well!
Thanks. I am getting a little feeling in my month but not normal. I didn't expect this.
Somehow, I missed this thread! Just wanted to stop in and wish you well in your recovery…healing takes time and patience… I hope you will take care of you and be more patient than I was! LoL
Huge ((( hugs ))), Mimi
I often hear how many does your neurosurgeon do comment. Thing is my neurosurgeon finished his residency 20 months ago, and he is the only surgeon I will let touch me. Just because a surgeon does a lot of MVDs does not always mean one will have a good outcome. Surgery is very much a step of faith. Being new to the practice my surgeon is one who thinks outside of the box when it comes to treating TN. I first met him when he was the resident assisting on my first MVD in 2009. He has been with me ever since. His boss is a leading TN surgeon in the US. I encourage people to check out the surgeons credentials fully before committing to surgery.
Kc Dancer Kc said:
Does your doc do at least 50 per year???
Besides progressive disease, over time meds stop working.....for many.
Think of it as cranial surgery,,,, not brain surgery. Dr ken Casey did mine two years ago.... Said that 90 %. plus chance that you will be better than before MVD..... He's done them since 1970s, so I trust him..... I researched for months before flying to Michigan! Normal is one night in ICU, one night in regular room.....one hell of a headache for a couple days, then go home to bed for at least two weeks mostly
Total healing takes one year for many.
My word was. TERRIFICATION,! I came here and begged that I would be okay, and it was.
Some get bad nausea, some dizzy, low percent..... I did not. Get somebody to do most everything for you for two weeks.....take the codine and sleep the healing process away!
I am slowly getting some feeling back. But I found that I did not swallow a pill I thought I had. 10 min later I noticed this nasty taste in my mouth. Yesterday I had a bit of watermelon in my mouth for 30 min and was not aware of it. This is a real learning experience.
hope seeker said:
Following my MVD I could not feel the left side of my face, ear, and scalp. I also could not hear very well out of my left ear. The numbness and hearing loss gradually improved. I still cannot feel my scalp and the top part of my ear but it doesn't bother me too much. You are in my thoughts. Rest and be well!