I'm fairly new to this site, and this is my first post. I've had Type 1 TN since January, 2012. It had been controlled with Carbamazepine until that started to affect my sodium level. I am currently on 800 mg. of Carbamazepine, plus 30 mg. of Baclofen. I still have a lot of pain eating, brushing my teeth, and especially talking. This is not good since I'm a teacher! I am trying to tolerate it until I have MVD surgery at the beginning of December. I want the recovery to coincide with my Christmas break. I'm very nervous about the surgery. I am obese and worry about added complications that may bring. My NS didn't seem to think it would cause any other complications other than positioning me for the surgery. Beside the big worries of death and stroke, my other concern is the recovery. My NS said I would be in the hospital for about 3 days and recovery would be about 4 weeks. He said the first 3-4 days would be rough with headaches and a stiff neck. Most of the accounts I've read on this site seem far worse than that. Are there people who have had an "easy" recovery, relatively speaking? I keep thinking that maybe I could live with things as they are, but I know that the meds could stop working at any time. Any words of comfort/advice for me?
Who is your surgery…yes the luck of us… It is just like that after MVD. I was in hospital 2 nights, laid in bed mostly for 3 weeks. Was not working at the time.
I actually did MVD in 1st year, while in remission … I hated meds sooooooo bad.
You can put teacher in search box here…you will find more.
I’m 2 yrs with no pain , with only luck and best surgeon I could hope for.
Best MVDs have high rates of success within first 3 years+
Most people who get better faster, they don’t post here anymore…
I do , because this site helped me figure out what to do, with those who went before me!
I’m a counselor for work, so I come help here… Because without this site… I think I would still be unemployed and in pain!
I had my MVD on a Friday and left the hospital on Sunday. I did have surgical pain for a week or so, and was quite weak, but all in all my recovery was not bad at all. I was able to work on my computer the first week, and was driving within two weeks. It took a while for me to get all my strength back, but it was not as long a recovery as I had expected.
Best of luck to you"
Thank you for taking the time to reply. I keep telling myself that the people with no problems probably don't post. I'm trying to stay calm. :)
Kc Dancer Kc said:
Who is your surgery.....yes the luck of us.... It is just like that after MVD. I was in hospital 2 nights, laid in bed mostly for 3 weeks. Was not working at the time.
I actually did MVD in 1st year, while in remission ..... I hated meds sooooooo bad.
You can put teacher in search box here....you will find more.
I'm 2 yrs with no pain , with only luck and best surgeon I could hope for.
Best MVDs have high rates of success within first 3 years+
Most people who get better faster, they don't post here anymore...
I do , because this site helped me figure out what to do, with those who went before me!
I'm a counselor for work, so I come help here...... Because without this site.... I think I would still be unemployed and in pain!
Thanks, Christine! I'm glad things went so well for you. I'll keep you in mind whenever I start freaking out. :)
Christine said:
I had my MVD on a Friday and left the hospital on Sunday. I did have surgical pain for a week or so, and was quite weak, but all in all my recovery was not bad at all. I was able to work on my computer the first week, and was driving within two weeks. It took a while for me to get all my strength back, but it was not as long a recovery as I had expected.
Best of luck to you"
It will be fine, as long as you rest as much as you can. I am having MVD on my OTHER side in two weeks, just nine months after the first one. I would not do it, nor would my surgeon, if I wasn’t in good shape.
Christine
I had mine done 30 years ago and I have to tell you the recovery was no big deal. After enduring TN pain your tolerance for pain or discomfort is high. I was in the hospital 4 days with only 1 real symptom, a constant headache. Turned out headache was from getting me up to quick after a spinal tap. They did a spinal plug which was just an injection of my own blood into my spine and I was fine 2 hours later. If you happen to get a spinal tap just make sure you rest and keep your head down for 24 hours. My headaches were gone when I came home and I was up and around pretty good on day one at home. By 2nd week I was taking walks in development and by 3rd week driving and pretty much back to normal. I have to say I had more discomfort from a hernia and gall bladder surgery then the TN surgery. Just take it easy and dont push yourself but also as soon as you feel strong enough try and get back to your normal things. Everyones experience is different and hope yours is a piece of cake but nothing is worse then TN pain......You will do great..Ed
Thanks, Ed! I guess if you had it done 30 yrs. ago with minimal problems, then I should be ok. I know everyone is different, but at least I know it's possible to not have an agonizing recovery. The biggest thing I see from everyone is REST and don't overdo it. I plan to take that advice to heart!
Ed said:
I had mine done 30 years ago and I have to tell you the recovery was no big deal. After enduring TN pain your tolerance for pain or discomfort is high. I was in the hospital 4 days with only 1 real symptom, a constant headache. Turned out headache was from getting me up to quick after a spinal tap. They did a spinal plug which was just an injection of my own blood into my spine and I was fine 2 hours later. If you happen to get a spinal tap just make sure you rest and keep your head down for 24 hours. My headaches were gone when I came home and I was up and around pretty good on day one at home. By 2nd week I was taking walks in development and by 3rd week driving and pretty much back to normal. I have to say I had more discomfort from a hernia and gall bladder surgery then the TN surgery. Just take it easy and dont push yourself but also as soon as you feel strong enough try and get back to your normal things. Everyones experience is different and hope yours is a piece of cake but nothing is worse then TN pain......You will do great..Ed
Hi I’m a teacher too. I’m currently off work as the meds affected me so badly in the classroom and pain was never properly under control. I’m having a course of nerve bloc meds to get some control before I return. No success as yet! This op can only be good for you. I will dread having to get surgery but it won’t surprise me if its suggested when I meet with a neuro. Keep positive this will make yr life so much better. Xxx
Thanks for replying , Helen. I'm sorry things aren't going well with you. I, too, dread this surgery, but I just want this whole thing to be over with. And I'm hoping MVD will bring that about. My surgery is now scheduled - Dec. 5.
Glad you got a date! Surgeon done this hundreds of times?
I have my MVD surgery in 3 weeks and change (Oct. 30) with the same neurosurgeon that performed KcDancer's MVD. He is top notch and I have total faith in him. I promise to post here soon after and also weeks and months after that as I'm planning on a 100% success (it's the optimist in me). I started with symptoms in January but in 2013 so you have had this a year more than me. I knew that an MVD was the right choice for just a few months after my diagnosis. I hope this does not come across the wrong way, but maybe take these couple months as a chance, an excuse, to improve your health even a little. I have done that with my eating, supplements, workouts, etc. Everyone could use some work in this category and I think this surgery is a motivating excuse. I think you have planned well around your Christmas break.
Thanks, Mybell! Good luck with your MVD. I'll look forward to your recovery reports. Yes, I have been trying to lose a little weight before Dec. If nothing else, I am eating healthier. Unfortunately, I don't exercise at all. I know I need to at least take a short walk each day, but there never seems to be time. I know... excuses, excuses!
I had MVD on Sept 18 and I am entering the third week of recovery. My strength is slowly coming back day by day. When I get the big head and try to do too much, the headaches will appear. As for the TN pain I feel it subsiding. When I went in for surgery I was at an 8, now I am at a 3.
My stay at the hospital was two days. The first week was the worst.But it does get better. The right side of my face is numb but no burning pain as others have described. Bear in mind that you may have a different result - as my neurosurgeon told me.
Wishing you the best and a painfree and speedy recovery.
Thanks! I'm glad things are going well for you. Yes, I realize everyone is different, but I had myself half convinced that the recovery was going to be worse than the TN and the surgery! At least I know that some people do well with it. I've had headaches, including migraines, for years, so I'm at least used to those. I hope your recovery continues to go well!
Yes, this is the main surgery that he does. The group he is with are brain/spinal surgery specialists. I liked him very much during our meeting. And his office has been great to deal with. His nurse called today and answered all of the questions I thought of after I met with him.
Kc Dancer Kc said:
Glad you got a date! Surgeon done this hundreds of times?
I am just a s nervous as you. I just met with my NS on Friday and I'm now booked for MVD surgery. Where do you live?
I live in Indiana. When are you having yours?
I live in Alberta Canada I’m having mine at the university hospital in Edmonton,
See if your Neurologist will give you Topamax to help you drop some lbs. I have lost 40 since March. I am taking it for the headaches since the MVD but have had Botox injections two weeks ago and am hoping for the best there. Topamax does a bit of everything so it may not hurt to ask. It may make you a little "stupid" in the head if they get the dose too high, but I do well at 100 mgs. and no side effects.
Best of luck with the MVD and has everyone has suggested just go slow afterward. I have some issues but will not go into it as they were "surgeon slip ups" in the after care and judgment calls that you need not concern yourself with. Keep us posted - stay brave and prayers headed your way.......