I guess the reason the recovery from an MVD takes so long isn't the surgery in and of itself. It's the mental breakdown you get from being in confinement for so long afterwards. I'm so close to cracking. So close. I'm scared.
How do you survive it? I can't stand these four walls anymore. And I have until November 13th.
I had my MVD procedure a week ago today, and it seemed like the fitting mark for me to write up my experience. I kept a journal while I was in the hospital, so I'm basically just transcribing that. My surgery took place on October 8th, but I didn't start writing until the 10th because I didn't feel up to it, so everything prior to then is just what I remember through my drug and pain-induced haze. I was in the ICU the entire time.( Under a cut because it's longCollapse )
Has anyone done the gamma surgery? How was it, from beginning to end and what side effects? My docs thinking about having me go thro it since the neurontin treatment seems to be beginning to fail.
She told me I may have partial paralysis/sensory loss but the pain would be gone..
My husband took this pic of me yesterday with my new great nephew. I thought I was smiling but it seems, not quite. It looks like I have Bell's palsy :(
October 21, 2008 is my surgery date. I'm excited and scared. Before this particular doctor saw my MRI, he said there was a 90% chance that the MVD would keep me pain free for 10+ years. Now he's saying there's a 60%-70% chance. Are they still decent percentages? He suggested I see a pain specialist, even though I have my mind set on the surgery. I'll be seeing a pain specialist in the meantime, just to get information. He said if the surgery didn't work, it's nice to know that there are other options.
I have been looking forward to this day for the last four years and finally!
Haven't posted here in a while, but my attacks have gotten much worse and the remission periods have gotten much shorter, so on October 8, I'm getting the MVD procedure.
I think my family is more scared of it than I am. Maybe I'm just used to having surgery. Heh. I'm not too worried about the actual procedure. I'm far more concerned with the recovery time and how I'm gonna survive mentally and financially (I'm unemployed).
I have a few questions for those who have had the MVD.
- How long was it until you were able to drive?
- When were you able to return to work?
- What should I expect in terms of side effects?
- When can you shower? Heh, I hate being dirty. :p
Are there any other things I need to know?
Been put on Pamelor for intense, throbbing headaches in the morning associated with TN. Helped a lot, actually.
Finally got insurance! Goes into effect next month. The MVD surgery soon, I hope.
Getting blood work done within the next couple weeks to test my Tegretol levels. I went to a general doctor today about why I've been constantly tired lately, dizzy at times, and nauseous (one would think I was pregnant, but took a double pregnancy test at a clinic a month ago after it showed up negative once and then I told the nurse about being nauseous, she did it again).
Has anyone else tried using vitamin B-12? I started using it along with the neurontin and it seems to be helping. The pain is less and I haven't had to use as much pain killers.
one link- its 3am, Im a bit too tired to look any more;http://facial-neuralgia.org/treatments/alternative/vitb12.html
I take 2 tablets of 250mg aday and have noticed an improvement.
My neurologist has mentioned that for my October appointment Gama surgery may be discussed since this has gone on so long. Any info on this would be appreciated. I don't know where the nearest hospital is that does this to me, I'm in south Mississippi. I'm hoping they can do it in Jackson as my insurance may not cover it if its out of state.
So, I've exhausted all my medication options for my TN (atypical kind), it's come to surgery. My neurosurgeon said that the MVD procedure would be my better choice, but it's honest-to-god brain surgery, and that really scares me. I know some people here have been through it, so I hope I can get some "I'm not going to die" support! I'm also scared about the very long recovery time. To be honest, I think that worries me more than the actual procedure. I'm home by myself all day and I have no idea how I'll get my errands done. For people who had the MVD, how long did you have to wait until you could drive?
I also can consider radiosurgery, but seeing as I've already had lots of treatments and tests (usually not for things involving my TN) involving radiation and stomach cancer runs in my family, I'm very nervous about getting such a huge amount of radiation administered.
My concern is that on every MRI I have had (including one a little over a week ago), they found nothing pressing on or wrapping around my trigeminal nerve. Maybe that's just because I never happened to be in the midst of an "episode" when I had them, but I'm so worried that I'll go through this surgery and it will have been for nothing. None of my physicians have found a direct "cause" for my TN, so how will it help if they don't really know what to fix? I can't even imagine how devastated I'd be only to go through all that and experience another attack right away.
Sorry for being so whiny. This is all happening so fast.
My surgery was rescheduled for July 10th. I got back home last night which is wonderful as I was originally informed that I'd have to be in until today or tomorrow.
Thank you, everyone, for your support and well-wishes! (((hugs)))
Everything went fine. And the most amazing thing is that I've barely had any pain in my teeth at all. I even had a celebratory potato chip when I got home! :D I was so afraid that they'd do the surgery but that there wouldn't be anything to adjust. But I had an artery wrapped around the trigeminal nerve and some veins that were very close, so that's all been padded with teflon. Dr. Ciricillo took a picture but I haven't seen it yet. I asked to see it when I was getting ready to leave but the nurse couldn't find it. She did find the hair they shaved off my head though! How weird that they would save it. Gee, I can get it bronzed or something. ;)
I keep having these "wow!" moments. I really just had brain surgery. My teeth feel better. It's all just amazing to me. When I was still in the ICU, I started crying because I woke up without searing pain in my teeth. So fucking awesome!
I'm taking it easy for a month or so. I cannot lift much, my neck and head are severely stiff and pained, it's hard to eat because of the anti-inflammatory, and other stuff like that, but even though I'm not really up and at 'em, I'm a lot better than I thought I would be. Very awesome :D I can even make it up and down the stairs. I even get to wash my hair on Tuesday and I'm looking forward to that, for sure! I'm ever-so beautiful at the moment! And delicately scented, I'm sure. *laugh* :D
I do have some numbness in my tongue which just started a few hours ago and a bit of TN pain (like tiny vibrations) but that should all settle down as I heal.
Did you know that they use crazy glue to keep the Teflon in place? Cool, huh?
Other than a bit of family drama and a few incompetent nurses, everything went smoothly and I'm very happy. :)
Went to my doc today, she upped my neurontin so that made me happy. Nothing else has changed, we mentioned the idea about the Gamma as we had read that the drug wasn't good to be on if one planned for a family. We do want one but probably not in the next year or so. She made the comment that no, neurontin didn't hurt a baby , but I seem to remember reading otherwise.. I will recheck.
In other news.. cluster headaches.. been having them about every 30 mins, they last 1-3 mins each time. I'm drinking more water to try and help also took some ibuprofen.