I had my MVD surgery 9/30/2011. I feel I am doing well, but I don't think patients are given enough information to know what to expect Post Surgery.Right now I am having sharp pains in my right ear - is that normal? Do I call my MVD surgeon? Do I call my family doctor? Why did my doctor send me home with no meds. "Just take tylenol". Well... there are days that the headache is so bad, tylenol just is not enough. Is this normal to have no meds?
Call your neurosurgeon that did your MVD. My daughter was still taking pain narcotics when she left the hospital. But, she didn’t have to take them very long. I think it was just under a week. We piggy-backed Tylenol and Motrin (after a certain period of time post-op). The only other meds she was on, was her anti-seizure meds. Those were slowly tappered off over a long period of time. Good luck healing!
Dear VMarch,
Every person has different results right after and up to months down the road. I am not even close to a doctor, but I would definitely speak to your neurologist and the surgeon. Unfortunately they both may say that you just need to give it time. But they don't have to endure what we do. With that said, I was given equivalent to Vicodene and used it for the first 3-4 days, tapering off each day as the headaches/overall head trauma aches one would expect from such an invasive surgery. I have heard so many different results from, Instant pain relief as in my case and others, to still having pain for weeks then going away, to still having pain and not going away, but is better managed by the drugs you were originally taking. I don't mean to diminish your hopes, please keep praying and having as much patience as you can. In the interim, call your doctors ( I don't think your family doctor will give you any help (unless you are truly having some kind of ear infection (which is possible) It looks like you have been 10 days or so removed from the surgery. What you didn't mention in your initial message was whether your TN was on the right side or left, if it was the left, then yes see your normal doctor per possible infected ear, if it is the same side, then I would see/call/talk to my neurologist and/or surgeon. I hope this helps at least give you some direction. Please remember I am so far removed from giving you advice as a doctor would, but as a patient myself.
Sincerely,
Andy
I had my MVD surgery on 8/22/11. I am just now feeling really good and feeling that the surgery was worth it. I was taking 2 anti seizure meds. I am now almost tapered off the second. I still have a few pains at the incision site. I was sent home with some heavy duty pain meds , which i took only when i really needed it. I suggest you call the surgeon and talk to him about your pain.
My surgeon is wonderful. If anyone has any questions about MVD surgeons you should google Dr. Jeffrey Brown in New York.
I had my MVD in 2009 and went home with Dilaudid, a pretty strong pain-killer. I had severe pain from the halo and screws. Some places don't use a halo, others do, but I was still taking pain medicine for two weeks, also tapered off Gabapentin. A couple weeks after surgery, I awoke in the middle of the night, felt like a red hot needle flew into my ear. Same side as surgery. Never has TN pain like it. It happened one more time, then not again in 2 years.
Everyone's recovery story is different. It's nice to be able to read other's experiences and ask questions. I'm new to the site, but happy to answer any questions from my point of experience. kg
How long did you have to stay in the hospital? I am going in for MVD on Dec. 15th.
I was in Nuero ICU for Three and 1/2 days then I was able to go home....I had no halo though...I need to warn you that your head will feel like someone bounced your brain around in it for a lil while, but that feeling goes away and you will slowly feel better than you have in a long time!
Kristin Forrester said:
How long did you have to stay in the hospital? I am going in for MVD on Dec. 15th.
thanks for the info.
I had mine on 11/7/2011. I was sent home with Percocet, and I had Viocodin from my aneurysm repair on stand by. I was in the hospital 4 1/2 days and was not prepared for the experience. I have tapered off the pain meds ( took about 4-5 days), and use ibuprofen and tylenol now. If I have a real pain issue it is usually linked to stiff neck or the incision site and I have the option of going stronger. I have been completely off of the neurontin after being on 3600-4800 mg. daily for over a year so I feel this is a success, just more intense then I expected.
Thanks for sharing your experience. I am still so nervous. I hope I can get thru all of this ok. Just being off of the neurontin 2700mg a day will be great to get my mind back. I am so glad there are nice people like you I can talk to. I will share my progress with everyone to maybe help someone else. :)
I'm having an MVD on Dec. 20 with Dr. Sekula in PA. I live in Texas so I'll be flying up there and back. Anybody have problems on an airplane after an MVD?
I have cancelled my surgery that was for Dec. 15th. With Christmas so close and being so broke this time of year. Thinking of spring if I can hold out that long.? did you hear good things of this Dr. Sekula in PA? That is 10hours from me. Quite a hike for me also. Not as far as you.
From everything I've read, he is the Grand High Poobah of MVD. That's why I'm going so far to be his patient. Nobody is going to mess around in my brain except the best! :-)
I know a couple of people who went to someone locally, but maybe that person has only done that operation a few times. And they have had lots of complications from their surgeries. Sekula has done it over 1000 times with a 90-something percent success rate. I feel like I'm taking my best shot with him.....maybe I can have your Dec. 15th spot! lol
oh no sorry I wasn't seeing sekula, I was seeing someone locally also who has only done a few. Has anyone had the MVD without any compressions? Mr. DR. said he didn't see any compressions.??
From what I've read, lots of times decompressions aren't visible until they actually get in your head and take a look.
I am having my surgery here in Houston with a doctor from Baylor who says he does at least 2-3 a week. I was diagnosed with TN 2 years ago. I am nervous and after hearing that people fly to other states to have this done i am wondering if I have the best possible doctor. I need some reassurance and i know that there will be be some post opt discomfort . right now i have my TN under control with about 1000-1200 mg of carbotrol and just feel like i have no quality of life. I have to stay calm and not get stressed.(not so bad huh). But i feel eventually my meds will go up and i am constantly afraid i will have an attack at work or out and about. I pray that all the have had this surgery will recover and have their lives back. take care..
doowni, i just sent you a friend request because i found after trying to send you a message, i couldn't until you were a friend. can you accept me please......i am having my MVD this wednesday the 21st by dr. brown at winthrop. i was wondering if you had any suggestions/insights...or anything, anything whatsoever...getting kinda antsy. thanks, stephen
doowni said:
I had my MVD surgery on 8/22/11. I am just now feeling really good and feeling that the surgery was worth it. I was taking 2 anti seizure meds. I am now almost tapered off the second. I still have a few pains at the incision site. I was sent home with some heavy duty pain meds , which i took only when i really needed it. I suggest you call the surgeon and talk to him about your pain.
My surgeon is wonderful. If anyone has any questions about MVD surgeons you should google Dr. Jeffrey Brown in New York.
I had my MVD on my left side last Nov. I would call it successful. I was not prepared for all the after care issues, and finally got moved to Topamax to deal with headaches I developed after the surgery. Still nothing even close to the pain I had from the TN or the issues I had from the 2600-4800 mg of gabapentin I was taking. I even find I am having days where I am cheerful!! I still have some TN on my right side but at a level I can live with. If it became as severe as my left side was, yeah I would do this again. Good luck. It is not going to be easy or fun, but it does have a good chance of being better.
Thanx ravenm...I'm getting anxious. Fortunately, this growing feeling doesn't have too much time to percolate and haunt me. I look forward to being a free person unshackled from the meds, the unbelievable indescribable pain and the constant spectre of surprise attacks of yet another spasm. Thanx Ravenm
Pull your support together. Get prepared for the side effects of brain surgery. Stock pile easy meals, laundry and supplies till you are back on your feet. If you can handle the train wreck that is TN you can handle the MVD. It isn't an instant miracle, but for me it has made all the difference in my life. Good luck.