I would like to know if anyone here that has had an MVD could please share your story. From preop to post op. I am looking at having an MVD the end of July and am scared and in need of details please and thank you.
Hi Billie, Just had it done myself. When are you having it done? Mine was done at the Mayo in Minn. Other then blurred eyesight doing OK. No episodes of GN thank God. I have other things wrong with me so it wouldn't be fair to compare. I suggest you have a lot of faith and prayers and God bless. Let ME know how how you fare and we can then compare. JB
Hi Billie,
Had my procedure May 7th by Dr. Marc Mclaughlin from Princeton Brain and Spine. I am competely pain free and am back to all activities without pre operative symptoms.
Rob
Hi Billie...The pre-op was simply a consult with neurosurgeon, MRI, and then on the scheduled day, reporting to surgery at the hospital. They placed me on an IV with sedatives, the surgery lasted for about 5 hours, everything went well, and I was in the ICU for one night, then two more nights in a standard room and out. Progressed nicely at home. Had a lot of pain from the surgery but it felt the GPN pain had diminished somewhat. Stayed on over the counter Aleve/Tylenol for the swelling around the area on my head for about a month while still taking GPN meds. After the operational trauma and wounds healed I still had GPN pain and it gradually increased. That was 8 months ago, I now have more consistently extreme GPN pain than before the surgery. But I also had TGN and that was why they did MVD in the first place since it has a higher success rate. About 2 out of 3 for GPN...I was the 1 of 3 which was unsuccessful, but the surgery wasn't so traumatic to me that it certainly was worth the try. Now looking into other options behind the extreme meds for GPN which are only partially effective anyway. I pray yours will go smoothly and you will be pain free. Don't let my story discourage you. Just be aware that the success rate isn't perfect.
Great post Billie!
Amazing that 25 people have already read this post in a day!
Hi Billie:
I had my first MVD done in San Diego at UCSD in June 2010. (Vessel looped around the glosso nerve)I am not going to lie the moment I woke up from the 8 hour surgery everything was horizontal and vertigo due to getting 4th palsy from the surgery, my speech was slurred and it took me alot of rehab and another surgery to relieve only one of the systems I had post op. I was extremely ill and at times felt as if I was a zombie. The pain has gone except I was left with the right side of my mouth and tongue numb and no taste buds on my ride side . To answer your question it also depends on what your surgeon has to do and if he has to explore any other cranial nerves. Hope all goes well for you.
KL
I know what you're going through, Billie. I had MVD nearly 3 years ago when medications stopped working to control my pain. I was desperate for relief, because I had no life anymore due to the pain (couldn't work, couldn't talk, couldn't laugh, couldn't eat or drink much either). I was terrified to have the surgery, but it was my last hope, and it ended up literally saving my life. Immediately following the surgery, my GPN pain was completely gone. I was only in the hospital for about 4 days, as I recall. I had pretty bad headaches for about 2 months after the surgery, but it was nothing compared to the GPN pain. I also had an odd "plugged ear" sensation in the ear on the opposite side from where my surgery was for a few weeks, which no one seemed to be able to fully explain, but that gradually subsided. My neurologist didn't want me to immediately stop taking the meds that I'd been taking before the surgery to try to control my pain (it's been awhile, but I think it was carbamezapine -- I tried a lot of different meds, so it's hard for me to remember), so I had to wait about 3 weeks to start weaning off of them (he wanted me to wait 4 weeks, but I pushed him a little to let me start earlier). The GPN pain did not return when I discontinued the meds, and once I had tapered the meds enough to reduce the side effects to a minimum, I was able to return to work (about 4-1/2 weeks after surgery). I've been completely free of the GPN pain ever since my surgery. It was the best decision I've ever made, and I'm so thankful for my neurosurgeon, Dr. Stephen Haines, at the University of Minnesota Fairview Medical Center.
I wish you the best with your surgery. If you have any questions or want more specifics, please feel free to ask. Because I was very "drugged up" at the time, some of my memories are a little foggy, but I'll try to answer any questions you might have to the best of my ability.
Hi Billie - I tried replying to your Dr. Brisman thread but it may have gotten lost..Brisman performed MVD on me back in Nov. 2007 (can't believe it's almost 5 years). I woke up from the surgery pain free and have been that way ever since. Here's my story in a nutshell. I started with TN in 1998. I googled "Face Pain", read about TN and knew that was my problem. I suffered almost 10 years on and off. Tegretol worked at first but the side effects stink. Periods of remission were great but it always came back. I was scared to death whenever I read about mvd surgery. One day my mother read an article about Brisman and the Gamma Knife. She shared it with me and I thought, "this is my answer, a non-invasive procedure." I went to see Brisman and he recommended MVD. He said, "your young (47 at the time), can handle the surgery, and you'll be done with it." He said the Gamma Knife is for older people who might have issues with the surgery. Also it might cause numbness where you don't want it. He also explained other procedures that damage the nerve. I left his office depressed, as I wanted the Gamma Knife, with no resolution.
A few months later I was miserable with pain. I thought back to Brisman and how he said so flippantly, "you'll be done with the pain." He said it with so much confidence! That was my turning point, finding a doctor I had confidence in. I called his office, asked how many had he performed and wanted to know his success. "He's done hundreds with close to 100% success." I scheduled the operation 2 weeks later. It was a breeze! Took about 4 hours, of course it seemed like 4 seconds. The only bad thing was I felt nauseous for about a day. Oh, and I've gained weight because I have no more pain when I eat.
Brisman is great...get it done...I'd be happy to speak with you if you want...
Where is Dr. Brisman located? I may like to get a consult with him about the possibility of a second MVD. My first was not successful. It was done by a very reputable neurosurgeon at a large LA hospital (I'll withold the name and location, I don't want any legal ramifications.)
JB....can you tell me who your MVD neurosurgeon was at Mayo?
Dr. Brisman is located in New York (Long Island). Take a look at this website:
http://www.nspc.com/index.html
MSov said:
Where is Dr. Brisman located? I may like to get a consult with him about the possibility of a second MVD. My first was not successful. It was done by a very reputable neurosurgeon at a large LA hospital (I'll withold the name and location, I don't want any legal ramifications.)
Thank you Steve, I'll check out the website and Dr. Brisman. I'm not clear from your story....did you have Trigeminal Neuralgia or Glossopharyngeal Neuralgia?
Steve, thank you so much for your post!!! You have made me feel so much better about Dr. Brisman. I went last week for my consultation and he is going to perform the MVD/Resectioning for GPN. He was amazing, by the time he was finished talking he had answered every question I had written down before I asked them. He was soft spoken, confident and very knowledgable about GPN. He put my fears to rest and he was straight forward about the surgery. He was concerned about a scar I have from Eagle syndrome surgery I had two years ago that did not work, for obvious reasons, so he sent me across town to consult with a plastic surgeon. She said the blood supply will not be comprimised and there would be no problems, however, she will be in the OR making the cuts and closing me up and went on to say she will monitor me in the hospital to make sure I am going to heal properly!!! I am scared, but feel very confident in Dr. Brisman. He was telling me I would be at Winthrop Hospital about ten minutes from his office and that he is the head of neurosurgery there and they treat him and his patients quite well over there. LOL. I bet they do! He told me gamma knife is for the elderly and not young healthy people also. I am elated that I found him and am now awaiting authorization from my insurance company for the surgery! Thank you all for the replies, especially you Steve. Good to hear from someone that has been there done that with Dr. Brisman. I am about 5 hours away, so I know the ride home from the hospital is going to be horrible. Anyway, thank you guys and if you have questions for me let me know.
Steve G said:
Hi Billie - I tried replying to your Dr. Brisman thread but it may have gotten lost..Brisman performed MVD on me back in Nov. 2007 (can't believe it's almost 5 years). I woke up from the surgery pain free and have been that way ever since. Here's my story in a nutshell. I started with TN in 1998. I googled "Face Pain", read about TN and knew that was my problem. I suffered almost 10 years on and off. Tegretol worked at first but the side effects stink. Periods of remission were great but it always came back. I was scared to death whenever I read about mvd surgery. One day my mother read an article about Brisman and the Gamma Knife. She shared it with me and I thought, "this is my answer, a non-invasive procedure." I went to see Brisman and he recommended MVD. He said, "your young (47 at the time), can handle the surgery, and you'll be done with it." He said the Gamma Knife is for older people who might have issues with the surgery. Also it might cause numbness where you don't want it. He also explained other procedures that damage the nerve. I left his office depressed, as I wanted the Gamma Knife, with no resolution.
A few months later I was miserable with pain. I thought back to Brisman and how he said so flippantly, "you'll be done with the pain." He said it with so much confidence! That was my turning point, finding a doctor I had confidence in. I called his office, asked how many had he performed and wanted to know his success. "He's done hundreds with close to 100% success." I scheduled the operation 2 weeks later. It was a breeze! Took about 4 hours, of course it seemed like 4 seconds. The only bad thing was I felt nauseous for about a day. Oh, and I've gained weight because I have no more pain when I eat.
Brisman is great...get it done...I'd be happy to speak with you if you want...
Hi Billie - I'm so glad things went well with Brisman. I had my surgery at Winthrop as well. I got there early on a Friday morning (8ish) but didn't actually have surgery till about 11:30. Then it took about 4 hours. So if anyone is waiting for you, let them know it's a long process and not to worry.
I was in ICU for 2 nights (typically it's 1 night but there were no regular rooms available). I left Monday morning and was surfing the web Monday afternoon. I was back at work 2 weeks later. Again, the worst thing for me was the nausia after the surgery. I don't think that happens to everyone, though. If it does, just ride it out. Dizziness is to be expected, don't worry. Any numbness on your head will slowly go away.
As I recall, some company, called PAS (can't remember what that stands for), who works with Brisman, hooked me up with all sorts of wires prior to the surgery. They monitor all Brisman's movements to make sure everything is going ok. This is added piece of mind. Again, it was 5 years ago for me.
Just be positive and have Faith in Brisman. Tell him Steve G says hello and is still feeling great. My surgery was 11/16/2007.
MSov - I had Trigeminal Neuralgia. I think it's the same hideous pain, just a different location..
Steve, I will make sure to tell Dr. Brisman you said hello and that your doing great!!!! I can not thank you enough for all of the information you have given me. I appreciate it so much. Every little bit helps and being able to talk with someone who actually had surgery with the Dr. I have put all of my faith in means the world to me.
I had my fiesta mri done tonight and as soon as he gets the mri they will submit the surgery to my insurance company for approval. Should not be any problems with that, thank God.
I am 5 hours away from Dr. Brisman, so the LONG ride home after surgery should be interesting to say the least. He said I will be in ICU for 2 nights and then a regular room the 3rd day and should be going home on the 4th day. I think he is keeping me longer due to living so far away.
It will be one expensive four days on Long Island, my bf and his sister are coming with me and they will need hotel accomodations, food, etc. But, thank God they will be there with me.
Anyway, thank you Steve from the bottom of my heart. Billie