HEy sorry I have been offline a while. work/christmas/house reno... you know life. anyway i have gotten off triliptal and onto neurotin2200mg daily. i am in love with the drug it takes about 80 percent of the pain away. However my hips are killing me. i can barely walk. I see joint pain is a side effect. so i am now strongly considering mvd. I have made an appointment with a pittsburgh specialist.at UPMC med center. my question is how long are most people off work.....
Thanks kathleen
Pittsburgh upmc neurosurgeons at the minimally invasive center.
Lisa Hawkins said:
Hi,
I had MVD surgery at Baylor in Dallas just about 1 year ago. Dr. Richard Gray was my neurosurgeon, but he’s moved. He was fabulous! I was able to return to teaching elementary school in about 2 weeks! I had absolutely no pain until this fall. My symptoms returned in November, but not as bad as before the surgery. I had tried just about every medication possible (lyrica, gabapentin, carbemazepine) prior to the MVD, except Baclofen. My neuro prescribed it in November, and it’s the best of anything I’ve tried. I was a zombie on the others and nothing eased the pain. I have a little bit of drowsiness, but other than that, no side effects!! We’ve had to keep increasing the dosage, and I’m not totally pain free, but it’s definitely better. My neuro hopes to eliminate the pain and then back me off of the meds and see what happens. That scares me to death because I don’t want the pain to return. I’d stay on Baclofen forever if that’s what it takes.
In response to your type of pain, I have 2 kinds: One is the dreaded electric shock in the back of the throat that just zaps the crud out of me at random times (usually when I’m talking to a class of 25 10 year olds) and the other is a constant feeling that I have tonsillis and an ear infection at the same time. Once this one starts, usually when I swallow first thing in the morning, the pain stays all day. Is that similar to your pain? I had an artery that was looped completely around the nerve and adhered to it with scar tissue.
I wish you the best as you wait for your surgery. Even though my pain has returned, it is so much better than it was before. I’d do it again. Good luck!
Amy Anderson said:I have been referred to Dr. Alksne at UCSD for MVD. I am unsure what to expect. I am waiting for a call back to get the ball rolling. In the meantime, I have been put on Baclofen. Anybody familiar with this drug? I am also wondering how long I should expect to be in San Diego before I can fly home. I have researched MVD, and know that there are risks, but the risks are worth it to be rid of this pain. I have looked at Dr. Honey’s website, and wish he was state side, I don’t have a passport.Anybody have recommendations for neurosurgeons in the US? Alksne is the only one I have found than specializes in GPN, but I would think there would have to be others…
Hi to you all been a while since i have been on here , i had mvd surgery in april 2010 complications for me were left vocal cord palsy also return of constant pain after about 2 months .
I am booked in to have mvd surgery again on the 25th jan and to have surgery on my vocal cord in march.
I am very scared about going in again but the pain is tenfold and pretty much constant so dont have much choice really. Maybe ill be seconed time lucky .
Ron K said:
I wish you the best with that. I had my condition for about the same length of time, but didn't know it was GPN until about 4 years ago. I did have eagles syndrome as far as the elongated styloid on the same side and could definitely feel a probing sensation instead of the pain, so I probably still needed the styloid removed but my hunch is that the nerve had been irritated for so long, by the styloid, that I was ripe for it to transition into GPN by default.
The Fairmon Pacific Rim is beautiful. I've never stayed there but I've stayed at the Pan Pacific beside the convention center for work. I've stayed at the Fairmont Hotel Vancouver many times for committee I was on.
It's got great old world charm and the loveliest chocolate lab that lives there.
We used to get a $99.00 gov't rate! See if someone can make you some fake BC gov't id :-)
Just don't mention my name. You'd probably regret it :-)
Nikki D said:Ron, you are a funny one! I like the Winnie the Pooh omen.......and I find the people from and around Vancouver to be so very friendly and hospitable.
I already looked up info on Dr. Honey. Very interesting theory........it's not that the nerve is bungled because it's compressed; "The cause of the pain is thought to be due to a demyelinated plaque in the trigeminal nerve not a vessel compressing it." (Dr. Christopher Honey) I've read that MS patients who suffer from cranial nerve disorders do so because something goes terribly wrong with the myelin sheath on the nerves...... I think Dr. Honey indicates that by the nerve being compressed, it becomes demyelinated.........that's my take on it. BOY, I could be all wrong. But this resonates with me....and the way he treated your nerve, rather than buffering it, makes sense. I've read everything I've been able to get my hands on about GPN - I've had it for 8 - 9 YEARS. It was misdiagnosed more than it was diagnosed. I really liked the specialist I consulted with in Los Angeles at the House Ear Clinic - Dr.Marc Schwartz. He's in the brain stem DAILY. He does hundreds of TN surgeries every year, and a handful of GPN MVD a year.......his technique is to get the artery off the nerve. Thank you so much, Ron.....Vancouver's looking pretty good.....especially recovery at the very non-romantic Fairmont (Pacific Rim...stayed there last year.......oooh, la la!!!) Nikki
Sending you positive energy for your surgery.
Take care.
Ron
lorraine smith said:
Hi to you all been a while since i have been on here , i had mvd surgery in april 2010 complications for me were left vocal cord palsy also return of constant pain after about 2 months .
I am booked in to have mvd surgery again on the 25th jan and to have surgery on my vocal cord in march.
I am very scared about going in again but the pain is tenfold and pretty much constant so dont have much choice really. Maybe ill be seconed time lucky .
Ron K said:I wish you the best with that. I had my condition for about the same length of time, but didn't know it was GPN until about 4 years ago. I did have eagles syndrome as far as the elongated styloid on the same side and could definitely feel a probing sensation instead of the pain, so I probably still needed the styloid removed but my hunch is that the nerve had been irritated for so long, by the styloid, that I was ripe for it to transition into GPN by default.
The Fairmon Pacific Rim is beautiful. I've never stayed there but I've stayed at the Pan Pacific beside the convention center for work. I've stayed at the Fairmont Hotel Vancouver many times for committee I was on.
It's got great old world charm and the loveliest chocolate lab that lives there.
We used to get a $99.00 gov't rate! See if someone can make you some fake BC gov't id :-)
Just don't mention my name. You'd probably regret it :-)
Nikki D said:Ron, you are a funny one! I like the Winnie the Pooh omen.......and I find the people from and around Vancouver to be so very friendly and hospitable.
I already looked up info on Dr. Honey. Very interesting theory........it's not that the nerve is bungled because it's compressed; "The cause of the pain is thought to be due to a demyelinated plaque in the trigeminal nerve not a vessel compressing it." (Dr. Christopher Honey) I've read that MS patients who suffer from cranial nerve disorders do so because something goes terribly wrong with the myelin sheath on the nerves...... I think Dr. Honey indicates that by the nerve being compressed, it becomes demyelinated.........that's my take on it. BOY, I could be all wrong. But this resonates with me....and the way he treated your nerve, rather than buffering it, makes sense. I've read everything I've been able to get my hands on about GPN - I've had it for 8 - 9 YEARS. It was misdiagnosed more than it was diagnosed. I really liked the specialist I consulted with in Los Angeles at the House Ear Clinic - Dr.Marc Schwartz. He's in the brain stem DAILY. He does hundreds of TN surgeries every year, and a handful of GPN MVD a year.......his technique is to get the artery off the nerve. Thank you so much, Ron.....Vancouver's looking pretty good.....especially recovery at the very non-romantic Fairmont (Pacific Rim...stayed there last year.......oooh, la la!!!) Nikki
Amy Anderson said:
Thanks Ron! I am still taking my Trileptal, and have added the Baclofen. Not sure if it is going to help at all, but while I am waiting to figure out what is going to happen with my referral, I am willing to try anything!
I looked up resectioning, and not finding much. Is there a website that you looked at that helped you choose resectioning over MVD?
That would be awesome if Dr. Honey could give you some recommendations! I want to make sure I do my research before I let someone cut open my head!
Thanks Nikki! Is Marc Schwartz a GPN specialist? While I have family is San Diego that would make this easier, I am willing to go where the best is!
Question time... I have been diagnosed by an ENT and two neuros with GPN, but the only test that has been performed is an MRI. The MRI showed a small cyst, but the neuro said it was of no concern, and wasn't causing my GPN. My husband has been researching as well, and was wondering if this could be TMJ instead. I told him the symptoms don't match up, but I have one symptom that doesn't match with what I have read of GPN, my pain is not intermittent, but constant pain for 12-14 hours. Has anyone experienced this? I plan on calling my neuro and seeing if they can apply medicine to the back of my throat like I have read about to confirm before I go meet with the neurosurgeon.
Hi,
I had the MVD surgery a little over a year ago, and my symptoms are back with a vengeance. I'm going to see the neurologist on Monday. I know exactly how you feel. I can't believe this is all happening again. This time around, it's worse. I've been really hoarse, like you, and being an elementary school teacher is really rough when you can't talk! Please let me know what your doc says.
Really sorry to hear that your surgery hasn’t worked. I had surgery for GPN on November 19th, 2010. I didn’t have MVD surgery. My Neuro Surgeon recommended a rhizotomy which is selective severing of the nerve roots. It was actually done while I was asleep. Everything is pretty much the same as an MVD until the nerve is fully exposed. At that point, rather than padding, they expose the nerve to the brain stem and then stimulate the nerve roots. If the stimulation produces facial movement, they leave it alone. If it does nothing, then they fry it. I know it hasn’t been long, but I’ve had 100% results without any side effects. I’m the 8th such procedure for GPN my Neuro Surgeon has done and he says, that while there’s never any guarantee’s with such a procedure, he’s been batting 100%. He’s also done about 200 procedures for Trigeminal Neuralgia. He’s got more info about the rhizotomy on his website but only in terms of Trigeminal Neuralgia. http://www.drhoney.org/ I would assume that other surgeons must be doing this procedure elsewhere. I mean Vancouver’s got some great hospitals but none of them are the Mayo Clinic.
blaine pleming said:
I just had MVD surgery a week ago last Monday. I'm not back to work yet, but I go to get my staples taken out this Tuesday.
My symptoms were different than most people's. Instead of a shooting pain, I experienced an incessant 24/7 tickle/itch feeling that was driving me crazy. I had my surgery at MUSC in Charleston, SC. My doctor removed an artery off the nerve & inserted two sponges in between. When I came out of the surgery the awful feeling was gone. But then 4 days later it was back. This has really brought me down. I can't figure out what might have happened and am waiting to meet with my doctor on Tuesday. I'm feeling pretty stressed out about it. To make matters worse, I have been extremely hoarse since, and though I am maybe seeing some improvement there, if it doesn't get better than it is now I fear that I will not be able to continue my job as a lawyer.
Hi Lisa,
Really sorry to hear this. I would suggest asking your Neuro Surgeon about doing a rhizotomy. They must do this procedure other places besides Vancouver.
Ron
Lisa Hawkins said:
Hi,
I had the MVD surgery a little over a year ago, and my symptoms are back with a vengeance. I'm going to see the neurologist on Monday. I know exactly how you feel. I can't believe this is all happening again. This time around, it's worse. I've been really hoarse, like you, and being an elementary school teacher is really rough when you can't talk! Please let me know what your doc says.
I know I'm starting to sound like I get a cut from every rhizotomy performed.
I lived with GPN for at least 6 years and possibly more. About 8 or 9 years ago I started developing significant shock like pains in my throat when swallowing. Early on it would happen rarely and if I just watched how I swallowed for a day or so, it would go away on it's own and not return for many months. I thought I was having some kind of weird sore throat. It was a couple of years before it became hard to ignore and an ENT and MRI diagnosed that I had Eagles Syndrome. Apparently not an unusual precursor to GPN. It took a couple of years to find an ENT that would do the surgery to remove the offending styloid. After removal I was pain free for about a year and then went 5 years through every medication that's ever shown some results for GPN. Some worked but they all eventually would fail. In the last year my pain management specialist said that I had really reached the end of my medication options and she referred me to a Neuro Surgeon. At this point I was experiencing severe pain in the throat, often with severe pain in the ear (a feeling like someone was poking with a sharp needle and pouring boiling water into my ear at the same time). I would also get a strange scalp tingling that was accompanied by a high sensitivity to touch. So there were days that I couldn't wash or dry my hair.
The Neuro Surgeon suggested that it would be difficult to tell how much the eagles syndrome contributed to the GPN and as for Vascular Compression, I got the impression that that was generally a given in typical anatomy. He also figure that the reason I had relief from the removal of my styloid is that the procedure can be quite a rough one and that I likely sustained enough trauma to the nerve, in the process, that it caused it to go dormant.
He said that he prefers a surgical rhizotomy for GPN since that nerve has far fewer critical functions than the Trigeminal nerve. He really seemed like a good person, came very highly recommended and I new a couple of nurses that worked with him early on when he was setting up the Neuro Unit at Vancouver General and they just thought he was amazing.
So I went for it. It was an easy decision as I had already reached the conclusion that I didn't want to go on the way I was any longer and one way or the other I was going to get relief. Sounds desperate but I had really hit bottom. Just knowing there were no more medications to give me relief really frightened me.
Hope that helps.
Ron
Hi,
I'm glad your voice is stronger. That's a good sign. I hope you're pain-free once all of the swelling goes down.
I met with the neurologist this week and she ordered a hi-res MRI. It showed that there is scar tissue, but of course, any surgery will have scar tissue. It also showed that the artery is very close to the nerve. He won't know until he goes back in. I also have a possible buckling of the mesh or a screw has worked it's way out, causing a painful lump on my scalp. To top it all off, I'm now experiencing symptoms on the opposite side! I met with the surgeon and he says I need to decide which side is worse, and have surgery on that side. I can't believe all of this!
blaine pleming said:
Lisa, see my response to Ron's post below. How did your appointment with the neurologist go?
blaine pleming said:Lisa,
I'm terribly sorry to hear that your symptoms have returned. You have my truest sympathy. I will report back to let you know what he says. Please feel free to do the same after you see the neurologist. Take care of yourself.
Blaine
Lisa Hawkins said:Hi,
I had the MVD surgery a little over a year ago, and my symptoms are back with a vengeance. I'm going to see the neurologist on Monday. I know exactly how you feel. I can't believe this is all happening again. This time around, it's worse. I've been really hoarse, like you, and being an elementary school teacher is really rough when you can't talk! Please let me know what your doc says.
This is in response to Tess’s comment with regard becoming “toxic” on Tegretol. I have just started Tegretol, as Neurontin made me put on a bunch of weight. I am hoping to take some off with the Tegretol. Although I do feel a little funny on it. My doc has not ordered my to have any blood tests with this med, only if I started the carbamazapine…should I ask her about it?
Thanks much!
Kara
Hi Kara. Before my surgery I was on oxcarbazepine. My doctor said it was a new improved version of tegretol/carbamazepine. It was ridiculously expensive but luckily it was covered. I know all the med's act differently on different people but for myself it was the most effective, painwise, of all the neuroleptic med's. I generally felt pretty functional on it.
One thing I'm curious about is your comment about not needing bloodwork with tegretol but you would if you started carbamazepine. I'm pretty sure that tegretol and carbamazepine are the same drug, just that one is a brand name and the other is the generic name.
Ron
Ron K said:
Hi Kara. Before my surgery I was on oxcarbazepine. My doctor said it was a new improved version of tegretol/carbamazepine. It was ridiculously expensive but luckily it was covered. I know all the med's act differently on different people but for myself it was the most effective, painwise, of all the neuroleptic med's. I generally felt pretty functional on it.
One thing I'm curious about is your comment about not needing bloodwork with tegretol but you would if you started carbamazepine. I'm pretty sure that tegretol and carbamazepine are the same drug, just that one is a brand name and the other is the generic name.
Ron
Kara Wilson said:
Ron K said:Hi Kara. Before my surgery I was on oxcarbazepine. My doctor said it was a new improved version of tegretol/carbamazepine. It was ridiculously expensive but luckily it was covered. I know all the med's act differently on different people but for myself it was the most effective, painwise, of all the neuroleptic med's. I generally felt pretty functional on it.
One thing I'm curious about is your comment about not needing bloodwork with tegretol but you would if you started carbamazepine. I'm pretty sure that tegretol and carbamazepine are the same drug, just that one is a brand name and the other is the generic name.
Ron
Hi Ron ~ Thanks for your reply. You know what? I am sorry. I had the name of the drug wrong (i am a newbie!!!) I asked for Topamax, and the neuro said this was only a second line drug for GN, but I wanted it beacuse I know it is also good for weight loss and I need to get off the weight that I gained from the darn Neurontin!!!
I asked for a copy of my brain MRI and the IAC findings say "The visualized portions of the cranial nerves 9 and 10 are normal in morphology and signal intensity. The crainial nerves 6, 7, and 8 are within normal limits. Trigeminal nerves are unremarkable. No mass effect from vascular structures in the root entry/exit zones of these cranial nerves. The cerebellar tonsils are slightly low-lying, but within normal limits. No abnormal nerve enhancement."
I guess the operative word in the report is maybe??? is "the visualized portions" are normal? This baffles me because if everything is looking somewhat normal, whay am I in so much pain??????
Thanks for your reply, Ron!!! Always looking for some kind of understanding for this dreaded condition!
Hi Kara. I went through a few MRI’s and a LOT of frustration until my ENT specifically requested a new MRI and requested that the radiologist specifically look for an artery that might be compressing the glosso nerve…BINGO - there it was. But I had a few MRI reports with findings exactly like yours - nothing remarkable - until it was SPECIFIED to look for an arterery compressing the nerve. Hope this helps. Nikki
Thanks Nikki!! Hope your pain is ZERO today!!!
Interesting. I remember almost the exact same terminology on my MRI… “unremarkable”, “normal limits”. Still my neuro surgeon was convinced that I fit classic GPN and offered me the surgery. Not an MVD but a rhizotomy, where the offending nerve roots are destroyed. I’ve had total relief since the surgery. His comments were that GPN is not convincingly diagnosable with current technology and that symptoms and characteristics are the most telling.
Hi Ron ~
Thanks again for the reply. I looked at my last post to you and I have a bunch of typos and misspellings, so this time I will slow down. How embarrassing! Must be the meds...LOL!
I have not yet been referred to a neurosurgeon. I have heard - but I may be wrong since I am new to this - that there are only a couple here in California that perform this type of surgery. My doc is Dr. Irene Oh, Encinitas. I was surprised that she nailed the diagnosis so early, since, from reading off of this site, it sounds like it is a hard condition to diagnose? Maybe not. Or maybe just a process of ruling things out.
It is interesting that you described your symptoms as pain like someone pouring boiling water down your throat. That is exactly how I have felt on days. Mine has moved around a bit, though. I have deep ear pain/throat pain, and now outside neck pain, as though I've strained a muscle. I asked my doc just the other day if that was normal for my "condition," and she said yes, that the pain could refer down my neck. I wasn't sure if I needed some type of neck scan. I even called the office and asked her assistant that. She said not at this time. They must be getting so sick of me...and my calls! That's why it's great to talk to all of you wonderful people!!!!
I was wondering: Where did you have your surgery, Ron? I am terrified to have my skull opened up!!
I am so glad to hear you are pain-free these days!!!! Have a great day.........
Kara
Hi Kara. My symptoms match yours, too. Also pain down my neck…in my throat, tonsil area, and deep in my ear. I saw a specialist at House Ear Clinic in LA. Don’t remember if I told you that. I don’t know if they do the procedure Ron had - but they do MVD, and they’re in that part of the brain all day, every day. I saw Dr. Marc Schwartz. He only does a handful of GPN surgeries a year, but hundreds of TN cases every year. Like you, I’m terrified of the surgery. My pain level remains between a 3 - 7, and averages a 5. It’s so annoying I could scream, or cry, but both of those make it so much worse. So I’m mostly quiet these days. Good luck to you and have a pain-free weekend…Nikki