How many here have had GPN surgery? Or plan to?

1

I am just 2 months post op and improving from the surgery. I am pain free and hopefully will stay that way.

I am interested in the risk factors with MVD and if any of you had difficulty post op.

I had a spinal fluid leak, facial palsy, dysphagia, complete hearing loss on the affected side, a paralyzed vocal cord, and meningitis.

I know, I know. I took all the good stuff!

In the pic you can see the palsy if you look at the lip. I look like I am sneering but I actually can't smile at this point.

87-durango.jpg (238 KB)
2

Tess good to see you, it’s been quiet the last couple of days!

I know a few folk who’ve had MVD, some good, some bad, some almost as ugly as yours was by the sounds of things but the majority of the folks I know have had it for TN rather than the GN, so I can’t offer any info on the stats as who got which of the nasty side effects. I know Nichole’s had a rough time of it, and there was talk of another op tuesday passed, but I don’t know if it was a consult in the end or if they went ahead to do the op and sever the nerve completely.

I’ve not wanted to do the GN MVD, it’s such a scary prospect that it’s always really a last resort, when I had the face pain and we thought it was a trigeminal issue I would have done it in a heartbeat, because I had so much additional pain then, and the TN MVD is less risky, but for me I’m waiting for the styloidectomy, and for them to tell me if it’s going to be a really stupid idea or not given the distribution on my pain.

Who knows with the pain I’m getting in my chest, the decision may get taken out of my hands yet, I think I’m going to have to bite the bullet and get it seen to, cause if it’s my ticker getting affected, they don’t like to leave you from what I understand.

I don’t know though, I’d be really interested to hear everyone elses experience of this too!

Hope you’re doing well though hun, take care. x x x

3

Wow! It sounds like you’ve had a time of it! I’m so glad your pain is gone. I had the MVD surgery in early February. The artery was wrapped around the nerve and scar tissue has adhered them together. I spent 1 day in ICU and one in a regular room and then went home. I lost the hearing on the affected side, too, but it returned after several weeks, only to be hypersensitive to noise. I have to wear an earplug on that side when I go to movies. Like you, I had a spinal leak (that eventually stopped on it’s own) and meningitis. That was the worst. I’ve never felt so bad! I was able to return to work after 2 weeks. I teach elementary school and looking back, I probably should have taken a little more time off. I was trying to be stoic about all of this. I was on steroids for a while but was still having GPN shocks. The doc said it might take several weeks/months for it to go away and eventually he put me on a medication that stops spinal cord fluid production to try and help lower the pressure in my brain. That finally worked and I was pain free until about 3 weeks ago. It’s back again, but not as bad as before. I’m afraid that this whole process has started again. I had an MRI/MRA on Sunday, and I’ll see the neurologist tomorrow to see if what’s going on.

4

Hi Lisa!

I have hoped (unkind of me, I know) for someone to come along with similar complications after surgery. I am getting better all the time but still a distance from good as new. I went on leave 8/16 because of the pain and I became toxic on the tegretol. I am an an ER nurse and my place of employment has kindly extended my leave until the end of January.
So,first off, my biggest fear is the recurrence of the pain. I really don’t know that I could have surgery again. I had a brutal time and there was a night (during the meningitis period) where I developed serious heart arrythmias and it looked bad enough for the hospital to call in my family. Very scary. I pray that you do not have to repeat your experience.

Did you lose the hearing completely or just partially? How long did it take to come back? Did you have difficulty swallowing as well?

Hope your neuro appt goes well!

Tess

5

Hello!
Like you, the fear of the pain coming back is awful. I was terrified. My new MRA/MRI came back with nothing to say about what the recurrence could be caused by. I saw the neuro yesterday, and they really don’t know exactly where to go from here. She consulted with the partner of my surgeon and he admitted that he’s seen success with repeat surgery for TN, but he has very little experience with GPN. (same with my neuro) She’s very thorough and concerned, but isn’t exactly sure what to do next. We’ve tried a 2 week dose of steroids, thinking it may be scar tissue that’s inflamed, and now I’m taking Baclofen. They also think the inflamation could be due to some sort of virus. Who knows?? I do feel better, but the pain is still there. I’m so glad it’s less now. Both of the docs (and me too!!) agree that medication right now is a better choice than surgery right away. I’m definitely willing to try!
The GPN pain came and went for a little while after the surgery, and stopped completely after about a month. I was great until about 3 weeks ago and then I got those same old weird sensations you get just before the GPN hits. My hearing went away completely for 2-3 months it seems after the surgery. I was having to read lips to be sure I understood when someone was talking to me. The hearing just gradually came back over time and then went the opposite way! My ear has been hypersensitive ever since. I keep earplugs in my purse at all times. I agree with you about the meningitis. It was the sickest I’ve ever felt in my life! I didn’t have trouble swallowing, thank goodness! I’ve heard of others who have, though. It’s great that you have time off. I wish I could have had more time. Take it easy and rest. My symptoms seemed to be worse when I was stressed and/or exhausted.
Take care!
Lisa

6

Hi Tess. I was just thinking about your issue with facial palsy (I hope it's improving). The first surgery I had was to remove my styloid process, which gave me almost 9 months of relief from the Eagles Syndrome/GPN pain. The neuro surgeon who just did my latest surgery suggested that I likely got relief from the previous procedure because the removal of the styloid may have been traumatic enough to the GP nerve to cause it to go into shock for that period of time.

I wonder if, to some extent, this might be the case with your palsy and that you'll hopefully have progressive improvement with full recovery.


Tess Varland said:

Hi Lisa!

I have hoped (unkind of me, I know) for someone to come along with similar complications after surgery. I am getting better all the time but still a distance from good as new. I went on leave 8/16 because of the pain and I became toxic on the tegretol. I am an an ER nurse and my place of employment has kindly extended my leave until the end of January.
So,,,,first off, my biggest fear is the recurrence of the pain. I really don't know that I could have surgery again. I had a brutal time and there was a night (during the meningitis period) where I developed serious heart arrythmias and it looked bad enough for the hospital to call in my family. Very scary. I pray that you do not have to repeat your experience.

Did you lose the hearing completely or just partially? How long did it take to come back? Did you have difficulty swallowing as well?

Hope your neuro appt goes well!

Tess
7

Hiya Ron !

Sounds like you are well on your way to a full recovery. YES!!!!! I would not wish this awful, terrible, devastating disease on my worst enemy. None of this has been an easy ride. The pain was excruciating, the remissions fear filled, the surgery itself was so very difficult, both mentally and physically.

The medical consensus on my recovery is thus: They don't know. The brain is such a mysterious and awesome entity. It never reacts the same way or reacts in a predictable manner. I have grown weary of specialists shaking their heads and the worrds "I don't know." But they really don't know.

My thoughts on regret. I can't have any. I was so debilitated preop that I was left without a lot of choice. Surgery, suicide, or maybe alcoholism. My coping skills were growing mighty thin. It became easy to finish a bottle of wine and start a second. Marlboro knew me by name. The last three years, my drinking and smoking habit grew as a coping mechanism. Pain meds sure didn't work. The 3 months prior to surgery were absolutely my bottom.

On a bright note, I am improving. Albeut slowly, but surely. The palsy is getting better, as is the dysphagia. I pray I am not one that gets chronic menengitis. I don't have another surgery in me right now. The vocal cord still is a bother. They think that I will not get my right ear hearing back, but who knows?

Today I just feel blessed to be pain free and loved. That has to be enough right now.

Merry Christmas!

Tess

8

Oh Tess, you are beautiful! I’m trying to figure this site out. I had a larangotomy (where’s the spell-check on this thing?) - you know what I mean - YESTERDAY! I am NOT 10000000% convinced that I have GPN…so I had my ENT look WAY down there. He removed a node (what does that mean? I was DOPEY when we discussed it) but he said it was not at all suspicious and prob not the cause of pain. Sure hurts like hell today! Anyway, SO glad to know you’re here. And so very happy you’re improving daily. I’m still considering the MVD at the House Ear Clinic in LA…but I need to be a gagillion % SURE that I do have GPN before I have that surgery. Don’t know what it will take before I’m convinced…Take good care, gorgeous!! Nikki

9


Hi Nikki,

A good neurologist or ENT really should be able to tell you whether you have GPN or not. There's a pretty clear process of elimination. One of the simpler ones are having a bit of freezing in the area of the glossa and if it relieves the pain it's a pretty clear indicator of GPN, as long as Eagles Syndrome has been ruled out. Also, just giving a detailed description of your experience to a neurologist would likely lead to a pretty conclusive diagnosis on the spot. Unfortunately GPN doesn't show up on MRI's.

Myself I just recently (Nov. 19/2010) had a resection of my Glossopharyngeal nerve with Dr. Christopher Honey at Vancouver General Hospital. At this point I feel like the procedure was a 100% success without any residual nerve damage. The procedure is done the same as an MVD up to a point. In both procedures, they drill a hole the size of a 50cent piece. I always pictured like a drill from a hardware store but they actually use like a dental drill and they go round and round, making the outline of a circle until they have just about broken through and they pop the bone cork out. There's lots of You Tube videos where you can see it being done. Our neck muscles run up under our skull and actually block the view of the brain at that point so they have to part the muscle (you definitely feel that after the surgery for a few weeks, but not unbearable) to gain access to the brain. The Glossopharyngeal nerve is a little buried in brain tissue so they carefullyl have to work away to expose the nerve. As they do that, it also exposes the artery that is usually the culprit of most of your suffering because it lays on the nerve and over stimulates it. This is where the procedures differ. With the MVD they would at this point place teflon batting between the nerve and the artery as a buffer. This usually produces relief for most people. The downside is that over time the padding can move and the pain can recurr. Another issue is that there is a bit higher occurence of meningitis. Meningitis while very serious is quite treatable, unfortunately for many people who have had a MVD and develop meningitis, the meningitis can be chronic. Meaning that even after being treated, the meningitis will continue to recurr and cannot be "cured" until surgery is done again to remove the teflon batting.

The "resection" I had done, requires the surgeon to expose the nerve down to the roots. They then, one at a time, stimulate the each root to see if it produces facial or any muscle movement. If it does then they leave it alone. If it doesn't, then it is a pain receptor and so they section off that root. After it's done there is nothing left behind.

Statistics seem to suggest that both procedures carry the same risks for facial paralysis or swallowing issues. I was Dr. Honey's 8th such procedure for GPN and all 8 have been successful without residual damage. He's also done about 200 similiar procedures for Trigeminal Neuralgia with complete success and no residual damage. He seems quite adamant in his belief that MVD is an outdated procedure.

I'm not a doctor and I barely know my ass from a hole in the ground, so I can't tell you if he's right or not. I can just say that he inspired total confidence in me and I have not seen much information out there about this procedure so I just thought I'd spread the word.

I have to say he had a Neuro Surgeon from Britain working with him as a fellowship. I took this to mean that they had not yet completed their training/residency but when I asked her about this she said "no, I'm a full fledged neuro surgeon but doing a fellowship with an experienced surgeon is just an option to add to your skills and working with someone like Dr. Honey is a real feather in your cap. I could tell she really admired him.

Anyway, hope that info helps.

Ron


Nikki D said:

Oh Tess, you are beautiful! I'm trying to figure this site out. I had a larangotomy (where's the spell-check on this thing?) - you know what I mean - YESTERDAY! I am NOT 10000000% convinced that I have GPN....so I had my ENT look WAY down there. He removed a node (what does that mean? I was DOPEY when we discussed it) but he said it was not at all suspicious and prob not the cause of pain. Sure hurts like hell today! Anyway, SO glad to know you're here. And so very happy you're improving daily. I'm still considering the MVD at the House Ear Clinic in LA.......but I need to be a gagillion % SURE that I do have GPN before I have that surgery. Don't know what it will take before I'm convinced.......Take good care, gorgeous!! Nikki
10

WOW, Ron…THANKS! Very helpful. So many things have been ruled out - including eagle’s syndrome, bad tonsils, had my carotid artery doppled, have been scoped thru the nose, down the throat too many times to count, MRIs (which actually did show a large looping artery at the root nerve entry…something like that), CTs, radial x-rays of teeth, the laryngostamy (sp?) I endured yesterday, and I have forgotten more than I’ve named my many medical adventures regarding this PAIN…just like a lot of people out there, I am terrified to have this surgery. I am going to look into Dr. Honey’s (LOVE the name) technique. I also love Vancouver, and I think recovering there would be very nice…would probably have to stay at the Fairmont for at least a week or so! By the way, did I see a photo of you post-op on the GPN facebook site? OWIE!!! I’m thrilled about your results, Ron. I wish our buddy, Tess, had such a fortunate outcome, but I know she’s on the mend…poco a poco…little by little. My thanks and all the best to you, Nikki

11

Yes I think I had my post op stitches posted for a little . They're healed and pretty much hidden by patch of short hair. The back of my head looks like a seaside golf course with the deep rough and the closely cropped green around the hole.

I actually live a little north of Vancouver by ferry. I was in the hospital for almost 3 days and spent a 4th with family as I didn't feel up to the trip home yet even with my wife driving. After that I was just glad to be home. And the first couple of weeks were kind of non-existent with the post anaesthetic effect. On top of that Dr. Honey insisted I wear a surgical stocking type thing that provided gentle pressure to the back of my head to prevent pooling of fluids and reduce swelling. I had to wear that for ten days and no washing my hair for ten days either. So don't get any romantic ideas about the Fairmont. Not that we don't welcome medical tourists 'cause we do. I just want to make sure you know, at least what my recovery was like, so you have some idea of what you expect if you ever did choose Vancouver.

And actually his name was what really sold me. I've always been a big fan of Winnie the Pooh and when his name turned out to be Christopher and Honey, I thought it was an amazing omen. Better than Piglet and Eeyore anyway :-)

Ron

Nikki D said:

WOW, Ron.......THANKS! Very helpful. So many things have been ruled out - including eagle's syndrome, bad tonsils, had my carotid artery doppled, have been scoped thru the nose, down the throat too many times to count, MRIs (which actually did show a large looping artery at the root nerve entry....something like that), CTs, radial x-rays of teeth, the laryngostamy (sp?) I endured yesterday, and I have forgotten more than I've named my many medical adventures regarding this PAIN....just like a lot of people out there, I am terrified to have this surgery. I am going to look into Dr. Honey's (LOVE the name) technique. I also love Vancouver, and I think recovering there would be very nice.......would probably have to stay at the Fairmont for at least a week or so! By the way, did I see a photo of you post-op on the GPN facebook site? OWIE!!!! I'm thrilled about your results, Ron. I wish our buddy, Tess, had such a fortunate outcome, but I know she's on the mend.....poco a poco....little by little. My thanks and all the best to you, Nikki
12

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

13

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

14

Geez, my ears have been burning! Nik, if you decide to go to Vancouver to recover, you can hire me private duty. I am a crackerjack nurse and I have intimate knowledge of craniectomies. Besides, I have always wanted to see Vancouver!

Yes, things are slowly getting better. I started some therapy to help with the back to work transition. I can nearly smile now! No pain whatsoever. I am hoping to be nearly me old self in the next several months. So good to see you here, Nikki!

Ron, glad things went so well for you. My son is named Christopher and I dearly wanted to name him Christopher Robin. Was out voted. (sigh)

15

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. :frowning: 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…

16

Hi Amy,

I haven't heard of anyone being on Baclofen although it's basically another anti-seizure medication, so it fits that it would possibly provide some degree of relief as most other seizure medications, lyrica, gabapentin, carbemazepine, have been shown to have some effectiveness.

As for the MVD, it's not all that different from the procedure I had. If you plan on flying, that might be tough, as there is air in your cranium after the procedure, so they don't recommend flying on that basis for over a week. On top of that, a common after surgery issue is that your ear on the affected side will be plugged for 4 to 6 weeks. Who knows, it may not happen for you but my surgeon said it's more likely that it will. it's because your inner ear tubing is affected by the inflammation and cannot drain until all the inflammation recedes which takes up to 6 weeks. My surgery was November 19th and we had already booked a trip to Mexico for end of January. I never thought that beginning of January I'd still have some degree of ear blockage. Luckily it seems to be improving quickly now and today it's almost unnoticeable so I think I'm a go for the trip.

I've emailed Dr. Honey and asked if he could suggest Neuro Surgeons in Canada and the US that perform a resection of the GPN. I'll post a note if he's willing to share some suggestions.

Take care,

Ron

17

Wow, RON!! If Dr. Honey responds, post that info ASAP! And Tess, if I do have the surgery in Vancouver, I would hire you as my nurse…and we would stay at the Fairmont Pacific Rim (not the Waterfront; the other one - the NEW one - it’s BEAUTIFUL!!! And I have legit (sorta) Gov’t ID for the good rate). Amy, when I consulted with Dr. Marc Schwartz, House Ear Clinic, Los Angeles, he said the hospital stay would be three days, and I would have to remain in LA for at least a week for post op visits, looking for infection, getting stitches out, etc. And that after that, I could fly. On a plane; not on my broom! I think Dr. Honey’s approach is amazing and really worth looking into…that’s where my head is right now. Tess…I’m just so happy that you’re on the mend, and that your face is working and that you will be back to normal in short order. All the best to all of you…Nikki

18

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.

19

Hi Amy,

Can't remember if it was you I asked if they had ruled out Eagles Syndrome?

As for the medications, Trileptal is the most successful one I ever was on, but, it took a good six weeks of taking it before it kicked in.

When testing for GPN my ENT used a hypodermic with a small (diameter) curved needle and a little dose of freezing down the throat and in the glossa region. As for the MRI, I don't really know if it can do much more than rule other things out.

Personally, the only procedure I had heard of when I told my pain management specialist I had had it and wanted to look in to surgery was MVD. And she said "I have a Neuro Surgeon colleague who has helped several of my patients get 100% relief through surgery". Turned out to be Dr. Honey. When I met him, he described his approach and it seemed to make sense and he said, although GPN is very rare, he had done 7 such procedures before me with 100% succes and no residual effects.

The continuous 12 to 14 hours of pain seems a little odd.

My pain always had an element of spasming to it like a muscle cramp and it was usually set off by swallowing. At it's worst it would hang around 24 hours a day 7 days a week for months. But it would not be what I would describe as continuous. Whenever the pain would strike it would also subside and then I'd have that moment of calm just like when you stretch out a muscle cramp. But it could strike again within a minute. And it could do it all day long like that. So I'm not sure if that's what you mean by "continuous". I had a couple of one or two month stretches like that where everyday I had those intense pains just a few minutes apart. At that point (I hate to say it) I was somewhat suicidal (but that's not an answer! There is help out there!!).

You might want to consider consulting with a Neuro Surgeon just to tap their knowledge of the condition. When I went for my consultation with Dr. Honey, he interviewed me for over an hour, asking for great detail. Afterwards he stated "you absolutely have GPN".

Hope that helps,

Ron

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.

20

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...