GPN Rhizotomy/Neurotomy

1

I just went through GPN Rhizotomy/Neurotomy where the neurosurgeon went through a hole he drilledbehind my left ear and cut the GPN nerve (9th cranial nerve) along with a partial 10th nerve cut. I had this done at the Cleveland Clinic by a basal skull surgeon specialist (obviously knew his way around that area).

was done about a month ago and so for, no more pain although still having some headaches. admittedly might find out someday it did not work, but right now, wish i would have done this years ago.

I know it is not discussed in these groups or forums too much, but might want to consider at least exploring the option. by the way, he does not feel MVD is the best procedure to use on the GPN

2

Hi Ron,

I am so glad this has worked for you. I am still in the process of getting diagnosed but if I do have GPN, I would opt for surgery as soon as possible. For me, I have excrutiating pain in the middle of my throat and tonsils that changes from day to day- I mean left to right tonsil. I also have a lot of scar tissue so not sure if this is contributing to it or not. I just know something is terribly wrong with my throat and I have constant debilitating pain.

What were your symptoms before? How did you locate the surgeon to do your surgery? Glad you are well and pain free. -Suzie

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When i was having the pain, it was in the back of my throat, always on the left side (thus, it was the left GP nerve that was causing the problem). From my understanding, GPN is almost always just on one side. The fact that the nerve is so close to throat is why the pain is usually located where it is. If you are having pain switching from left to right, you need to question whether it is GPN, or at least typical GPN). While they cut and destroyed my left-side GP nerve, i don’t know if they can do that to both of them. I live in NE OH, and our medical clinic in my town is part of the Cleveland Clinic. My neurologist (he is not a Cleveland Clinic doctor) was the one who set me up with the surgeon in Cleveland. And as i mentioned in my original discussion, he prefers the neurotomy the preferred choice with GPN compared to MVD. I consider myself lucky that I live so close to that facility. Good luck.

4

Hi Ron,

I have a constant pain in the tonsil area only and also lots of scar tissue. It usually is on the left side but my pain can also be centered down the middle and sometimes it switches to the right tonsil. I am pretty sure it is just nerve pain and not GPN, but I am not sure, as it is the same nerve. I did receive a call from the main neurosurgeon at University of Pittsburgh who is an expert in GPN. He asked me all of my symptoms and basically said he was 100% sure I did not have GPN. He said the pain would not switch from tonsil to tonsil on any given day or hour and then have excrutiating pain down the middle of your throat . He said you can have nerve pain for a year after a tonsillectomy and he thought this is what I had. He also said scar tissue can cause severe nerve pain. I am seeing a neurologist in 2 weeks so see what is going on. I don't know why I am not more reassured after speaking with the neurosurgeon because there is the Atypical GPN. But he said you would never have pain down the middle of your throat. He also said that for most people, GPN comes out of nowhere and is only on one side. He said the pain definitely would not feel better when eating

So, the confusing part that i don't understand is- isn't the nerve pain caused by the glossopharyngeal nerve no matter where it is or is there such thing as just nerve pain? My pain is only in the tonsils- either the right of left tonsil- that is the scary part because GPN affects the tonsils.

Was your pain constant or was it episodic and happened every once in a while? While I am going to see a neurologist, you think I should feel a little better with what the neurosurgeon told me? He told me I would be the first case with my symptoms. But if there was any nerve damage- couldn't that cause the pain to be anywhere? I guess I am confused between the glosso nerve causing pain and GPN. I have been on Gab and not a lot of relief. Look forward to your response. -Suzie

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Hi Ron, (from another Ron)

Glad to hear your procedure went well. I also had a resection of my 9th nerve and partial on my 10th. I'm in Vancouver, BC, and my neurosurgeon was also adamant that mvd was not the right approach for GPN. My procedure was Nov. 19, 2010. So I'm actually 10 months pain free today. I too had a bit of a headache, off and on, for a number of weeks after. I have a slight slackness in the lower rear of my throat, on the affected side, but it's nothing that I notice unless I really focus on it. I'd say the strangest part since surgery, has been just trying to get back to being my normal self. I had bad pain for over 10 years and the last 3 were brutal. I think I became a bit of a curmudgeon. I also think I've had a prolonged reaction to the general anesthetic causing me to be maybe a little depressed for some time. I think I've only been nearing 100% in the last 2 or 3 months.

Anyway, glad you've gotten relief.

Ron

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Ron

so glad to hear all this from you, especially the comments about your surgeon and his thoughts on MVD for GPN. at least it tells me it wasn't only my surgeon who thought this way. so far i have still been ok, although it has only been a few months. i wonder how my fall and winter will be knowing how dull on drugs i was for the past year. i expect to have more energy which will be different. still should have done it years ago.

the other Ron

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Quite suprised how few on here, and on the other facebook GPN support forum, have had the resection or are aware of it. Not sure why it seems to be so rare. I’ve consistently heard of far worse repercussions and poor success with the MVD.

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Hi Ron - could you tell me who was your surgeon at the Cleveland Clinic? Thanks.

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my doctor up there was DR. Joung Lee. I think he is Filipino, but i think he was born and/or at least raised in U.S. no accent what-so-ever. He was great as well as one of his primary nurses that i worked with.

good luck

10

I am so glad to hear you are doing better. I have been pushing out going back to the neurosurgeon. I wanted to give the NUCCA corrections time to determine if it’s helping or not. I was feeling a little better two weeks ago but seem to be right back where I have been for the past year. I am not so sure that it is, or was any better. I think that I have become use to hurting and expect no less. Thank God I have been able to continue with my everyday duties. I do hate taking the pain meds. I have moments where I don’t remember actual conversations. It has to be due to being under the influence of pain meds. My life and job do not allow me time or free passes because of not remembering something. So far I haven’t forgotten anything serious. I do hope to hear more good news from you in the future. It looks as though I am heading in the same direction as you. Continue to get better!

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How are you doing now that we're well into fall weather? Don't be suprised if your energy is still low. It took me many months to get back to full energy. I've since been reading about general anesthetic and it seems that it is not uncommon for it to take 6 months or more to recover from the post anesthetic fog. I'll be one year post op on Saturday November 19th and still pain free!

Take care.

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Wow this is impressive about the surgery!! I'm from the land down under - Australia and a bit of a rariety down here having GPN. For many years it went undiagnosed until I started having massive attacks which went on and on for months relentlessly with no reprieve. It wasn't until the ENT specialist sprayed my throat with local anaesthetic twice and the pain still kept coming that I realised this is bigger than Ben Hur!! He then proceeded to gently touch the area and I went through the ceiling and had a massively long spasm that knocked the wind literally out of me!

I get it right-sided only in the throat and sections of my tongue. It started with the throat, then graduated to the tongue after a few attacks. I used to get niggling attacks constantly over the years where I'd get burning or stabbing but it was intermittent and didn't affect me as much as the big attacks in recent years. Had seen my neuro and ENT about it but the ENT couldn't see anything wrong!! That was approx. 10-12 years ago. It took until 4 years ago to get diagnosed...

I still have to be careful what I drink and eat as certain things can trigger it :-( but mainly I have it under control by means of acupuncture. It's the ONLY thing that has worked for me.

Sugery was mentioned by a neurosurgeon on my last attack as I end up hospitalised as so severe. They do the IV steroids and months of oral steroids in a vain attempt to try and settle it aong with anti-epileptic meds which I'm sure you've all been on that same path. But when surgery was mentioned and also the fact they had never done this type of sugery before and that it was extremely risky I was like no way you are touching me. I want a surgeon who knows what he is doing. Seems with the US being bigger you have access to surgeons who have done these procedures.

I'd love to learm more about what you actually had done. I'd also like to know what MVD is? We have limited info here from the medical side as I am constantly told I am a text book case; other than reading about GPN in a text book they haven't come up against someone like me. Plenty of cases of TN but not GPN... I actually had on my last emergency admission the whole of emergency in a panic. My BP was high 200's over high 100's from the constant pain. Couldn't talk, only could write inbetween violent spasms. Head of emergency was absolutely panic stricken because I couldn't talk and he couldn't find any information on GPN and what to do. His own words 'I can only find one paragraph about it in the Merck online site, which tells me bugger all. I don't know what to do!! I have never seen this before...' Leaves one with a lot of confidence!

I should note in my big attacks that the pain comes every 3-5 minutes and last anywhere from a few seconds to nearly a minute. This is without doing anything. If I am to swallow, or attempt to swallow a little water the pain comes earlier. I was in such agony and coulnd't even cry as even the motion of crying sent waves on continuous spasms. My big attacks last between 4-5 months at this rate. I end up a shadow of myself because I cannot eat properly. Lost around 14 kilos last round and there wasn't much of me to begin with. My intermittent ones are now a walk in the park for me but when they niggle I address it straight away with more acupuncture as I do not want any other big attack.

I have found that dry weather is worse for me too. Do you find the same thing? If my throat becomes too dry the pain will trigger.

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Your description of your condition sounds very much like mine, except mine was on the left. For me it started over 10 years ago with the occasional sharp pain in my throat and then months without anything. Slowly the pain stayed longer and the pain free times got shorter until about 2 years ago when I hit a point of no more pain free times. My pain management specialist suggested a neuro surgeon she knew who had provided relief for several of her patients that had reached a similar point as me. I live near Vancouver, British Columbia. My neuro surgeon, in Vancouver, said I was his 8th GPN surgery in his 20 years as a brain surgeon. So While it's rare, it's hard to imagine that the major cities in Australia don't have specialists with some experience with GPN. My surgeon does not recommend the MVD (micovascular decompression). He feels that there is significant work in exposing the nerve, to move it from arteries, wrap it in teflon and then buffer it with sponges, and that this often results in more harm than good. He does a resection of the GP nerve and a partial of the vagus nerve. My surgery was a year ago and I'm pain free with only a slight residual slackness in my throat on the affected side.

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AH that's the surgery they were talking about for me with the Teflon but had never done it on someone with GPN, and very rarely it has been performed here on people with TN and said it was risky.They actually stated that it can come back again approx. 5 years after surgery. One of our famous authors, Colleen McCullock, had this surgery done approx. 1 year ago now, maybe a bit longer for severe TN. It made headlines as the surgery isn't common and she nearly died from complications. Can't remember now what it was, whether it was a major bleed or clot, but it was very serious. She was in hospital for some time but has since recovered and a few months later stated she was going well. There hasn't been any further media on her so no idea how she is at present, but know she is able to write again as she has recently published another book.

I was actually hoping she would have shared her experience more with the public because there are many people who suffer terribly from TN here in Aust, and only a few with GPN.

I guess with us we just don't have the populas as what you have there. I went and saw several neurologists, one who was a professor specialising in MS at our leading hospital here is Aust and said he had seen it before a few times during his career but never to the extent of mine. The ones he saw were related to diabetes cases and were intermittent and managed fairly well with drugs. He also stated that there would probably not be a surgeon in this country who has performed the surgery on GPN or that would even be willing in my case because of the risk involved... this was also said by others and to be weary of anyone who just steps up to the plate and offers to do it unless they have done this surgery before. To date still do not know of one surgeon who has for GPN.

Do you have any info on this surgery you had that I could read. A website? Out of your surgeons 8 patients have they all been successful? What risks were involved with this?

Your mention of a no pain free period is what I was concerned with, and the fact that each big attack was bigger and better than the last and what would happen if it never went. So I feel your pain and can understand why you opted for surgery. I'm really pleased to hear it has been effective so far and hope it remains that way.

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Kaz. Your story sure rings true for me. Probably more so than any other of the GPN types I've connected with over the years. There's always lots of similarities in everyones story but often there are lots of variations.

Are you also on the GPN facebook group? A lot of people migrated over there and it's a bit more active on a daily basis. https://www.facebook.com/groups/16645264123/

Also, on this livingwithgpn.org site, if you click on the "Discussions" tab at the top of the page, you can go back through various discussions about symptoms, diagnosis, surgery, medication, etc. I know myself and others have left some pretty detailed entries about the nature of our own GPN progression, diagnosis and search for treatment and results.

My surgeon is Dr. Christopher Honey at the University of British Columbia. His specialty is around movement disorders, including MS. He actually checked me for MS during my initial consultation as I guess there is a much higher incidence of GPN or TN amongst people who have MS. He's got some info on his website that might be of interest http://www.drhoney.org/ . He doesn't really address GPN on there. He does talk about Trigeminal Neuralgia but the primary surgery for that is still the MVD. His comment to me was that the trigeminal nerve is much more easily exposed and moved for the purpose of an MVD, so the chance of incidental damage is much, much lower. The GP nerve, on the other hand requires a bit of digging just for the purpose of exposing it, moving it and then buffering it. He said that the rate of complications, as a result is much higher due to potential additional damage to the GP nerve and the buffering not lasting in the long term. He said that the facial muscles controlled by the GP nerve all have almost like secondary support from other nerves and so severing it seems to alleviate all the complications due to additional damage and ensures long term permanent relief. He said that all 7 of his previous GP surgeries were successful. He said that the facial after effects varied for each person, but none had facial droop. Tended to be limited to swallowing issues. He said that everyone would say that the procedure was worth it. I have to say that I can't say the same for the many people I've connected with over the net who had the MVD. There are some that it did provide relief to, but I've been suprised how many have expressed regret. some have even had it done more than once.

In North America we've got a couple of websites called ratemd.com and healthgrades.com, where you can search for doctors by name or by specialty and the region they serve. You can search for neuro surgeons and then look at the ratings they've gotten from patients and often the procedures they've done and how they've turned out. I'm sure there would be something similar for Australia. it's a good way to weed through all the possibilities. I was suprised myself that within neuro surgery there are many sub specialties.

Another thing I found was that my Pain Management Specialist was a wonderful resource and probably the most knowledgable person I met as far as GPN. She was the one that directed me to Dr. Honey and actually shared with me the stories of several of her previous patients who ended up going through her to Dr. Honey for the GPN resection and assured me that they were all happy and told me what a wonderful person Dr. Honey was. He really was. I finally felt like I met someone that understood me from the minute we met.

I hope that acupuncture continues to work for you. But keep up the search.

If there really isn't anyone in Australia, maybe they'll send you to Vancouver. Lots of Australians here, mostly headed to the ski hills.

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ratemds.com also covers Australia and NZ. I had a look and the neuro surgeon with the most ratings and one of the highest average ratings, seemed to have the most experience relevant to GPN. His website is http://www.popovic.com.au/ He's in Perth. Don't know where you're located. I know it's a big country.

His website talks about trigeminal neuralgia but not GPN, that was the case with my surgeon as well.

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Hi Ron, thanks for the information. I will have a look and read. I have seen the ratemds for here in Australia and it unfortunately, well when I last looked, was very basic. Tried using that orginally when sourcing out specialists for second and third opinions.

I thoroughly agree on your comment about finding someone who has experienced similar. While I hear others talk about their GPN I think why is mine so different in many ways, but now understand why mine is classed as severe. I felt some relief reading yours seemed to be as severe as mine knowing someone else understands and can empathise with how bad this can be. I can appreciate why you went for the surgery option as I was to the point with my last big attack that I didn't think I could take much more. I wanted to berid of this relentless nightmare...

To me my niggles under the surface are what others appear to experience with theirs, as in intermittent and nowhere near as severe, although when dealing with these niggles they do appear severe as it's a pain that one has never experienced before and a nasty one at that. Although once you've experienced at the other end of the spectrum you soon realise the niggles were on the bottom end of the scale compared to what this can dish out! I remember in early days thinking how painful it was, but now know that was nothing compared what it can do.

I had a quick look at the link to the surgeon in Australia and unfortunately he passed away earlier this year. The site is only there now for information it states as his rooms are now closed. He was on the other side of the country to me. I will have a read of Dr Honey's site a little later. Just preparing for some exams at the moment for uni for my degree, bit of a challenge doing this with the MS but the benefits will be worth it.

MS has thrown some pretty awful things at me, but GPN by my far has been worse than when I couldn't walk, even hold a cup etc for months on end, stand without support etc which has happened a few times amongst other awful things it does. Those things compared to GPN seem so insignificant now as nothing compares to the horrific pain it causes and everything else that comes with it.

Anyway, thanks for replying. I'll have a look at the Facebook page.

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He passed away. Holy Crap what a loss. Not sure if GPN would have been his thing but he sounded like a top notch neuro surgeon. Met a medical researcher in Europe last year, who I believe is from Boston, and his area is MS research and he was talking about major advancements that can halt the progress. Never sure how far off anything like that is from being approved from one country to the next.

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Interesting about the researcher. There's always talk of major advancements though that can halt it but never materialises. Usually because these reearchers are independents and have to find their own funding.

Every year we hear about a new drug that's going to do this or that, only to learn a few years later they're not so effective... basically having MS is a lucrative market for pharmacuetical companies, so they're not in a hurry for a cure.

I just had a little look into that surgeon from Perth trying to find out how he died. It all seems pretty hush and was very sudden. After reading further he had a terrible incident in Victoria where he was struck off the list for practising there. It was all over procedures and certain people claiming he did not follow procedure over a possible infectious disease, which appears the patient probably didn't have it. They won't know for sure until the patient dies and it altopsied. Don't know whether the patient is alive but this was 10 years ago. The disease in question was Creutzfeldt-Jakob Disease (CJD).

So the surgeon had to pack up and move to Perth where he suffered severe depression and was suicidal. I don't know if his death was related to this incident or whether it was by other means as all it states is sudden death, which usually here if there's no mention of a disease, or heart attack implies suicide. I'm wondering whether the person in question had passed on and something came up in the altopsy. Or maybe everything just got too much. Sad really as he was only 54 and obviously from things I have read was a good surgeon.

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Could you tell me who your surgeon was at Cleveland Clinic? I’m in Ky and am considering going there.