Hi Folks. I’m new to the site, but not to GPN, unfortunately 
I’m scheduled for surgery with Dr. Chris Honey, NeuroSurgeon at Vancouver General. He’s recommended a procedure, drilling a hole near base of skull, exposing the nerve and severing it. I wondered if anyone has heard much of this. He said that Micro Vascular Decompression, in many cases, has a shelf life due to movement of sponges or nerve and artery. The result has been that many people, at that point, have opted to have the nerve severed, despite the risk. He said what they’ve found, in those cases, even after a number of years, is that patients had excellent results and none of the side effects they had anticipated, such as facial droop or numbness or swallowing issues. I’ll keep people posted as to how my surgery goes.
Hey Ron,
I read about this somewhere, but they were severing the nerve through the throat instead, but apparently that’s only successful if the pain doesn’t radiate to the ear. Not sure at all, but I seem to be hearing more and more that the MVD isn’t too successful long term for us. So frustrating.
I just want to wish you the best of luck for the procedure, what date are you having it done? so we can keep you in our thoughts for things to all go well.
Much love to you
Gracie x x x
Hi Gracie. Thanks for your response. Actually you’re right, I do have pain in my ear as well as the throat. They seem to call that a “timpanic” response. So that’s why I’m having it severed almost at the root. I’m scheduled for November 19th, so only a couple of weeks to go. I will definitely keep everyone posted.
This is what I thought, and you are probably a great person to quiz about this. As you know I am due to get my tusks out soon, orally, for this very thing, but after reading an article in the singapore medical journal it basically says that the styloidectomy is fine if you have the neuralgia in your throat but not the tympanic region, and basically if you have ear pain, the tuskectomy is likely to be a bust, I’m waiting for my ENT to get back to me on it, do you have any insights on that, or am I just putting you on the spot hun? If I am sorry, I’m just really confused as to if it’s worth my while to do this op or not :o( anyhoo, that’s the questions been fired at you for the night.
Sorry to be a pest
Much love, and thanks, we’ll look forward to hearing all your updates
Gracie x x x
Grace Mackay said:
This is what I thought, and you are probably a great person to quiz about this. As you know I am due to get my tusks out soon, orally, for this very thing, but after reading an article in the singapore medical journal it basically says that the styloidectomy is fine if you have the neuralgia in your throat but not the tympanic region, and basically if you have ear pain, the tuskectomy is likely to be a bust, I'm waiting for my ENT to get back to me on it, do you have any insights on that, or am I just putting you on the spot hun? If I am sorry, I'm just really confused as to if it's worth my while to do this op or not :o( anyhoo, that's the questions been fired at you for the night.
Sorry to be a pest
Much love, and thanks, we'll look forward to hearing all your updates
Gracie x x x
Yes ron Hello My name is kathleen please keep us updated! Good luck and Blesssings!
Hi Gracie,
It makes sense that it would not have an impact on the ear pain. That’s a tough one. I have to say, I don’t regret getting mine removed because, on top of the pain, I had a very physiological, probing sensation that I’m sure was the styloid. I don’t know if it was you or somone else that posted an article about a correlation between removal of the styloid and narcolepsy but I find that interesting as quite a few people who have Eagles Syndrome have the experience of passing out when raising their arms or placing their head and neck in a certain position. I’ve read that it’s related to the styloid pressing on the carotid. There is also a correlation to heart irregularities. Based on that I started to lean toward removal of mine just as a prophylactic action for the long term, if nothing else.
Wouldn’t it be great if science got involved?
Ron
Grace Mackay said:
Hey Ron,
I read about this somewhere, but they were severing the nerve through the throat instead, but apparently that's only successful if the pain doesn't radiate to the ear. Not sure at all, but I seem to be hearing more and more that the MVD isn't too successful long term for us. So frustrating.
I just want to wish you the best of luck for the procedure, what date are you having it done? so we can keep you in our thoughts for things to all go well.
Much love to you
Gracie x x x
Thanks Kathleen,
Gotta love GPN support group. Nice to have people just understand where you’re at without a whole lot of explaining and, good God, convincing!
Take care.
Ron
kathleencord said:
Grace Mackay said:This is what I thought, and you are probably a great person to quiz about this. As you know I am due to get my tusks out soon, orally, for this very thing, but after reading an article in the singapore medical journal it basically says that the styloidectomy is fine if you have the neuralgia in your throat but not the tympanic region, and basically if you have ear pain, the tuskectomy is likely to be a bust, I'm waiting for my ENT to get back to me on it, do you have any insights on that, or am I just putting you on the spot hun? If I am sorry, I'm just really confused as to if it's worth my while to do this op or not :o( anyhoo, that's the questions been fired at you for the night.
Sorry to be a pest
Much love, and thanks, we'll look forward to hearing all your updates
Gracie x x x
Yes ron Hello My name is kathleen please keep us updated! Good luck and Blesssings!
It’s so good to be able to talk about the specifics of this to other glosso guys, the TN guys are great because they understand the type of pain, but they are so different in so many ways! x x x
In the world of neuralgia’s I think the TN folks are like the kids we used to make fun of in school. Not that I do that anymore.
Grace Mackay said:
It's so good to be able to talk about the specifics of this to other glosso guys, the TN guys are great because they understand the type of pain, but they are so different in so many ways! x x x
You’re probably right about the poking fun, it’s different when you know what they’re going through.
Science wont touch us guys, we’re not where the money is, not for research, not for pharmaceuticals, there are too few of us to conduct trials in any type of controlled environment anyway, or to warrant the time and effort, but maybe that’s just my cynicism coming through again.
The passing out thing is interesting, especially depending on how you move etc, but it’s all just the same nerve with the eagle’s glosso, the real scary thing is that I read an article about how eagles was listed as a cause of death, so I can not blame you for choosing to go for the prophylactic approach. Not in the slightest.x x x
I just like saying “prophylactic”.
Grace Mackay said:
You're probably right about the poking fun, it's different when you know what they're going through.
Science wont touch us guys, we're not where the money is, not for research, not for pharmaceuticals, there are too few of us to conduct trials in any type of controlled environment anyway, or to warrant the time and effort, but maybe that's just my cynicism coming through again.
The passing out thing is interesting, especially depending on how you move etc, but it's all just the same nerve with the eagle's glosso, the real scary thing is that I read an article about how eagles was listed as a cause of death, so I can not blame you for choosing to go for the prophylactic approach. Not in the slightest.x x x
i will pray for you! i am terrified of all these surgeries! i would love to hear specifics about what they do in the surgery and also what happens as far as recovery.
Grace Mackay said:
You're probably right about the poking fun, it's different when you know what they're going through.
Science wont touch us guys, we're not where the money is, not for research, not for pharmaceuticals, there are too few of us to conduct trials in any type of controlled environment anyway, or to warrant the time and effort, but maybe that's just my cynicism coming through again.
The passing out thing is interesting, especially depending on how you move etc, but it's all just the same nerve with the eagle's glosso, the real scary thing is that I read an article about how eagles was listed as a cause of death, so I can not blame you for choosing to go for the prophylactic approach. Not in the slightest.x x x
what about eagles causes death? the vagus nerve? is it affected with all GPN?
Eagles is definitely related to GPN, or vise versa. It’s usually a precursor to GPN. The most unusual thing I’ve hear about Eagles is that some people tend to pass out when they make certain movements, especially raising their arms above their head, I think that’s mostly people with bilateral Eagles. As for death, I’ve heard that Eagles and GPN are both related to heart irregularities that can be fatal. Not often, but I guess they’ve seen enough occurences that they’ve been able to draw a conclusion.
Hey the article about the death caused by eagles is linked here if you’re interested. it is listed as “probable” cause
http://www.livingwitheagle.org/forum/topics/scary-reading
x x x
Hey Ron,
Can I ask are you bilateral and having it done for both sides or just the one? Just curious hun, hope all is well th’day.
Gracie x x x
Some of my best friends are bilaterals but 100% hetero.
As for my styloids, I only had elongation on one side. I think all of this is worth considering as reasons for a tuskectomy.
Ron
Grace Mackay said:
Hey Ron,
Can I ask are you bilateral and having it done for both sides or just the one? Just curious hun, hope all is well th'day.
Gracie x x x
LMAO Ron, Love it!!!
Sorry a little foggy, what do you mean? Was curious as to if you’re getting both of your G nerves snipped or just the one side even with being a mono tusker ;o)
I’ve got great big matching long tusks, the left one is slightly longer, and that’s the side with far fewer eagles issues, and generally far fewer spazzy attacks, but I twang each way. ;o) Does that mean you’d be more inclined to get the secateurs to my elephant features, or the other way round.
I was totally convinced that it would be the be all end all cure, delighted that it wouldn;t come to the auld guddling around in the brain surgery, but that seems far from the case, and the literature says it’s likely to do sweet Fanny Adams since it;s in the ear.
I don’t quite understand that either, I am assuming that’s just because with this the pain is at the point of compression, but what about all this refered pain we hear about all the time? Like it being refered to the lung after surgeryand the likes, could it not send a spazz out back up the nerve to hit the ear rather than just down it, I thought nerves were dual carriageways, or is my understanding of it all wonkey.
Anyhoo, I’m really sorry this seems to be a total hijack of your thread and it really wasn’t meant to be, sorry boss.
Love Gracie x x x
Some of my best friends are bilaterals but 100% hetero.
As for my styloids, I only had elongation on one side. I think all of this is worth considering as reasons for a tuskectomy.
Ron
Ron K said:
Eagles is definitely related to GPN, or vise versa. It's usually a precursor to GPN. The most unusual thing I've hear about Eagles is that some people tend to pass out when they make certain movements, especially raising their arms above their head, I think that's mostly people with bilateral Eagles. As for death, I've heard that Eagles and GPN are both related to heart irregularities that can be fatal. Not often, but I guess they've seen enough occurences that they've been able to draw a conclusion.
hmm i thought that you had to get an MRI or something related to show whether or not you hav eagles which i did. another doctor told me about it even though i had read on it only because before my GPN meds i had fast heartbeat lots of dizziness and what not. so i told my neuro here and he did the MRI and i looked ok. isnt it that simple? i mean to look and see if you have it? just curious. is that the only time GPN is fatal? if you have eagles?
I’m just getting the one snipped.
As for the tuskectomies, I think what I was trying to say earlier that, once you have a GlossoPharyngeal nerve that is acting out, it will be triggered by multiple stimuli and one of those is the elongated styloid. So having them removed will not likely eliminated all your symptoms but it will be one less thing triggering them. Hard to tell how much actual relief that will provide. And with the degree to which you actually sense discomfort from the styloids and the other health risks they pose around the carotid, I tend to think that even if by some miracle you end your GPN, you’ll still be looking to do the tuskectomies at some point. It seems to be available now, so why wait until later.
One interesting thing I would say, is that in my case, I experience pain in throat and ear and while I only had the Eagles and GPN on one side, removing the styloid for some strange reason provided me one full year of total relief of all symptoms. I don’t know if you read this in one of my other posts but my neuro surgeon theorized that removal of the styloid was so traumatic to the GP nerve that it went inactive for a full year. So wrangling with the styloid in the lower area of the GP nerve traumatized the nerve up and down the full length of the nerve.
I would surmize from this that you could get some good benefits from tuskectomies and possibly relief of all your pains for at least some duration if not permanently. I don’t know what the percentages of probability would be for any of these scenarios but I don’t think it’s zero.
Lot’s to ponder.
I don’t want to cause myself tusk envy but do you know how long yours are. Mine was 4.7 centimeters on the affected side and 2.5 on the other. I still have it in a little jar of fermeldahyde. I guess it reminds me of when I used to have a big one.
Ron
Grace Mackay said:
LMAO Ron, Love it!!!
Sorry a little foggy, what do you mean? Was curious as to if you're getting both of your G nerves snipped or just the one side even with being a mono tusker ;o)
I've got great big matching long tusks, the left one is slightly longer, and that's the side with far fewer eagles issues, and generally far fewer spazzy attacks, but I twang each way. ;o) Does that mean you'd be more inclined to get the secateurs to my elephant features, or the other way round.
I was totally convinced that it would be the be all end all cure, delighted that it wouldn;t come to the auld guddling around in the brain surgery, but that seems far from the case, and the literature says it's likely to do sweet Fanny Adams since it;s in the ear.
I don't quite understand that either, I am assuming that's just because with this the pain is at the point of compression, but what about all this refered pain we hear about all the time? Like it being refered to the lung after surgeryand the likes, could it not send a spazz out back up the nerve to hit the ear rather than just down it, I thought nerves were dual carriageways, or is my understanding of it all wonkey.
Anyhoo, I'm really sorry this seems to be a total hijack of your thread and it really wasn't meant to be, sorry boss.
Love Gracie x x x
Some of my best friends are bilaterals but 100% hetero.
As for my styloids, I only had elongation on one side. I think all of this is worth considering as reasons for a tuskectomy.
Ron