Chrisa it was a CT that showed my eagle’s, and that was how they saw the elongation, I have some of the swallowing problems, but not the issues of passing out or any of that. As for the only instance where GPN is fatal I don’t know, where th GPN causes the cardiac issues too, I don’t know if it can be fatal, but I assume there is that risk. But again, I am just surmising.
Not something to think about :o( xxx
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 understand what you’re saying, and yeah, you are probably right in that respect, I guess that makes sense, it causes havoc with my swallowing anyway so I guess it’s maybe best to grab the bull by the horns and all!
I don’t know how long they are off hand. I do know that the left is longer than the right, but it must be the angle or something, because the right side is worse for the swallowing and more regular for the GPN attacks too.
Ha ha ha, oh the days of having a big one eh? Nothing like looking back to the good old horny days!
I tell you something I’d be wanting to take mine home too, I’ve threatened to make earrings from them already, but I think that scares people a little too much.
x x x
'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.
I’ve had an MRI but there are definitely cheaper ways to confirm Eagles. One way is to palpate the region with a finger, hopefully a gloved one that belongs to a doctor. One of my ENT’s actually guided my finger down and helped me feel the styloid on both sides and it was obvious that the one was longer. I almost brought up my stomach contents in the process. Injecting anasthetic at the region of the styloid or the Glossa with the result of pain relief is also a pretty clear indicator. I tend to think the MRI is to rule out more worrisome causes such as tumors or MS or whatever.
Chrisa Alberts said:
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've had an MRI but there are definitely cheaper ways to confirm Eagles. One way is to palpate the region with a finger, hopefully a gloved one that belongs to a doctor. One of my ENT's actually guided my finger down and helped me feel the styloid on both sides and it was obvious that the one was longer. I almost brought up my stomach contents in the process. Injecting anasthetic at the region of the styloid or the Glossa with the result of pain relief is also a pretty clear indicator. I tend to think the MRI is to rule out more worrisome causes such as tumors or MS or whatever.
Chrisa Alberts said:
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?
ok thanks i am learning so much information on this site it is so helpful!
I do have the glooso where I do pass out. It is when the pain is at its worst and it does not matter what position I am in. They tell me it is the irritated glosso nerve irritating the vagus nerve. I used to be able to give myself a shot of toradol and that would help, but since I had a gi bleed they do not want me to use toradol anymore. Not sure what I will do now when it happens.
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
Wow Angie, that sounds intense. I hope you can get some relief from that. I’ve had some bouts with intense pain that was in the “unbearable” range. Usually, when it’s like that, it’s like occasional muscle cramps. You know how, with a cramp, you try to stretch it out and move around to find a way to stop the pain and prevent it from getting worse, well that tends to be what I experience when pain is at it’s worst and there’s been a few times that I didn’t think it was going to stop and I’ve felt whoozie.
But the typical passing out thing I’ve read about Eagles Syndrome is that people with elongated styloid on both sides will pass out when they raise their arms because it press’s the styloid on the carotid arteries.
Hope things improve.
Ron
Angie Aube said:
I do have the glooso where I do pass out. It is when the pain is at its worst and it does not matter what position I am in. They tell me it is the irritated glosso nerve irritating the vagus nerve. I used to be able to give myself a shot of toradol and that would help, but since I had a gi bleed they do not want me to use toradol anymore. Not sure what I will do now when it happens.
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 did not have Eagles but the space between my 9th and 10th was subjected to pressure from a very large and nasty artery. The 9th cranial pressure caused the severe pain, the 10th cranial pressure caused my heart to have long pauses. That is why I had my surgery approved rather quickly. A cardiologist felt it was a matter of life or death.
In a way, I was lucky. When I came out of remission, it was only 10 weeks before they did my decompression. I had already decided that I had no quality of life if I had to continue on with the pain. I flunked on the medication. I didn’t even know that the GPN was causing irregularities with my heart. After decompression I was signed off by cardiology and my heart is just fine!
Wow Angie, that sounds intense. I hope you can get some relief from that. I've had some bouts with intense pain that was in the "unbearable" range. Usually, when it's like that, it's like occasional muscle cramps. You know how, with a cramp, you try to stretch it out and move around to find a way to stop the pain and prevent it from getting worse, well that tends to be what I experience when pain is at it's worst and there's been a few times that I didn't think it was going to stop and I've felt whoozie. But the typical passing out thing I've read about Eagles Syndrome is that people with elongated styloid on both sides will pass out when they raise their arms because it press's the styloid on the carotid arteries. Hope things improve. Ron
Angie Aube said:
I do have the glooso where I do pass out. It is when the pain is at its worst and it does not matter what position I am in. They tell me it is the irritated glosso nerve irritating the vagus nerve. I used to be able to give myself a shot of toradol and that would help, but since I had a gi bleed they do not want me to use toradol anymore. Not sure what I will do now when it happens.
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
Hi Angie and welcome to the group! I suppose I would change positions as Ron stated. Also, forceful coughing or bearing down. (Valsalva maneuver) If your vagus nerve is involved aren’t they recommending surgery to correct?