Helpful Eagle Syndrome surgery advice? I'M STRESSED!

General
1

Hi all,

First things first, i'd like to thank the few members who have already left me comments on my wall... It really made me feel welcome in this very difficult/stressful time (especially knowing how busy most of you probably are with Holiday preparations :-). This is a little long, but i'll cut to the chase in saying that I have been diagnosed with Bilateral Eagle Syndrome (which of course is extremely rare)... I won't tell my life story, but back in 2006 I had my tonsils removed due to chronic tonsillitis & I have continued to suffer with worsening sore throats ever since. I am a singer which only makes matters worse, & I feel like my career has been on "hold" for the longest (if not nearly ruined) because the constant sore throats (along with THICK mucous drainage that seems to rest right on my vocal cords) make it so difficult to be consistent. Some days are "ok", while others are close to unbearable where I basically would rather be dead than to deal with the pain i'm feeling (I just get so sick of it, especially after 7 years of dealing with it). The pain is usually strongest on the left side, but sometimes it hits both (oddly enough, the right side is the only side where I have issues with my tongue "clapping" against the pharyngeal arch at the back of my soft palate [I felt like this was from my soft palate dropping following my tonsils being removed, but one doctor strongly believes that the eagle syndrome is causing this]). In any event, after 7 years of suffering & having pointless post nasal/acid reflux/etcetcetc meds thrown at me from various ENT doctors over the years, now I finally know what needs to be done. With that being said, here are my concerns:

Where it stands right now (after a 1st appt, a 2nd appt & a 3rd appt, all w/ 3 different doctors), I have two ENT doctors who can do the procedure as of right now. The first doctor does it INTRAORALLY (which is what I would prefer) while the second one does it EXTRAORALLY... The second one came highly recommended & he is so kind, but i'm being honest in saying that I just don't want those big scars on each side of my neck, nor do I want to take a chance on muscle damage that could cause me to smile crooked/etc on either side (as he put it). I know, most people probably couldn't care less about either of the above, but when your goal is to make a living on stage/in front of cameras/etc, all of the above is a BIG deal (I don't want my smile compromised if I can avoid it, & [as a guy] I don't want to have to wear makeup on each side of my neck in order to cover up the scars each & every time I step out my front door)...

As mentioned, it seems like the condition is very rare, so i'm having quite a difficult time finding images of people who have had the surgery procedure done EXTRAORALLY (i'm not 100% decided, although I hope to make a decision very soon)... I did find a couple images via Google, but it seemed as though the images were taken shortly after surgery (or at least I would hope it was shortly after surgery, as the scarring really sticks out like a sore thumb). Out of the images I DID find, the scars just became a complete turnoff for me & as of right now/as a result, i'm leaning towards just going with the first doctor or some other doctor who will willingly/successfully do the procedure INTRAORALLY... As much as I want this though, my main concern is that I don't want the issue to remain &/or resurface a couple months/years after I have the procedure done.

In my case, both of my styloid process ligaments are nearing 7CM on each side, they are already making contact with the back of my throat & it seems to get worse every few months (which, in part, is why i'm so anxious about getting this taken care of as quickly as possible). I'm horrible at explaining this, but according to this latest doctor, he is saying that on each side the elongated styloid process ligaments are not 100% solid whereas one or more parts (on either side or both) are separated. As much as I want the INTRAORAL approach, I want to make sure that they get out everything they need to get out & I want to make sure that the ligaments don't grow back &/or cause more issues after the fact.

Aside from the scarring on both sides & risk of possibly obtaining a crooked smile (thanks to damaged neck muscles/etc), my other concern with the doctor doing the EXTRAORAL approach is the fact that he only wants to do one side at a time AND he wants me to wait 3 months before having the second one done... Not sure if that is 100% necessary or if he just wants to make more money by scheduling it as 2 separate surgeries, but for my own personal reasons (several reasons), I just don't want to wait that long & would rather have both sides done at once (or have both sides done within no longer than a month from each other).

So in summary, here's what I'm hoping some of you can help me with (hopefully soon, as i'm planning to schedule surgery by next Monday :-):

#1. Can anyone who has had the procedure done via the EXTRAORAL approach share their success & share some images from #1 shortly after your surgery AND #2 a few months afterwards (without makeup) so that I can see just how visible the scars are initially & a few months later (btw- i'm darker skinned, so if you are in the same boat that would be a HUGE plus). This would really help me to make up my mind, as all of the images i'm seeing show the scar sticking out like a sore thumb (aside from one were the young lady is beautiful but has makeup on & I can't tell just how visible the scars are). Once again, this is REALLY important to me.

#2. Can anyone in a situation similar to mine share their success with the INTRAORAL approach & can anyone advise me as to whether or not the INTRAORAL approach would have any possibly disadvantages in my case (with BOTH styloid processes ligaments A. being near 7CM, B. already making contact with the back of my throat, C. possibly segmented in 1 or more spots & D. calcified)? I would try to upload some screen shots of the images on this CD, but the CD isn't pulling up for some odd reason. If I can get it to pull up after reboot, i'll attach some later.

#3. Can anyone suggest ways to completely/quickly rule out glossopharyngeal neuralgia prior to me going through the eagle syndrome surgery??? I read up on Glossopharyngeal neuralgia the other week, it seems that this condition can cause eagle syndrome & I would hate to have this go undiagnosed after everything i've been through with the very condition it has been known to cause. Since day one, I've been trying to get to the ROOT of the problem & I just don't want to have anything else overlooked at this point.

#4. Lastly, can anyone share any thoughts on what I mentioned above &/or any last thoughts before I decide on this???

At this point, i'm just so frustrated with these doctors/etc, i'm emotionally drained from dealing with all of this for so long now, & i'm very anxious. I'm so tired of feeling like nobody understands the severity of what i'm going through (especially as a singer), but more than anything i'm so done with suffering & I just want this condition to be resolved quickly (preferably before the 1st week in February 2015 at the VERY latest) so that I can move on with my life & career. I'm in Phoenix, Arizona btw & if anyone inboxes me i'll gladly share the names of the doctors I have narrowed it down to so far & maybe we can meet/chat face to face sometime. Thanks in advance guys & really hope to hear from some of you! God bless

-eaglewontbeatme

2

Hi - whew - lots to answer in your post. I think that second doctor gave you good advice. External is usually considered to be better because they can see everything better and there is less risk of infection. There may be other things too that I'm forgetting right now. Having two surgeries done seperately is how they are all done. Some doctors won't do them before 6 months, so your 3-month time frame is pretty good. If you have them both done at the same time, your neck could swell on both sides and that could be pretty dangerous. I don't know of any doctor who does 2 surgeries at the same time.

You have really long styloids and based on my knowledge from having Eagles and reading on the forum for a couple years, you'd be better off with external surgery.

The scars aren't bad at all. People normally don't see my scars and if I'm talking about my surgeries I have to point the scars out otherwise they don't notice them. I'm really fair-skinned, so I don't know if a picture would be that helpful.

I've had one intra-oral surgery, which was revised later via an external surgery on my left side and two external surgeries on my right side.

I had glossopharyngeal neuralgia, but it was caused by my Eagles. I've never heard of the other way around. Mine went away with the two surgeries on my left side. It decreased maybe about 90% with the first surgery and the remaining 10% with the second surgery.

Doctors who have experience doing Eagles surgeries have a better track record of successes. I sound like a broken record on this point, but it's also important to get as much taken out as possible on the first surgery - otherwise you could be in for years of trouble later on (like me).

We have another singer in the forum, so I hope she sees this and can respond to your post. I'm pretty sure she started out with an intra-oral surgery, then had to have a revision surgery that was done externally. I know that she is doing really well and is singing solos in their productions.

Good luck!!!

3

Was going to wait until Monday (in consideration of Thanksgiving), but there are newer discussion posts with several replies & my post has received none so I'm bumping lol. This website was suggested by a close friend as a means of getting some helpful advice/answers from other eagle syndrome patients before having this procedure done... Really hope someone can help as I'm stuck until Monday (everyone is out of the office) but trying to have an appointment scheduled by then. Thanks!

4

Thanks so much heidemt!

From what it sounds like, maybe i'm better off just going the extraoral/external route.. REALLY not what I want of course, but at the same time I don't want the problem to resurface down the line. Have you had any issues with muscles in the neck &/or a crooked smile following the surgery? As mentioned, that was another concern with the external approach.

In regards to the amount of time I have to wait before having the second surgery, my issue (being honest) is that I likely will only have my medical insurance through February... I have Medicaid, I have a VERY low paying part-time job (musician) & where I am they often cut you off at renewal once they see that you have had the slightest bit of income (my renewal is in mid-February).... Mind you, the first doctors nurse is not the best a follow-up, & they took upwards of 2 weeks just to send the pre-authorization for the CT scan that ultimately diagnosed me with eagles... Add that to the 3 weeks I had to wait to see him & you can see I really tried to be proactive & get this resolved months ago... But now I'm at the 11th hour & desperately want this resolved (on both sides) while I still have medical insurance. Assuming I can even get in sometime in December, i'll have less than 3 months before I lose my insurance & the other styloid will still be in there. That (in addition to having to be out of commission vocally AND having to go through the surgery process two separate times) is why I'm really trying to avoid the 3 month wait, & I tried so hard to avoid having to deal with this last-minute! Frustrating, but i'm praying my way through & trying my best not to panic.

====


heidemt said:

Hi - whew - lots to answer in your post. I think that second doctor gave you good advice. External is usually considered to be better because they can see everything better and there is less risk of infection. There may be other things too that I'm forgetting right now. Having two surgeries done seperately is how they all done. Some doctors won't do them before 6 months, so your 3-month time frame is pretty good. If you have them both done at the same time, your neck could swell on both sides and that could be pretty dangerous. I don't know of any doctor who does 2 surgeries at the same time.

You have really long styloids and based on my knowledge from having Eagles and reading on the forum for a couple years, you'd be better off with external surgery.

The scars aren't bad at all. People normally don't see my scars and if I'm talking about my surgeries I have to point the scars out otherwise they don't notice them. I'm really fair-skinned, so I don't know if a picture would be that helpful.

I've had one intra-oral surgery, which was revised later via an external surgery on my left side and two external surgeries on my right side.

I had glossopharyngeal neuralgia, but it was caused by my Eagles. I've never heard of the other way around. Mine went away with the two surgeries on my left side. It decreased maybe about 90% with the first surgery and the remaining 10% with the second surgery.

Doctors who have experience doing Eagles surgeries have a better track record of successes. I sound like a broken record on this point, but it's also important to get as much taken out as possible on the first surgery - otherwise you could be in for years of trouble later on (like me).

We have another singer in the forum, so I hope she sees this and can respond to your post. I'm pretty sure she started out with an intra-oral surgery, then had to have a revision surgery that was done externally. I know that she is doing really well and is singing solos in their productions.

Good luck!!!

====

5

I haven't had any real issues with my neck or smile muscles. I think after one of the surgeries I kind of talked with a lisp for a couple weeks and my smile was a little affected, but not much, and it went away pretty quickly. I think just about everyone I can think of did fine after their surgeries. But there is one exception to that - I know of one person who had a very difficult time after their surgery, but that was one where the doctor missed the styloid completely. So I guess there are no guarantees, and you just never know, but the odds are in your favor. Especially if you have a good surgeon. Usually they monitor the nerves during the surgery, so that could be something you could make sure that they're going to do.

As far as the timing of the second surgery, maybe you could work something out with the doctor if the healing is going well from the first surgery.

6

Hi there. I am very new here too, but thought I would chime in about your glossopharyngeal neuralgia question bc recently a neurosurgeon helped me with the distinction bw GN and Eagle Syn. Just to give u some background, I was only recently diagnosed w Eagles but have had pain for 20 years. I was diagnosed w other things like TMJ then with glossopharyngeal neuralgia (GN) about 11 years ago. Even had craniotomy w microdecompression of cranial nerves including the vagus and glossopharyngeal (neurosurgeon moved arteries around that were thought to be compressing the cranial nerves) that really did nothing. Went to different neurosurgeon whom I have a lot of confidence in this past year who quickly recognized it was actually Eagles because head position increases the pain and found out my ligaments were calcified. I have increased pain with turning my head (or with keeping it turned like if sitting long periods ie. watching a performance or listening to a speaker with head turned or tilted for period of time)…then I can feel the pain increase. (It’s confusing bc it hurts all the time to begin with but it definitely increases and spreads w head turning). I can’t sleep on that side or I can feel it creep in too. He said that head position was the distinction that it was Eagle Syndrome…increased pain w cervical rotation/lateral flexion.
Basically, you can have the GN symptoms of nerve pain and inflammation caused by the mechanics of the long styloid/calcified ligament.
Given that your styloids are that long, it sounds like your GN symptoms are caused by the Eagle Syn…or at least treating the Eagles first would be most appropriate. I saw heidimt’s reply that her GN pain improved dramatically after surgery so that is very promising! Hope that my response helps even just a bit. Glad to hear you are on a good path to finding answers and for better health. Wishing you the best of luck with everything! :slight_smile:

Oh, and I wanted to ask you more about the thick drainage you have that sits in your throat…I also really struggle w that…wondered what the Drs have said about the cause of that and if you have found any treatments, even homeopathic, that have helped. Thanks!

7

Mine was removed intraorally and it was a longer recovery than I expected. Either way make sure you stay hydrated…it makes a huge difference. My friend had hers taken out the same way but her styloid broke off and they had to go behind her ear to get the rest. Find the Doctor you feel the most comfortable with doing your surgery. I still have some issues with my jaw and neck but it sounds like we all have other symptoms. My Doctor recommended myofascial release so I have now learned some exercises and manipulations to help with pain. Have you tried putting some Oragel or another numbing gel on a Q-tip and placing it at your most painful spots in your mouth? It helps me…I also use Biofreeze on my neck and shoulder. Anything that will help…we are all different but it might help you too. Praying for a good outcome for you. Happy Thanksgiving!

8

I am sorry I can’t comment about surgery, as I am just in the process of trying to find a surgeon that isn’t too far from home. Best of luck eaglewontbeat me. Your concerns are the same one I have about the 2 different approaches, but in the short time I have been on this excellent site, I have observed that the external approach seems preferred. I can make one comment about the drainage though…I have this and I initially everyone one…dentists, my ENT looked at me like I was nuts. They had no answers. We thought it was from my tooth extraction that was done, and antibiotics interestingly would help the pain, but not take the drainage away. My tooth extraction was probably done needlessly, in hindsight. They did not feel it was a salivary gland. I was really having pain talking and swallowing, so the only things I found that helped were gargling with as hot as I could stand salt and using Lemon Heads to suck on. I have to talk all day at work and the discomfort was pretty bad, and the Lemon Heads helped. For some reason, since I had a steroid injection, I don’t notice the thick drainage. The injection REALLY helped the sore throat and pain with tongue movement. Best wishes for answers this weekend to you Eagleswontbeatme, as you make a plan to get better! Happy Thanksgiving!

9

Who are your drs.?

10

I can tell you singing aggravates the ES like crazy. Before my surgery (after 10 years of suffering) I could barely even stand talking too much and singing made it so much worse. I can imagine your are ready for some relief! I have bilateral and only my left side has been partiallon youry removed by intraoral. (It will be one month on Monday)

I too wanted both sides done for insurance purposes but the surgeon wouldn’t even consider it. 3 days after surgery I was so glad and understood why. The swelling and proximity to your arteries is why. 3 months is great because mine won’t until at least 6 months. I am happy with my intra oral and symptoms have greatly decreased overall and I feel like a new person HOWEVER, I will be nervous forever wondering if it’s going to regrow and possibly have to do external one day anyway. A risk that the intraoral surgeries always have.

Go with the experienced surgeon, do external if you can. Also, your other condition is due to the Eagle’s. Your styloids seem long like mine and it’s pretty crazy all pain and symptoms they can cause. Your scars won’t be bad and they may even look tough :wink: Good luck and congrats on your soon to be new life!

11

Hi!

I agree with Jen about the GN- I have that but have had MRI and they concluded that there was no narrowing to affect that nerve in the base of skull, so it was consistent with ES and obviously the styloids are affecting the nerve. I've been prescribed amitryptiline for nerve pain which is really helping- Heidi knows other similar medications which might help- but this is only to manage the pain, not a cure- surgery would be the only cure.

Others who have had surgery have said they're glad only one was done at a time; obviously the risk of swelling to the throat, but also because of the discomfort initially.

Good luck and God Bless with your appts.,

Jules

12

Two weeks post op from external surgery really bad crooked smile and lots of muscle damage. Dr says this will pass as healing progresses. :confused:
T



heidemt said:

Hi - whew - lots to answer in your post. I think that second doctor gave you good advice. External is usually considered to be better because they can see everything better and there is less risk of infection. There may be other things too that I’m forgetting right now. Having two surgeries done seperately is how they are all done. Some doctors won’t do them before 6 months, so your 3-month time frame is pretty good. If you have them both done at the same time, your neck could swell on both sides and that could be pretty dangerous. I don’t know of any doctor who does 2 surgeries at the same time.

You have really long styloids and based on my knowledge from having Eagles and reading on the forum for a couple years, you’d be better off with external surgery.

The scars aren’t bad at all. People normally don’t see my scars and if I’m talking about my surgeries I have to point the scars out otherwise they don’t notice them. I’m really fair-skinned, so I don’t know if a picture would be that helpful.

I’ve had one intra-oral surgery, which was revised later via an external surgery on my left side and two external surgeries on my right side.

I had glossopharyngeal neuralgia, but it was caused by my Eagles. I’ve never heard of the other way around. Mine went away with the two surgeries on my left side. It decreased maybe about 90% with the first surgery and the remaining 10% with the second surgery.

Doctors who have experience doing Eagles surgeries have a better track record of successes. I sound like a broken record on this point, but it’s also important to get as much taken out as possible on the first surgery - otherwise you could be in for years of trouble later on (like me).

We have another singer in the forum, so I hope she sees this and can respond to your post. I’m pretty sure she started out with an intra-oral surgery, then had to have a revision surgery that was done externally. I know that she is doing really well and is singing solos in their productions.

Good luck!!!

13

Hey Jen!!! WOW I am so sorry to hear about what you have been through with the GN!!! Judging by the symptoms you have mentioned, i'm not too sure that I have GN... I guess time will tell & I will keep a vigilant eye, but whatever the case I truly hope things get better for you & anyone else who does have the condition... It sounds truly painful :-(

As far as the drainage, nobody has really hit the nail on the head as far as that... Upon mentioning those symptoms to the second "intraoral" ENT doctor, he advised that there are some meds than can help & what not (although I'm truly tired of meds & would rather have a permanent "fix" if you will). I will say this: The CT scan showed a nasal polyp/cyst in my upper nasopharynx (something that was diagnosed by another ent doctor YEARS ago but never shared with me until I got copies of my medical records a few months back)... I have strongly felt that this could be causing at least some my drainage issues (which get TOTALLY out of hand whenever I get sick), but one of the top local ent doctors who specializes in sinus surgery (thankfully an HONEST doctor) has strongly suggested that I not have the cyst/nasal polyp operated on as it is in the sinus cavity & could cause me to have severe sinus problems for the rest of my life. So I may never know, but my hope is that the drainage is caused in part or in full by either A. the styloids & associated irritation or B. general post nasal drip... I have taken Sudafed 24 hour on occasion & that has probably provided the most relief as far as the drainage, but the tradeoff is that it REALLY dries me out & has some other undisclosed side effects that I don't care for... One way or another, i'm hoping to get to the bottom of the drainage issue, & the best news would be that it was indeed caused by the styloids (which I of course won't know for sure until I can finally get the darn things taken out lol)...

==========

Jen said:

Hi there. I am very new here too, but thought I would chime in about your glossopharyngeal neuralgia question bc recently a neurosurgeon helped me with the distinction bw GN and Eagle Syn. Just to give u some background, I was only recently diagnosed w Eagles but have had pain for 20 years. I was diagnosed w other things like TMJ then with glossopharyngeal neuralgia (GN) about 11 years ago. Even had craniotomy w microdecompression of cranial nerves including the vagus and glossopharyngeal (neurosurgeon moved arteries around that were thought to be compressing the cranial nerves) that really did nothing. Went to different neurosurgeon whom I have a lot of confidence in this past year who quickly recognized it was actually Eagles because head position increases the pain and found out my ligaments were calcified. I have increased pain with turning my head (or with keeping it turned like if sitting long periods ie. watching a performance or listening to a speaker with head turned or tilted for period of time)...then I can feel the pain increase. (It's confusing bc it hurts all the time to begin with but it definitely increases and spreads w head turning). I can't sleep on that side or I can feel it creep in too. He said that head position was the distinction that it was Eagle Syndrome...increased pain w cervical rotation/lateral flexion.
Basically, you can have the GN symptoms of nerve pain and inflammation caused by the mechanics of the long styloid/calcified ligament.
Given that your styloids are that long, it sounds like your GN symptoms are caused by the Eagle Syn....or at least treating the Eagles first would be most appropriate. I saw heidimt's reply that her GN pain improved dramatically after surgery so that is very promising! Hope that my response helps even just a bit. Glad to hear you are on a good path to finding answers and for better health. Wishing you the best of luck with everything! :-)

Oh, and I wanted to ask you more about the thick drainage you have that sits in your throat...I also really struggle w that...wondered what the Drs have said about the cause of that and if you have found any treatments, even homeopathic, that have helped. Thanks!
14

Thank you so much for your reply! & thank you for your prayers!!! I have yet to place oragel back there... I've used Oragel on teeth before with success, but my pain is primarily down in the back left/right sides of my throat & I honestly have yet to reach anything back there aside from my fingers or any food/drink I consume. I guess I could try, but as of yet I haven't. I guess between the thought of swallowing (which would wash a good amount of it off) & the fact that the pain is being caused by what is on the other side, I don't know how effective it would be in my case. Maybe i'll give it a shot & see how it works out :-)

======

Happy1030 said:

Mine was removed intraorally and it was a longer recovery than I expected. Either way make sure you stay hydrated....it makes a huge difference. My friend had hers taken out the same way but her styloid broke off and they had to go behind her ear to get the rest. Find the Doctor you feel the most comfortable with doing your surgery. I still have some issues with my jaw and neck but it sounds like we all have other symptoms. My Doctor recommended myofascial release so I have now learned some exercises and manipulations to help with pain. Have you tried putting some Oragel or another numbing gel on a Q-tip and placing it at your most painful spots in your mouth? It helps me...I also use Biofreeze on my neck and shoulder. Anything that will help...we are all different but it might help you too. Praying for a good outcome for you. Happy Thanksgiving!
15

Kay: Thank you so much!!! I'm taking notes on EVERYTHING you mentioned.... I'm definitely leaning towards the extraoral route at this point (especially after what you mentioned), but at the same time if intraoral will get both of these surgeries behind me fastest, I may have to settle & hope for the best as i'm running out of time (I will explain why in a moment)... Just praying it all works out & I will keep everyone updated going forward!

Kay said:

I am sorry I can't comment about surgery, as I am just in the process of trying to find a surgeon that isn't too far from home. Best of luck eaglewontbeat me. Your concerns are the same one I have about the 2 different approaches, but in the short time I have been on this excellent site, I have observed that the external approach seems preferred. I can make one comment about the drainage though...I have this and I initially everyone one...dentists, my ENT looked at me like I was nuts. They had no answers. We thought it was from my tooth extraction that was done, and antibiotics interestingly would help the pain, but not take the drainage away. My tooth extraction was probably done needlessly, in hindsight. They did not feel it was a salivary gland. I was really having pain talking and swallowing, so the only things I found that helped were gargling with as hot as I could stand salt and using Lemon Heads to suck on. I have to talk all day at work and the discomfort was pretty bad, and the Lemon Heads helped. For some reason, since I had a steroid injection, I don't notice the thick drainage. The injection REALLY helped the sore throat and pain with tongue movement. Best wishes for answers this weekend to you Eagleswontbeatme, as you make a plan to get better! Happy Thanksgiving!
16

Hey Ladygw!!! I will absolutely share the names of all the doctors on here once the dust settles. I just don't feel comfortable doing it right now with so much still up in the air, but if you inbox me i'll shoot em to you directly :-)

=====



Ladygw said:

Who are your drs.?

17

Heather, thank you so much!!! I'll explain in detail in a moment, but in short I REALLY need both surgeries behind me before February (for reasons in addition to loss of insurance)... Worst case will have me getting one side done, then my insurance cuts off & I will only be able to get the other side done if I pay out of pocket (which I already know I can't afford)... That's the nightmare that I'm hoping does not come true... I did everything I could to avoid having all of this hit me at last minute, & despite my efforts, I was at the mercy of doctor's assistants/etc. & once all was said & done I was pushed back nearly 2 months or so (following the day on which I was diagnosed)... Its just a mess, but your post really encouraged me to try my best to make the right decision. I'll keep everyone updated. Thank you again :-)

======

Heather B said:

I can tell you singing aggravates the ES like crazy. Before my surgery (after 10 years of suffering) I could barely even stand talking too much and singing made it so much worse. I can imagine your are ready for some relief! I have bilateral and only my left side has been partiallon youry removed by intraoral. (It will be one month on Monday)

I too wanted both sides done for insurance purposes but the surgeon wouldn't even consider it. 3 days after surgery I was so glad and understood why. The swelling and proximity to your arteries is why. 3 months is great because mine won't until at least 6 months. I am happy with my intra oral and symptoms have greatly decreased overall and I feel like a new person HOWEVER, I will be nervous forever wondering if it's going to regrow and possibly have to do external one day anyway. A risk that the intraoral surgeries always have.

Go with the experienced surgeon, do external if you can. Also, your other condition is due to the Eagle's. Your styloids seem long like mine and it's pretty crazy all pain and symptoms they can cause. Your scars won't be bad and they may even look tough ;) Good luck and congrats on your soon to be new life!
18

Jules, thank you so much!!! Thankfully I'm not sure that I have GN as I'm not experiencing any of the frequent symptoms that seem to present themselves... Hopefully I'm right as it sounds like an absolute nightmare!!! IN my situation, I'm really against the clock & just need to get the surgeries behind me... I'm all over the place because part of me wants extraoral (due to the better success rate in terms of getting out ALL of the styloids), while the other part of me wants intraoral (due to no scaring & [more than anything] a presumably faster recovery time)... I just don't know how all of this will pan out in the end, but I will keep everyone updated... Thank you again!

Jules said:

Hi!

I agree with Jen about the GN- I have that but have had MRI and they concluded that there was no narrowing to affect that nerve in the base of skull, so it was consistent with ES and obviously the styloids are affecting the nerve. I've been prescribed amitryptiline for nerve pain which is really helping- Heidi knows other similar medications which might help- but this is only to manage the pain, not a cure- surgery would be the only cure.

Others who have had surgery have said they're glad only one was done at a time; obviously the risk of swelling to the throat, but also because of the discomfort initially.

Good luck and God Bless with your appts.,

Jules

19

Gia, I'm so sorry to hear that :-( That honestly causes me to reconsider the extraoral approach... This is just so frustrating to me... Both seem too have their pros/cons... I'm not sure where things will end up in my case, but I truly hope things improve for you... PLEASE keep me updated, I truly care & want to stay in contact with you!

====

Gia said:

Two weeks post op from external surgery really bad crooked smile and lots of muscle damage. Dr says this will pass as healing progresses. :/
T

heidemt said:

Hi - whew - lots to answer in your post. I think that second doctor gave you good advice. External is usually considered to be better because they can see everything better and there is less risk of infection. There may be other things too that I'm forgetting right now. Having two surgeries done seperately is how they are all done. Some doctors won't do them before 6 months, so your 3-month time frame is pretty good. If you have them both done at the same time, your neck could swell on both sides and that could be pretty dangerous. I don't know of any doctor who does 2 surgeries at the same time.

You have really long styloids and based on my knowledge from having Eagles and reading on the forum for a couple years, you'd be better off with external surgery.

The scars aren't bad at all. People normally don't see my scars and if I'm talking about my surgeries I have to point the scars out otherwise they don't notice them. I'm really fair-skinned, so I don't know if a picture would be that helpful.

I've had one intra-oral surgery, which was revised later via an external surgery on my left side and two external surgeries on my right side.

I had glossopharyngeal neuralgia, but it was caused by my Eagles. I've never heard of the other way around. Mine went away with the two surgeries on my left side. It decreased maybe about 90% with the first surgery and the remaining 10% with the second surgery.

Doctors who have experience doing Eagles surgeries have a better track record of successes. I sound like a broken record on this point, but it's also important to get as much taken out as possible on the first surgery - otherwise you could be in for years of trouble later on (like me).

We have another singer in the forum, so I hope she sees this and can respond to your post. I'm pretty sure she started out with an intra-oral surgery, then had to have a revision surgery that was done externally. I know that she is doing really well and is singing solos in their productions.

Good luck!!!

20

@heidemt @Jen @Happy1030 @Kay @Ladygw @Heather B @Jules @Gia @ Anyone else who might reply in the coming days/weeks:

Hi all,

Hope everyone had a WONDERFUL Thanksgiving! I just wanted to thank ALL of you who have taken the time to post on this thread... Dealing with all of this stuff has had me crazy busy this past week (hence my slow reply) but just hearing from other people who have somehow faced this condition makes me feel a little better & it lets me know i'm not alone in this battle (despite all of those times when it has felt like I have been battling this all by myself)... I wanted to give a quick update in regards to where things stand as of today:

On last week, I tried my absolute BEST to get an appointment scheduled with one final ENT doctor (as a backup), but a referral was required & by the time I was able to make it to my primary care physician I had just missed the referral coordinator (she left early on Wednesday & is out until 12/1/14)... Some would probably wonder why i'm seeking yet ANOTHER appointment with ANOTHER doctor when I already mentioned having two doctors who can do the procedure... Well, long story short, i'm unfortunately at the 11th hour (as mentioned) & at this point whoever can get me in the quickest is likely who I will go with (provided that they are experienced enough with this condition)... As mentioned, the doctor who only does the procedure EXTRAORALLY is one of the nicest I have met, yet he seems somewhat set in his ways (as far as #1 only doing it extraorally, #2 doing both sides at separate times AND #3 making you wait 3-6 months before getting the second side done)... Unless he decides to make an exception in my case, i'll be waiting who knows how many weeks to get the first surgery, then be stuck waiting another 3-6 months after that (which cannot happen)... As far as the first doctor (who does the procedure INTRAORALLY), I have no clue whether or not he will do both sides at once/endoscopically, nor do I have any clue as to how soon he can schedule me... So all things considered, its starting to looks like it will take a miracle for me to get BOTH sides done before February and the best part is that I absolutely MUST have both sides done before February... This is why I am now hoping to meet with this 3rd doctor just in case he can get me in sooner than the others (for BOTH surgeries)...

Why am I on such a time crunch to get BOTH surgeries done, you might ask??? Well, aside from the fact that I very well might not have my insurance past February (as mentioned), I also have two VERY important vocal auditions that month & I absolutely MUST have both of these surgeries done by then. I understand that there is still a healing process that very well might carry into (or even PAST) February, but I can't worry about that... I just want the surgeries done before then so that I can begin the healing process, have the best possible chance of recovering before the auditions & put this behind me once & for all... I can honestly say that my frustration cannot be put into words in regards to possibly being forced to wait so long to have both sides done... I have tried temporary "remedies" to no avail, BOTH sides bother me (not just one), & despite the fact that I have tried my absolute best to stress this as much as possible (speaking the only language I currently know how to speak), it just seems like none of these doctors will ever take this quite as seriously as I do...

As mentioned, my CAREER (as a singer) is on hold & if I miss these two auditions because i'm still dealing with either of these styloids, I honestly think I might just hang it up for good once my medical insurance is officially cut off. I have seriously passed up soo many opportunities as a vocalist over the last 7 years because of this condition & i'm just really running out of steam at this point. Some probably wonder why I don't just get a job with medical insurance benefits... Truth be told, decent jobs aren't hiring out here like that unless you have a bachelors (they won't even call you back after you apply), & even when they are hiring, you have to wait so long for medical to kick in & (in my case) history usually has the company shutting down/me getting laid off/etc before that moment arrives... So its like I either do this NOW or i'm screwed & as mentioned, i've been trying to get this resolved for a VERY long time (even though these particular ENT doctors are just meeting me).

So yea, hopefully that helps some of you to understand exactly what situation i'm in. It doesn't look good, but despite the fact that I try not to force my religion on others, I know God is able to work miracles in ANY situation... So if any believers can send some prayers up for me (for my patience & SUCCESS with the completion of this entire process, despite what it looks like), i'd GREATLY appreciate it. TOMORROWS GAMEPLAN: #1 Call the surgery schedulers for the other two ENT doctors to A. see how soon they can schedule me for the 1st surgery & B. see how soon they can have BOTH surgeries completed, #2 Get to my primary care physician ASAP for this next (& hopefully LAST) "backup" referral, #3 manually take the hardcopy referral over to this other ENT doctor (assuming it doesn't get to them immediately via fax) to see how soon I can get an appt with him (+how soon he can do BOTH surgeries) & #4 PRAY... Thanks again guys/Story developing....

-eaglewontbeatme