Help required please!

General
1

Hello to all and many thanks for all the informative and useful posts that I have read over the last few weeks.

I am posting this today, asking for help, from a select group of knowledgeable sufferers who I'm sure will be able to assist in my situation!
I will try to keep this as brief as is possible for you all, but I would most value your input and experiences in order to assist me in deciding whether I go through with my impending surgery on the 23/1/14.
I must apologise that I have intimated that I am unsure as yet whether it is right for me or not. When I read the severity of experiences encountered by others on this forum in respect of their pain and the impact upon their lives, I feel a little embarrassed posting my story to those who would probably love to be in the position of clarity that I seem to be.........i.e booked in for surgery on the 23/1/14. I can't imagine how it must be suffering with the severity of pain and symptoms that some of you have reported.
I suppose I need to clarify that I can seemingly 'almost' live with my pain and the impact that it creates upon my life. I tend to find a sharp stabbing pain in my submandibular gland, under my ear and the surrounding area. Turning my head to the right, or tucking my chin in and then turning to the right causes an audible pop/snap and pain, which then makes the area feel much freer and eases the pain. It tends to build up every few hours and is by far the worst with coughing, taking my chin down to my chest, in the morning, and notably in the very infrequent occurrence that I have maybe had a few too many drinks the night before and have unfortunately vomited.
18 months ago, I went to my GP (UK) and advised him that I needed to see an ENT.......he said I needed a TMJ specialist. Thankfully I advised him/assured that my symptoms were not suggestive of TMJ (I'm'm a medically allied professional and know what TMJ signs are). My ENT surgeon listened to what I said and despite not being able to recreate the problem on assessment, sent me for an isotope guided CT based upon my subjective signs. After much conjecture and disagreement between specialists, they diagnosed me with a calcified SH ligament/Eagle's syndrome.
My problem is that I currently do not seem to have clarity as to whether the surgery that is being offered is going to resolve my concern. The proposed procedure seems to be removal of the tonsil and access/exposure of the tip of the SP, then division of the calcified/ossified band, creating two separate pieces, rather than one long calcified band. Whilst I can relate to this reducing or removing the need for my continual self clicking of the tightness and thus reducing the pain, surely the fact that no or little removal of the elongated SP (as is being proposed) is going to leave an elongated SP to continue to compress structures and create pain?
I have tried to question my specialist but he is pretty dismissive of any questions as he can't answer them, as ''he has only seen two of these in his life, and both were over 15 years ago'' (his words). ''The separation of the band will stop the need for self manipulation and ease/resolve the pain''.
He sent me to a Neurologist with an interest in migraines as I had wondered if my classical migraine history had anything to do with any internal carotid occlusion or irritation...........they sent my images to a NeuroRadiologist who said my vascularisation of my brain seemed fine and no link was apparent/evident to my migraine history. I must state that I have avoided any classical migraine symptoms for over two years now, whilst my Eagle's symptoms have been at their worst.
I have been very interested to read about the additional issues experienced by fellow ES sufferer's............GERD (I was diagnosed with silent reflux 8 years ago), digestion problems, albeit fairly mild. Recent symptoms suggestive of POTS (though normal BP, Blood sugar, HR etc during intermittent episodes), I was also diagnosed with 'subclinical hypothyroidism' a few years ago........as yet keep getting regular checks and TSH levels are deemed normal.
I suppose I'm now severely torn between two decisions............to get it done or not? I'm very concerned about the post op pain, impact upon work and possibility of complications/infections and it simply 'not working'...............
I feel my pain levels aren't good, but tolerable. I do not take analgesics. However, could this surgery assist my other issues? My ENT looks blank and disinterested when I raise any questions about associated issues.
I'm really struggling to now think that he is skilled enough to sort my concern, or that he will actually remove the offending section of what could be causing my problem. I'm aware that it is so uncommon, I'm not going to find an eminent experienced surgeon in the corner of the UK in which i live. Yet I feel I need further info or support from those of you out there who may have had a similar presentation.
Ultimately, does division of the calcified ligament solve it, or does the SP need reducing? ? ? My surgeon seems to indicate all he will do is 'nick' or divide the structure, rather than excising anything. I feel it at least needs a couple of centimetres taken off.
I said I'd keep it brief.............really sorry, I've done the opposite!
Once again, thanks for a great forum and please help me by posting your thoughts as my situation doesn't seem to tally with most of yours!! I'd like to make the final call by the weekend, so anything you can help with would be brilliant.
Thank you
WhiteRose.
2

HI there.jusr read your dilema.please read my page just as a bit uf backround about my particular symptoms of es. I cant not coment on the way your surgeon is propossing to caryout this procedure, but if i where you i would want to get a second oppinion before the impending surgery. I saw surgeon in Berkshire where i live who perform abour three of these a year who i can recomend and also ent man i saw prior to .I be happy to give you details if you message me.

Kind regard Lilian

3

I agree with Lilian. It sounds like you are not confident in your physician and I a second opinion would be very helpful. It is so hard to find one that has heard of Eagles so I can understand your trepidation. At least this one has done the surgery before.......but it sounds like it has been a while. Good luck, I still have some jaw pain and fullness underneath my jaw and behind my ear but I do not have the pain of a bone pushing through my tonsil. I would have it again even though it was a harder recovery than I expected. Make sure you drink plenty of fluids! Keep yourself hydrated and take your pain medicine as ordered. It just makes you wonder what else our bodies are doing that we don't know about.

4

Hi, Whiterose,

I had the bones REMOVED on both sides and I can't tell you what a relief it was. I would totally do it again if I had to although, my surgeon assured me they will not grow back. I seem to be having a problem with symptoms associated with a vagus nerve problem and am currently searching for a good neurologist to diagnose me. The vagus nerve is located on both side of the neck right in the area where my bones were growing. They were each approximately 3 1/2 inches long. The right one grew into my mouth and was poking into the backside of my tongue. The left side grew inward and was poking into my throat and causing trouble with my swallowing. I believe after some research that the bones were rubbing into the vagus nerve. This nerve runs down the length of our bodies and controls all the major bodily functions. Heart, breathing, digestion and elimination. I am having too many symptoms along this nerve to think that all of my organs are falling apart! The common denominator seems to be this nerve.

I would find a surgeon that will REMOVE the bones. They may keep growing and do damage that will be irreparable. Stop them, now. Shortening them will just delay the need to ultimately remove them.

This is just my opinion but from all the posts on this forum I have been reading for the past two years, removal is the answer. When I joined this forum there were only 199 people. My drs all said this was an EXTREMELY RARE CONDITION. I just think it is underdiagnosed because doctors are a afraid of doing the surgery. My ENT TOLD me he was afraid to do the surgery but I was lucky that he found a head and neck cancer surgeon familiar with doing the delicate surgery needed to remove the bones. He had no fear and did a magnificent job. The recovery was approximately 2 weeks of a very sore throat for which I drank a lot of milk shakes!!!! I would say it was almost pleasurable! lol

hope this is helpful (I guess when it comes to this subject there is no brief explanation or answer!)

tiger

5

Is that Corbidge Lilian? his name was mentioned to me. I'm in UK too... i have not been diagnosed as such, ENT consultant wasn't very interested in the bone poking into my throat. lol

6

Hello Lillian. Many thanks for your reply. I suppose I've left it a little bit late to be trying to seek another opinion, but if I postpone the surgery I could! Problem is that it's partly to do with my job scenario at present which means the present time seems to be the best, though in reality, one's health come's first! I'll seek those details from you as I get more skilled at navigating the forum ;-)

Lilian said:

HI there.jusr read your dilema.please read my page just as a bit uf backround about my particular symptoms of es. I cant not coment on the way your surgeon is propossing to caryout this procedure, but if i where you i would want to get a second oppinion before the impending surgery. I saw surgeon in Berkshire where i live who perform abour three of these a year who i can recomend and also ent man i saw prior to .I be happy to give you details if you message me.

Kind regard Lilian

7

Hello Happy1030..........I think my trepidation is definitely related to my lack of confidence in my surgeon. I unfortuantley however come across many in my job, regardless of speciality, who don't seem to possess the communication skills that a patient wants. Very frustrating! I appreciate that he hasn't done it for a while as it so uncommon, but it seems that he hasn't really looked into the surgery much since we agreed I'd be listed for it.

Thanks for taking the time to post, much appreciated

WR

P.s very much agree with your last statment!

Happy1030 said:

I agree with Lilian. It sounds like you are not confident in your physician and I a second opinion would be very helpful. It is so hard to find one that has heard of Eagles so I can understand your trepidation. At least this one has done the surgery before.......but it sounds like it has been a while. Good luck, I still have some jaw pain and fullness underneath my jaw and behind my ear but I do not have the pain of a bone pushing through my tonsil. I would have it again even though it was a harder recovery than I expected. Make sure you drink plenty of fluids! Keep yourself hydrated and take your pain medicine as ordered. It just makes you wonder what else our bodies are doing that we don't know about.

8

Hello Tiger. Grateful for your time and effort in posting in response to my query. Sounds to me like you have suffered a great deal more than me with the pain. I think that my biggest interest is whether though as you suggest, the VN is being irritated as I do tend to find a multitude of strange symptoms that never really can be explained, can last for a few days, then disappear for often weeks at a time! I agree that a common denominator seems likely.............think I always put it down to my silent thyroid issues............suppose I could try thyroxine to see if that helps by process of elimination.

But yes, my logic says that if you leave two ends of a structure without either removing them or reducing them right down, they could either bind again, or just start elongating again.

I just don't really understand the division of the ligament proposal when I can't find any info on this being the surgery of choice...........

Thanks again.

WR

tiger said:

Hi, Whiterose,

I had the bones REMOVED on both sides and I can't tell you what a relief it was. I would totally do it again if I had to although, my surgeon assured me they will not grow back. I seem to be having a problem with symptoms associated with a vagus nerve problem and am currently searching for a good neurologist to diagnose me. The vagus nerve is located on both side of the neck right in the area where my bones were growing. They were each approximately 3 1/2 inches long. The right one grew into my mouth and was poking into the backside of my tongue. The left side grew inward and was poking into my throat and causing trouble with my swallowing. I believe after some research that the bones were rubbing into the vagus nerve. This nerve runs down the length of our bodies and controls all the major bodily functions. Heart, breathing, digestion and elimination. I am having too many symptoms along this nerve to think that all of my organs are falling apart! The common denominator seems to be this nerve.

I would find a surgeon that will REMOVE the bones. They may keep growing and do damage that will be irreparable. Stop them, now. Shortening them will just delay the need to ultimately remove them.

This is just my opinion but from all the posts on this forum I have been reading for the past two years, removal is the answer. When I joined this forum there were only 199 people. My drs all said this was an EXTREMELY RARE CONDITION. I just think it is underdiagnosed because doctors are a afraid of doing the surgery. My ENT TOLD me he was afraid to do the surgery but I was lucky that he found a head and neck cancer surgeon familiar with doing the delicate surgery needed to remove the bones. He had no fear and did a magnificent job. The recovery was approximately 2 weeks of a very sore throat for which I drank a lot of milk shakes!!!! I would say it was almost pleasurable! lol

hope this is helpful (I guess when it comes to this subject there is no brief explanation or answer!)

tiger

9

Hello GP, much appreciate friendly reminder...........probably wrong of me to use the phrase 'POTS type symptoms'. You either have it or you don't I suppose! Found your post on it very interesting. Much appreciate the best wishes. I'll be sure to update with my constant deliberation on whether to have it done on Thursday or not

Thanks, WR
Glitter Paws said:

Friendly reminder: POTS is when your heart rate increases greater than 30bpm when you go from sitting to a standing position; it is immediate and every time you go from sit/lay to standing. BP can drop out or stay the same when you stand up. Inappropriate sinus tachycardia is when your heart rate increases suddenly regardless if you went from sitting/lying down to standing. A POTS patient will never have a high heart rate when they've been lying down. :-) You have your plate SO full with eagles, migraines, GERD, etc....you poor thing!!! Just wanted to help clear up "POTS symptoms" so your doc can help you with what you need. I sure hope you feel better soon!! Daily pain is aweful!!! Hopefully I took away one lil question. :-) Hugs to you darlin'!!!
10

Great posts. I am copying many on this website so I can share them with my dr. I can't remember it all and my handwriting has gone to pot. Plus my throat hurts if I tilt my head much.

11

Hi Smithy,

Yes it is Mr Rogan Corbridge , you can look him up, works from various hospitals in Reading area, also my ent specialist Mr Herdman who i saw to start with realised there was somethig going on when he felt arond my neck and i vinced in pain.
Regards Lilian
Smithy said:

Is that Corbidge Lilian? his name was mentioned to me. I'm in UK too... i have not been diagnosed as such, ENT consultant wasn't very interested in the bone poking into my throat. lol

12

Welcome to the Group!! I had NO life for the past 6 years. I suffered with POTS, excrutiating pain in the styloid region, neck, shoulder, chest, axillary, arm. I had multiple vague symptoms in other areas of my body that I have noticed has decreased since having ES surgery on 11/25/13. If I could be cut in half from head to toe, my left half side (surgical) side feels awesome but the right styloid is still there and the right side of body gets pissed with the wrong head position. Best advice is do your homework to find the right surgeon for you. I flew out of my state and very thankful for my surgeon. There is a Doctors List icon on the website.

13

been there, done that

if they are going in, they may as well take the things out, all of it, all the way up to the base of the skull. you don't need them for anything and all they do is cause problems

wasting your time and money if they don't. (not to mention the pain of recovery etc)

you will be surprised at how many things get better with them out

if they only do parts, they will have to go back in some time in the future and do the rest.

the only thing gained, for you, nothing, for them, a couple more payments made on their house and/or their car

if they don't want to take them out, you are wasting your time, get another doctor. you

14

Evening Trooper, thanks for your post, appreciate hearing about someone who may have had what is proposed for me. Been trying to get hold of the surgeon for 4 days now to ask why he isn't taking it out as you advise. Its what I guessed was needed.............but he still hasn't replied so far...........will keep trying. But I just suspect that he may not be all that keen to do it...........new car or not ;-) Cheers WR

trooper dude said:

been there, done that

if they are going in, they may as well take the things out, all of it, all the way up to the base of the skull. you don't need them for anything and all they do is cause problems

wasting your time and money if they don't. (not to mention the pain of recovery etc)

you will be surprised at how many things get better with them out

if they only do parts, they will have to go back in some time in the future and do the rest.

the only thing gained, for you, nothing, for them, a couple more payments made on their house and/or their car

if they don't want to take them out, you are wasting your time, get another doctor. you

15



WhiteRose said:

Evening Trooper, thanks for your post, appreciate hearing about someone who may have had what is proposed for me. Been trying to get hold of the surgeon for 4 days now to ask why he isn't taking it out as you advise. Its what I guessed was needed.............but he still hasn't replied so far...........will keep trying. But I just suspect that he may not be all that keen to do it...........new car or not ;-) Cheers WR

trooper dude said:

been there, done that

if they are going in, they may as well take the things out, all of it, all the way up to the base of the skull. you don't need them for anything and all they do is cause problems

wasting your time and money if they don't. (not to mention the pain of recovery etc)

you will be surprised at how many things get better with them out

if they only do parts, they will have to go back in some time in the future and do the rest.

the only thing gained, for you, nothing, for them, a couple more payments made on their house and/or their car

if they don't want to take them out, you are wasting your time, get another doctor. you

Trooper: YOU ARE ABSOLUTELY RIGHT!!!! Couldn't have said it better myself. The bones will just continue to grow. they need to be taken totally out.

~~~ Tiger

16

if they are going in, logic would say to do the entire job while there, kind of like going in to take out someones appendix and leaving half of it in place to cause trouble later..

as for the types of surgeries, I got lucky and had doctor cognetti at Jefferson hospital in philly.

he and his team were great. small cut in the middle of the throat, in the skin crease, they did all the work from there. it has now been about 7 months since the second, (one right side, one left side) it is unreal how many things removing those things fixed. a lot of stuff the doctors (even cognetti) said could not be related. and you can barely see the scars.

doc "C" said he wants to keep up to date on what is getting better so he can add things to his data base of symptoms

right now, the only negative side effect is the area around the scar on the left side, it is still numb. feel a bit strange, hard to shave around that side, but well worth it in the big picture.



tiger said:



WhiteRose said:

Evening Trooper, thanks for your post, appreciate hearing about someone who may have had what is proposed for me. Been trying to get hold of the surgeon for 4 days now to ask why he isn't taking it out as you advise. Its what I guessed was needed.............but he still hasn't replied so far...........will keep trying. But I just suspect that he may not be all that keen to do it...........new car or not ;-) Cheers WR

trooper dude said:

been there, done that

if they are going in, they may as well take the things out, all of it, all the way up to the base of the skull. you don't need them for anything and all they do is cause problems

wasting your time and money if they don't. (not to mention the pain of recovery etc)

you will be surprised at how many things get better with them out

if they only do parts, they will have to go back in some time in the future and do the rest.

the only thing gained, for you, nothing, for them, a couple more payments made on their house and/or their car

if they don't want to take them out, you are wasting your time, get another doctor. you

Trooper: YOU ARE ABSOLUTELY RIGHT!!!! Couldn't have said it better myself. The bones will just continue to grow. they need to be taken totally out.

~~~ Tiger

17

tiger,

the bones continue to grow and making car payments thing is where I was at with the doctor I was seeing in St Louis

he kept saying come back in a month. then it was come back in 6 months to see if there was any improvements if left alone. the symptoms were only there since 1999, the styloids were almost 7 cm long and both had the juggler shut down (50% right and 75% left) headache all the time, eye pain, ear pain, face pain, teeth pain, blurred vision, move my head the wrong way and black out.

and he wanted to keep waiting and piling up office visits.

if they dontt want to do the work, find someone that does

trooper dude said:

if they are going in, logic would say to do the entire job while there, kind of like going in to take out someones appendix and leaving half of it in place to cause trouble later..

as for the types of surgeries, I got lucky and had doctor cognetti at Jefferson hospital in philly.

he and his team were great. small cut in the middle of the throat, in the skin crease, they did all the work from there. it has now been about 7 months since the second, (one right side, one left side) it is unreal how many things removing those things fixed. a lot of stuff the doctors (even cognetti) said could not be related. and you can barely see the scars.

doc "C" said he wants to keep up to date on what is getting better so he can add things to his data base of symptoms

right now, the only negative side effect is the area around the scar on the left side, it is still numb. feel a bit strange, hard to shave around that side, but well worth it in the big picture.



tiger said:



WhiteRose said:

Evening Trooper, thanks for your post, appreciate hearing about someone who may have had what is proposed for me. Been trying to get hold of the surgeon for 4 days now to ask why he isn't taking it out as you advise. Its what I guessed was needed.............but he still hasn't replied so far...........will keep trying. But I just suspect that he may not be all that keen to do it...........new car or not ;-) Cheers WR

trooper dude said:

been there, done that

if they are going in, they may as well take the things out, all of it, all the way up to the base of the skull. you don't need them for anything and all they do is cause problems

wasting your time and money if they don't. (not to mention the pain of recovery etc)

you will be surprised at how many things get better with them out

if they only do parts, they will have to go back in some time in the future and do the rest.

the only thing gained, for you, nothing, for them, a couple more payments made on their house and/or their car

if they don't want to take them out, you are wasting your time, get another doctor. you

Trooper: YOU ARE ABSOLUTELY RIGHT!!!! Couldn't have said it better myself. The bones will just continue to grow. they need to be taken totally out.

~~~ Tiger

18

Thanks for the further updates Trooper and Tiger.........in now way do I seem to remotely suffer with the severity and ntensity of my symptoms when compared to others. I can live with the pain intesnity and i'm so used to it now, its just normal for me to have to press my SM gland and seemingly click the calcified part to relase the pain, then do it again a few minutues later! However its the other offshoot problems that I seem to suffer with and have read about on here that make me keen to have it done. It is definately not a decision based on pain levels, more on the other issues.......GERD, migraines, other wiuerd symptoms that from reading here, seem as if they may go with surgery.

P.S I'm proposed for the intra-oral approach as opposed to your extra-oral procedure........

trooper dude said:

tiger,

the bones continue to grow and making car payments thing is where I was at with the doctor I was seeing in St Louis

he kept saying come back in a month. then it was come back in 6 months to see if there was any improvements if left alone. the symptoms were only there since 1999, the styloids were almost 7 cm long and both had the juggler shut down (50% right and 75% left) headache all the time, eye pain, ear pain, face pain, teeth pain, blurred vision, move my head the wrong way and black out.

and he wanted to keep waiting and piling up office visits.

if they dontt want to do the work, find someone that does

trooper dude said:

if they are going in, logic would say to do the entire job while there, kind of like going in to take out someones appendix and leaving half of it in place to cause trouble later..

as for the types of surgeries, I got lucky and had doctor cognetti at Jefferson hospital in philly.

he and his team were great. small cut in the middle of the throat, in the skin crease, they did all the work from there. it has now been about 7 months since the second, (one right side, one left side) it is unreal how many things removing those things fixed. a lot of stuff the doctors (even cognetti) said could not be related. and you can barely see the scars.

doc "C" said he wants to keep up to date on what is getting better so he can add things to his data base of symptoms

right now, the only negative side effect is the area around the scar on the left side, it is still numb. feel a bit strange, hard to shave around that side, but well worth it in the big picture.



tiger said:



WhiteRose said:

Evening Trooper, thanks for your post, appreciate hearing about someone who may have had what is proposed for me. Been trying to get hold of the surgeon for 4 days now to ask why he isn't taking it out as you advise. Its what I guessed was needed.............but he still hasn't replied so far...........will keep trying. But I just suspect that he may not be all that keen to do it...........new car or not ;-) Cheers WR

trooper dude said:

been there, done that

if they are going in, they may as well take the things out, all of it, all the way up to the base of the skull. you don't need them for anything and all they do is cause problems

wasting your time and money if they don't. (not to mention the pain of recovery etc)

you will be surprised at how many things get better with them out

if they only do parts, they will have to go back in some time in the future and do the rest.

the only thing gained, for you, nothing, for them, a couple more payments made on their house and/or their car

if they don't want to take them out, you are wasting your time, get another doctor. you

Trooper: YOU ARE ABSOLUTELY RIGHT!!!! Couldn't have said it better myself. The bones will just continue to grow. they need to be taken totally out.

~~~ Tiger

19

Whiterose,

while the pain may not be hard to deal with, the bones are doing damage to nerves and arteries in your neck. That damage may be irreparable. Depending on which direction and how they are growing you could end up with a stroke! I have seen MRI’s that showed the bones growing around the carotid artery. Try to find SURGEON that will take them out. Head and neck surgeon confident and experienced with removing tumors from the throat and neck. My surgery was intraoral and was a breeze compared to living with the
bones. It was scary but i trusted my dr’s skill.can give you his name, he is in New Haven, CT

``Tiger