All possible and rare symptoms of eagle syndrome

General
1

HELLO EVERYONE!

I dont know if this was ever done...but I would love to do some research with your help ofcourse! In Oficial WEBMED page...there are 19 symptoms of ES! I have seen that many are not listed...so please, be so kind and help me: Can you describe in details in few sentences what are your symptoms? Also the odd-ones...like burning toungue! Also please dont forget to mention if only one side of styiloid is involved and the other is normal...do you have also so called problems on the other healthy side..like unexplained orofacial pain(from earacke,headacke, numbnes of face,tootacke,pressure on teeth...ect...This Will be of great help adn Will help a lot of people...ofcourse other things have to be ruled out...like nothing wrong with your brain 3T MR! Thank you all and God bless all of you! Jules,maybe we can then put together all the symptoms and make a document...but me I am useless for such things..PC only typing...no other things....xxx

2

I posted today this topic...a bit dissapointed...no replay.yet :( It is very important for me to know if any of you had also burning toungue or burning in the throath, pressure in teeth or tootacke, FACIAL PAIN like one of the symptoms of ES in genaral can be anywhere on the face or in the mouth! I am new member and struggled so much to make my self diagnose which was then aproved by 3D CT scan! If you have right styliod longer can you have the pain also all over the face or in mouth? Please be so kind and tell me :) thank you <3

3

One of the members a while back did a survey of symptoms- the results can be found if you go into discussions and search for it. My technical skills are pretty bad too, Zdravka! But some of the Ben's friends site have put together info for newbies, so I'm thinking that it would be good to do something like that for here with FAQ's on it.

With the symptoms some doctors are only aware of one or two- so if you don't have those, then they discount ES! I've never had the problems swallowing and feeling of a lump in my throat. I have/ had pain on one side of my face, lower jaw and teeth especially, pain moving tongue, earache, feeling of pressure in my ears, tinnitus, dizziness, pressure in temples, pain in my neck when I turn my head... The symptoms were worse on the left side, but I get them mildly on the right- styloids are elongated both sides. I have a sore/ burning tongue and very dry mouth, but think that's down to something else.

If you look at images for the Trigeminal nerve branches and Glossopharyngeal Nerve, it may be that the pain you have is caused by theses nerves being compressed. I'm sure the pain I have is TN, as it is helped with amitriptyline.

We have a lot of members in the US, so they're on a different time zone- you'll get more replies overnight for us Europeans!

1 Like
4

Here's the link to the survey results:

http://forum.livingwitheagle.org/forum/topics/results-eagle-syndrome-survey

5

Hi Zdravka,

Jules is right. With all the different time zones represented on this forum you'll get answers to this question over the next several weeks if not months!

I had bilateral ES & had external approach surgery last Nov. for the right side & last week for the left. My styloid processes were shortened & the stylohyoid ligaments removed. I'm on the mend now but am already free of many of the symptoms my ES was causing.

My history: Initial symptoms started w/ pain in my neck along the left side of my thyroid. As I have cysts in my thyroid, I thought the pain was from those. I get the cysts checked annually as a couple are calcified, so we want to make sure they don't become cancerous. Eventually, I found a hard lump under the left side of my jaw that was tender to the touch & caused the neck pain when I poked it. I thought it was a clogged salivary gland. My primary care doctor agreed that was the problem and prescribed antibiotics which I chose not to take as it didn't feel like an infection to me. A second doctor told me she thought I had something growing in my neck which had calcified (where my head attaches to my neck on the left front side). She sent me to an Ear, Nose & Throat doctor who listened to my symptoms, felt my hard bump and immediately diagnosed it as ES. He sent me for a CT scan to confirm it, and the CT scan showed I had elongated styloids & partially calcified S-H ligaments on both sides. The solution was surgery. Though the diagnosing doctor had done a few ES surgeries, I chose a doctor from this site's doctor list to do the surgery as he had far more experience doing ES surgeries. It has been a long road to recovery which will span more than a year in the end, but it has been worth it for the quality of life I have regained.

My symptoms: facial pain, neck pain, earaches, throat pain, tinnitus, intermittent hearing loss, TMJ, headaches both front & back, pressure inside my skull, pressure behind my eyes & in my ears, heart palpitations, blood pressure that dropped when I exercised instead of elevating as it should have, vertigo, swelling in the roof of my mouth along my tooth line, minor tongue paralysis (which I'm still hoping will disappear once I'm fully healed), jaw muscles that cramp when I sing (my jaw would sort of lock up), shortness of breath, swallowing problems (choking on food & water because my left styloid was sticking into my throat), aching collar bones & shoulders, sleeplessness due to pain...I'm sure there were other things but I never took the time to document them. My surgeon did not agree that all my symptoms were from the ES, so I am waiting till I'm fully healed to see what's gone & what remains. I am confident that the bulk of what I described did result from the pressure my styloids was putting on various nerves and vascular tissues.

I was fortunate to find competant doctors who diagnosed me soon after my symptoms started and were able to treat me in a timely fashion. I recognize that's not the case for many people on this site, so I pray for those less fortunate than I. I am so very thankful to God for leading me to this forum and for the information and support I have received from the people who visit here. It is a fantastic resource.

I hope you are able to find encouragement and answers and ultimately resolution for your ES symptoms. I will add you to my prayer list, Zdravka.

Consider yourself hugged in the meantime.

Isaiah 40:31

1 Like
6

Just had surgery last THursday and am on meds; yes - I have some typical symptoms - neck pain / spasms whn turning head, ear pain, jaw / temple pain, headache; ear / head pressure, etc.

Also have severe burning tongue, heavy saliva - although saliva has decreased since MVD / nerve section surgery back in April ; jaw and tongue tension pain when talking - highly debilitating. Throat/ jaw spasms , feel spasms in ear also, worse when lying down; feeling of need to swallow; - neck spasms , traps , scalene problems - also have TMJ type issues. Base of neck , scalenes etc feel damaged since styloidectomy last Thursday.

7

Forgot to add that on the left side, when I turned my head in certain ways, I could feel the styloid sort of stick in one position then pop back into place once I'd moved my head far enough around. It wasn't painful - just felt weird.

8

eddieh

Patience is something you will need to exercise for the next 6 months while you heal. This is not a quick surgery to recover from. I'm still recovering from some of the post op pain, numbness, etc. that resulted from my surgery last Nov. I am encouraged though as I see small changes in the right direction every week. "Baby steps" is what you need to expect in nerve and muscle recovery. Give your body time to heal and listen to what it tells you as you plan your days. I jumped back into physical activity too quickly after my first surgery, and it took me longer to get well. I had my second surgery last week on Mon. & am slowly starting to return to normal, but this time I know it will take several months (even up to a year), so I'm not being so hasty to "get up and go".

I'll pray for you to begin to see positive changes in how you're feeling ASAP!



eddieh said:

Just had surgery last THursday and am on meds; yes - I have some typical symptoms - neck pain / spasms whn turning head, ear pain, jaw / temple pain, headache; ear / head pressure, etc.

Also have severe burning tongue, heavy saliva - although saliva has decreased since MVD / nerve section surgery back in April ; jaw and tongue tension pain when talking - highly debilitating. Throat/ jaw spasms , feel spasms in ear also, worse when lying down; feeling of need to swallow; - neck spasms , traps , scalene problems - also have TMJ type issues. Base of neck , scalenes etc feel damaged since styloidectomy last Thursday.

9

Isaiah 40:31, thank you for the wonderful advice and prayers. They mean a lot. I will be praying for you and positive outcomes from your surgery and your path. God Bless, Eddie

10

Thank you, eddieh. God is good. He never gives us more than we can handle and He's always there for us when we feel the burden is too great!

eddieh said:

Isaiah 40:31, thank you for the wonderful advice and prayers. They mean a lot. I will be praying for you and positive outcomes from your surgery and your path. God Bless, Eddie
11

Thank you so so much and please forgive me to be so unpatient....you see I I am a member of Burning Mouth Syndrome..and there we are so active. With me all started about 5 years ago with slight burning of toungue and headacke and pain in neck...so I taught I had BMS! Since the symptoms had dramaticaly changed to worse...all sort of face pain...all, also palitaion of hearth,tired...just name it...I started to fill like foreighn body in my mouth-throath,ear pain,stubbing,like being undre wather,change of taste,pressure of titih,teetacke...vertigo,numbnes of toungue...so mayn,they had nothing to do with BMS. I was going from dr. to dr. for the past year..they all said it is in my head...just imagine...due to debilating pain I am rely very depressed and no medicine helps...I just knew-deep inside,that it is something wrong...just knew...like God would whisper in to my ear:keep searching,keep searching...and I did! I found finaly, actualy suspected,that it is ES! Nobady believed me...so I had to go by my self and did CT-3D scan...it shows very nicely...right styliod is 38,5mm long, left is 24,5 mm. I just dont know if I need to cut both od them...to not regrow! One thing for sure....I Will have to remove the right one! Trying to get in touch with Mr. Rogan who si from Uk...bur he did not replay yet,and also I cant get him on the phone...automatic secretary is all the time on-maybe he is in hollyday! Thank you for your kind words and God bless you-forever grateful Zdravka

Isaiah 40:31 said:

Hi Zdravka,

Jules is right. With all the different time zones represented on this forum you'll get answers to this question over the next several weeks if not months!

I had bilateral ES & had external approach surgery last Nov. for the right side & last week for the left. My styloid processes were shortened & the stylohyoid ligaments removed. I'm on the mend now but am already free of many of the symptoms my ES was causing.

My history: Initial symptoms started w/ pain in my neck along the left side of my thyroid. As I have cysts in my thyroid, I thought the pain was from those. I get the cysts checked annually as a couple are calcified, so we want to make sure they don't become cancerous. Eventually, I found a hard lump under the left side of my jaw that was tender to the touch & caused the neck pain when I poked it. I thought it was a clogged salivary gland. My primary care doctor agreed that was the problem and prescribed antibiotics which I chose not to take as it didn't feel like an infection to me. A second doctor told me she thought I had something growing in my neck which had calcified (where my head attaches to my neck on the left front side). She sent me to an Ear, Nose & Throat doctor who listened to my symptoms, felt my hard bump and immediately diagnosed it as ES. He sent me for a CT scan to confirm it, and the CT scan showed I had elongated styloids & partially calcified S-H ligaments on both sides. The solution was surgery. Though the diagnosing doctor had done a few ES surgeries, I chose a doctor from this site's doctor list to do the surgery as he had far more experience doing ES surgeries. It has been a long road to recovery which will span more than a year in the end, but it has been worth it for the quality of life I have regained.

My symptoms: facial pain, neck pain, earaches, throat pain, tinnitus, intermittent hearing loss, TMJ, headaches both front & back, pressure inside my skull, pressure behind my eyes & in my ears, heart palpitations, blood pressure that dropped when I exercised instead of elevating as it should have, vertigo, swelling in the roof of my mouth along my tooth line, minor tongue paralysis (which I'm still hoping will disappear once I'm fully healed), jaw muscles that cramp when I sing (my jaw would sort of lock up), shortness of breath, swallowing problems (choking on food & water because my left styloid was sticking into my throat), aching collar bones & shoulders, sleeplessness due to pain...I'm sure there were other things but I never took the time to document them. My surgeon did not agree that all my symptoms were from the ES, so I am waiting till I'm fully healed to see what's gone & what remains. I am confident that the bulk of what I described did result from the pressure my styloids was putting on various nerves and vascular tissues.

I was fortunate to find competant doctors who diagnosed me soon after my symptoms started and were able to treat me in a timely fashion. I recognize that's not the case for many people on this site, so I pray for those less fortunate than I. I am so very thankful to God for leading me to this forum and for the information and support I have received from the people who visit here. It is a fantastic resource.

I hope you are able to find encouragement and answers and ultimately resolution for your ES symptoms. I will add you to my prayer list, Zdravka.

Consider yourself hugged in the meantime.

Isaiah 40:31

12

Dear Eddieh..Thank you for your answer and valuable information. I did not understand one thing: you have now severe burning of otungue, or you had before an operation...like one of your symptoms..becauase I have also burning toungue...get worse when I talk or eat.....this is very valluable information ffor me! Thank you Eddie for you answer for this special qustion! hugs Zdravka

eddieh said:

Just had surgery last THursday and am on meds; yes - I have some typical symptoms - neck pain / spasms whn turning head, ear pain, jaw / temple pain, headache; ear / head pressure, etc.

Also have severe burning tongue, heavy saliva - although saliva has decreased since MVD / nerve section surgery back in April ; jaw and tongue tension pain when talking - highly debilitating. Throat/ jaw spasms , feel spasms in ear also, worse when lying down; feeling of need to swallow; - neck spasms , traps , scalene problems - also have TMJ type issues. Base of neck , scalenes etc feel damaged since styloidectomy last Thursday.

13

Thank you my dear Jules,thank you so so much!

Jules said:

One of the members a while back did a survey of symptoms- the results can be found if you go into discussions and search for it. My technical skills are pretty bad too, Zdravka! But some of the Ben's friends site have put together info for newbies, so I'm thinking that it would be good to do something like that for here with FAQ's on it.

With the symptoms some doctors are only aware of one or two- so if you don't have those, then they discount ES! I've never had the problems swallowing and feeling of a lump in my throat. I have/ had pain on one side of my face, lower jaw and teeth especially, pain moving tongue, earache, feeling of pressure in my ears, tinnitus, dizziness, pressure in temples, pain in my neck when I turn my head... The symptoms were worse on the left side, but I get them mildly on the right- styloids are elongated both sides. I have a sore/ burning tongue and very dry mouth, but think that's down to something else.

If you look at images for the Trigeminal nerve branches and Glossopharyngeal Nerve, it may be that the pain you have is caused by theses nerves being compressed. I'm sure the pain I have is TN, as it is helped with amitriptyline.

We have a lot of members in the US, so they're on a different time zone- you'll get more replies overnight for us Europeans!

14

Dear Jules, I did high resolution of MR of all the nerves and they did not find nothing compressing or so....I thing it is all due to ES! Thank you...God bless you and God bless you all-hugs Zdravka...please pray for me, that I Will get the surgeon who Will perform this surgery on me,that I Will get somehow all the necessery founds( my insurance Will not cover an operation abroad-even if it is so delicate).and here they dont have experience...you know Slovenija is small and lucking such specialysts....thank you

Zdravka said:

Thank you my dear Jules,thank you so so much!

Jules said:

One of the members a while back did a survey of symptoms- the results can be found if you go into discussions and search for it. My technical skills are pretty bad too, Zdravka! But some of the Ben's friends site have put together info for newbies, so I'm thinking that it would be good to do something like that for here with FAQ's on it.

With the symptoms some doctors are only aware of one or two- so if you don't have those, then they discount ES! I've never had the problems swallowing and feeling of a lump in my throat. I have/ had pain on one side of my face, lower jaw and teeth especially, pain moving tongue, earache, feeling of pressure in my ears, tinnitus, dizziness, pressure in temples, pain in my neck when I turn my head... The symptoms were worse on the left side, but I get them mildly on the right- styloids are elongated both sides. I have a sore/ burning tongue and very dry mouth, but think that's down to something else.

If you look at images for the Trigeminal nerve branches and Glossopharyngeal Nerve, it may be that the pain you have is caused by theses nerves being compressed. I'm sure the pain I have is TN, as it is helped with amitriptyline.

We have a lot of members in the US, so they're on a different time zone- you'll get more replies overnight for us Europeans!

15


Zdravka, Last year I had tension in the jaw and tongue - then a lifting injury - then two nights later it all came on suddenly - throat, tongue, jaw, spasms, heavy saliva, etc. Tongue was really hit hard. Then sort of evolved into more classic burning tongue . I've felt it all has to be related given the simultaneous onset, etc. I'm hopeful that this last surgery will help a lot. So far, tongue pain is less but could still be the meds. Thanks,
Zdravka said:

Dear Eddieh..Thank you for your answer and valuable information. I did not understand one thing: you have now severe burning of otungue, or you had before an operation...like one of your symptoms..becauase I have also burning toungue...get worse when I talk or eat.....this is very valluable information ffor me! Thank you Eddie for you answer for this special qustion! hugs Zdravka

eddieh said:

Just had surgery last THursday and am on meds; yes - I have some typical symptoms - neck pain / spasms whn turning head, ear pain, jaw / temple pain, headache; ear / head pressure, etc.

Also have severe burning tongue, heavy saliva - although saliva has decreased since MVD / nerve section surgery back in April ; jaw and tongue tension pain when talking - highly debilitating. Throat/ jaw spasms , feel spasms in ear also, worse when lying down; feeling of need to swallow; - neck spasms , traps , scalene problems - also have TMJ type issues. Base of neck , scalenes etc feel damaged since styloidectomy last Thursday.

16

My surgeon cut my left styloid off at my skull base but was only able to remove 2.54 cm from my right styloid as my hypoglossal nerve was wrapped around it, and he didn't want to damage my nerve. He also removed my stylohyoid ligaments & said he pulled the muscle away from the remaining part of my right styloid so it would have no base from which to continue growing. The ligaments provide a base for the styloids to grow as well as being a potential problem themselves. With everything gone now, I have no fear of regrowth and am looking forward to healing from my previous symptoms as I recover from my last surgery.

I will pray for you to be able to make contact with Mr. Rogan or someone else who can help you as soon as possible. It is so hard to live with constant pain. I am very sorry you are experiencing this.

Love,

Isaiah 40:31

Zdravka said:

Thank you so so much and please forgive me to be so unpatient....you see I I am a member of Burning Mouth Syndrome..and there we are so active. With me all started about 5 years ago with slight burning of toungue and headacke and pain in neck...so I taught I had BMS! Since the symptoms had dramaticaly changed to worse...all sort of face pain...all, also palitaion of hearth,tired...just name it...I started to fill like foreighn body in my mouth-throath,ear pain,stubbing,like being undre wather,change of taste,pressure of titih,teetacke...vertigo,numbnes of toungue...so mayn,they had nothing to do with BMS. I was going from dr. to dr. for the past year..they all said it is in my head...just imagine...due to debilating pain I am rely very depressed and no medicine helps...I just knew-deep inside,that it is something wrong...just knew...like God would whisper in to my ear:keep searching,keep searching...and I did! I found finaly, actualy suspected,that it is ES! Nobady believed me...so I had to go by my self and did CT-3D scan...it shows very nicely...right styliod is 38,5mm long, left is 24,5 mm. I just dont know if I need to cut both od them...to not regrow! One thing for sure....I Will have to remove the right one! Trying to get in touch with Mr. Rogan who si from Uk...bur he did not replay yet,and also I cant get him on the phone...automatic secretary is all the time on-maybe he is in hollyday! Thank you for your kind words and God bless you-forever grateful Zdravka

Isaiah 40:31 said:

Hi Zdravka,

Jules is right. With all the different time zones represented on this forum you'll get answers to this question over the next several weeks if not months!

I had bilateral ES & had external approach surgery last Nov. for the right side & last week for the left. My styloid processes were shortened & the stylohyoid ligaments removed. I'm on the mend now but am already free of many of the symptoms my ES was causing.

My history: Initial symptoms started w/ pain in my neck along the left side of my thyroid. As I have cysts in my thyroid, I thought the pain was from those. I get the cysts checked annually as a couple are calcified, so we want to make sure they don't become cancerous. Eventually, I found a hard lump under the left side of my jaw that was tender to the touch & caused the neck pain when I poked it. I thought it was a clogged salivary gland. My primary care doctor agreed that was the problem and prescribed antibiotics which I chose not to take as it didn't feel like an infection to me. A second doctor told me she thought I had something growing in my neck which had calcified (where my head attaches to my neck on the left front side). She sent me to an Ear, Nose & Throat doctor who listened to my symptoms, felt my hard bump and immediately diagnosed it as ES. He sent me for a CT scan to confirm it, and the CT scan showed I had elongated styloids & partially calcified S-H ligaments on both sides. The solution was surgery. Though the diagnosing doctor had done a few ES surgeries, I chose a doctor from this site's doctor list to do the surgery as he had far more experience doing ES surgeries. It has been a long road to recovery which will span more than a year in the end, but it has been worth it for the quality of life I have regained.

My symptoms: facial pain, neck pain, earaches, throat pain, tinnitus, intermittent hearing loss, TMJ, headaches both front & back, pressure inside my skull, pressure behind my eyes & in my ears, heart palpitations, blood pressure that dropped when I exercised instead of elevating as it should have, vertigo, swelling in the roof of my mouth along my tooth line, minor tongue paralysis (which I'm still hoping will disappear once I'm fully healed), jaw muscles that cramp when I sing (my jaw would sort of lock up), shortness of breath, swallowing problems (choking on food & water because my left styloid was sticking into my throat), aching collar bones & shoulders, sleeplessness due to pain...I'm sure there were other things but I never took the time to document them. My surgeon did not agree that all my symptoms were from the ES, so I am waiting till I'm fully healed to see what's gone & what remains. I am confident that the bulk of what I described did result from the pressure my styloids was putting on various nerves and vascular tissues.

I was fortunate to find competant doctors who diagnosed me soon after my symptoms started and were able to treat me in a timely fashion. I recognize that's not the case for many people on this site, so I pray for those less fortunate than I. I am so very thankful to God for leading me to this forum and for the information and support I have received from the people who visit here. It is a fantastic resource.

I hope you are able to find encouragement and answers and ultimately resolution for your ES symptoms. I will add you to my prayer list, Zdravka.

Consider yourself hugged in the meantime.

Isaiah 40:31

17

Dear Isaiah 40:31..you are so so nice...actualy all people here I meet are extremely pleasant...I ask my self so often....why rely good people have to suffer? Never understood that! I pray for you to get rely good recovery and that all symptoms Will slowly resolve :) You know I am so scarred,because of post operation time...I have to travel all by myself to Uk..then operation...then again back to my country...and to be very honest....it is sad to say so: people just mind their own business...they dont care or help others! I dont know how I Will cope with post operation period,since I am so scarred...here we dont have any facilities us such...to take care of a person after operation...my children are abroad and I dont want thme to get so stressed over my problems! My relatives it is so sad to say so...for 5 years where talking that I am crazy...when I was describing the pain,which just increase all the time...they where rely not nice to me...saying: all in your head...includin ETN, my primary doc and so many others! On the end I went to psyhitrist who was telling me the same...imagine my dear friend...healthy in head-they want me to make me stupid! True I did develop depression due to a sever pain all the time...but it is provne...cronical pain is acompanied by depression! My friends I had are very ignorant...so I dont rely have them anymore...my only friend is my dughter and that is! I wish I would have somebody so nice like you people are ,next to me for some time,because I get very easyli frightend...trauma from my childhood....so I am happy that God shoved me the way and help me to find out what is wrong with me...but I am rely scarred to be alone in the time of healing...also it is very bad,because mr.Rogan who Will do opeartion is so far away...it is different if you are over there,while the post operation exams are necessary....I have friends all over the place...from long time ago...but so sad...nobady from UK! This is what makes me extremily anxious and that is not good for somebody fro recovering! I wonder if we have any members who went tru oparation and have some kind of space, like little room, so I could stay there for my first check up after surgery...? I would pay...I cant aford to go to hotel...mission imposible :( My dear friend I rely wish you you do well and I know you Will...just to tell you that I am so grateful for kindnes you are showing me and to the rest thank you too......:) hugs and love sending you all the way....God bless you all <3

Isaiah 40:31 said:

My surgeon cut my left styloid off at my skull base but was only able to remove 2.54 cm from my right styloid as my hypoglossal nerve was wrapped around it, and he didn't want to damage my nerve. He also removed my stylohyoid ligaments & said he pulled the muscle away from the remaining part of my right styloid so it would have no base from which to continue growing. The ligaments provide a base for the styloids to grow as well as being a potential problem themselves. With everything gone now, I have no fear of regrowth and am looking forward to healing from my previous symptoms as I recover from my last surgery.

I will pray for you to be able to make contact with Mr. Rogan or someone else who can help you as soon as possible. It is so hard to live with constant pain. I am very sorry you are experiencing this.

Love,

Isaiah 40:31

Zdravka said:

Thank you so so much and please forgive me to be so unpatient....you see I I am a member of Burning Mouth Syndrome..and there we are so active. With me all started about 5 years ago with slight burning of toungue and headacke and pain in neck...so I taught I had BMS! Since the symptoms had dramaticaly changed to worse...all sort of face pain...all, also palitaion of hearth,tired...just name it...I started to fill like foreighn body in my mouth-throath,ear pain,stubbing,like being undre wather,change of taste,pressure of titih,teetacke...vertigo,numbnes of toungue...so mayn,they had nothing to do with BMS. I was going from dr. to dr. for the past year..they all said it is in my head...just imagine...due to debilating pain I am rely very depressed and no medicine helps...I just knew-deep inside,that it is something wrong...just knew...like God would whisper in to my ear:keep searching,keep searching...and I did! I found finaly, actualy suspected,that it is ES! Nobady believed me...so I had to go by my self and did CT-3D scan...it shows very nicely...right styliod is 38,5mm long, left is 24,5 mm. I just dont know if I need to cut both od them...to not regrow! One thing for sure....I Will have to remove the right one! Trying to get in touch with Mr. Rogan who si from Uk...bur he did not replay yet,and also I cant get him on the phone...automatic secretary is all the time on-maybe he is in hollyday! Thank you for your kind words and God bless you-forever grateful Zdravka

Isaiah 40:31 said:

Hi Zdravka,

Jules is right. With all the different time zones represented on this forum you'll get answers to this question over the next several weeks if not months!

I had bilateral ES & had external approach surgery last Nov. for the right side & last week for the left. My styloid processes were shortened & the stylohyoid ligaments removed. I'm on the mend now but am already free of many of the symptoms my ES was causing.

My history: Initial symptoms started w/ pain in my neck along the left side of my thyroid. As I have cysts in my thyroid, I thought the pain was from those. I get the cysts checked annually as a couple are calcified, so we want to make sure they don't become cancerous. Eventually, I found a hard lump under the left side of my jaw that was tender to the touch & caused the neck pain when I poked it. I thought it was a clogged salivary gland. My primary care doctor agreed that was the problem and prescribed antibiotics which I chose not to take as it didn't feel like an infection to me. A second doctor told me she thought I had something growing in my neck which had calcified (where my head attaches to my neck on the left front side). She sent me to an Ear, Nose & Throat doctor who listened to my symptoms, felt my hard bump and immediately diagnosed it as ES. He sent me for a CT scan to confirm it, and the CT scan showed I had elongated styloids & partially calcified S-H ligaments on both sides. The solution was surgery. Though the diagnosing doctor had done a few ES surgeries, I chose a doctor from this site's doctor list to do the surgery as he had far more experience doing ES surgeries. It has been a long road to recovery which will span more than a year in the end, but it has been worth it for the quality of life I have regained.

My symptoms: facial pain, neck pain, earaches, throat pain, tinnitus, intermittent hearing loss, TMJ, headaches both front & back, pressure inside my skull, pressure behind my eyes & in my ears, heart palpitations, blood pressure that dropped when I exercised instead of elevating as it should have, vertigo, swelling in the roof of my mouth along my tooth line, minor tongue paralysis (which I'm still hoping will disappear once I'm fully healed), jaw muscles that cramp when I sing (my jaw would sort of lock up), shortness of breath, swallowing problems (choking on food & water because my left styloid was sticking into my throat), aching collar bones & shoulders, sleeplessness due to pain...I'm sure there were other things but I never took the time to document them. My surgeon did not agree that all my symptoms were from the ES, so I am waiting till I'm fully healed to see what's gone & what remains. I am confident that the bulk of what I described did result from the pressure my styloids was putting on various nerves and vascular tissues.

I was fortunate to find competant doctors who diagnosed me soon after my symptoms started and were able to treat me in a timely fashion. I recognize that's not the case for many people on this site, so I pray for those less fortunate than I. I am so very thankful to God for leading me to this forum and for the information and support I have received from the people who visit here. It is a fantastic resource.

I hope you are able to find encouragement and answers and ultimately resolution for your ES symptoms. I will add you to my prayer list, Zdravka.

Consider yourself hugged in the meantime.

Isaiah 40:31

18

I know it's a scary prospect thinking of having surgery on your own, but most members end up having to travel quite a way for operations as there are so few surgeons to do the surgery. I was surprised that the surgery wasn't as bad as I thought; I took the painkillers they'd prescribed for only a couple of days and then didn't need them. I stayed in one night, a lot of the surgery is done as a day case. It's frustrating waiting, but see what Mr Corbridge says, and how much the operation is, whether he thinks it would help you etc. Then you could start to think further ahead. Have you got a friend to travel with you?

19

Thank you Jules…you are right…in many ways…but must know that I have so many allergies …palladium,nicel,so many medicines,so when I will come they will have to run some special tests for me to tolerate certain antybiotics they will give me ect…pain killers…not even one I can take…only one called lekadol which is not taking pain away…I get so sick…maybe this is because I did not take many medicine in my life! I have a friend but I will have to pay for ticket and acomodation…which will be to much…I have to have the money for surgery…no problems I will think of something…hugs Zdravka

20

I just hope he will say yes to operation…this is the most important xxx And I fill he will say YES…and that wil give me the strenght:-):-):-):-):slight_smile: