I’ve got a disc problem, so still have some neck trouble from that, it’s not easy always to tell what causes what… the right side which was not as bad is completely better other than the numbness- that horrible deep pain I got when turning my head is all better. I have the odd problem with the left still- but then any surgery can leave a bit of scar tissue (internal or external) which can still give discomfort, but the bad pain is gone. The vascular issues were the worst for me, I’m so relieved that’s virtually all gone. I don’t think the left side jugular vein has returned quite to normal after being so squashed, but I’m 99% better!
I am so happy for you and to hear this great feedback. I guess I’ll know pretty soon which of my symptoms are do to ES and which are not. It is weird to me that so many of us feel we have symptoms that [in our mind] clearly linked to ES, yet ES Dr.s still say that there is no evidence of them being related.
seamom,
I tTOTALLY second what you said regarding ES doctors not acknowledging related symptoms!
Seamom you mentioned you had the bone coming through your tonsil area just like me. Was that removed externally? Your scar looks very low down your neck and i was thinking to get at the bone behind my tonsil would they not cut up nearer the tonsil? How did he explain it to you? I really dont want intraoral surgery.
The external cut in the neck gives the surgeon full access to the styloid, ligments & hyoid bone & even the place on the skull where the styloids attach. My styloids could both be felt in my throat & one even behind my tongue. Dr. Samji was also my surgeon so my surgeries were external, & my incisions were both in my mid-neck. I must say I don’t fully understand how they access through the neck what seems to be much deeper into our throats but they do. There are videos on Youtube of intraoral ES surgeries but none of external surgeries. I imagine this is because the external surgeries cause a lot more bleeding & probably look much scarier than the internal ones.
Maybe seamom has further insight into your question.
Dr Samji goes through the neck externally then travels the the S-muscle to the top to avoid the nerves and vascular system. This is a general explanation.
Doctors will tell you how they approach the surgery and where the will cut you. I happened to ask my doctors about whether they cut muscles
Thank you Isaiah the only problem is trying to convince the bone is there in my tonsil even my surgeon who is willing to do surgery couldnt feel the bone and it doesnt show on the scan. Because my ligaments are so calcified both sides he thinks thats the main problem. Im trying at the moment to convert my scan to 3d but having no luck. The place where i got my scan wont do it. I think ill have to go back to my surgeon and ask him to try feel it again but these people dont like being told what to do. Hes the only one in Ireland that can help me. My scan doesnt say anything about my styloid bones it says temporal bones normal. Its impossible to communicate with a radiologist here everything is done through the secretary and then they just dont call back. I havent slept in 4 days solid now its just one big mess and im afraid of this really loud tinnitus and pressure in my head its getting do bad. Seamom how long did you go with the bones in your throat and did they grow any longer while you were waiting? I feel like im choking on mine even though its in behind my tonsil.
hi finally my husband made the 3d of my scan! They are clearly elongated my problems are more on the shorter side left. Ive looked at lots of different angles and still cant see the bone behind my left tonsil so im worried that my symptoms are still not showing on the scan. And how can i tell the difference between the styloid bone and ligaments on this scan? I know your not doctors on here sorry but any help would be great cause im no good with this.
Also which one is the hyoid bone? Is it the black and white one on top or one of the white ones?
Like you say, we’re not doctors so only guessing too- the hyoid bone is the horseshoe shaped bone just under the 55.6mm label, so you can see the whole ligament from the hyoid to the styloid process is one long calcification. The other side is nearly calcified all the way along too. I don’t think taking a few mm’s off would make that much difference to your symptoms!!
As for what you can feel behind your tonsil, you can’t tell exactly from the CT. But the left side (right on the pic) does look quite wide at the bottom. Seeing the measurement that’s been done on the right side, you can see that they’ve included the whole styloid process and the ligament as it’s calcified.
It would be interesting to take a copy of this with you to see the ENT again and ask him about it.
So glad your husband was able to help you w/ your scan. It looks like your left styloid, even though it’s shorter, sort of curves in & maybe toward the back a bit (Remember…“I’m not a doctor”…). That’s just my opinion. I absolutely believe what you’re feeling by your tonsil is the styloid. As Jules said, you can’t really tell by the picture. All of us on this site have/had styloids that looked similar to your left one on our CT scans & almost everyone on this site will tell you they could feel the bone(s) in their throats. I don’t have my tonsils but Dr. Samji could feel my styloids in my throat w/ his finger even though they looked on my scan like they grew more straight down. Just because your doctor can’t feel the styloid bone in your throat doesn’t mean it’s not there. Your right side is impressive w/ the fully calcified ligament joining the styloid & making one long connected bone between your skull & hyoid bone. I’m surprised your symptoms are worse on the left but again, that may be because the left side is more mobile & pokes on muscles & nerves when you move whereas the right is rigid & stationary. Again, this is just me speculating.
You could suggest your doctor have a phone consultation with Dr. Samji or Dr. Cognetti in the US as both are very experienced with ES diagnosis & surgery. They would be able to give your surgeon information that might be very helpful to him. Their contact info is on the U.S. Doctor List. Dr. Samji is in California & Dr. Cognetti is in Pennsylvania.
Thank you Isaiah i think i spoke too soon my right side is very painful now in my ear and tinnitus is so bad. Its all very unpredictable. I will make an appointment to see him again with my concerns.
Thank you Jules we put them measurements in ourselves. The scan report said nothing about them which is very worrying. Its frustrating that im paying privately out of my own pocket even for a visit but i still have to do their jobs for them to get any help.
I agree with everything that Jules and Isaiah said above. Your right side SP is completely ossified down to the spot where the ligament attaches to the hyoid bone, and the left is nearly so.
Your left side seems to me to be the ideal size to be very noticable in the back of your throat. On the right side, you may be feeling the side of the process rather than the tip (since there isn’t a tip, obviously). I can only feel my right SP, and it feels like it’s pointing straight out of the back of my throat, but the CT scan shows that it is pointed at much more of a downward angle than I would have thought. So, as Isaiah said, it doesn’t always look the way it feels.
If I could add one piece of advice…
Now you’ve had the scan and you know what everything looks like in there. If you’ve been “exploring” (i.e., poking around) obsessively like I was, try to stop doing that for several days. My ear never hurt so bad as when I was poking and pressing on my neck, throat, ears, jaws and so on, trying to find bones, pressure points, etc. In particular, if I push on the SP at the back of my throat, my ear gets worse, not only in that instant but for a few days after. It’s very sensitive! Even pressing TMJ pressure points makes it worse. Try to just let it be for a week or two and see if it makes any difference. I don’t know if it will help you, but for me, it helped a lot more than ibuprofen ever did.
Thanks fivetiger i agree with everything you said. Every day my symptomes are different and always progressing. Funny thing is when one side is bad the other side is not so bad.
Sorry I have been away so long- I was at a conference for work. My second surgery will be in a week [on the side that is poking into my throat in front of my tonsil]. I have not seen it overtly grow since August. I am so glad you got your 3D CT pictures. My you have some long bones 
Many people on here have written about their symptoms changing strength and style from side to side. Please have resilience, it is a tough road to find Doctors and even family member to understand what you are going through. Once I was diagnosed and they saw my 3D CT and read about Eagles, the sympathy quota went way up.
As for the bone in your tonsil being felt…you obviously have pain and symptoms and really long SP from what I can see on your 3D CT [I am not a doctor] so I am not sure what the hold-up is about diagnosing you with Eagles. All I can recommend is to keep pushing.
Hi does anybody know what is the grey/black color stuff is on my scan? Theres some going down over the right side more than the left. Is it cartilige or something that maybe has to be removed also?
I went for a second opinion today to a scull base surgeon. He will do the surgery but cant guarantee anything. Hes never come across eagles before but he works in that area all the time. He told me about all the risks which was very off putting but he was very straight forward. He will discuss my ct scan with the radiologist as they work at the same hospital and wants to see me in a month. He will do one side at a time. He wasnt able to say alot about my symptoms on the right cause theres no way of telling whats causing it thats a risk i have to take he blamed alot on my anxiety as i was very nervous in there and said i need to calm down about it all first. So i dont know what to do. Go with him who i will be a first but hes a top surgeon or go with my prevous surgeon who is on the list here but dont see any posts about him. Hes an oral surgeon and has done 5 before and will do two sides together.
Logic says to go w/ the doctor who has done the most surgeries, but ultimately, the decision is yours. There are a number of people on this forum who were “firsts” for their surgeons, & they had good outcomes from surgery. I would advise you go with your gut. Who do you feel will do the best job based on your interviews with these two doctors? I like that the skull based surgeon would do 2 separate surgeries. That seems to be the way the more experienced ES surgeons in the U.S. prefer to do it.
I agree with the skull based surgeon, too, that you need to get yourself to a good place emotionally & mentally before you consider surgery. I was able to go into surgery thankful that I trusted my surgeon and also expecting a good outcome. I firmly believe that we can create worse problems for ourselves before and after surgery by being in a panic about it all. A positive mindset works wonders toward healing. When you’re constantly in a state of panic/worry, your adrenal glands produce excess cortisol which in continuous elevated doses, has very negative effects on your health & mental state. Finding ways to calm yourself reduces cortisol levels and helps you to think more clearly and feel better about whatever issues you have to face. An easy way to help yourself calm down is by simply spending a few minutes several times a day breathing deeply. Just close your eyes and try to clear your mind of anything bothersome, and inhale and exhale deeply for 3 minutes. It’s a quick easy way to begin to reset your mind and attitude and help yourself relax a bit. Actually, you can do this any time you start to feel panicky about something. Being that I am a Christian, prayer works wonders for me, but the deep breathing exercise is still beneficial to help with relaxation.