@Isaiah_40_31 Yes if the only solution is having surgery In Turkey I will have to stay at least about 15 days .
Before that I “d like to a second
opinion from a specialist who would say the same thing. Who would you recommend?
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Mr Axon in the UK has done ES surgeries & C1 shaves, I think he’s a bit more cautious than Dr Aghayev though. He’s had consultations with quite a few overseas members through Spire healthcare:
Mr Axon , Otolaryngologist/ Skull base surgeon, Spire Lea hospital, Cambridge, for Spire Health care. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital
Otherwise you could get an opinion from Kjetil Larsen at MSK Neurology
Home - MSK Neurology
He’s very good at spotting things on scans which radiologists miss, and would give you an honest opinion I’m sure, although he doesn’t do surgery… He has written research papers which I can give you a link to if you like, although you might be a bit weary after all the translating? 
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Thanks so much for the help. I’ll check the reading conditions and schedule an appointment with DrAxon and Kjetil Larsen.
Today I will perhaps I’m going to have a second reading with a radiologist of my town. It is a small start but it is one…
About link of research papers it is OK for me . I will try to read.The more I read, the more I become an active participant in my illness.
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@Veroguilnec - The suggestions @Jules gave you for second & third opinions are good ones. I don’t have any different names to offer you.
I don’t know if this is the article Jules is thinking of but here is one by Kjetil Larsen that might be helpful for you:
@Jules @Isaiah_40_31 I read the articles you gave me.I use google traductor …I read several ,all is very intesting but when I read I realize so many radiologists do not how to correctly interpret examinations, especially since they do not pay attention to associated clinical signs. In one article Kjetil Larsen said 4 radiologist experts four experts missed the correct diagnosis !!
@Isaiah_40_31 I’ll answer to your MP tomorrow..sorry tonight I am so tired.
Have all a good night
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I was thinking that right side looked awfully odd…being the IJV…its really abnormal looking. Both the styloids sure look close to the jaw like its jammed up in there. Im reading and learning Isaiah! Hey I am “old” too (almost 70)…you need to dump that doctor! I had my ES surgery at 65 and hoping back in his year for IJV compression.
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I have been dealing with this for 10 years and have had more scans than I can count. I can attest to radiologists not accurately reading scans. I take their reports with a grain of salt. I just had (2) radiologist and (2) ENT specialists (they too told me I had crystals in my ears -NOT! and my rapid one-sided hearing loss was due to aging) read a CT Venogram and said it was normal. Well luckily I saw a surgeon who is an expert in ES and vascular compression and knows how to read the CTV. He found lymph nodes compressing my IJV on one side and a lymph node wrapped around the IJV on the other side strangling it. I have been pointing to this one spot for 10 years complaining of shooting pain to my ear. It’s exactly where the compression point is. How does so many doctors miss this? This is why I get the scans done, ignore the reports and take them to an expert in the field.
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@Snapple2020 Hello thanks for your answer.
Four your daughter about POTS have you read
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Thanks Vero,
I have read alot about POTS over the years but not this specific article. It is timely as I am just preparing for her to be further evaluated for ES and vascular compression in the neck. Ive been to the MSK website before in the past and I am glad you brought it to my attention again. I too have received a shaky diagnosis of nTOS and this opened my eyes to some new theories. I have been getting super dizzy when I lie flat on a table for PT, chiro or scans. This explains why. I will be re-reading this article a few times. Thank you again!
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@Snapple2020 I will also have to read again and again…because I read but I forget…But I also more understand my symptoms. I am so angry that doctors don’t know .. My heart is 115 pulsation as soon as I sit in my bed in the morning.
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Yes read again and again is right!!! Its deep stuff. One POTS doc had a suggestion of sipping a little soy sauce in the morning before getting upright in the morning?
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Is that for the salt content do you think?
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Yes Jules. Its heavily concentrated.
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do you think it is a good idea to have dr Osborne review? I really like to have a review with a specialist …
Dr Osborne is an excellent surgery, he’s done lots of successful surgeries, but he doesn’t do C1 shaves and if you did need this for IJV compression then the surgery might not help… He does cut the styloid back fairly high, but again it might not be quite high enough depending on where your IJV’s compressed, & he doesn’t check that the jugular is flowing freely like some of the VES doctors do. So it’s up to you, he’s very happy to review scans & do virtual appointments without a commitment to have surgery with him
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@Jules Thanks so much for your answer.
I only want Dr Osbourne have a look on my scanner and IRM . I have not enough money to have surgery in USA 
I sent today a mail to Kjetil Larsen as you suggested to me .My goal is to get at least two opinions that say the same thing.
I go tomorrow by plane for a last(?) appointement with ENT(1100km from my home) to ask him to review my exams. I know He does not perform surgery if jugulairs are compressed…
What a complicated path to get a reliable medical diagnosis!
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Dr. Osborne would be a good resource for you as far as getting a second opinion, @Veroguilnec. You would probably be able to talk to him without a long wait for an appointment.
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@Isaiah_40_31 @Jules I had written a long reply but it didn’t appear (I did something wrong)A follow-up to the consultation.
ENT in the south of France states 100% said that there is no jugular or carotid compression, a conclusion completely opposite to Dr. Aghayed’s. (I showed him the report.) ( I forgot to show him images of radiant 3D…and if I did it not sure he would have appreciated it)
According to him, the dysphonia is not symptomatic of Eagle. (He denies the possible involvement of the glossopharyngeal nerve while shifting the possibility to the vagus nerve… in short…) He asks me to have speech therapy sessions (which he didn’t prescribe!) before considering external surgery. He would remove the styloid process at the base of the skull but then use a stent (he says he now works with a neuroradiologist)..He told me he didn’t need a further MRI…because he’s certain there’s no compression (he emphasized this point).
So I’m going to wait to have my venous CT angiogram on 6th Of march
And I’m still going to try to get an interpretation of my test results from either Dr. Axon, Dr. Osborne, or Kjetil Larsen…
These contradictory diagnoses are totally unsettling!
The doctor asked me where I found his name. I replied, “livingwitheagle syndrome” (which is incorrect since it’s on a French Facebook group).
But given the wealth of information on the site, I thought that if it could be updated, that would be a good thing. He told me he wasn’t familiar with the site and that he would check it out… (Let’s hope he does!!)
So that’s where I stand… almost at a snail’s pace until recently. Ah, apparently, since he didn’t give me a voice summary in front of me, the secretary told me I most likely won’t get a written report… On the one hand, that would suit me because my GP won’t be able to scold me for having consulted him again… On the other hand, my husband recorded the entire consultation on his phone.
Otherwise, the doctor wasn’t surprised that I came from B—- because, he told me, even Belgians come to see him…
Do you think orthophonist would help me or it is it’s useless
We know for a fact that the glossopharyngeal nerve is very often involved in causing ES symptoms & that dysphonia is an ES symptom as many of our members have experienced it. Dysphonia is usually caused by the vagus nerve & will resolve on its own once the vagus nerve is no longer irritated & has a chance to heal. There is no harm in going for speech therapy if you want to try it, but it may not be helpful until your styloids are removed & your vagus nerve is healing.
I am glad you found a doctor in France who does external ES surgeries & cuts the styloid close to the skull base. That is EXCELLENT NEWS! Do you mind sharing his name & contact information with us? We can add him to our Doctors List, at least as a resource for our French members.
It’s good news that your husband recorded your appointment since it doesn’t sound like you’ll get a written report. At least you have the first hand information which you can re-listen to. 
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Good that you can get a CT venogram, maybe he’ll look at those images! Frustrating that he doesn’t understand the symptoms you’re having, but that’s not unusual… We’ve had some members who have tried the speech therapy, it probably won’t help but sometimes these are hoops you have to go through to make doctors take you seriously!
It is tricky when you get differing opinions, all you can do is consider your own symptoms, compare this to the imaging & see which doctor you have the most confidence in going forward, but for now at least you have the CT booked
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