Hello all, I was only diagnosed yesterday & I don’t actually know if I have classic or vascular ES as yet. To be honest I’m struggling to get much in the way of information as my doctor has never heard of ES (diagnosed following CT scan). I am desperately trying to find out the ‘dos & don’ts’ & if there’s anything I should or shouldn’t be doing particularly with regards to cardiovascular exercise? Any advice/information would be hugely appreciated.
Best wishes to all
Michelle
Great post Michelle!
Michelle,
Welcome to the site. I'm sorry you have Eagles, but this is the best place to be for information and support. One of the best things you can do is go back to the past postings and read as much as you can. There is a wealth of information here.
One thing I can tell you is that the best thing you can do is go to a doctor who has experience with Eagles. I see you're from the UK. There is a list on the forum here of doctors who have had successful surgical outcomes and I believe there are a couple of doctors from England on there. Emma made the list, so look for her past posts. I think there was one fairly recently and that will be the most updated one. Get a couple copies of your CT scan if you can - not the report - the actual disc. If at all possible, try to call the doctor's office and see if you can send your CT scan to them.
The only cure is surgery, from everything I understand, and it's best to have it done by a surgeon who has done it before. I've said this many, many times, but I'll repeat it again here - It's best to get the whole styloid taken out, not just a part of it. Believe me, I speak from experience. That's the best way to avoid problems in the future.
I had "regular" Eagles on one side and vascular Eagles on the other. I didn't have any particular restrictions, but I went mostly by how I felt. If something hurt or bothered me, then I didn't do it, but I was never told any specific dos and dont's. Other people on here may have different experiences. I know various things have helped people, such as wearing a cervical collar while driving, eating lots of popsicles, using a wedge pillow to sleep, etc. I used pain medications quite a bit.
Good luck to you.
Thank you so much for your reply Heidemt, it is very much appreciated & I shall follow your advice 
heidemt said:
Michelle,
Welcome to the site. I’m sorry you have Eagles, but this is the best place to be for information and support. One of the best things you can do is go back to the past postings and read as much as you can. There is a wealth of information here.
One thing I can tell you is that the best thing you can do is go to a doctor who has experience with Eagles. I see you’re from the UK. There is a list on the forum here of doctors who have had successful surgical outcomes and I believe there are a couple of doctors from England on there. Emma made the list, so look for her past posts. I think there was one fairly recently and that will be the most updated one. Get a couple copies of your CT scan if you can - not the report - the actual disc. If at all possible, try to call the doctor’s office and see if you can send your CT scan to them.
The only cure is surgery, from everything I understand, and it’s best to have it done by a surgeon who has done it before. I’ve said this many, many times, but I’ll repeat it again here - It’s best to get the whole styloid taken out, not just a part of it. Believe me, I speak from experience. That’s the best way to avoid problems in the future.
I had “regular” Eagles on one side and vascular Eagles on the other. I didn’t have any particular restrictions, but I went mostly by how I felt. If something hurt or bothered me, then I didn’t do it, but I was never told any specific dos and dont’s. Other people on here may have different experiences. I know various things have helped people, such as wearing a cervical collar while driving, eating lots of popsicles, using a wedge pillow to sleep, etc. I used pain medications quite a bit.
Good luck to you.
Hi Michelle,
I would guess you have classic eagles if the radiologist picked it up. When I went for my CT even though the Eagles was what they were looking for since mine was a naturally elongated bilateral Eagles the radiologist said it was normal but 2 ENT doctors confirmed eagles. So i would guess they picked up on it because of calcification.
Michelle in the UK, we have only found two doctors, I am posting there names and locations here. Perhaps you can contact them and maybe find someone close to you, otherwise you may have to travel for help
Mr. Rogan Corbridge in Reading UK
| http://www.circlepartnership.co.uk/consultants/rogan-corbridge |
Mike Rothera Salford Hospitlal in Greater Manchester, UK. Mr Rothera is a new recommendation and I do not have all his info recorded yet. I started a discussion within the last couple months asking members outside of the US to update me on Doctors, one of the members recommended Mike Rothera, Mr. Corbridge was recommended more than once in this forum. Hope this helps.
Hi Lifelongeagle,
Many thanks for your reply. I finally have an appointment with a consultant so will hopefully soon find out for sure. I saw you have recently had surgery, I hope you’re recovering well & seeing some relief from your symptoms
Best wishes
Michelle
Lifelongeagle said:
Hi Michelle,
I would guess you have classic eagles if the radiologist picked it up. When I went for my CT even though the Eagles was what they were looking for since mine was a naturally elongated bilateral Eagles the radiologist said it was normal but 2 ENT doctors confirmed eagles. So i would guess they picked up on it because of calcification.
Thank you so much for the info Emma. I finally have an appointment with a consultant in Bristol. I have e-mailed him to establish his experience (if any) with Eagle’s. If he hasn’t any then the contact in Reading will be very useful Thanks again Emma
Best wishes
Michelle
emma said:
Michelle in the UK, we have only found two doctors, I am posting there names and locations here. Perhaps you can contact them and maybe find someone close to you, otherwise you may have to travel for help
Mr. Rogan Corbridge in Reading UK
http://www.circlepartnership.co.uk/consultants/rogan-corbridge Mike Rothera Salford Hospitlal in Greater Manchester, UK. Mr Rothera is a new recommendation and I do not have all his info recorded yet. I started a discussion within the last couple months asking members outside of the US to update me on Doctors, one of the members recommended Mike Rothera, Mr. Corbridge was recommended more than once in this forum. Hope this helps.
If you find a surgeon and have a successful surgery. Please post his information on the "Recommend A Doctor" Link on the Home page of this Website. I would like to see everyone do so. It would be easier for all new members to find a doctor than the way I have been doing it. The link is relatively new.
Will do Emma
emma said:
If you find a surgeon and have a successful surgery. Please post his information on the "Recommend A Doctor" Link on the Home page of this Website. I would like to see everyone do so. It would be easier for all new members to find a doctor than the way I have been doing it. The link is relatively new.