I went to see a ENT at UCLA - basically he told me that Vascular a Eagle syndrome was a “bazaar diagnosis”. Not at all related to pulsating tinnitus, hearing loss and tinnitus and balance. But he went on to prescribe a diuretic to lower CSF.
For those who have vascular eagles syndrome- reduction on blood flow from brain due to blood outflow restriction can increase CSF and cause my symptoms.
Crazy he prescribed a drug which might help but had no idea why.
Second option was middle ear surgery!
Contemplating if I should send him the paper by Nakagi on Eagles syndrome as a cause of Intracranial Hypertension.
errrr…Ruth- I know that's not at all what you wanted to get out of that appointment. I think you might try a drive 6.5 more hours north? ;) What are you going to do?
One of the docs on that paper did my catheter venography to measure the flow restriction…it is not too bizarre from my viewpoint (and I know you feel the same). That patient that that paper is referencing actually stroked (if I remember right) because of the restriction. I sent that paper to my ENT because he was interested in reading it after I told him about it. Then again, that's the kind of ENT/doc that he is. He wanted to know what I had read, what the sources were, if I heard anything he didn't mention, etc. He was real open to learning more.
http://www.ncbi.nlm.nih.gov/pubmed/21866063
Posting the link to that paper for those new to the site.
Ruth, i would ABSOLUTELY forward the paper to that MD. He needs to understand what he currently does not!
I plan on taking the drive to San Jose. Last night helped out with Homework. Looking down and reading in the head/neck position that kills me. My head pulsated all night.
Tee - Thank you for posting the link to the paper (abstract)
Tee said:
errrr…Ruth- I know that's not at all what you wanted to get out of that appointment. I think you might try a drive 6.5 more hours north? ;) What are you going to do?
One of the docs on that paper did my catheter venography to measure the flow restriction…it is not too bizarre from my viewpoint (and I know you feel the same). That patient that that paper is referencing actually stroked (if I remember right) because of the restriction. I sent that paper to my ENT because he was interested in reading it after I told him about it. Then again, that's the kind of ENT/doc that he is. He wanted to know what I had read, what the sources were, if I heard anything he didn't mention, etc. He was real open to learning more.
http://www.ncbi.nlm.nih.gov/pubmed/21866063
Posting the link to that paper for those new to the site.
Hi Ruth,
How frustrating to say the least!! Absolutely send him the info to help him understand and to hopefully help the next person that walks through that door with the same symptoms. Then move on to one of the wonderful Drs that get it. :)
I feel your pain :( Doesn't matter how bizarre it seems or sounds. I told so many Docs about not being able to turn my head without feeling like I was going to pass out. Especially down and then to right or left. It would happen for me within seconds. Dr. Samji understood right away and said it was because of the styloid compressing my carotid.
Here is one I found.....
http://www.ajnr.org/content/28/1/143.full
As far as the tinnitus.... I had it in both ears.... the ringing kind constantly! Varies in tone and how loud. I couldn't lay on back or on my left side. I would hear/feel my heartbeat (pulsing kind) in my left ear (and would feel like I was going to pass out) Since having the left one removed the ringing is almost gone in my left ear. (coming up on 7 weeks) I have had a couple of times where I had the pulsing kind. He said it would subside once the internal swelling is completely gone. I started icing (frozen bag of peas) again and it stopped.
Hang in there and know we all have your back!! :)
Take care,
Sheila
Hi Sheila
The tinnitus is the same. If I lie down and put pressure on my head - especially the right. or look down. The tinntus pulsates.
sadly I had a doctor in LA that gets it - he took out the left styloid but decided not to remove the right one. Both are/were compressing my IJV. creating 95% stenosis of IJV. Also a NIR said it was mm away from carotid.
I have Vascular Eagles- both jugulars are stenosed by the styloid, C1 and digastric muscles.
I also have high intracranial pressure and now have a shunt, which helps a little. We discovered the Eagles after the shunt was placed, but are now nearly certain it is causing the high brain pressure with resulting symptoms, including disabling balance problems.
Prior to my shunt I was on a diuetic called Diamox (acetazolamide). Also, years ago, was on other typical diuretics for my presumed Meneire's Disease...
Send hin that great paper!!
Tee-
I am also awaiting a catheter venogram. Can you share with me/us what the pressure gradients showed?
I am so sorry to hear that he wouldn't do the other side. I don't understand how it can be ok to leave it. So very disappointing :(
Have you tried sending your scans to one of the drs on Emma's list to get a second opinion?
Not sure it would help in your situation with the pulsing tinnitus but I elevated the head of my bed (at the posts) in addition to the icing. I am sure the best is just to get that sucker out of there.
I hope you get some answers and relief soon!
Ruth said:
Hi Sheila
The tinnitus is the same. If I lie down and put pressure on my head - especially the right. or look down. The tinntus pulsates.
sadly I had a doctor in LA that gets it - he took out the left styloid but decided not to remove the right one. Both are/were compressing my IJV. creating 95% stenosis of IJV. Also a NIR said it was mm away from carotid.