When is the date for your surgery?
Not sure if they’ll view mine in the same way Magen since ther is no “possible eagles syndrome” on my reports. But they never checked. I’m trying to get the neurologist to have radiology re review the scans but no word yet.
OM, you have all made my day. I wanted the same information on Dr. Newman. I can tell you a little more about Dr. Samji. If you want a real phone consultation, he charges a new patient visit hence the $500.00. Your insurance may cover it. Mine covered part of it. I have a nationwide plan so that helped. When you accept the charged conference, he really is nice and spends time answering your questions. I believe doctors’ time is valuable, so it was well worth filling out the forms and speaking with him. Once a doctor becomes known for something, they get lots of calls, and they have a lot of patients, so it is very reasonable to expect them to charge us for looking at our images or consulting with us. To me these good doctors are worth the charges, we are fortunate that they have the compassion to do workarounds for so many from long distances. I am sure we all agree on that. Love you guys. Tell your doctors that we all thank them for their compassion and skills.
I agree Emma. Thanks for the info.
Hey Jules! Still waiting for my surgery with Dr Chettri ucla calif. I am suffering so bad with a lot of vascular symptoms. I am.having a lot of throat numbness and I have no idea if this is because of eagles syndrome. I am worried now because I am.so short of breath and don’t know what’s causing all these symptoms. When I lay flat or on left side my heart starts pumping fast like it’s working hard to get flow. I have done so maNY other test but no luck. The numbness in my throat is very very difficult to deal with. I am nervous to have the surgery because of the problems breathing now and being under for 2 plus hours and dealing with that…I would never know but can be dangerous… I wish there was a better way to do this!! If this numbness isn’t caused by the styloid process then who knows what it is but its soooooooooo hard to deal with… I hate it so much…so worries now!
tambralee915
In all likelihood your throat numbness is from ES as is your shortness of breath. I had troubles w/ shortness of breath, heart palpitations & light-headedness, too, & learned it was because I’d get random bouts of low blood pressure. When you experience shortness of breath, hard rapid heartbeat & dizziness, it’s possible your blood pressure has dropped. Those are typical symptoms of low blood pressure. If you know that lying in a certain position causes these symptoms then avoid that position. If the symptoms happen randomly then it’s possible that your elongated styloid or calcified ligament is pressing on some vascular tissue that’s restricting blood flow to your brain. Thus, your blood pressure drops & you get light-headed, your heart pumps harder & faster, & shortness of breath occurs as your brain tries to oxygenate itself. Surgery is the best possible recourse to end this cycle.
Thanks! Yes I agree with surgery and am hoping to be relieved of these
symptoms afterwards. Thanks for your reply!
You’re most welcome!!
Hope the wait isn’t too long, let us know when you get a date, and thinking of you… I remember the time I waited for the first surgery, with symptoms getting worse, it was very scary, but prayed lots, and got there in the end… 
Dec 4th and not soon enough! I just saw this. Sorry for the late
response… I hate this. When I turn my neck to left I have this constant
gland or whatever it is popping and it’s more than 50 times a day now. I
can taste the calcification in my throat at times also…my The numbness is
horrible!!!
Sending my utmost sympathy your way. Do you know why Dr. Chettri postponed your surgery?
Thanks love! He had to go out of the country, do many people were moved
back. I am suffering greatly. I sit here and all I feel is this poking in
terms left side under my jaw. It’s becoming to much for me to handle. I
actually could of gone to Dr young at mayo but I feel that less than 10
surgeries is kind of scary. He also wanted to do the surge from the inside
of the throat and because my SP are growing down to a point it’s more
dangerous. How long was your surgery and how do you feel now?
My first surgery was almost 2 hours my second was about an 90 min. as it was more straight forward. I had the 2 surgeries about 9 months apart. I would have opted to have them both done at once but Dr. Samji only does one side at a time. I had a bicycle accident w/ a head injury one week before my scheduled 2nd surgery, so it had to be postponed for 3 months while I healed. I cried!! I was in so much pain (from ES) as are you! I was angry w/ myself for not being more careful, but in retrospect, it may have been the ES that caused my accident. I still don’t know what happened. I was riding down a hill then I woke up in an ambulance. Perhaps my styloid compressed my carotid artery & I blacked out? I will never know for sure!
It’ll be 3 years in Nov. since my first surgery & 2.5 years since my second one. My symptoms are mostly gone. I have a little facial numbness on my left side & first bite syndrome on the right as reminders of the surgeries, but these are very tolerable when compared w/ the ES symptoms.
I think you’re wise to wait & have external surgery. In my opinion (I’m not a doctor though), it’s safer & allows for more complete removal of the styloids & ligaments.
Hi Royce53!
Have you been able to get ahold of Dr. Cognetti’s office? If so, what have you learned?
Oh dear god!! I am so sorry for what you went through- but thank God you are alive! I feel compression and conjestion for sure. I lay on my left side and I can’t breathe well at all and I can feel the depletion coming on. I mentioned I can’t lay flat as well so I lay in a very uncomfortable position at night now so I can avoid the rapid or weak heartbeat/ breathing. I am so over this. I look forward to the day I can put this past me. I am so glad that this forum exist. I have been to so many doctors that have never hear about es. I have told them about this site to educate thereselves more on this issue! Well thanks so much for all your listening- writing and your experience that you are able to share. One day I will be able to share mine and hopefully help some people as well! 
Thanks so much
I know how you feel with the waiting- I had to wait about 3 months for mine, feeling worse every week, I know it wasn’t as bad as yours but I did have some scary symptoms too… I read through the Psalms alot to keep me going, especially Ps37:7.
I hope that the time passes very quickly for you!
Have you tried sleeping w/ your head elevated? You will need a wedge pillow for post op recovery anyway so you could get one now. (Dr. Samji recommends head elevation of 30 degrees or more post op. Other ES surgeons have also recommended head elevation post op to help minimize neck & throat swelling). You could experiment w/ elevating your head when you lie down to see if it helps. Start low & work your way to higher elevation if the slight elevation isn’t helpful.
Hi! Yes I have to sleep elevated every night now. I noticed last night that
I could feel the left styloid poking me even more. My right side is now
starting to affect me as well. I honestly don’t know if I could make till
December but I will have to if u want Dr chetrri to do the surgery since he
is out of the country. 
I need a break. I canthink hardly even breathe
deleted because Jules helped me restore my original post.
I’ve put it back for you, Royce. 