Hi all, I have a virtual consult with Dr. Samji and I am wondering if anyone has any recommendations for questions that I may not be asking or maybe I’m asking the wrong questions. I am also planning to get a CTV and wondering if that is overkill, or is there a better test to get?
First off, Dr. Samji does NOT believe vascular ES exists. He doesn’t believe the styloids can compress the IJVs thus he wouldn’t be the best doctor for you to see if you have IJV compression. Dr. Hepworth in Denver or Dr. Costantino in NY are the two most experienced vascular ES surgeons we know of. Dr. Hepworth requires initial consults to be in person but Dr. Costantino does virtual consults.
Do you know for sure that you’ve got IJV compression i.e. what test or scan showed that? If you’ve already had a scan that shows IJV compression, why do you also want to get a CTV? If you do go ahead & get a CTV or CTA, you want the dynamic version i.e. get the scan done w/ your head in various positions to look at which head positions cause the worst compression.
There’s info about surgery and some questions we suggest people ask their doctors in the Newbies Guide Section, here’s a link:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Although most of the questions are for when members are seeing doctors who we know little about; we know that Dr Samji does external surgery and is very experienced.
@Isaiah_40_31 has given you good info about other doctors so I won’t add any more to that!
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That definitely sucks to hear that he doesn’t believe vascular ES exists. Should I not keep the appointment if that is the case?
I had a virtual consult with Dr. Constantino, but to be honest I was a little disappointed because he wasn’t sure if decompressing the jugular veins will relieve my symptoms. He wants me to get a venous pressure sampling test done by Dr. Padsiledes and see what that says first. I have a virtual consult with that doctor in Feb. I do have a consult with Hepworth set up in April but I have just been trying to get answers since that is a few months away.
I had a CTA done with head turns that shows compression, but yeah, trying to get more information if possible.
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Dr. Costantino wants lots of imaging which is probably a good thing. He had my CT w/wo contrast, and then MRV. Was told the MRV was ‘very telling’ about my condition and wanted a CTV (and didn’t want to discuss what was ‘very telling’) nor did he review my CT with me.
It was unclear to me whether he looked at it, perhaps because he wants specific imaging. With that being said, I had called the office prior to getting the CT to find out what imaging he wants and was told the CT w/wo contrast (?).
I was hesitant to get the CTV as my Vascular Neurologist had said no compression (but the scans were not dynamic). Dr. Costantino’s scans were also ordered without dynamic positioning. When CTV results came in he said no compression.
If your compression is mild, some have had good success with only styloid removal by Dr. Trevor Hackman in North Carolina. If more severe, I would keep with Dr. Hepworth if you can hold that long.
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@pauld1635 - I wouldn’t spend the money to see Dr. Samji since you know you have vascular compression. We have a member who has IJV compression who saw him for a consult recently, & he flatly told her that he doesn’t believe vascular compression w/ ES exists. He is a very competent ES surgeon (did both of my surgeries w/ good outcomes) but the opinion he holds re: VES is flat out wrong.
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You know, everyone, the more I read on this site the more depressed a person can get about these doctors regarding eagle syndrome and the types in the treatment! This just should not be this confusing! We all need help and we need these doctors to listen to us as patients and we need doctors to do research on this syndrome so that the correct treatments will be offered and the symptoms that patients are explaining to doctors are not dismissed as anxiety or even worse and we all need to be taken seriously. It is so unfortunate that there are a few doctors out there that really want to hear from the patient, understand exactly what the patient is going through, and then do research, if needed, to help the patient out! All this run around and misinformation just makes everything that much more confusing and we already have a lot that were suffering with and going through! Anyway I’m just venting right now, because I feel so bad for everyone including myself not being able to get answers from these medical professionals! I have found Isaiah and Jules on this site to be more helpful than anyone and if we could just get a doctor to hear what they have to say from the research that they’ve done and from all the members that they have heard the symptoms of and what they’ve gone through, so much headway could be made into eagle syndrome, both the classic form and the vascular form! Unfortunately, if we as the patient try to advocate for ourselves, doctors then don’t like that either because they feel like you’re telling them what to do. It seems like a person can’t win for losing! That being said, I am thankful that I am a Christian and I can look to the Lord for answers to the questions I have and for direction to the right doctor and I hope and pray everyone on this site will be able to be led to the appropriate doctor who will listen to them, have empathy, and be able to treat their situations.
Thanks for your time everyone.
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Preach it, sister!! Thank you for your rant, @GodisAWESOME. You speak for the vast majority of our members. 
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I agree! It looks more & more like ES isn’t as rare as doctors are taught, and now that people can google their symptoms they can get info on ES (& other rare conditions) and are getting diagnosed. The numbers of new members on here has increased loads since @Isaiah_40_31 & I started moderating 7ish years ago…
Just wish that the doctors would use google more too 
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That’s so true! If they would go on the internet and read about this rare syndrome, and check out the stories of patience who are suffering, you would hope that they would set aside pride and remember the Hippocratic Oath that they took. When a person doesn’t feel good, it’s not that easy for us to go on the internet and research all of this, and then once we find the information, the last thing that the doctor wants to hear is that we found such and such on the internet! But we’re not getting answers and we’re not being heard so we do what we have to do, and that’s where God comes in to help us!
This site is so very hopeful and so many ways. It’s a help emotionally, many times physically by the different things we learn from each other of what has helped or not helped us on this journey, and I might sound like a broken record, but thank God for Isaiah and Jules putting in their time to help us navigate through this thing called Eagle Syndrome. They both are truly a blessing, at least to me, but I do think I speak for many others because I have read it time and time again from other members on this Forum! I don’t want anyone to be taken for granted for all their hard work! THANK YOU, THANK YOU, THANK YOU FOR ALL YOU DO, ISAIAH AND JULES!!!
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Using speakerphone, so please disregard errors in the message.