New ES Member - Story & Thank You w/ Pics of my CT Scan

Good news about your appointments being set. Don’t know why Dr. Samji is so adamant about no contrast especially if you’ve been diagnosed & your styloids are palpable. Kim is definitely Dr. Samji’s filter. I will pray that she will be your advocate.


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Hope that you get good news from them, seamom

Today did not go well! The Dr I saw came in and asked about my symptoms and said that they are not symptoms of Eagle’s. That yes I have long Styloids but that I still have my tonsils and the pain is not severe in my throat, nor do I have nerve pain so he doesn’t think I need surgery because he is not sure if the risk outweighs the potential solution.He lacks confidence that it would cure my issues. He said he normally does his surgery by intra-oral and removes only part of the bone when the pain of the bone in the throat is severe.

I know that I do not have a lot of the nerve pain problems, but I have many of the problems associated with Vascular ES [see list near top]. He further examined me, listened to my concerns and said I should go see Samji for a second opinion [and pay out of pocket] then email him what Samji says and that he [HMO doc] will preform the surgery based on what I email Dr. Samji recommends! This makes me doubt his {HMO doctor] surgery skills a lot.

It’s so frustrating- you can’t win with the symptoms- other members have had nerve pain, but been told is not ES!!! ES is not just caused by having tonsils out, GRRR, I feel for you!:confounded: It’s just so bewildering when we have vascular symptoms, and doctors say surgery is too risky! Leaving the styloid in that situation isn’t exactly safe either!! But then, if he only removes part of the bone, it may not be enough to help your vascular symptoms, so you could’ve ended up having surgery and not feeling much improved…
Does this mean that you won’t be able to get your insurance to pay for surgery with Dr Samji- sorry, I’m UK so don’t know the US system.
Thinking of you!

The doc I saw yesterday said if Dr Samji is willing to do the surgery then to email my HMO Dr the details of what Samji wants to do and he will do it. So bottom line is NO my Insurance dr is saying that the insurance won’t cover Samji. This leaves me with three options 1) filing a grievance to fight for Dr Samji to do it 2)going with my HMO doctor, or 3) paying out of pocket to see have Dr Samji do the surgery! In addition, this surgeon is now claiming the reduced flow through my ICA from 100 cm/s down to 42 cm/s is within “normal range” so it doesn’t constitute Vascular involvement. I asked about when I rotate, bend turn to look up…couldn’t these static bones change direction with my head and then be pushing in my vascular system more on either side depending on the angle? …FRUSTRATING!!!

I’m not sure Dr. Samji will support your claims either but even if he doesn’t, it’s worth fighting to have him do the surgery.

Isaiah why do you say that about Dr Samji?

Dr. Samji does not distinguish between vascular ES & ES in general. If you go to him saying you think you have vascular ES he will tell you he doesn’t believe in such a thing. He won’t discount your symptoms but he will not concur w/ you regarding the term “vascular ES”. I had vascular ES symptoms but understanding his position, never called it that. When you see him, it would be best just to say you have an ES diagnosis with vascular symptoms.

I’m so glad you’ve been such a great advocate for yourself! Your symptoms sound eerily familiar. I had carotid involvement. For my surgery they were to remove the styloid and untangle the carotid. It was “strangled” on the styloid and the side effects were threatening. For some reason once I was opened up only 1\2 an eraser tip size part of the styloid was taken. Carotid was released. No explanation given on why the whole styloid wasn’t taken. Research your surgeon and remember not all surgeries go as planned. Good luck!

Hi @Dizzy55313 Dizzy et al-- I have tried to research my surgeon and found almost nothing outside the HMO website. Any good ideas of how to research a surgeon?

Part of researching a surgeon is posing the questions you have regarding his/her experience & approach for treatment of your problem when you meet w/ him/her. It’s getting a feel for whether or not he/she will do the surgery in a manner with which you’re comfortable based on the information you have gleaned from other sources or other medical opinions/advice.

For example:
The first ENT doctor I saw diagnosed my ES but upon my further examination told me he wanted to do bilateral surgery & have me stay in the hospital over night. When I asked how much of the styloid he would remove he said, “some”. When I asked how many ES surgeries he’d done he said “a few”. He did intend to do the surgery externally (to his credit). When I went to Dr. Samji for a second opinion, he had solid answers for all my questions & had done close to 75 ES surgeries by then (Nov. 2014). For me, the choice of who should do my surgery was quite clear.

If you want a second opinion within the Kaiser network, see if you can get an appointment w/ Dr. Fidelia Butt. She works primarily at the Santa Clara Kaiser but is on staff at several others in Santa Clara Co. I know her personally & believe she is an excellent doctor. She does ES surgery intraorally.

I hope this info is helpful.

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Thanks Isaiah that is helpful, especially Dr Butt, but I am wondering if there is a website that tracks Dr. ratings or issues???

You can try Googling a specific doctor’s name and see what comes up. There are sites that track people’s ratings of doctors they’ve seen.

My advice, based on limited experience, is to not push the timetable. Some doctors have a process they go through before they commit to surgery. They want to observe you over time. Their time-table is part of how they make decisions, and if you don’t submit to this, they will consider that to be ‘noncompliance with medical advice.’ It took me 13 months to receive surgery, even though they could see something was abnormal, structurally. However, my symptoms were just too rare.

Thanks Isaiah, I did try that but only found 1 site with 6 reviews and nothing from anyone with Eagle’s Surgery. I was hoping someone on hear knew that name of a website to investigate surgeons before having surgery.

Thanks Mark, I am not pushing this doctor’s timing. He wants me to see Dr Samji and report back how Dr Samji would do the surgery so he can mimic it.

You’re welcome. Sorry my suggestion didn’t work out for you.

No need for an apology - I appreciate your offer to help:blush:

Finally got my SP length after 3 requests: my Right is 4.9 cm and my Left is 4.7 cm

Ouch!:unamused: Bear in mind that it’s not always accurate when they calculate the lengths, it depends on the medium/scan they used, often members have had surgery and found that it’s different. It should help your case though, hopefully!