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Eagle Syndrome - Online Support Group

I have some questions about Dr Hussein Samji in San Jose, Ca

Dr Hussein Samji seems to be pretty much the best expert there is on Eagle syndrome at least according to what I have heard on these forums.

I've seen him two times now but have yet to have any surgery. He was certainly very nice and he certainly knew about Eagle Syndrome and he even mentioned this site. He is the only doctor that I know who mentions Eagle Syndrome by name as one of his clinical specialties on his website.


However when I was speaking to him he seemed to show skepticism that vascular Eagles exists as a diagnosis? Is it true that Dr Samji doesn't believe in vascular Eagles?

Not that that would matter if he would do the surgery competently. When I first saw him, he seemed like he really thought I had Eagles and he might do surgery. He then sent me to get new CT scans done.

After that he seemed reluctant. I didn't follow up with him directly, I only spoke on the phone with him as I had already left for home (I live 5 to 6 hours from him).

I followed up several months later and he again seemed skeptical and reluctant to do surgery. I don't know whether it was because I had done surgery before and he was concerned about complications or because I had other diagnoses that had been suggested?

I have looked at those same CT scans and I've had some done since then (I've posted them) and the styloids are at least 2.5 or more centimeters on each side and my stylohyoid ligaments are both significantly calcified at the attachment to the hyoid on both sides (another 2cm of bone on each side).

Maybe what is there still technically qualifies as "normal" according to some textbook but I have a great deal of pain. I can feel a bone in the back of my throat with my tongue. There is something sticking there and I have symptoms of serious nerve and/or vascular compression.

Dr Samji was always very polite those two times I saw him. I didn't really get a clear explanation of why he wouldn't operate. I called the reception desk and they gave me his email address. I have sent him several emails over the last several months and I have never got any response.

I don't know what's going on?! I guess I could continue and try someone else but I know they would have less experience than Dr Samji.

Has he ever told anyone else that he doesn't believe in vascular Eagles? He didn't say that explicitly. He is aware of medical literature that talks about it but he still expressed skepticism.

What do you think? I'm interested in any feedback you could give me about my experience.

I posted my CT scans again just for reference.

179-Front1.jpg (280 KB) 180-Front2.jpg (160 KB) 181-Front3.jpg (142 KB)



well the styloids could be impinging on the arteries ! hence the symptoms you are experiencing ! there seems to be some calcification of the small horn of the hyoid bone but I wouldn't think that would cause the symptoms you mentioned , although you could use this software http://svn.softwarepublico.gov.br/trac/invesalius/wiki/InVesalius/Download and see everything in detail try it its free and very good !!

jrodefeld, what are your symptoms? I too had significant calcification at my hyoid and my doctor decided that he would do an external surgery through the neck and remove the ligament at my hyoid up to my styloid and part of my greater horn of my hyoid. He mentioned that some people that don't have success with the first surgery may actually have some issues at the hyoid instead. It may be something to look into. That is why I was wondering your symptoms....

In the CT scan does not seem to indicate a significant calcification in styloids and hyoids. To be a classic ES the styloid should be close to the angle of the jaw. The doctor may be reluctant to operate for this reason.

Dr. Samji told me that he doesn't put a lot of emphasis on the symptoms, that he goes by the science - that is, what he sees on the CT scans. So maybe he doesn't think your situation looks severe enough to warrant surgery. Or he may think you have a "problem" case and he doesn't want to attempt it.

I know he told me that my revision case scared him, but I was (and still am) very grateful that he still did the surgery because I had been turned down by other doctors. My unusual pain improved from the surgery, but I still have remaining pain. I continued to have pain, so about a year after the surgery, I got a CT scan and it turned out that I have about 2 centimeters of the styloid left. I really believe that remaining piece is hitting some nerve(s) that is the cause of my pain. But he won't do another surgery on me. I couldn't even talk to him on the phone or email him. (I live in Hawaii.) I had to email his assistant, then she would ask him the question and email his response to me.

So I'm only guessing, but I would think that for some reason he doesn't feel your case is a good one for surgery. Since my case at the time didn't involve the veins or arteries, he never discussed vascular Eagles with me, so I didn't get any kind of sense of what he thought about it. Maybe if you want to ask him why, you could email his assistant and she could ask him.

My experience w/ Dr. Samji has been good. My styloids extended all the way to my hyoid bone which made having them removed the clear choice for Dr. Samji. I had my first one done in Nov. He seems to be willing to communicate through his medical assistant Kim - kimberly @ caminoent .com. If I have questions, I send them to her, & she talks to him & usually gets back to me w/in a few hours. I would ask her point blank what his hesitation is about doing your surgery. That question may either get him to email you back or at least give you an answer through Kim. He may not know that he didn't give you a clear, satisfactory understanding of your situation & why he's not willing to do surgery at this time.

I didn't ask him about "vascular" ES. He removed my right styloid which I believe was poking my carotid artery due to some blood pressure issues I was having (my bp was dropping very low during strenuous exercise). It's possible that he doesn't differentiate between non-vascular & vascular ES - it's all ES to him regardless of its manifestations. This would explain his reluctance to tag one set of symptoms as vascular ES vs non-vascular.

I am very thankful that he did my surgery & will have him do the other side when the first one is healed. Another ENT in my area (Los Gatos, CA) who does ES surgery is Dr. William Lewis. He diagnosed my ES, but I was more comfortable w/ the fact Dr. Samji has done more ES surgeries so I chose him as my surgeon. Dr. Lewis has been in practice for many years & is a competent, well respected surgeon in this area. Perhaps it would be worth a trip for a second opinion. His ofc ph # is (408) 395 - 6121.

Happy New Year!

Isaiah 40:31

Hello. I've recently been diagnosed with hyoid bone syndrome by an ENT that said he couldn't do the surgery. He recommended a Dr. Woo in NYC. I came across this thread so I'm considering if Samji may be worth considering. I live in VA.

A doc gave me prednisone and my symptoms went away but are returning. An injection in the left hyoid region didn't help me so I'm not sure what to make of it all. The doc who diagnosed me said the CT Scan could look fine but I still have it. He used an ultrasound to show the thyroid cartilage rubbing the hyoid bone.

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Hi ramblinman -

I just saw this post of your more than 3 years after the fact. So sorry I missed it when you sent it. What if anything have you ended up doing about your hyoid bone syndrome?

If you’ve had nothing done & still are interested in pursuing Dr. Samji’s opinion, he will need a copy of your CT scan & radiology report. You would send it to Kim Elliott his medical assistant - kimberly @ caminoent . com (the extra spaces are so the site software does’t recognize it as an email address & block it). She responds to emails much more quickly than phone messages so I won’t waste your time w/ the ofc phone number.

I hope you’ve been able to find a solution that has eliminated your symptoms. Please let us know what’s happened since you posted last.

:blush:

Hello,

Not sure if I provided an update in that forum, but I ended up seeing a doctor in Utah. He thought it would need to surgically remove a portion of my hyoid bone and my thyroid cartilage, but it ended up being just the thyroid cartilage. The surgery was a success with an immediate resolving of my issues. Thank you.

Thank you for replying. I’m so glad you’ve moved on in your life in good health!!

That’s fantastic news! Really happy your surgery was a success and resolved your issues. Could you please let us know who your surgeon was? Would be helpful to know just in case might also have hyoid issues. Thank you and sending you all my blessings x

Dr Marshall Smith in Salt Lake City.

Thank you :pray: :relieved:

Hi Ramblinman , what is the name of your doctor in VA who was able to show part of hyoid rubbing on thyroid cartilage on ultrasound?

Hi hopehope1 -

I’m not sure who he saw in VA, and I know this isn’t the info you’re looking for, but in case ramblinman doesn’t answer, here’s the information we have - the name of the doctor who did his surgery: Dr Marshall Smith, Salt Lake City (Successful thyroid cartilage surgery on ramblinman). FYI - There is also a doctor at Stanford Hospital in CA who did hyoid bone surgery for one of our members in 2019.

Do you think hyoid bone syndrome might be what’s causing your symptoms? It does have similar symptoms to ES, but since you’ve been diagnosed w/ ES that would probably be the best thing to take care of first as it will likely help your symptoms a lot if you see an experienced ES doctor.

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Isaiah, thank you so much for your response. My styloids, per radiologist, are “borderline,” so no formal ES diagnosis… I posted 3d pics of my CT here, and quite a few members ( Sewmomma included) thought the lesser horns of my hyoid bone are longer than usual, and that it might cause problems swallowing (this is my symptom, along with the pain around thyroid cartilage, and clicking when swallowing ). I’m still in process of seeking good specialist who could (hopefully) tell me what the problem is. One of the ENTs I saw diagnosed me with “hyoid bone disorder “ and said my clicking comes from hyoid bone, but offered no solution. I noticed how Ramblinman stated he was diagnosed by ultrasound, and thought it was unusual since usually dx made by CT scans, but was also hoping his doctor in VA could diagnose me:)) just because at this point I’m kind of desperate for correct diagnosis… the clicking is there ( like sewmomma’s case), and also ligaments are calcified (just like hers) so I suspect it might as well be the same situation; however, when I compare my scans to hers, they are different and I wish there would be good radiologist or ENT to say whether or not my ligaments are responsible for my symptoms or something else? Also, I have HMO insurance which makes it difficult to go to provider that I want, and out of state is difficult , too… I’m praying I could find answers .
Thank you so much again , I really appreciate your reply!!

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As you can see, my lesser horns are long. I also just noticed my styloid might compress some a nerve - glossopharyngeal, perhaps?

Hi hopehope1,

I remember seeing your CT scan pics the first time you posted. Because the stylohyoid ligaments attach to the lesser horns of the hyoid bone, it is very difficult to say whether your situation is calcified stylohyoid ligaments coming up from the lesser horns of the hyoid (as opposed to down from the tips of the styloids), or if it’s actually elongation of the lesser horns. It is my non-medical opinion that what you’re seeing is calcified stylohyoid ligaments not extra long hyoid lesser horns.

Quick review of the definition of ES - Eagle Syndrome is 1) elongation of the styloid process(es) OR 2) calcification of the stylohyoid ligament(s) OR 3) a combo of the two.

Your diagnosis of ES would still stand if you only have calcified s-h ligaments but not elongated styloids. If you want a solid, educated opinion, send your CT scans to Dr. Samji, have a phone consult w/ him, & hear his opinion. He’s done close to or more than 400 ES surgeries now. He does not fully trust the radiology reports so always reads the CT scans himself. What he says isn’t necessarily “gospel”, but it’s likely to be a far cry more accurate than that of doctors who don’t regularly deal with ES. I have heard that he will refuse a phone consult in situations where he feels he cannot help. Thus, he will not waste your time & money if your situation is beyond his scope of knowledge or ability. Here is his contact info - lauren@caminoent.com.

I understand the benefits & frustrations of HMO health insurance (been there). They will approve care outside of their network when absolutely necessary. It just takes lots of jumping through hoops. This may be where your situation falls.

Sending up prayers for you & sending hope that you find a good doctor soon.

:hugs:

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The styloids do look quite angled, as well as being a bit longer than they should be- so that could be causing symptoms, compressing nerves as you’ve asked. And the hyoid horns look long too, like we’ve already said…I think it would be very hard to tell whether it’s one or the other causing symptoms, or both! But definitely worth getting an expert like Dr Samji to look at them & give their opinion. We’ve not had many on here with hyoid bone syndrome unfortunately for you.

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