Hi all,
I’m a new member and have just heard the phrase Eagle Syndrome first the first time last week when my ENT was reviewing my CT scan. Apparently my left styloid is 5.6cm, the right is 4.2cm and both stylohyoid ligaments are severely calcified.
About about my story… I’m 37 years old and have no prior history of head/neck trauma or surgery. I did have a TIA 18 months ago after a chiropractic neck adjustment caused left sided weakness, temporary vision loss in left eye, and word jumbling. I have had occipital headaches since I was about 17, worsening as the years go by. The last 2 years have been debilitating, I also have pain in left jaw/ear when opening my mouth, trouble swallowing, dizziness, pressure in my head, and severe upper cervical neck pain.
In September 2020 I saw my GP who did a neck x-ray (normal), brain CT (normal) and thyroid ultrasound (small moderately-suspicious nodule seen). Referred to ENT who was not concerned with thyroid nodule but ordered a neck CT with contrast to rule out a parapharyngeal tumor. Results showed no tumor - but elongated styloid processes and calcified ligaments. ENT said “I think you might have a thing called Eagle Syndrome”. As I’m a nurse, he told me to research it and let him know if I want a referral to another ENT who may or may not operate on it.
Here’s the thing… I live in Ontario, Canada. I have read almost every post on this site, plus from other resources and can’t find a huge amount of proof that Canadian doctors are skilled at doing a proper styloidectomy. I know there are a few success stories out there but if I’m going to get this surgery done, I want it done by the best possible doctor out there. I also don’t want to wait for 8-12 months to see another ENT, only to be told they won’t do it. My research is pointing me towards Dr Samji in San Jose, CA.
My question is for non-US citizens… has anyone been able to have surgery done by a US doctor? What does Dr Samji (or similar experienced ES doctors) charge for a styloidectomy? Did your home country insurance pay for part (or all) of it? And what was the waiting time like?
Though I can’t answer the questions about other Canadians having surgery in the US or outside of Canada, I can answer some of your questions about Dr. Samji. You would need to send your CT scan to him (he prefers w/o contrast, but I believe will accept them w/ contrast if that’s all that’s available) & schedule a video appt. (about $650 USD for a 45 min appt). After that appt, if you decide you want him to do your surgeries (he requires 2 surgeries for bilateral ES - one for each side spaced 3 mos apart at the minimum), you’ll most likely be able to schedule it w/in about 3 weeks of your consult. As far as surgical cost goes, I did research on that about 6 years ago for another international member. At that time, his cash price for surgery was about $10,000 USD per side (twice that if medical insurance was used). I’m sure the price is higher now. There are additional charges for the surgery center he uses & for the anesthesiologist. You can email his medical assistant to inquire about the cost for a cash paying patient. Silicon Valley Surgery Center is where he does the majority of his surgeries - https://siliconvalleysurgery.com/?utm_campaign=corp_listings_mgmt&utm_source=google&utm_medium=business_listing&com.dotmarketing.htmlpage.language=1
We do have one member who lives in Canada who was planning to see Dr. Samji for surgery, but I haven’t heard from him in a long time so don’t know if that ever happened.
If you do consult w/ Dr. Samji it is important for you to request complete removal of your styloid processes & calcified sections of your stylohyoid ligaments as any calcification left behind could potentially cause future problems. No doctor will promise a perfect outcome.
Dr. Samji’s mentor, Dr. Damrose at Stanford University Hospital is also an excellent surgeon. You might want to consult with both of them and compare costs.
Wow thank you so much for the information, this is incredibly helpful! I will make sure to contact Dr Damrose as well. Interestingly, I had a call this morning from Dr. Witterick in Toronto who had a cancellation for tomorrow so I’ll start with him and get as many opinions as possible. Although, I think I read a post saying Dr Witterick doesn’t operate on ES anymore… Either way, it is a start. I’ll let you know how I get on.
Well I feel like my appointment was a bit of a flop. I didn’t see Dr Witterick, it was one of his Fellow’s, Dr Glickson. He was very dry and not very personable so it was an awkward meeting. I told him all of my symptoms and he just said, “what is your number one complaint today”. I tried to tell him I have a variety of symptoms but he only seemed interested in the jaw pain. I told him my main problem was the daily headaches.
He looked at my CT and confirmed the ES diagnosis and said because of my symptoms and the length of my styloids I would likely be a candidate for surgery (but he needs to talk to Dr Witterick first because he isn’t sure if he is still doing surgeries). I asked if they would remove it to the skull base and he said no, they would just shave it down to normal length. I told him I read studies and heard personal stories that people have better outcomes if they are taken down to the base and he didn’t really say anything in reply. I also asked if these long styloids could be compressing on my neck vessels and causing my headaches and dizziness. He said no, he has never heard of that happening. I’m so confused!! He said to think about it and let him know in 2 weeks if I want to go ahead with it.
I also contacted Dr Samji’s office who replied very quickly, and yes I do need a CT w/o contrast as well as my radiology CD. I could have a phone consultation with him in 2 weeks for US$500. I think I will try and arrange that as I would like to get his opinion on the headaches and vessel compression. I’ll keep you updated with my progress, but for now at least I have a diagnosis and lots of thinking and researching ahead of me!
Hi Zoero, Dr. Glickson is wrong as you know from the information in this forum. Elongated styloids absolutely can compress either the internal jugular vein or carotid artery. There is much evidence in the scientific literature that talks about that. Perhaps you could try again for an appointment w/ Dr. Whitterick and ask him directly about ES surgery & have a discussion about complete styloid removal. Even normal length styloids can cause vascular compression if they are very thick or angled so just shortening yours won’t necessarily stop your vascular symptoms. You can peruse the links to the research papers as well as look online to find some that talk about vascular ES. Printing off a copy of even one to take w/ you to an appt w/ Dr. Whitterick or Dr. Glickson (should you see him again) might enlighten him/them.
Do bear in mind that Dr. Samji does not believe in “vascular ES” per se. ES is ES to him. What that means is just because vascular compression is a part of one’s ES symptoms, he still simply refers to the condition as ES not vascular ES. Some of our members have gotten into a tussle w/ him over the nomenclature in the past. It’s not worth it. I’m glad you’re considering a phone/video appt w/ Dr. Samji. It will be helpful for you to get your questions answered.
Such a shame the appt didn’t go as expected…I agree with Isaiah that the doctor was wrong- I was told that the styloids couldn’t compress blood vessels, & then had a CT with contrast which showed bilateral compression of the jugular veins! Lots of research papers on that…
Let us know how you get on & which doctor you decide to see. Sending you a hug
Sorry Zoero about your experience. This kind of response from doctors whom dont know much about Eagles is more common than not. He doesnt know what he is talking about so take it with a grain of salt.
Another member here paid about $13K for samji out of pocket I think but Im not sure what that all included. Dr. Samji did both my surgeries and I know Regence didnt pay anywhere close to these amounts. I will look it up.
I hate to say this but think of this as a negotiation of a car. You are saving the doctor and the surgery center $$ by paying cash and without the cost and hassle of submitting paperwork to insurance company for surgery. Calling in advance and asking for a cash price is always a good way to go. I would even call back and say that another facility and surgeon will do it for less and see if they would match it?
I looked up what Regence paid in Dec 2020 for my surgery. They billed out the facility fee (Silicon Valley Surgery) at about $23,000 US. The negotiated rate was $1883 US. That is a significant difference.
Samji billed out at about $6400 US, Negotiated rate of about $3800. pre-op appt billed out at $372. Discounted rate $190. Pathology $190. Anesthesia billed out at $3600. Negotiated rate was about $1700.
Feel free to quote these numbers to them as a starting point. I suggest offering Samji $5K and the surgery center $3-4K. Also do the same for Anesthesia ($2500?) as they are know for ripping off patients (this is in general not specific to this practice.) I hope this helps. It can apply to most any similar surgery. Depending on your income, many larger academic hospitals and most any surgery center will have a application for reduced fees depending on your income. Im not sure why it would not apply to you even if coming from out of country.
I will add, based on Snapple’s comments, that Dr. Edward Damrose (Dr. Samji’s mentor) works out of Stanford Hospital in Palo Alto, CA. If you’re considering a doctor in the US, Stanford is a teaching hospital, & might give you a better rate than seeing an ENT in private practice. Dr. Damrose is well acquainted w/ ES and has done surgery for several of our members.
Just wanted to update everyone who took the time to answer my questions. After having a few different opinions and consults I spoke directly with Dr Witterick in Toronto and he told me is very picky who he operates on for ES but given my scans and symptoms he thinks he can help me. He said he does about 1-2 of these surgeries per year with 75-80% success for full resolution of symptoms. I have been placed on his waiting list so it will likely be a long time due to covid suspending all non-urgent surgeries in Ontario, but at least I am on his list and one step closer to getting some relief. I feel confident in his abilities (he said he has done the most amount of these surgeries than any other ENT in Canada) so I know I’ll be in good hands. Thank you for all your suggestions, I will keep you posted with a surgery date when I get one.
That is FANTASTIC NEWS! I’m so glad Dr. Witterick will see you & is planning to do your ES surgery. Thank you for the information about his experience level. That’s good information for our members in Canada.
I hope there are cancellations or that somehow your case gets expedited so your wait isn’t as long as you expect.
I just wanted to give everyone an update on my journey. Almost 3 months after being told by Dr Witterick that he would do my surgery, I am still yet to have a surgery date. I called his office and was told once again (due to covid), there is likely still a year or two!
Fed up and in constant agony, I sent my images and list of symptoms to Dr Samji’s office and I just heard back that he approved me for a consult. Yay! If he offers me surgery, I then have to make the tough decision of whether I want to pay the huge bill to just get it done (and get it done correctly!), or if I should just keep waiting to have it done here and it would be 100% covered by insurance. My gut tells me to just get it done, but I’ll wait until I consult with him and see what vibe I get. I’m very happy to even get a consult!
Thank you for the update. I am so sorry for the long wait you’re facing, @Zoero! I think you will like Dr. Samji, but I know the cost of this surgery is quite high & without insurance can make it out of reach for many people. There is no price we can put on good health though. I’ll pray for you to know the wisest choice for yourself as you consider your options.
Ive heard mention of about $13-15K. Always try to negotiate a cash price in advance. Im pretty certain the negotiated rate my health insurance paid was $7-8K. He does his surgeries at Silicon Valley Surgery Center in San Jose, so you can call there too and ask for a cash price. Don’t forget to ask the same for the anesthesiologists too. Good luck Zoero
Thanks! So this may be a silly question but do I negotiate the price with him? Or with the billing department? I’m new to the US health care system so I’m not sure what the proper “etiquette” is regarding this.
That is a good question Zoero. I would start with the billing department & see what they say. It may come down to negotiation with the doctor, however. Snapple may have a better answer, though.
