Finding ES doctor in California

Hello, I’m in California and a Kaiser member. I’ve been to 2 ENT’s within the Kaiser system in the Bay area, one of which supposedly has had ES patients in the past. After confirming that i do indeed have ES via radiograph, CT scan and “jump test”, in listing my symptoms to the doctor, I still get responses like “I’ve never heard of that before” or “there are lots of other things that can cause that” despite the studies out there. I am in the medical field as an occupational therapist and have an understanding of anatomy and physiology. I work with stroke patients and have concerns of “vascular ES” . I was primarily concerned about how close the styloid processes were to vascular structures. We discovered the left styloid is very close to the left carotid artery. Not quite touching but nearly. The right is also close. The doctor said it would take "a whole lot of pressure " to occlude or impede blood flow. He also stated that the styloids may or may not continue to grow. I’m not confident in his thoughts primarily because of the manner to which he reacted to my described symptoms. Does anyone know of a doctor regardless if they are in Kaiser system in California ? I am bothered a lot with my symptoms but do not want to do surgery until they are unbearable. If the prognosis is a risk to vascular or nerve structures however, I will consider surgery right away.

Hirocooper - You’re in luck & not in luck. The best ES surgeon on the west coast is in San Jose, however, he’s not a Kaiser doctor. His name is Dr. Hussein Samji. People come from all over the country to see him. You can email his medical assistant Kim Elliott if you’d like to have a consult - kimberly @ camino. ent. com (spaces are added so the site doesn’t block the email address). Dr. Samji will want a copy of your CT scan & the written report ahead of time. There have been several Kaiser patients who’ve gone to him for ES surgery for the reasons you’re stating - no level of knowledge of ES in the Kaiser system.

I do have a friend (Fidelia Butt) who’s an experienced ENT surgeon in the Kaiser system. She has done ES surgery but only does it intraorally (i.e. through the throat). Though the intraoral approach can be helpful, the external approach (through the neck) allows the styloids & stylohyoid ligaments to be more completely removed which helps prevent the chance of regrowth. This approach also allows for monitoring of the nerves & vascular tissues in the area so they can be minimally irritated during the styloidectomy.

The forum members who’ve gone through the appeal process w/ Kaiser to get them to pay for an outside surgeon to do this surgery have found it difficult to impossible to get Kaiser to support them. seamom was one who ended up paying privately & georgiagirl was another. seamom in particular did a long battle w/ Kaiser. You could email her privately to see what was the final outcome for her.

Dr. Samji did both of my surgeries (2014 & 2015). I also live in the Bay Area. I was very thankful to find such a competent doctor w/ a great “bedside manner” so close to home.

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Fantastic information! Thank you very much. I would imagine it’s tough to fight Kaiser particularly with a staff ENT that has performed an ES surgery before. The argument would have to be very strong with persistent effort and even with all of that, likely not to win. I will try and contact the members you listed. Thank you again, your reply exceeded what I had hoped for!

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Hi @Hiroc,
Hang in there. I just want to say - your life is more important then Kaiser’s permissions. I was lucky that Premiere Blue Cross considered Dr. Samji part of their network, but I only found out while scheduling surgery.
If you are asked to circle happy faces on a form for how you feel - circle the worst one.
Eagle Syndrome doesn’t happen suddenly. You don’t realize how many things were being messed up until after surgery.
One of my ‘carotid bodies’ was destroyed while waiting. Considering that it’s attached to the Carotid Artery like a sort of knee pad looking thing; my poor right carotid body basically “took one for the team”.
Your doctors don’t know what they don’t know. It’s an age of where opinions without experience are listened to. You will need to be the voice of reason in the midst of people not doing their job. My sister is a nurse with Kaiser in WA state. She’s told me before when I asked her for someone else that there it a protocol. Personally if I were in your shoes I’d get an attorney just to help navigate their system the moment you feel you are not being heard. I would ask for the full name of any person who gives you answers from Kaiser. I would document everything from the beginning. I kept track with an iPad organizer software. It’s amazing how people will check their facts when you know their name. It’s amazing how people will do their jobs when the boss gets a letter with legal letterhead.
BTW many institutions have a role to handle hard copy mail sooner and more efficiently than email. Many institutions have rules to keep the hard copies on file yet dispose of email. If I were you I would do both.
I’d also keep track of direct quotes of what you were told. This is the fight of your life.
You have my permission to be selfish lol.
Do what you need to get the help you need. I’d also ask an attorney for advice on how to handle getting the surgery in a way where you are compensated by Kaiser since you didn’t have time to wait for their nonsense.
Hang in there. I will pray for you.

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Thank you so much for your advice. Documenting everything is definitely an important point. Consulting an attorney is a good idea too. I can anticipate that I will have to have a very strong case for requesting a non Kaiser physician.

Hi there MusicGeek!
Is Dr Samji in San Jose? I’m feel very discouraged with the Kaiser Dr’s I have been to. I have discomfort daily, not to the extent that others have with a few severe episodes that are becoming more frequent. I have to continue working and Im 58. I want to hold off on the surgery as long as I can tolerate it. What was your recovery like? Thank you for your help.

Hi @Hiroc!

Yes Dr. Samji is in San Jose :blush:

I am very sorry you are going through this, I so wish I was the last and final case.

My recovery shouldnt be compared, since the right side ES bone was broken and or fractured and had been causing abrasive damaging on the inside for four years.

I’m making a huge edit, because I thought this was a private messae.

I can tell you that even with that, I had improved greatly. Both my husband and son have brought up different surprises of my current abilities and lack of acting like I was in pain, when I didn’t think it was very noticeable. Just yesterday a neighbor friend I see when I walk to the park confided that she was so happy I was “so much better” and that earlier she was very afraid for me.

I could not work after surgeries. For me there was about a month afterwards to get better for the left side without the break.

Hang in there, I’ll keep praying for you.

  • Musicgeek

I have Kaiser also. I live in Vacaville and am having surgery in about a hour at Kaiser in Sacramento. My neurosurgeon is Dr. Brian Jian. I will be his 7th E S. surgery. He works with a ENT named Dr. Ballou. They will both be in the O.R. He will be removing both the styloid externally.
Hopefully this will help.

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Hi Ilovemaui
I have been praying for you. How are you feeling?

I am well thank you . I appreciate your prayers and concern. I am able to keep many of my symptoms at bay as I avoid particular movements and have adapted my sleeping positions. I hope you are doing well .

I am glad. How was your surgery at kaiser?

Hi Hirocooper,

Glad to hear from you! How wonderful that you’ve been able to manage your symptoms w/o surgery. I hope that will continue to be the case for the long-term.
Thank you for sharing what is working for you.

:relaxed:

Hi There! Hope you are well. I never did have a surgery at Kaiser. Frankly, it would take a lot to convince me that a Kaiser doctor would be experienced enough to do an Eagles syndrome surgery. I have had a couple of unpleasant experiences already with 2 different ENT’s. Im hoping to find some new research out there but I imagine rare conditions don’t get a lot of research consideration. I am mostly concerned and curious to find out if the condition progresses and how it progresses. If anyone has any resources, I would be grateful for anything you would like to share with me.

I don’t think I’ve ever seen any research about progression, only a bit about causes. Which are neck trauma, tonsillectomy, metabolic disorders. Ageing is thought to affect ES too, maybe degenerative changes alter the angle etc.
From what we’ve seen on here, the majority of members do seem to get surgery done, although that’s the ones who join in with discussions, there are alot of members who read discussions, but don’t post, so we don’t know what happens to them.
Sorry to read about your experience with some ENTs; a shame if you’re not able to go out of Kaiser.

Hi Hirocooper,

Because our bodies are constantly repairing, they sometimes lays down calcium to “shore up” an area they feel is weak. When that calcium is in an area of mobile soft tissue, then restriction & pain result. There is always the chance the body will continue to lay down/build up calcium in that area if the brain gets a signal that it’s needed.

The progression of ES, as I see it, is further elongation of the styloids &/or calcification of the stylohyoid ligaments which causes more irritation to the cranial nerves in the area & risks permanent damage to them. It can also eventually cause vascular compression if it isn’t already causing a problem there & then worse symptoms will begin occurring.

If your symptoms are stable & the things you have been doing to help keep yourself comfortable are still helping, I think you don’t need to worry about progression at this moment. If your symptoms begin to worsen or new ones crop up, then you should pursue more medical help & perhaps surgery.

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Thank you for that valuable information. It’s very interesting and thank goodness I dont experience the relentless pain that some people experience. Howevever I believe I do have an increasing in frequency of intense localized pain episodes where I had none before. The tinnatus in the ears has been going on for years but seems to be consistently louder and the feeling that something is sticking me in the throat is replicable whenever I sit reclined and is more uncomfortable than it ever has been. This makes me somewhat concerned it could progress into the debilitating pain that others have… It seems difficult to know really because I don’t know how long the styloids have been in this condition. One never knows about elongated styloids until the symptoms present right?. I had my tonsils out at 18, 40 years ago, is that when they began to grow ever so slowly and does it mean they will continue to grow?.Well, it makes for my own research I suppose! As you mentioned, if things maintain as they are, I can compensate and use the strategies I have been using with the exception of the intense episodes of pain that can happen unexpectedly. So far they last about 2 minutes. But I will take that and deal with it for as long as I need to as.surgery will be a last option. Thank you for listening to my ramblings!

@Hiroc,

You know your body best. I do recommend you not wait until your pain is debilitating & you feel overwhelmed & dysfunctional to decide on surgery. That’s not to say you should have it now, but just don’t be so dismissive of symptoms that you get to that point. Hopefully you will never need surgery. A few people on this forum have gotten by without it. :blush:

Thank you Isaiah. I suppose its fear I express. Fear of surgery and fear of what lies ahead. I dont stay in that place however. I will carry on and hope and pray for the best. Thank you for your compassionate advice. Best wishes for everyone on this site.

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Good job! Hope carries us through a multitude of difficult circumstances & often helps us become victorious in the end!

Hi I just had surgery two days ago, wondering how you’re feeling and how long ago your surgery was?