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Eagle Syndrome - Online Support Group

Finding ES doctor in California


#1

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.


#2

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.


#3

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!


#4

Hi @Hirocooper,
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.


#5

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.


#6

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.


#7

Hi @Hirocooper!

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