Finding doctor for surgery - Need help advice/guidance

Hi All,

After 5 years of suffering , running through doctors recently I have been diagnosed with ES on both sides.

I reached out to Osborne and travelled to LA and had initial discussion and wanted to move with him. But due to some red flags like - The amount he is asking is close to 35k per side and also he doesn’t even have an operation theater ( that itself will cost 10k per side).Inspite having best insurance he claims I need to pay him upfront 75% upfront and then they would claim my insurance for the remaining 25% and if the insurance doesn’t pay I need to pay that as well. Is it the case with all doctors who treat ES ?

I started looking for alternative doctors in and around Bay Area and I reached the staff of Edward J. Damros and he is in the list of doctors. Has anyone recently had experience getting surgery with him? How is the experience and result.

If he can’t give me early appointment I will reach others as my symptoms are getting worst day by day. I don’t know what to do.

You can use the search function to look up different doctors & when people have seen them. I found this discussion about Dr Damrose you might find helpful:
My ES Journey - General - Living with Eagle
Dr Samji in CA is very experienced with classic ES, but not so good if you have vascular ES. Dr Damrose mentored him, & is experienced with vascular symptoms so if you do have those, it could well be worth the wait… There are other discussions about Dr Damrose you could look up too.
There have been discussions about Dr Osborne, who is very experienced, & the cost of surgery…again you can have a look for those.
We have had members ask to be put on a cancellation list for appointments and surgeries & are often able to get in quicker that way, so that might be an idea with Dr Damrose?
Let us know how you get on!

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Thanks Jules for the response. how do i know if my case is classic ES or vascular else? Is there difference in symptoms?

I am skeptical to go with Osborne - He is asking is close to 35k per side and also he doesn’t even have an operation theater ( that itself will cost 10k per side).Inspite having best insurance he claims I need to pay him upfront 75%( thats like approx 55k+ upfront) and then they would claim my insurance for the remaining 25% and if the insurance doesn’t pay I need to pay that as well.
Initially they said they are out of coverage for insurance but still his team says they will claim and did not say how much but expecting around 10k to be paid through insurance.

I am trying to reach damrose but they are very slow.

If i dont find anyone reliable in CA who accepts insurance , i am planning to reach Trevor G. Hackman( I read he accepts insurance).

Hackman is your man, but maybe scheduling a couple months out.

There’s info in the Newbies Guide Section about different symptoms & possible causes; if you have a read of that it does explain what vascular symptoms are in more detail (briefly, dizziness, fainting, head pressure, ear pressure, pain in the eyes, pulsatile tinnitus). Here’s a link:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Hope this helps!

Hi Makreto,

I have just seen your post. I live in the same area as you. Dr. Samji did my ES surgeries. He takes insurance, but as @Jules mentioned, he does not recognize, nor does he do surgery for vascular ES. He did my surgeries in 2014/15 (one for each side) with good results, however, I’m now scheduled for internal jugular vein decompression surgery w/ Dr. Hepworth in Denver at the end of Oct. because Dr. Samji left me w/ a compressed left internal jugular vein. He is an excellent surgeon for the non-vascular form of ES.

I’m not sure that Dr. Damrose does surgery for vascular ES either, but the people I know for whom he’s done ES surgery have had very good results. It would be worthwhile having a consult with him.

There are NO ES doctors at UCSF Medical Center so don’t look there, however, there is a good ES surgeon at UC Davis Medical Center in Sacramento:

•Kaicheng Lawrence Yen, MD, UC Davis Health Department of Otolaryngology, 2521 Stockton
Blvd, Suite 5200, Sacramento, CA 95817, 916-734-5400 tel, 916-734-6774 fax, Assistant/Receptionist - Ivy Hamilton, 916-734-1759, Kaicheng Lawrence Yen, M.D., Ph.D. for UC Davis Health

I hope this info is helpful for you.

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@Makreto & @Jules - I need to update my comments about Dr. Damrose doing vascular ES surgery. Someone who’s on the FB Jugular Outflow forum just sent me a message regarding a member of that forum who recently had vascular decompression surgery by Dr. Damrose. From what was posted, it sounds like Dr. Damrose did a meticulous surgery for the patient in question & observed the IJV open once the things compressing it were removed. A caveat to this happy story is that I personally know someone who had significant bilateral IJV compression who consulted with Dr. Damrose & was dismissed as having no need for surgery & no visible problems in the diagnostic scan. She ended up having both IJVs decompressed by Dr. Hepworth later on, plus a thyroidectomy. There seems to be no particular standard a given doctor is held to when diagnosing elongated styloids or vascular compression so opinions can vary widely. When one is symptomatic for either ES or vES it’s wise to pursue finding a doctor who is willing to do the surgery(ies) one needs to recover from the symptoms.

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It’s hard to keep track of doctors & who they will or won’t treat especially when members get different feedback :woman_shrugging:

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Here in i am attaching the images. Based on symptoms it is Vascular ES and i have been referred to stanford 2 weeks back and still they are reviewing or trying to get an appointment with DR.Damrose.

I am hoping to get at least appointment scheduled at least this week. Because getting appointment , review acceptance and surgery is like a big fight with big hospitals here in bay area.

I have also asked Dr.ross hauser team to send referral to Dr. Hackman.

I have recently met an ENT in Elcamino Mountain View and she doesnt want to discuss anything and says she doent have knowledge/expertise and dont wanna look at Scans also instead says never compression may not trigger tinitus / vertigo may be because of [

Benign paroxysmal positional vertigo (BPPV)

](Benign paroxysmal positional vertigo (BPPV) - Symptoms and causes - Mayo Clinic).

Most of the ENT’s avoid the topic altogether.

@Isaiah_40_31 If possible and if its ok for you will meet you in person before your decompression surgery w/ Dr. Hepworth . It would good to discuss and understand and get some expertise or guidance/support.

Thank you!

Your images didn’t get attached, @Makreto, can you please try again.

Dr. Damrose would be so much closer for you than Dr. Hackman & depending on what is causing the compression, surgery w/ Dr. Hackman might not be helpful. It would be better for you to see a doctor who specifically does styloidectomies & IJV or ICA decompression. Since we know Dr. Damrose is capable, it might be worth waiting to see him. I’m sorry to say this, but any experienced doctor you contact at this point is going to be booked out a month or more for a new patient so you will most likely have to wait regardless of who you see.

This is not surprising. I was very surprised to learn Dr. Damrose has ventured into the IJV decompression arena because he stood against it for so long. I’m glad he’s branching out & recognizing it’s a significant problem among ES sufferers.

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We have had a few members with BPPV alongside ES…

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