2nd Opinion

I think I read in the meriad of posts here there is a doctor in the US that can do phone call consultations. If so, can someone pass that information my way? Please and thank you.

Hi Rosemary!

We know of several doctors who do phone consults. I will list them in the order of ES surgical experience.

Dr. Hussein Samji, San Jose, California - (408) 227-6300 http://www.caminoent.com/professionals/drhussein-samji-camino-ent.html

Dr. David Cognetti, Philadelphia, Pennsylvania - (215) 955-6760
https://hospitals.jefferson.edu/find-a-doctor/c/cognetti-david-m.html

Dr. Donald Annino, Boston, Massachusetts, (617) 525-6500, Donald J. Annino, Jr., MD, DMD - Brigham and Women's Hospital

You should be able to get a phone appointment with one of those doctors. Please let us know if you need more names.

Cheers, thank you for that. The more I read, the more Dr. Park in Korea seems to have made a correct diagnosis.

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If you can give me his office address and phone number, we can add him to our list of doctors in other countries. Many doctors seem to know about Eagle Syndrome but fear doing the necessary surgery to help their patients because they feel it is too dangerous. Thank goodness there are those doctors who have been trained to work in and around the skull base and are able to help us!

Dangerous…? Because of where the bone is located?

Dr. Samji doesn’t have a profile page anymore. I will try calling Dr. Annino and Dr. Cognetti when they are open .

Dr. Samji still has a profile page. On the Camino ENT website you have to click on “About Us” then on “Our Team” then on “Doctors” then on his picture before you get his profile info.

https://caminoent.com/bio/hussein-samji-m-d/

Heya, thanks for the information on 2nd opinion options in the state. I went to my regular ENT today for allergy medication and he actually gave me a 2nd opinion cheap as chips when I told him qbout the diagnosis. After I told that, he checked my throat, said he might have felt the styloid process, and to go get a CT Scan to confirm it. When I told him it showed up on the CT Scan, he was like “oh… okay.” And nodded. I took that as him confirming the diagnosis without directly saying so. Legally covering himself or whatever.

Anyway, I did call those 3 ENTs you recommended and got some information you can use to pass on:

Dr. Annino isn’t the best to get ahold of. I got the run around and played phone tag with some people. I gave up.

Dr. Samji office confirms he still does it, but it is 500usd for him to do a consultation and they email you forms to fill out.

Dr. Cognetti’s office said he can do it with a copy of the CT Scan and the doctor’s report mailed to him. The receptionist isn’t sure how much it would cost, but it would fall under self pay/ uninsured. I tried to google the self pay costs in Pennsylvania and got results for it being 129usd for a hospital doctor check up. Not sure it thag is what Dr. Cognetti would charge though.

Hope this information is useful

Rosemary

Thanks for the info…have you decided who you’ll see/ get a phone consult with?

No, because my regular ENT ended up doing it for me.

However, had he not done that, I would have gone with Dr. Cognetti.

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I’m glad you didn’t have to spend a lot of money to get a second opinion, @Jules semary. Do you have someone in your country who can do surgery to shorten your styloids?

Thx for the information about the doctors. We knew about Dr. Samji’s fee & requirements but not about Dr. Cognetti’s fee. Hopefully we’ll learn what he charges for a consult at some point. His surgical fee used to be $30,000 USD, but I don’t know if that’s changed.

Whoa, that’s a lot.

I went to my ENT at Soochung University Hospital. He said styloid process bone is 25mm, so too short to warrant surgery, but is concerned about it causing so much pain and poking the nerve that deals with my jaw and mouth. Nuetronin is working very well with it, so he doesn’t want to do surgery.

He did referr me to a dental specialist up in Seoul at Yongsei Severance Hospital, the second best hospital in the country. The dentist will review everything and determine if I should do the surgery or pursue other treatment options.

This is Dr. Park’s information at Soochung University Hospital. He should be added to the list of doctors who can work with ES patients.

https://www.schmc.ac.kr/cheonan/doctr/home.do?key=2945&doctrNo=639

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Thank you, Rosemary! ES surgery is major surgery & needs to be done by a surgeon with much experience in that area of the neck because of all the nerves, vascular tissues, muscles, & ligaments in that area. That’s part of why it’s so expensive. Most surgeons will reduce the cost for people who do not have insurance to help pay for the surgery.

i don’t know if Dr. Park noted whether you have calcification on your stylohyoid ligaments. Some people have normal length styloids but their s-h ligaments below the styloids calcify. When the s-h ligaments calcify (even if the styloids are normal), a person can still have the same symptoms as though the styloids are elongated. You might want to check on this possibility.

I’m glad the neurontin is helping you. As long as it does, then surgery can wait. It’s only when the symptoms are so bad and uncontrolled that your daily life is affected that it is time to consider the surgery.

Thank you for Dr. Park’s information. I’ll put him on our doctors’ list ASAP.

:blush:

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So, I was grossly misdiagnosed with Eagle Syndrome by Dr. Park in Cheonan, South Korea after all. When he sent me to a dentist up in Seoul in July, the dentist laughed at the diagnosis because it was so wrong. I showed no calicfication anywhere around my styloid. I got circled back to Dr. Park in August, who again misdiagnosised me with Eagle Syndrome. A neurologist I saw right before Dr. Park was worried about the lump in my neck that turned out to be an inflamed lymph node because it seemed to be compressing a nerve. The inflamed lymph node was on the CT scan Dr. Park did, but he admitted to me he ignored it and said nothing else fit my symptoms besides ES and that I absolutely must have surgery now, when in July he recommended not having surgery

He sent me an ENT in Seoul, who said it was clearly something wrong with an inflamed lymph node in my neck because it’s twice the size it should be and wasn’t draining. She said I said no ES symptoms as the styloid showed no signs of calcification.

Long story short, the nerve pain was caused by a blocked lymph node compressing it and that blockage was caused by cervical misalignment. Once I got my neck realigned, nearly ALL my pain is gone, nerve pain gone completely, and just dealing with a little bit of inflammation in the lymph node because it was blocked for months.

Please take Dr. Park off your list of Eagle Syndrome doctors. He’s not a good doctor to treat patients with such a rare ailment.

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Thank you for the information, Rosemary. I’m so glad your symptoms had an easier cure than having major surgery. I’m sorry Dr. Park didn’t end up knowing what he was talking about & caused you to need other appointments to get an accurate diagnosis.

I will make sure Dr. Park is not on our doctors list. Really appreciate yoir input & am so glad you’re feeling good again.

:hugs:

So frustrating to have been given all that worry over a lymph node, & very unusual for a doctor to diagnose ES when it wasn’t, usually people have to fight for a diagnosis…very pleased that you got things sorted now and that your pain’s gone!