Old Discussions from US Doctors Familiar With ES

This may have been covered in a past post but I have been dealing with symptoms for several years when finally a friend of mine whom is a dentist told me I could use his 3D scanner on a hunch and ES was confirmed. Does anyone know of a doctor that can perform surgery in Las Vegas???. I went and seen Dr. Scott Manthei (on the list) and he was very knowledgeable but he stopped performing the surgery several years ago.

All the doctors that we know of who treat ES are on the list, so unfortunately if Dr Manthei isnā€™t doing surgery any more, thereā€™s nobody else that we know of in Nevada. Your best bet would be to consider travelling either to Dr Samji in CA or Dr Milligan in AZ if thatā€™s possible? Dr Samji does phone consults, not sure about Dr Milligan.
Thanks for the info about Dr Manthei though- does he still diagnose ES patients do you know? If so Iā€™ll leave him on the list & make a note that heā€™s not doing surgery.

Hi Bigb77991 -

Weā€™ve had several members in NV over the last few years whoā€™ve had to go out of state for surgery as Jules mentioned. The two doctors she named are two of the most experienced ES doctors on our list. If thereā€™s a chance you have vascular ES then Dr. Hepworth in Denver is the one to see.

Thank you for your input Jules and Isaiah, I really appreciate it. Fortunately, I do not really have the vascular issue but I do have vertigo, ear fullness, jaw pain, pulsating tinnitus, fatigue, facial tingling, vision issues, migraines and all Of my symptoms are on the right side where the elongation is. Left side is normal length. Dr Manthei does still do the diagnosing for patients but no surgery and very helpful and friendly. I am going to try for Dr Samji because he takes Tricare insurance, as I am active duty military. I was hoping for Dr Osborne but unfortunately he does not take my insurance. Fingers crossed.

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Actually, many of the symptoms you just listed are signs that your internal jugular vein is being compressed. It may be sandwiched between your styloid process & your C-1 or C-2 vertebra. Often, just having the styloid removed takes enough pressure off the IJV that it can reopen & the symptoms will stop, however, we do have some members whoā€™ve needed to have a stent placed in the IJV to help it stay open after ES surgery. .

It would be wise for you to get a CT with contrast & with your head in the position that causes your vertigo/migraines/tinnitus/visual changes to worsen otherwise the scan may not show your compression. You will need to request that the doctor who refers you for the CT makes the head position recommendation as you wonā€™t be able to ask for that when you go in for the scan.

Dr. Samji did my surgery & my results were great but we recently had a couple of members who had IJV compression & had to have revision surgeries after seeing Dr. Samji.

ES surgery is major surgery so itā€™s a good idea to know thoroughly whatā€™s going on before committing to surgery.

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I see that there is a doctor from Billings Clinic in Montana listed. I am currently being seen by a different ENT there. While he knows about ES and recognized the symptoms to think to look for it when I saw him, he informed me that no one in Billings does surgery for ES patients so I donā€™t think the doctor listed does surgeries. Just thought I would mention that. Iā€™m grateful that at least some of the ENTs at Billings Clinic are knowledgeable about ES though and know what to look for to diagnose it.

Thanks for that update, a shame that they donā€™t do surgery, Iā€™ve put that on the list.
Are you going to try to see someone else for surgery?

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Ideally, if I could get into Dr. Hepworth that would be great as Denver is only about an 8-9 hour drive from where I live, I have family in the area, and heā€™s in-network for my insurance. I know he has a lot of patients already though so weā€™ll see. I havenā€™t tried contacting his office yet though as the last week or so just finding out about all this has been a bit of a whirlwind and Iā€™m trying to get my bearings a bit.

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Hi Becc87

You may be interested in this post by @245brez who did have surgery done by Dr. Byorth in Billings about a year ago. Youā€™ll need to scroll to the top of the thread to see what he wrote. We havenā€™t recenlty heard how heā€™s doing, but thatā€™s often a good sign as people who get good results go on to live their lives & donā€™t hang out here anymore after recovery.

Hmmmā€¦thatā€™s weird. Billings Clinic ENT is big for Montana but not that big. Dr. Horrell, as a colleague, should know if someone in his department does that. I see Dr. Horrell again on the 15th so I can ask then or I may send a message before then.

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I would let Dr. Horrell know that youā€™re aware of someone for whom Dr. Byorth did ES surgery & see what he says. In the meantime you could send a private message to 245brez by clicking on his screen name as it appears above one of his posts. That will take you to a page where you can type a private message to him to ask about his experience w/ Dr. Byorth.

Missouri:
Dr. Randal Paniello, Specialty: Otolaryngology; Barnes Jewish Hospital, St. Louis, MO
https://doctors.bjc.org/wlp2/barnesjewish/doctors/info/AKT0045E/Randal-Paniello-MD

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Thanks for the doctors name @Dakotank; do you know how many surgeries heā€™s done? Weā€™ll add his name to the list if all goes well for you!

Iā€™m not certain. I just saw him for the first time this last week. Heā€™s doing my surgery next Friday the 29th.

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I am wondering how you like Dr Arnold after your surgery in Miami. I have vascular ES and suspect the jugular is compressed against the c-spine. Do you think dr. Arnold is familiar with a surgery involving trimming the transverse process of c-1?

@hangtime hasnā€™t been on for a while so may not replyā€¦unfortunately there arenā€™t many doctors who will do the C1 process as well, itā€™s nowhere near you but Dr. Peter Nakaji does: 755 East McDowell Rd., Phoenix, AZ, 602-521-3201, Works w/ vascular ES, has also done a research paper about shaving C1 process as well as styloidectomy
https://doctors.bannerhealth.com/provider/Peter+Nakaji/1103456y_source=1_MTQ4NjU5MDktNzE1LWxvY2F0aW9uLndlYnNpdGU%3D

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@Gardener

Dr. Bunnell in Jacksonville might be an option for you. He has helped some of our members who I believe had vascular ES. He doesnā€™t work on C-1 as far as I know.

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What is the C1 process?

Hi @HannahM - See image below for answer to your question:

TPs of C-1

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Weā€™re finding more members who have their Internal Jugular Vein compressed between the styloid process & the 1st cervical vertebral process- sometimes removing the styloid is enough to remove pressure, but some members have needed the C1 process shaved a bit as well.

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