I hope that you heal well from surgery, Snapple, & God bless 
Thanks Jules!
Yesterday my swelling turned the corner and I didn’t even have to ice. The tongue thing is slow to change which is frustrating so I hope that passes soon. The pain is not bad and I am down to 1 painkiller a day…mostly just one in afternoon as I try to have a clear brain so I can accomplish things. 
Has Isaiah given you some tips for tongue exercises/ stimulation? she had to do that after one of her surgeries, might be something you can try when you’re healed?
No she hasnt yet. great idea. I hate sounded like Im drunk when I talk.
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Oops! Sorry I didn’t think of that myself, Snapple…I’ll send you the videos of the exercises so you can start them ASAP. They’re very simple.
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Hi I’m based in NZ - currently looking for a surgeon. How are you getting on?
Hi Gina.
Welcome to the group. I’ll get my surgeon details and add those here later this morning.
Life has been pretty normal since my op. All the symptoms I had before have completely disappeared. I occasionally get the ocular migraine and my TMJ joint still has issues from time to time but everything that was associated with the eagles has now stopped.
My tongue took about a year to recover from the surgery due to the clamp they used in surgery but that was it.
How are you doing?
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@Gina1961 - These are the two ES surgeons we have on our Doctors List for NZ:
•Mr. Kevin Smith, Otolaryngology Head & Neck Surgery Specialist, Auckland - https://headandneckservice.co.nz
•Dr. Charles Davis, Plastic & Craniofacial Surgery - https://charlesdavis.co.nz
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Hi there
My surgeon was Mr Muammar Abu-Serriah - at the same offices of Mr Kevin Smith …
:).
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Hello and thankyou! Great about your surgery results.
I’m finding the forum a little difficult to navigate - I keep on losing where I am .. are you based in NZ?
Cheers
Gina
Hello!
Thankyou for your reply and info about the surgeons. I have been told to go to Dr John Chaplin over Kevin Smith by another Auckland based ENT as I have stylojugular syndrome - not sure why he preferred him but I’ve read Kevin is very particular who he operates on because of the risks which is quite scarey.
I discovered I have styloids accidentally as I had a CT venogram which showed the compression of my jugular between my C1 which has instability and styloids. Dr here was looking for the missing piece after I had jugular ultrasound etc.
Looking on the forums there is no mention of John Chaplin although he is a leading head/neck surgeon. I have sent my notes through to him, Kevin Smith and Michael Elliott but I have not heard back from Kevin or Michael yet - I have a Tele consult with John next week.
Michael Elliott is mentioned constantly on the ES forums but has a longer wait list than John Chaplin which is disappointing - although I guess another two months for the right surgeon is sensible … although I’m going mad as my major symptom is tinnitus that wakes me all night and has done for 18 months now - hopefully the prolotherapy will pull the c1 back a bit and make it more bearable. The dr here (USA - long story) has recommended a double styloidectomy but I’m reading online that most surgeons only do one at a time. It has been a steep learning curve over the past three weeks.
Where are you based in NZ? Who did your surgery? Did you have compression of your jugular vein?
Cheers
Gina
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Hi Gina
Arghh what a palaver. Sorry!!
My surgeon was Mr Muammar Abu-Serriah at the same offices as Mr Kevin Smith.
He was very good and I was operated on within 5 weeks of diagnosis. In reading this group etc. some people really struggle to get taken seriously by doctors. It is such a shame - so I consider myself very fortunate. I did struggle with my symptoms for a number of years (and never went to the dr cos they would have said “you’re fat! That is the cause of everything!”).
I’m not sure whether I had compression (I never really got tested for that) but I was passing out regularly, had severe nausea, loss of vision, dull deafness sensation in my right ear (like I had been hit on the ear), tinnitus and I couldn’t turn my head more than 2 or 3 inches.
Mine was found accidentally when I was having a CT scan for my TMJ issue.
Within hours of my op, I could move my head completely.
I had an internal styloidectomy (went through the inside of my mouth - eeek scary) which was better in terms of scarring but honestly - I was terrified.
Having gone through it - having one side done at a time I think would be better (although you get it over and done with in one shot). But it is a big operation and from what I’ve seen, double (even if external) is a big deal.
I had ossification of the stylohyoid ligament (styloids weren’t elongated) on the right side but I’ve been told, most likely it will recur on the left… time will tell.
There are very few surgeons that have the experience with this as it is rare. I was lucky with my surgeon. Not sure if he’d done it before but after my surgery, his fellow surgeons asked him to share what he’d done etc.
Happy to share what I know and my experience etc. I hope you get scheduled soon so that you can get a reprieve from the tinnitus!!!
Ashleigh
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Thanks Ashleigh. You’ve made me feel more confident about the whole thing - I can’t wait to get the operation done and get my life back hopefully - I miss sleeping 
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Good luck Gina. Feel free to reach out … Happy to help!
Ashleigh
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@EagleEye20 - I’ve added Mr. Muammar Abu-Serriah to our Doctors List. We’re happy to have another doctor listed for NZ.
@Gina1961 - If you end up having surgery w/ Dr. Chaplin with a good outcome, especially because you have IJV compression, we will happily add him to our Doctors List, too.
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Thank you Isaiah. Apologies should have sent that ages ago
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I’m so glad you got an accurate diagnosis & have been sent to a surgeon who may be able to help you especially w/ the C1 instability, stylojugular syndrome, & elongated styloids. We have an increasing number of members with that combination. It’s very important to see someone who’s experienced with the surgery so you have the best possible recovery.
It’s great to know that you’ve gotten an appt. w/ Dr. Chaplin even before Mr. Smith & Prof. Elliott have replied to you. I hope you’re able to get a second opinion from Mr. Smith since he’s closer to you.
We’ve had members who’ve tried prolotherapy, but it didn’t help much. It seems for those who have unstable cervical spines, Atlas Orthogonal Chiropractors have been more helpful, but it can be hard to find those who have a lot of experience.
There are no doctors in the US that we know of who will do bilateral styloidectomy & IJV decompression surgeries. One doctor in Turkey does them routinely though.
I had bilateral ES & two surgeries, one for each side (2014/2015 - Dr. Samji). It wasn’t until 9 years later I had surgery (2024 - Dr. Hepworth) to have my left IJV decompressed as it was missed first time around. I was in California when I was initially diagnosed w/ ES & had my surgeries. My husband & I moved to another state earlier this year.
I hope Dr. Chaplin is able to help you & you can have surgery ASAP so you can begin recovering. 
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I’m really glad to know you’ve had such a good outcome from your surgery, @EagleEye20. Having a few residual symptoms seems pretty normal with ES. For me, they are a reminder of how far I’ve come since my initial diagnosis of ES. I am very grateful to be doing so well now. 
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Thankyou - I tried replying to your individual points but it got returned
Thankyou I will let you know