Hi there. Can you share with me. What is NSW?
I am in Canada I will be having both sides operated on. I have a head and neck surgeon, but no numerologist.
Hi there. Can you share with me. What is NSW?
NSW stands for New South Wales, which is a state on the East Coast of Australia.
Hi fellow Aussies,
I should also mention the wonderful Interventional Radiologist Dr. Jeff Parker from the Royal Prince Alfred, who has been very thorough in reviewing my case and was responsible for ballooning my internal jugular vein.
Apparently my ENT surgeon Dr. Michael Elliot presented my case to a conference of surgeons- none of whom had remotely heard of vascular ES before. Getting the word out can only be I good think I guess!
Hi @retrorock, and thank you very much for sharing the details of your doctors. I’m in Sydney and searching for a specialist. I’ve not had a formal diagnosis as yet - the calcified ligaments were picked up in an OPG scan by my dentist. I’m scared, but want to get moving with addressing this matter.
May I please ask why it was necessary to see two different specialists? In the first instance, should I arrange to see the ENT specialist? (Dr Elliott - he’s got a practice near my area too, which is great!)
I’d be grateful for any help right now
Hi there Kephera,
Thanks for reaching out! Sorry that you are dealing with this!
Dr Elliott has been my go-to surgeon and specialist. I mentioned Dr. Halmagyi because of the increased pressure in the brain due to the internal jugulars being restricted. As a neurologist, Brain stuff is more Halmagyi’s area. Also, Dr. Jeff Parker worked with me in administering pressure tests of the brain, but this was ALL organised by Dr Elliott, so he would be your best starting place. You will likely deal with Susanah on the phone- she is lovely. Will you be attending Crows Nest or Newtown rooms?
Let me know how you go- am most interested!
Mine was properly diagnosed via MRI and neck venogram ordered by Dr Elliott, btw. He will likely do this with you also. Any more questions feel free to ask away!
Feel free to mention my name to Dr Elliott (Ryan) as well. I have seen him about 5 times now! He might give you a discount!
Bless you! I really appreciate your prompt reply and the information you’ve shared, Ryan
I’ve just finished reading your other thread detailing your journey and surgeries, etc. So yes, now I understand better how your other specialists came into play.
I’ll be attending at Crows Nest hopefully, as I live only a couple of suburbs away on the Lower North Shore. As I don’t have private health insurance, I am concerned about surgical and hospital costs. I realise that other stuff will be covered - at least partially - by Medicare (I used to work for that crew ). May I please ask if the figures you quoted above are the total costs for surgery and hospital?
And how are you doing? I truly hope that your anxiety has lessened. I know that finding this forum has been a point of light for me, in a very difficult and turbulent time in my life…and I’ve only just arrived here! It does make a difference though, to communicate with others who are moving through a similar experience, or have done.
Thanks again, Ryan!
I don’t have private either so I feel your pain! In terms of costs for surgery, the only thing I have paid for (well, Mum and Dad to be precise!) is the removal of both styloid processes and half of my MRI (medicare covered the rest)
For the first surgery the costs were:
Dr. Elliott’s fee: $2000
Overnight Hospital stay: $343
For the second, it was the same except Dr. Elliott graciously offered me a 50% discount on his fee an anasthetic costs.
It all depends on how bad your symptoms are, and if it is Classic or Vascular ES. Everyone responds differently it seems.
Let me know any other questions you have!
I think Dr Elliott’s preference is to just do one side and see how you go
Thanks again, Ryan!
To be honest, I’m confused right now Symptoms I had put down to other issues over the last few years, but which I now need to reassess as potentially indicative of ES. Still, it will be good to know for sure and then hopefully the rest falls into place from there
I’ll keep you posted…although I’m sure there will be other questions too
May I ask what your symptoms are?
You certainly may, and I just need to figure out what’s what?!
It’s hard to know now what exactly should be attributed to ES. I do have regular shoulder and neck pains, with associated headaches - mainly cluster, but the occasional migraine. These have become worse in the last month, however could also be due to other stresses in my life at the moment.
I’ve had ringing in the ears for a long time, and can’t recall when I first noticed it. For the most part, it’s fairly unobtrusive, especially if my focus is elsewhere.
Reading through other threads here, I can say that I’ve experienced dizziness and head pressure at times.
I’ve been struggling with very dry throat on and off over the last year, coupled with an annoying tickling sensation that is alleviated somewhat when I drink water. As it came on after I had a cold last winter, I had considered it attributed to that but it’s still an issue for me from time to time, so maybe…? However it doesn’t feel like a foreign body in the throat, hence the uncertainty.
I don’t know that I can attribute all these symptoms to ES, which is the confusion I referred to in my last message.
Right now, next step, get a referral to see Dr Elliott
All those are common ES symptoms. There is a great thread on it here:
Doing this on my mobile so can’t hyperlink but just paste into browser
Thanks, Ryan. Much appreciated.
Yes, I see that I’ve been experiencing a range of symptoms…plus a few
more added to the list now, just for good measure!
One question I wanted to ask about your hospital stay please - how long
were you admitted for each surgery?
Of course, I do realise that it will depend on the individual, their
particular condition, healing response, etc. I’m curious and also sort of
planning ahead. If ES is confirmed, based on what I’ve read, I’d actually
like to proceed as quickly as possible into surgery.
I’ve struggled again with neck and shoulder pain these last two days, which
also culminated in the mother of all migraines yesterday evening…so
yeah, definitely praying all goes well and surgery will bring relief from
With reference to my own experience, both surgeries were done in the morning at the Perioperative Unit at Royal Prince Alfred. The surgery lasts about 2 hours each, and then i was admitted to the TPU unit for an overnight stay (chicken casserole for dinner was actually OK!). Assuming you are recovering well they send you home by 10:30am the following morning with antibiotics and (in my case) endone for pain. It takes a good few weeks for things to settle down I have found, and Dr Elliott will meet with you a fortnight after surgery to discuss any concerns or ongoing treatments (follow-up consult is free). First few days post OP are a write-off and you just need rest. If you get both sides done you will have some mild scarring along either side of neck.
Dr Elliott operates out of 3 hospitals. The closest to you is probably the Mater, but this is a private hospital ($5000 per night!) so on the public system it will either be RPAH or Concord. I live directly across the Rd from the RPAH so have been blessed in that regard.
Hope this helps- ask any more questions anytime!
Hello Retrorock -
Great posts here! Do the specialists you saw have a long waiting list to get in?
So good that your case was presented at a conference too. I’m interested to know whether your specialists suggested any sort of therapy to help you recover from your surgery?
My situation is a funny one - I’ve been having symptoms for at least 7 years now and I have always thought they were due to something else. Dizziness, severe ear pain, swollen lymph nodes on the affected side, feeling like hearing rice bubbles pop in my ear, dull ear drum on the affected side, blocked eustachean tube, bad neck pain, sore throat and feeling like I have a small spear stuck in the affected side of throat and headaches on the affected side etc. Initially my GP sent me for a brain MRI and they incidentally found an arachnoid cyst at the base of my skull (benign) and I was sent to the vertigo clinic and they couldn’t find any problems related to the cyst.
Added to this - I am an Osteopath too so my doctor’s mind was puzzled as to why I was still getting symptoms. So I did some self-release on the muscles in the jaw and stretches but I still couldn’t unblock my ear or make the ear pain go away. Then I though I must have tonsil stones because I was working on my jaw (with inside the mouth techniques) I could feel something hard in my tonsil but couldn’t get it to move like you should be able to with tonsil stones. So I kept researching and came across Eagle’s syndrome. I had an old OPG xray from perhaps 14 years ago sitting in my filing cabinet and took a look and lo and behold you can see an elongated styloid process on the right side! So I am guessing that mine definitely must have grown longer over 14 years?
I’m so glad you have shared your specialist details a because I am going to get in to see them and get this sorted out. I feel as though my dizziness is slowly getting worse…
Thanks again for your post!
Hi there Melzieinsydney,
Thanks for your email!
So sorry you are having these problems. It’s a real pain!
Your manifestation sounds like the classic version of ES, which effects the throat and surrounding areas. My version was the Vascular version, where my internal jugular veins were compressed, causing neurological symptoms like pressure in the head etc.
Having said that, my jaw has been extremely tight lately. What are the self-release exercises you use?
I can definitely recommend Dr Elliott, he is just so helpful and knowledgable. I can also recommend Dr Michael Halmagyi from the RPAH neurology/dizzy clinic. Both helped me through this time in important ways, including keeping me informed of where things were at, communicating with me etc. I am really grateful to them.
In answer to your question, Professor Halmagyi recommended some antidepressants for headaches and anxiety. He (rightly) sensed that the anxiety about everything was getting too much for me to handle. I needed help getting through this time, and this medication helped a lot. I have always been prone to health anxiety/panic, and the unknown element in my illness really did wreak havoc on my ability to keep calm.
It’s still not fixed, and they are considering putting a stent in the base of my skull. Still, I am feeling a lot better and am back at work/study/playing music and just living my life as I always have.
Please let me know if you have any more questions- I am only too happy to help.
Sorry, just saw your other question. There can be a wait getting in of up to a month, so book ahead. Explain the situation and the severity of your symptoms, and if it is urgent they will fit you in.
Thanks for your message. Wow a stent in the base of your skull I do hope it helps! Great they have helped you get back to your usual activities - what instrument do you play if I may ask?
This is a fairly lo-fi video but you will get the gist. This stretch releases the PTERYGOID muscle - see here.
Stretching the mid part of your back can also help with a tight jaw. Do you have a foam roller? You can use it to stretch loosen up your back which can help with jaw tightness. Just as long as you dont get dizzy when you bend forward etc. See here for some stretches using foam roller.
This is also a good article about TMJ pain - http://breakingmuscle.com/fitness/heal-your-tmj-disorder-with-3-simple-posture-exercises
I’m a newby on this site and finding my way around but does anyone have any info on surgeons in Western Australia. Does anyone now of an ES surgeon on this side of the country?