Australian seeking specialist and what scans to get

General
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Hi All

in short, I only found out about ES a week ago. Following head injury 2012 I had severe pain neck and throat and base of skull. Every time I turned my head I was having some sort of TIA. My right side of my face would droop, I was desperately ill, violent vertigo, impaired mentation, difficulty speaking and understanding speech, double and blurry vision, massive lethargy - this lasting between 30mins to an hour each time. Unco-ordination, right sided weakness, slurred speech etc.

4 years later, still neuro symptoms when I turn my head, worse to the left, and horrid violent vertigo and sickness when I look down (flexion).

the tinnitus is only right sided, I know that it is from vessels, probably the - seen on imaging - “significant tortuosity of mid right ICA”…

the pain in neck/throat, the swallowing issues, the lump in throat feeling, I have it all.

I never got any answers as to why I was having these episodes. I reckon I had at least 100 in the first year. I have mTBI but I think now that I would have bounced back from concussion had I not been having these episodes - I was literally fighting for my life and trying to stay conscious each day - terrible those first months, very frightening.

ok, so I live in FNQ, up near Cairns, have a good GP and a huge amount of files, scans etc. I can see what I think is ossified ligaments in various xrays spanning back some years. Last CT I had was angiogram and haven’t really got a clear image of the styloid process from those. Needless to say, I am supine and my head is in neutral in all scans except xrays flexion and extension.

Seeing my gp on Tuesday, and want to ask for specific scans looking for eagles - am planning on going to JCU dentist asap for a mouth splint anyway, been discussing with my gp.

  • which type of scans or dental xrays and what wording on scan referrals, will visualise the styloid process or problems there? ie specific to ES.

  • please, names of surgeons in Australia who are competent in ES! I will get referral asap with those names.

thanks so much in advance!
Oh, am already rocking dx: mtbi, narcolepsy/cataplexy, and EDS-III

Della, FNQ

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I also have neurological symptoms because of triggers in my neck. I get the shakes and have trouble talking and walking. My doctor calls them ‘episodes’ because they don’t qualify to be called epileptic, measurable by an EEG. He says this is an area of medicine that is not well documented, so you’ll need to be careful. Look for a ‘skull base surgeon,’ or an otolaryngologist. Ask him/her to order a 3D CT scan. This will help see the length and angles of your styloids or any calcified ligaments attached to the styloid or the hyoid.

In my case, my styloids were fine, but the cartilage of my Adams apple, near the hyoid, was bent and pointing inward. That is very rare, and was very hard to see on the CT image because cartilage, unless it is calcified, is very difficult to see. My doctor asked me multiple times if I had been involved in a traumatic injury, but I couldn’t recall anything.

I believe there are multiple structures in the neck that can cause problems. I believe there are a number of nerves in this dense region that have been ‘reportedly’ linked to neurological issues. I believe these things, but you shouldn’t expect others to also believe them. Science is full of skeptics. Sorry. Have courage. Trust yourself. Trust me. Our bodies are the proof.

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thanks Mark

yes I trust myself, and have learnt (the hard way) to ask other patients about conditions, specialists and what works…sadly with things like EDS and now ES, there is too little knowledge to be relying on drs/gps for this info.

I am hoping to short-cut to names of surgeons who have done surgery on ES here in Australia, as opposed to what specialty, I will just go to the nearest one ya know?

I have been on a diagnostic nightmare journey for 4 years and this is the last peice in my puzzle.

lol I couldn’t work out how to attach pics, my xrays show very clear calcification and I know, utterly know, that this is what is happening in my case.

Have you or any other Aussie members had surgery for ES? if so, was it successful and can you please give me the name of the surgeon so I can start chasing down a referral.

I will travel and just want to get the ball rolling.

cheers

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Hi Della,
There’s a lot of info in the Newbies guide to ES section about the best scans to get. A Ct with contrast is pretty much the best to show vascular involvement, which you’ve already had- unfortunately unless they can get you into a position where you’re getting symptoms though it might not be helpful in everyone’s case. But from that the radiographer should be able to see styloid length and calcification of the stylo-hyoid ligaments. One member- Snappleofdiscord- was trying to get a CT with contrast taken with her neck in a certain position to show the effects of the styloid on the carotid arteries; I can’t remember if she was ever successful with that or not.
There is a doctors list on the site which heidemt updates regularly with names of doctors who have treated ES. Hopefully there should be some Aussie docs to help, and here’s a link to a previous discussion where some members from Australia were talking about their doctors:

Hope this helps you a bit!

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If you look on the home page, there’s a Doctor Information section, the latest updated list is there:
http://forum.livingwitheagle.org/t/updated-doctor-lists-5-10-16/1281

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I was on a 21 year diagnostic nightmare, and found a piece of my puzzle when I discovered that turning my head triggered my symptoms. Someone suggested that I ask, “who can evaluate me for Eagle’s Syndrome?” and so I went to my nearest university teaching hospital. There, I was directed to the otolaryngology department, and after meeting with a high-level student intern, was directed to a skull-base surgeon. My understanding is that not all otolaryngology doctors are skull-base surgeons, but that all skull-base surgeons are otolaryngologists. I think every skull-base surgeon should be and is familiar with Eagles Syndrome. But sadly, I think most ordinary laypeople are unfamiliar with skull-base surgeons. They aren’t well-represented on television. Tonsils and thyroid goiters aren’t very exciting.

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hey thanks Jules

yes I keep trying to get the pdf of the latest dr list and come up with a blank page!

The Ct angiogram I had was in supine nuetral position and there is no 3D image on the disc I have. I hope to ask for dental xrays to be done in the next week.

I am sure I am on the right track and seek savvy surgeons in Australia I can ask for referral to.

thanks so much!

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thanks Mark,

yes will ask my gp tomorrow about skull-base surgeons or otolaryngologists in Cairns which is my nearest town. Sadly, I am sure that ES is about as well known as ehlers danlos and will have to seek specialist help elsewhere in the country.

I find, this last peice in the puzzle, which is still affecting me every day, must be addressed asap and am prepared to do whatever it takes to get assessed.

I can’t waste another 4 years waiting for specialist apts only to get there, pay tonnes of money, only to find out they are not familiar.

I plan on cutting to the chase, taking what images I have, combined with a dental xray which I hope to get in the next week, to each of the 2 or 3? surgeons in Australia and asking for assessment.

So far - from this wonderful forum - I have gleaned the following:

Dr.Roy Nicholson - Geelong
Dr Samuel Dowthwaite - Gold Coast

will ask my GP to refer with dental xrays report/images to either of those and happy to add more to the list in order to be seen/assessed.

I see the local JCU dentist sometime soon and they do routine oral xrays, yet to find out if they are panoramic? but will ask my gp to request the styloid process be included in the imaging.

I can see the calcification on all xrays and on the CT angio and also over about 4 images, the styloid but unsure if it is elongated. They weren’t looking for that and CT was done in nuetral. I begged a few years ago for them to do the doppler carotid/basilar flow imaging whilst my head was turned as I knew there was a flow problem then. Sadly, I had - to all intents and purposes, a TIA from having my head turned for the carotid part, but all the staff could tell me, as it was done in a hospital - afterwards as my face was drooped and I couldn’t see or walk properly, that “yes it looks like you have had a small stroke…you should tell your doctor” and bundled me off in a cab. lol I saw my gp 3 weeks later and there was no mention of any of that.

I learnt to advocate for myself, to be insistent on documentation of everything, at apts, to take all reports etc with me on my dropbox and to just simply keep going.

this is the last hurdle, the only explanation as to why the tia’s on head turning, why I still feel myself dropping over and over - straight down, when I am in flexion, all these years later. I was told there was no such thing, that it was impossible etc. Now, I know differently.

thanks so much
Della

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oh yay, just managed to download the list! fabulous

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An update:

had Dr apt today and he has since last week, asked for review of CT
angio that was done in January 2015, and asking for 3D, they replied with a letter saying that the original radiologist who did the report is away but they had another
look at the images and…wait for it… “elongation of the frontal
styloid processes bilaterally with ossification of the stylohyoid
ligament to the level of the mandibular angle on both sides. This is
consistent with Eagle Syndrome”.

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Well, that’s good to get it confirmed by a radiologist- hope that will make it easier for you to get surgery. How badly affected by EDS are you?

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hey there

yes, pushing through, got a referral in to the recommended surgeon in
Geelong, this is way on the other end of the country!

my EDS is pretty bad. I have subluxing day and night, at least 50 a day, in
jaw, both shoulders, collarbones, scapulas, ribs, wrists, fingers, thumbs,
both hips, both SI’s, both knees, both ankes and some toes. The pain is
dreadful. At least I now know why the pain in throat and neck, jaw and ears!

thanks so much
Della

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Congratulations on the Eagles diagnosis and referral! Yes, it’s one step at a time. I hope you can get the Eagles part fixed soon. How long until you can see the Geelong doctor?

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they only got the referral on Tuesday, rang them and they are looking
through it, my Dr requested a skype consult initially if possible as
travelling is really hard in a wheelchair with no support person etc. Also,
would cost me about $900 to get there for one apt. I hope the Dr is open to
doing this. I asked if they could, if he needs more recent imaging, write
the referral to ES specific and get the imaging done closer to home here.

will see how I go

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Good luck - keep us posted.

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Good luck! Fight hard!

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heya all!

so I have the letter from radiology that has had another look at the CT angio imaging from January 2015 and say it is consistent with ES

I have a referral in for Dr Roy Nicholson in Geelong Vic (Australia) and I have spoken with them today, Dr Roy’s reception says that he wont require more imaging that the abovementioned CT is enough? So next step is to go to an apt.

My problem is that, the apt is only 15 mins and I have to fly to the other end of the country, in a wheelchair (because of the ehlers danlos) and I asked if there was anything in that 15 min apt that could not be asked/assessed over phone or skype and was told that he doesn’t do ph or skype consult.

So, I can’t ask about surgery costs, or basically anything about it unless I fly there for that 15 min apt. This is gonna cost me around $1000 to fly there and home again, which I don’t mind if it’s for surgery but seems in my case truly difficult just for a 15 min apt.

I asked if I could email them a couple of questions and look at airfares etc before locking in an apt. She suggested I see if there is a surgeon closer to me or in my state. I asked who do ring/ask about this and was told “I don’t know” ha haaa

my gp has also done a referral to Dr Samual on the Gold Coast this week and I will ring on Monday morning to see if I can get some answers.

I have heard Dr Roy is the best.

I wish there was a national body/organisation or somesuch here in Australia that I could contact to find out what my options are. As usual, there is little knowledge of ES, and no national body.

sigh…feeling a little overwhelmed but will brainstorm over the weekend and see what my options are early next week.

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I had good luck with my nearest university hospital. It took many months and many visits before the surgery. My doctor was not on this group’s ‘list’ of doctors, but he was experienced with ES, anyway. I’m sure there are many, many doctors who are familiar with ES and have NOT been mentioned on social media.

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It sounds like such a long way to go for a short appt.- I thought a 2 hour drive was bad enough that I had! Skull base/ Otalaryngology surgeons are potentially good for ES as they are used to performing surgery in that area, so it might be worth exploring if there’s any near you?

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I was just coming on to say the same thing Jules just said. Also, it’s certainly possible to get good surgical results with someone who isn’t familiar with Eagles. If you can find a good surgeon who’s familiar with working in that area of the neck, they can take out the styloid. There have been quite a few people on the forum who had good results with doctors who haven’t done an Eagles surgery before. But the important thing is to find an experienced surgeon.

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