So Jules has been great with providing me a link to potential surgeons in Australia that could look at operating… and from what I’ve researched also… it does not appear to be very positive in the respect of having a surgeon that’s done a few surgeries.
In fact there is only one surgeon who has performed only 1 surgery …
Please tell me if I am wrong !
I currently live in Perth … and I definitely would not be able to afford travelling overseas to be operated on
Does this mean I just have to put my trust in someone or is there special circumstances where someone would come over ??
Also on a side note drinking alcohol and singing seem to have an impact on creating symptoms
My main pains at atm are … sore teeth and tight jaw
I had a sinus infection recently and the feeling of having to click it from time to time by moving my neck to alleviate the pain
So far it affects me for about a week or 2 at a time …
I also find in moments when I’m less stressed it doesn’t hurt
There are nerve pain meds which can help, it sounds as though you might be getting pain from the Trigeminal nerve, it’s often affected. If you’ve not tried any Gabapentin, Amitriptyline, Carbamazepine etc might help. They can take a few week s to build up in your system so won’t work straight away.
We’ve had quite a few singers on here & ES definitely is affected by that.
One of our members is under the team at Victoria {A/Prof Michael Elliott, ENT, Royal Prince Alfred Hospital/ or Concord/ or privately at The Mater)? Victoria, with Dr Michael Halmagyi (Neurologist) and Dr Jeff Parker (Radiologist) & Dr Rodney Allan, neurosurgeon, Possibly does C1 process along with A/Prof Michael Elliott } but obvs a long way for you to travel…
Skull based surgeons or head & neck cancer surgeons are a good bet to try also as they’re used to operating in the area of the styloids, might be someone locally?
@Rhysyboy92 - We never added this surgeon https://www.drfisher.com.au to our list because we didn’t hear back from our member @simon regarding if he had ES surgery with him, & if so, how the outcome was. simon’s surgery would have taken place during the COVID shut down so everything was a bit uncertain which is perhaps why we haven’t heard anything. You can try sending him a private message or see if you can get a consult w/ Dr. Fisher & see if he seems a good fit.
Jules has given you good information on how to choose a doctor more local to you who may be able to do your styloidectomy successfully even if not experienced w/ that particular surgery.
Thank you so much for the responses ! What I will say, is that I have decided to go with Michael Elliot, he is based in Sydney but seems that as long as I live in Australia I can still be on the wait list in the public health system to see him even if I am in Perth. If there are some extra fees that’s fine.
I went with him based on good reviews as well as having been successful with a few patients that have had eagle syndrome.
So this week I will be getting an updated CT scan and a new referral from my dr that I plan to send to him.
And from there I’ll wait for his response and see what he has to say.
Putting a plan in action has relieved me but I’m the biggest of worriers and always think worse case.
I’m sure I’ll be fine, and I’m sure things could be worse… I try to see the light and think to myself … that we are a rare and unique breed I try to think that this can at least be fixed and it’s not fatal.
It’s just an issue in my life right now that can be sorted.
I will definitely keep everyone updated on how I go.
We have some members who take Lyrica/Pregabalin & have found it helpful but over all, it seems the 3 meds @Jules mentioned are more popular. I say give Lyrica a try for a month to give it a chance. If after that time you have no symptoms relief then try one of the others.
If you click on the magnifying glass icon in the upper right & type Lyrica in the search box, the discussions about it on our forum will come up for you to read.
Thank you for this information, @Shpensta. I’m really glad you’ve had a good outcome!
We have Prof Elliott’s name on our Doctors List for Australia but listed in Victoria. Perhaps he’s moved since there’s quite a distance between the two cities. I’ll look for his info online & update ours if necessary.
I remember long ago I sent/posted a list of updates to apply on the Australian doctors, based on my research (well, I know a thing or two about Australia ), but perhaps it got lost on the way… I will try to find it.
I try to think that this can at least be fixed and it’s not fatal.
), but perhaps it got lost on the way… I will try to find it.