Australian seeking specialist and what scans to get

General
21

thanks so much for the encouraging words y’all!

last night I received an email from the surgeon in Geelong, he says “Hi Della, ** mentioned your case and I have seen the CT which looks as
if the ligament is entirely calcified which is in keeping with the
diagnosis and symptoms you describe … To make things easier you could
see someone up in Brisbane ( like Scott Comen or Ben Penneza) who may be
able to advise you … Otherwise I am happy to try and help”

how nice is that?

so have looked up the mentioned Dr’s and will also try to ascertain if they are ES savvy before making apt with a surgeon, at least I know Dr Roy is fluent and has done successful surgeries.

22

That was nice of him - and it’s great to have some other names of closer doctors. Good news. Things are going in the right direction.

23

A note, rang Dr Panizza, he doesn’t do ES surgery. Then rang Dr Coman office and his receptionist rang back to say “Yes, he does do throidectomy” h ahaaa

think I will just push through to see the surgeon in Geelong

24

Della, sorry those closer doctors didn’t work out.

25

Just a thought: Since you have an ES diagnosis & are planning to travel to see Dr. Roy at great expense & challenge for you, perhaps he would be willing to schedule your surgery shortly after your consult with him so you can just stay there & get it done before having to travel back home. It would be worth it to ask him if that would be possible.

I admire your tenacity, Delia. You have a lot of physical challenges yet you’re game to do what’s best for your body so you can live as normally as possible.

I will pray for you to have wisdom as to how to proceed, safety in your travels, successful ES surgery & rapid recovery.

:relaxed:

26

hey thanks Isiah, what a good idea! I will be booking in with the surgeon
in the next 24hrs so will see if it is possible to do that.

good thinking 99 :slight_smile:

27

Love your Get Smart reference! I loved that show - never missed it as a kid!

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28

I believe a few surgeons in the US do that type of pre-op consult and then the surgery the day after or close, if they already have enough information. Hope, you can work something out. You might also check any university close to you for skull based surgeons like Mark7b mentioned.

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29

Mark7b, if you found a good doctor and had a successful surgery, please make sure your doctor gets added to the list. The list is only created by us after we find a surgeon who has been successful on a member. It was started by going through all the discussions from the beginning in 2009, I believe and finding doctors, then turned into a spreadsheet to be shared with all. Please do make sure you get your doctor added to the list for the next update.

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30

heya all,

thanks! so an update: I am booked in for consult mid Oct, with a view to surgery 3 days later. They can’t “confirm” the surgery until the consult but I don’t see that there will be a problem.

I am booked for flights to get there and cannot book return flights until I have more info.

I plan on asking the surgeon, Dr Roy Nicholson, in Geelong, Victoria, Australia, who is highly recommended as the best in the country for ES surgery, to film or photograph surgery. I suspect, not only major vascular involvement with carotids and internal carotids, but also jugulars seem to be affected. Also, I know that I have trigeminal irritation and highly suspect vagus nerve involvement with the POTS and OH I have. I am guessing that several times in the past 4 years, the most recently about 4 months ago, I have broken or fractured one of the “entirely ossified” ligaments and would like this documented as well.

phew, such a huge huge thing and the more I learn about it, the more I find needs to be done/researched.

On the FB page, one pt said that there are 2 studies in the US, one finding the connection between ES, EDS (ehlers danlos syndrome) and CM (chiari malformation) and the other study, the connection between ES and CM.

on that page there seems to be a huge number of members who have already been dx’d with EDS and ES. I can, having both, make a connection quite easily - simply put, in EDS, we have ligamentous laxity due to hypermobility. Since the stylohyoid ligaments are implicated with ossification is so many ES cases, I guess our instability (I have some C spine instability around the C3/4/5/6 region) which causes a great deal of issues, maybe the ossified ligaments are actually trying to help/preserve and stabilise those important vessels/nerves that travel through the C spine region into the skull base.

anyhooo…onwards and upwards hey?

will keep you all posted, thanks once again for the support and info and warmth:smile:

31

So glad to hear your positive report, Delia. Sounds like you’re doing your homework! Will be interesting to see if Dr. Nicholson is willing to video your surgery. I don’t think a US doctor would be willing to do that because we live in a “lawsuit happy” society, & if someone didn’t have the desired outcome from ES surgery & the surgery had been videotaped, you can bet the video would end up in court as evidence against the doctor. It’s so sad that we’ve come to this - a video of a properly done surgery - especially in a case that isn’t straight forward - could certainly be used a teaching tool for other doctors. I know that my surgeon didn’t want anything regarding my surgery showing up on the internet, so I had to beg just to see my styloid after he removed it. I forgot to ask after my first surgery so only saw my second styloid.

Great that you have a date to look forward to as well. I will pray for safe travels and timely surgery.

:slight_smile: :tulip:

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