Meet and Greet

[Christine]

Hi Everyone!

So nice to see you pipe up Rodverta! xxx! And extra nice to hear you are well.

I had fusion T4 to L1 in 2011 and then thoracoplasty (5 ribs) in 2012. Now aged 55 (how did that happen!?) and flying to see my specialist in Melbourne for a follow up in a few weeks.

Feeling ok most of the time but still struggle with energy and muscle weakness. Mostly due to middle agedness and me juggling too many things

[Finchi]

hi All,
as I have read elsewhere it seems a whirlwind introduction to the twisted journey of scoliosis is not that uncommon.
as it was when I found out my child was a curvy girl.
We have just recently had my daughter confirmed with scoliosis, thoracic curve at 48 degrees.
firstly it was guilt as to how I could have missed this ?
we have learnt to supress the guilt,
now it is research and how we can help.
we are in perth W.A if anyone has some info on centres that offer non surgical treatment, like Schroth etc?
or if anyone knows of any groups where the kids get together to talk and support each other.

thanks

[Everett]

Hi! I’ve just joined the forum. I’m 71, S curve scoliosis since age 12 (in Adelaide), current thoracic Cobb angle 54 degrees, now deteriorating and with increasing back pain. I just missed Harrington rods (I was an exhibit later in the UK to students who were used to rods for my degree of curvature), but I had exhaustive physio as a teenager. Both my daughters have scoliosis (no-one told me it was genetic). One needed a Boston Brace, which halted the progression of her curvature. I have many stories about problems with various medical professions, and a few beefs that still bother me. For example, no-one ever asked me about Marfan, and the family clearly has Marfan body syndrome. And I am so sorry that the Orthopaedists have monopolised research - it’s such an exciting operation for them, no wonder they love it in teenagers and don’t give a damn about later years. I’ve tried the current physio/ chiropractic mob, but they seem to focus on prevention, and that is a long way too late for me.


I would love to hear other experiences about pain control. I cannot tolerate NSAIDs, which makes things difficult, but I do reasonably well with turmeric/blackpepper/ginger as the ‘natural’ alternative. I have a nice and affordable comfort brace (Ebay, from Latvia), and multiple hot water bottles. I take a fair bit of codeine, but have no trouble stopping it when I am over a pain episode (so far it has been episodic, longest episode 3 years). I have taken 100mg Tramal daily for 20 years, and it raises the threshold for difficult movements that result in pain (always hours later, which makes it hard to predict). I have tried 2 pain clinics, 30 years apart, including everything from low-dose psychiatric drugs to hypnotherapy. I would love to get advice about exercises that would strengthen my back but not cause pain, or anything else about pain control. I am also happy to correspond by email with anyone asking about my own experience.


Greetings to you all!

[aldeani]

Hi all,
I just found this forum yesterday and since then have been reading all the posts I can. I’m 43 years old and pretty much always have known I had scoliosis as my Dad also had a small curve. We really didn’t go to doctors unless you were extremely ill so nothing was ever officially diagnosed till I was at least 30 when I sort treatment for increasing pain from a Chiropractor. Anyway I am now managing my daily pain that seems to be steadily increasing ☹️ and am now looking at surgical options. I am in Victoria and would love recommendations for specialised surgeons (I have private health cover) in Melbourne. If you could PM me your experiences I would really appreciate it.
Thanks Ali

[SDK]

Hi - New to Forum here. Still trying to figure out how to begin a post. 😊

Am looking for recommendations for surgeons in Melbourne. Need to have T2, T13 Fusion with Osteotomy.

Looking at going down the surgery path and so very anxious.

Any recommendations and information would be very much appreciated.

SDK

[Christine]

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