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  #1  
Old 07-07-2017, 02:23 PM
coco6111 coco6111 is offline
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Question Surgery -- where to start?

Hi everyone,

I am 26 years old suffering from severe scoliosis, and may need surgical intervention. I am wondering if you can recommend good doctors in Australia please? (via PM )Also I only have medicare does that means my choices is narrowed to public hospitals? How long does it take to wait from your experience? Thanks in advance!

Cheers,
Coco
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  #2  
Old 07-07-2017, 11:40 PM
Lucyharry68 Lucyharry68 is offline
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Default Re: Surgery -- where to start?

Hi Coco,

Unfortunately, without private cover it limits you to the public wait list. In Melbourne it can be anywhere from 6-18 months, but as it is a specialised surgery, there are only a few that do it so you will still have a well known surgeon in public.

Long story short, my surgery was cancelled the day before in public. I don't even know why I went down the public road as I have private cover. I then went private and was operated on 3 weeks later and could not be happier with the service.

I will pm you the surgeon as he also consults in public. I know private is $$$ but if you can afford it I would recommend joining and wait out any waiting time if any.

It was such a roller coaster of emotions building up to the surgery, finishing work, organising my children and my parents to stay with us-all to be cancelled the day before.

Do you know the severity of your curve?

All the best.

Linda

!
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  #3  
Old 08-07-2017, 02:18 AM
coco6111 coco6111 is offline
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Default Re: Surgery -- where to start?

Hi Linda, Thanks for your reply I have a beautiful/scary S curve, I dont have the latest exact angle yet, but I could be at least 10cm taller without the curve - imagine how curvy it is! And I do feel it is getting worse with only excercises, that is why I am going to see a surgery doctor. Meanwhile I am also worried about the complications of surgery, as spinal surgery sounds highly risky...

Sorry to hear about your public hospital experience, definitely sounds streeful. But glad to know you are doing well now, I am in Melbourne too, hope I could join private system but seems it is already too late to get medibank
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  #4  
Old 08-07-2017, 02:30 PM
Shaz Shaz is offline
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Default Re: Surgery -- where to start?

Hi Coco,

Welcome to the forum.. I also have a lovely s curve and awaiting surgery. I had to join a private health fund, as the public health system in Sydney can be 2-3 year wait. My curves have increased by 6 degrees in 5months giving me 60 degree at lumbar and 48 at thoracic hence surgery. How long have you had scoliosis for? I'm not sure what Melbournes public health system is like but ensure you check out all aspects. From what I read a lot of people on the forum are in Melbourne and would be able to guide you. The support from people and their experiences here is wonderful. Just remember your not alone, so many of us have scoliosis and we too get to the point where surgery is our only option..

Wish you all the best
Shaz
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  #5  
Old 11-07-2017, 07:35 PM
Jules Jules is offline
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Default Re: Surgery -- where to start?

Hi Coco! Welcome to the forum! We all started here with pretty much the same question: where to start?

Well you've had a couple of replies already that highlight the issues with public. Long waiting list and the surgery can be cancelled literally on the same day. You could be preped to go in and they cancel it. Not that it happens often but it does... in the public system you always have emergencies who might require a theater or even the surgeon you are supposed to be seeing, so it happens.

However I'm very aware that private is not necessarily feasible for everyone. And most of the private surgeons also operate in public hospitals. Mine does, I'm from Melbourne too so I will pm you his name soon. So you are still going to get very capable surgeons in the public system as well. The other thing I think public does better sometimes is discharge planning. I've seen it a few times before (I work in the health area), patients that leave the hospital with better support in the public system than the private (by support I mean follow up with Physio, free hire of equipment for a few weeks post surgery etc).

You could also get a private cover and wait the 12 months. Just make sure your cover does include fusion/spinal surgery of course.

My curve was 68o I think... also S curve. Now it's still an S but 23 lower curve and 23 upper curve... so very well balanced

Yes, your comment about risks etc reminded me of myself when I started the process of deciding to have surgery or not. There are risks to every single medical procedure. The risks of major spinal injury for scoliosis surgery are not super high but still exist. What helped me to decide or, should I say, to be more comfortable about my decision were things like: trusting my surgeon (get recommendations, gut feeling, ask questions etc), my level of pain (it was high and getting worse and worse) and quality of life. So I decided to go ahead. But yes, there is always that risk. I would probably be feeling differently about this if something wrong had indeed happen. But it didn't this time.

I will pm you about my surgeon.

Meanwhile, feel free to read my posts! Click on my user name, I think it gives you the option of looking at posts written by me. I write a lot (I also talk a lot about this topic) and I did made the effort to write here after surgery because I felt so much better reading through the stories of others that I wanted to give something back as well.
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  #6  
Old 18-08-2017, 06:56 PM
coco6111 coco6111 is offline
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Default Re: Surgery -- where to start?

Hi All,

Thank you all for your experience and suggestions! I feel so lucky to hear from you all. I contacted doctor's clinic, and waited for one month to get into the first appointment. I had a normal x-ray, and a specific whole picture x-ray reqired by doctor done (the specific one is covered by medicare).

After my first consultation I got that my upper curve is 77degree and bottom curve is 44degree. So at this stage it is either to do nothing or the surgery, luckily the doctor said i might only need to fix the upper curve, depending on another x-ray test which exams the flexibility of the curve.

I also asked about the minimal invasive surgery to correct scolisis, which has smaller cuts. I am actually frigtened by knowing traditional way that cut the whole muscle into half. But since my curve is quite severe, the traditional way suits me better according to doctor. I will research on this too. This is once in a life decision so I try to make everything carefully, hope I won't regret anything in the future!

Basicly I am going to take another two exams so doctor can discuss the details of surgery with me in the next appointment, I will update next friday.

Cheers
Coco
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  #7  
Old 18-08-2017, 07:11 PM
coco6111 coco6111 is offline
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Default Re: Surgery -- where to start?

Hi Shaz,

Yes, this is a wonderful forum with lovely people. I just had the exam today and I think I will probably go surgery as well. I was found to have scoliosis at the age of 14, the upper one was already over 40 when discovered. And then I had bracing, went to chiropractor.. the degree went up to 77degree after 12 years and I dont want it get worse in the future, seems surgery is the only option which can guaranteen that.

Quote:
Originally Posted by Shaz View Post
Hi Coco,

Welcome to the forum.. I also have a lovely s curve and awaiting surgery. I had to join a private health fund, as the public health system in Sydney can be 2-3 year wait. My curves have increased by 6 degrees in 5months giving me 60 degree at lumbar and 48 at thoracic hence surgery. How long have you had scoliosis for? I'm not sure what Melbournes public health system is like but ensure you check out all aspects. From what I read a lot of people on the forum are in Melbourne and would be able to guide you. The support from people and their experiences here is wonderful. Just remember your not alone, so many of us have scoliosis and we too get to the point where surgery is our only option..

Wish you all the best
Shaz
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  #8  
Old 19-08-2017, 12:36 AM
coco6111 coco6111 is offline
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Default Re: Surgery -- where to start?

Hi Jules,

Thanks for your reply. It seems that everybody is happy after having surgery, which is cheerful. I asked about the risks today and there is about 1 patient out of 1000 may end up with living on the wheel chair. It is not a high possibility but as you said it still exists. I am also worry about the muscle strength is permanently weakened after the surgery, and the scars could be long! I wonder if there is anyway to minimise the scar marks.

The good news is if I have the surgery done now, i may not have to fix both curves (only fix the severe curve). And the rods and screws in body hopefully cound last a life time.



Quote:
Originally Posted by Jules View Post
Hi Coco! Welcome to the forum! We all started here with pretty much the same question: where to start?

Well you've had a couple of replies already that highlight the issues with public. Long waiting list and the surgery can be cancelled literally on the same day. You could be preped to go in and they cancel it. Not that it happens often but it does... in the public system you always have emergencies who might require a theater or even the surgeon you are supposed to be seeing, so it happens.

However I'm very aware that private is not necessarily feasible for everyone. And most of the private surgeons also operate in public hospitals. Mine does, I'm from Melbourne too so I will pm you his name soon. So you are still going to get very capable surgeons in the public system as well. The other thing I think public does better sometimes is discharge planning. I've seen it a few times before (I work in the health area), patients that leave the hospital with better support in the public system than the private (by support I mean follow up with Physio, free hire of equipment for a few weeks post surgery etc).

You could also get a private cover and wait the 12 months. Just make sure your cover does include fusion/spinal surgery of course.

My curve was 68o I think... also S curve. Now it's still an S but 23 lower curve and 23 upper curve... so very well balanced

Yes, your comment about risks etc reminded me of myself when I started the process of deciding to have surgery or not. There are risks to every single medical procedure. The risks of major spinal injury for scoliosis surgery are not super high but still exist. What helped me to decide or, should I say, to be more comfortable about my decision were things like: trusting my surgeon (get recommendations, gut feeling, ask questions etc), my level of pain (it was high and getting worse and worse) and quality of life. So I decided to go ahead. But yes, there is always that risk. I would probably be feeling differently about this if something wrong had indeed happen. But it didn't this time.

I will pm you about my surgeon.

Meanwhile, feel free to read my posts! Click on my user name, I think it gives you the option of looking at posts written by me. I write a lot (I also talk a lot about this topic) and I did made the effort to write here after surgery because I felt so much better reading through the stories of others that I wanted to give something back as well.
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  #9  
Old 19-08-2017, 04:17 PM
Shaz Shaz is offline
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Default Re: Surgery -- where to start?

Hi Coco,
Great news to hear you have seen a specialist and have had some new X-rays done.
Fingers crossed you will get more info on Friday and you can begin to plan your future. I think once we have made a decision for surgery, well for me personally, I feel relieved, knowing that soon, I may have a slightly normal life again, once recovered and you are so young, your recovery will be quicker hopefully. Have the docs discussed where the fusion will be? Mine will be T8-pelvis and done with 2 incisions posterior. Will you need to go private health? Or have you found a surgeon that will go public system? Are you having a lot of pain? I find some people have a lot and some minimal? Best of luck on Friday, please let me know how you go. Shaz
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  #10  
Old 31-08-2017, 08:03 PM
Jules Jules is offline
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Join Date: Feb 2014
Posts: 50
Default Re: Surgery -- where to start?

The only real weakness I have is on my left hip flexors. But that's not due the surgery, but due to the nerve compression that was already there. In terms of trunk strength I exactly the same...
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