Anyone had revision Surgery in Sydney?

[Guest guest]

Hello all,

I have just discovered that I require revision surgery.

I had 32 degree curve in 1984 (when I was 18) and had a fusion,

harrington rods and was in a brace for 12 months with Mr Morley at

the Royal National Orthopaedic Hospital in Stanmore. I have lived

in Sydney since 1989.

My curve is now 64 degress and the hooks are obviously unhooked at

the lower end.

I love this group and have been addicted to reading everyone's

experiences and isn't the internet great! I would love to hear from

anyone who may have undergone/undergoing revision in Sydney.

Thanks

Mags

[Guest guest]

Hi Mags,

Welcome to the group. As far as I know there are no other members who

have undergone surgery from Syndney, or Australia for that matter,

but it is possible that we have lurking members who might be able to

share their experiences that I don't know about. And yes, the

internet is great. For our population in particular I think it is

wonderful that we can be a nice support system for those with similar

problems. It seems we are sparse enough in the population that it

isn't easy to find " like bodied " souls very easily. It is nice to

validate our life experiences and learn that we are not so alone!

Do you know what levels you are currently fused at? Are you

experiencing flatback or just DDD (not that DDD is any small thing

either!). I ask because I believe by todays standards they wouldn't

necessarily fuse a 32deg curve so perhaps you are at least escaping

some of the worst of flatback if you are fused fairly high. I also

was not quite at 40deg before surgery....and certainly had milder

flatback symptoms that set in later in life than many.

A member recently detailed her doctors assessment that in some ways

she is fortunate that the techniques for addressing flatback are

becoming fairly well understood and managed by a top notch surgical

team (at least in the US). I don't think that even 5 years ago they

were sure what the best treatments were....which is why many of us

were told nothing was wrong with us...or to live with it...neither of

which are particularly great options when you are in excruciating

pain.

Have you already got a surgeon in mind and have you been able to

verify his credentials in regard to successfully performing this

surgery on many other patients? I don't know what the medical system

is like for you...but in the US generally it is possible to get

patient references from a potential surgeon. I would specifically

want to speak with patients who are also about your " vintage " with a

similar previous Harrington rod. Some surgeons say they do " revisons "

all the time....which is true because it is a generic sort of term

for any time a surgeon has to go in and " re-do " a previous work. In

our case, it is a revision, but generally it is a more technically

challenging operation as rebalancing the spine globally, especially

with fusion to the sacrum, is no small feat...but it is key to a good

outcome for the patient.

Anyway....enough of that. Please tell us more about you, and how you

are doing right now!

Take Care, Cam

[Guest guest]

Thanks for the note, Cam. My original fusion was T5 - L1 and seem to have symptoms of flatback as described but surgeon hasn't said so. I hope someone will catch my post and reply at some point. Thanks again, Magscammaltby <cammaltby@...> wrote: Hi Mags,Welcome to the group. As far as I know there are no other members who have undergone surgery from Syndney, or Australia for that matter,

but it is possible that we have lurking members who might be able to share their experiences that I don't know about. And yes, the internet is great. For our population in particular I think it is wonderful that we can be a nice support system for those with similar problems. It seems we are sparse enough in the population that it isn't easy to find "like bodied" souls very easily. It is nice to validate our life experiences and learn that we are not so alone!Do you know what levels you are currently fused at? Are you experiencing flatback or just DDD (not that DDD is any small thing either!). I ask because I believe by todays standards they wouldn't necessarily fuse a 32deg curve so perhaps you are at least escaping some of the worst of flatback if you are fused fairly high. I also was not quite at 40deg before surgery....and certainly had milder flatback symptoms that set in later in life than many.A

member recently detailed her doctors assessment that in some ways she is fortunate that the techniques for addressing flatback are becoming fairly well understood and managed by a top notch surgical team (at least in the US). I don't think that even 5 years ago they were sure what the best treatments were....which is why many of us were told nothing was wrong with us...or to live with it...neither of which are particularly great options when you are in excruciating pain.Have you already got a surgeon in mind and have you been able to verify his credentials in regard to successfully performing this surgery on many other patients? I don't know what the medical system is like for you...but in the US generally it is possible to get patient references from a potential surgeon. I would specifically want to speak with patients who are also about your "vintage" with a similar previous Harrington rod. Some surgeons say

they do "revisons" all the time....which is true because it is a generic sort of term for any time a surgeon has to go in and "re-do" a previous work. In our case, it is a revision, but generally it is a more technically challenging operation as rebalancing the spine globally, especially with fusion to the sacrum, is no small feat...but it is key to a good outcome for the patient.Anyway....enough of that. Please tell us more about you, and how you are doing right now!Take Care, Cam

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[Guest guest]

Mags,

Wow..if you are fused to L1 and are having problems I bet you are going

to be faced with an almost more worrisome choice. It seems that the

surgeons are very reluctant to address more levels than they absolutely

have to...and I am sure that is with good reason....but it seems like a

lot of folks then end up on the merry-go-'round where they have to have

several successive surgeries as the levels below need fusing. I hope

that is not the case for you...but you should spend some time

reseaching the outcomes for those that are left with several unfused

segments and how they fare in the longer run.

I also hope you hear from others in your part of the world.

Take Care, Cam