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Jonno
24th October 2008, 05:44 AM
Hi there.

I'm a 6 foot 4 skinny dude who's lived with Kyphosis since I was about 12. I'm now 27. My curvature is about 75-80 degrees, and I can't walk for long distances without being in pain and sometimes at night have breathing problems when in bed.

To be honest, this has pretty much destroyed my life from me being unable to conduct a relationship due to self esteem issues, down to me having to leave workplaces cos of bullying...

I just recently returned to NZ from NY, and when I last saw spinal surgeons when I was 20 in NZ they pretty much just shunted me away and also told me that at best I'd only get 10-15 degrees correctment in a surgery? Is this true?

Now I really really want the surgery so I can start getting on with my life and actually living it properly...

Also, I have a UK passport as well as a NZ passport. Does anyone know the difference between the two countries and how long I'd have to wait to have the surgery on public health care. if not, does anyone know the rough cases and waiting times for private surgery??

GillyG
24th October 2008, 06:10 PM
Hi :welcome2:

I'm very glad you've found us, your story sounds so familiar and many of us can fully relate to the issues you have had. You will find plenty of information here and everyone is really friendly and supportive :)

So, to try and answer a few of your questions as best I can ...

I'm no expert in kyphosis surgery (I have scoliosis) but from what I have read the correction achieved is usually far more than just 10 - 15 degrees. Obviously it will depend on the individual circumstances but personally I think that is an unrealistic and pessimistic estimate.

I have no idea how the system works in New Zealand but here in the UK it tends to depend very much on who you see as to what response you will get. Some surgeons are unwilling to operate on adults (possibly because they lack the necessary experience) whereas others will happily take on the most complex of cases. I was very lucky to be referred to the latter kind and had surgery for my 80 degree scoliosis aged 49 after having 'slipped through the net' as a teenager and young adult (told it wouldn't get worse and then, when it did, told it was too late to do anything about it - sound familiar? :p)

In the UK, the waiting time for the initial referral tends to be around 14 weeks and then it could be around 4 - 6 months on the waiting list for surgery, if that is what is recommended. Like I say, the important part is getting referred to someone who will deal with adults.

Private appointments are much quicker but obviously very expensive as you would also have to pay for X-rays, MRI etc. I'm afraid I have no idea how long private patients wait for actual surgery, but I'm sure someone who has been down that route will come on soon and help answer that one for you :)

Hope this helps, if you think of any more questions we will do our best to help, but in the meantime, have a browse around the forums and you might find answers to questions you haven't even thought of! :D

BeckyH
24th October 2008, 06:32 PM
hi, thought i'd chip in as i'm able to help slightly with the private aspect of this!

i was lucky i was able to go private: my dad worked for a large company at the time and i was covered under their healthcare policy. with my consultant, initial consultation is 200 and x-rays are 150 each visit. my MRI cost bupa (healthcare company) 1,000 and the week in hospital (including all surgery, care hours, physio, OT, drugs etc) cost 12,000.

in terms of waiting times... if you really want to you can book a private consult about a fortnight in advance (or longer, if you want to, obviously!). my surgery date was booked about 12 weeks ahead of time, but i'm not sure how quickly you could get a private surgery because we actually chose my date (i booked surgery in april for july to fit in with the end of my exams) so sorry i can't help with that one.

Unregistered
25th October 2008, 08:50 AM
Thanks so much. I've always been pretty weak at speaking up for myself and I've just had to learn to cope with my back as best I can and accept that I will always be an outlier in society.

This site is so so so helpful for me. I just am so grateful for finding other people that are or have been through similar things.

I don't know if anyone else can sympathise, but it's even the little things like when someone brushes past me in a cafe and they knock into my back as they go past cos it's protruding, and it really ruins my self confidence for the rest of the night.

I'm really glad that the operation can correct more than 10-15 degrees. I just really hope I can find the right referral and surgeon sooner rather than later.

J

Unregistered
30th October 2008, 06:29 AM
I've just looked into private healthcare and kyphosis correction is around the $100,000 mark in NZ. However, having said that I'm going to see what the options are through the public health system as well. I'm pretty amazed that I recently went to a GP who assured me nothing can be done and that maybe all I needed was physio (even when I showed him pics of me bent over).

Buffalowilliam
6th November 2008, 11:36 AM
I wouldn't be too hard on the GPs! I've had a couple say to me 'your the first person I've ever met with the condition' so you shouldn't be too surprised that they don't necessarily know what to do/say.

No matter what the physical implications of your condition the psychological ones are certinaly severe enough to warrant the surgery. I know nothing about NZ I'm afraid but you could certinaly get the surgery done here with a GB passport on the NHS where they have world class surgeons. You just have to be prepared to wait and push yourself forward a bit.

Try not to get too down about your condition, people aren't half as aware of it as you are and I bet don't notice nearly as much as you think they do. Good luck.

Unregistered
13th November 2008, 12:40 PM
Dear Jonno,

I work for the Starship Children's Hospital Spine/Scoliosis service in Auckland as the Spine Nurse Specialist. Obviously you are too old for our service but it would be worth having a referral made to the Auckland City Hospital Orthopaedic Department - specifically to their Spine Service. If you live in the Auckland region your GP can make the referral directly to the hospital. If you are from another region, you would need an initial referral via your GP to the Orthopaedic Service at your local public hospital. They will have to assess you then make a referral to the ACH Spine Team. A long way to get there but the only way that you can access the Auckland Service if you do not reside in Aukland.

Waitemata DHB on the North Shore also has a surgeon who treats spine deformity. Wellington has a Spine / Scoliosis service with as do Dunedin.

I would not accept from a general orthopaedic surgeon that there is little that can be done - untrue and I would insist on a referral to a spine surgeon who specialises in scoliosis / kyphosis.

Names to watch for are;
Peter Robertson, Alistair Hadlow and a new surgeon Angus Donn - Auckland City Hospital
Edward Yee in Waitemata DHB.
Geoff Coldham - Counties Manukau (Middlemore)
Robb Rowan, Mark Sherwood - Wellington
Bruce Hodgson - Dunedin and Christchurch

Very few insurance companies in NZ still cover scoliosis / kyphosis so the public sector is your best option. The cost of private surgery would start at $50 - $80 thousand. However - it is sometimes faster to see a spine surgeon in the private sector, have x-rays and an assessment admit to having

In private in Auckland - Michael Barnes, John Ferguson and Haemish Crawford - all work for the Starship Children's Spine Service.

Best of luck Jonno - hope this is of some help.

Tina Rawlings
Nurse Specialist - Paediatric Spine
Starship Children's Hospital
Auckland

titch
13th November 2008, 04:43 PM
Oh wow Tina, what a fanatastic and informative post :D This is absolutely great, because it will help give any future members from New Zealand a good starting point as well - unfortunately, up until now, I've only ever known of a couple of people who have posted on boards who have been able to get successfully treated, and the general impression I've had was that it was rather difficult to get past the general orthos, or find anyone who was truly specialised, so it's fantastic to actually have names.

Jonno, hopefully this gives you more of a starting point, and will help you reach a point where you can make a useful and informed choice between the benefits of treatment in NZ vs UK :) I've gone back through the thread, as I had meant to reply to it before now. The cheapest that I have heard of a private surgery across here is 10,000. I *think* that if you have surgery privately, and were to need emergency care as a direct result of it (eg severe wound infection manifesing a few weeks later) that while the NHS would treat you for this, you would be charged for it as though private, and that if you had late onset complications such as rod breakage a couple of years after the surgery, again you would have to go private (certainly this is how things used to work with for example breast implants, not because it was cosmetic but because the NHS does not pick up the pieces after private procedures). Given this, I would hazard to say you'd need to budget having 25,000 available for the surgery, and to feel confident that it would not be a total financial disaster if you needed further treatment of some sort in the medium to longer term future.

In terms of waiting time in the UK, the target is 18 weeks from when the decision is taken between you and the specialist that you will go on the waiting list. In practice not all are achieving this, but even so, it's nothing like when I had my last surgery in 2002 and was told that the waiting list was 8-10 months, and was then kept waiting 17 months (and only got it done then because I chased it!) I *think* it is fair to say that even where the targets are being missed, you're still not looking at more than 6 months. If you do want to see someone across here, Mr Grevitt at QMC in Nottingham could be a good one to start with - he did a very successful surgery for a member who had a particularly complex curve combination. There are others who are willing to take on kyphosis cases, including Mr Wojcik (not entirely sure of the spelling!) in Cambridgeshire and Mr Gibson in Newcastle.

Unregistered
11th December 2008, 04:38 AM
Many many thanks Tina for this. A very detailed and amazing post. I've decided to stay in NZ to try and see where I can get to on this, I'm actually seeing Robert Rowan on Dec 23rd so will let you know how it goes. I had an x-ray a month or two ago and apparently my curvature is now closer to 90 degrees so will definitely let you know after Christmas how the consultation goes. Thanks once again. J