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Phil
7th September 2006, 11:27 AM
As I said on my B'day thread I had booked an appointment because I was a little concerned with a few things, those being a bit of pain and loss in height.

Surgeon was great and booked me in with 2 days of calling. Had x rays then into the consultation room I go.

Put simply, my unfused spine above T5 is curving. I was aware this could happen but to hear it has upset me a bit.

He said his options are, going back in and fusing as high as he can go.
Monitoring it and hoping it will stop at some point.

This was pretty much it. He did not have an explanation as to why.

He recomended not opening me back up for a while yet and to monitor. He said any further fusion would have larger risks and the surgery itself would be difficult.
He is also aware how important my career is to me, so he also added at present I can continue with it but any further work would possibly leave me looking for a less physical job.

The good news is I'm fully fused after 9 months!

I'm not going to think about it if I can help it. Just needed to vent off and inform you guys.

Thanks :D

PS, hope you are all well!

titch
7th September 2006, 11:35 AM
I'm sorry to hear that Phil. It's good news that your fusion is all intact though, so hopefully the additional curvature will stop, but if you do feel that it needs fixing at some point in the future, there will be a very strong base on which to fix it. Jonny can probably give you a good idea what the differences are like actually, in terms of flexibility and so on, as where he'd thought his original fusion was to T3 I believe he later found out it was actually to T5, and the extension took it to T1.

I think your surgeon probably has the right idea in terms of being cautious and monitoring for a while. Did you ask him about the possibility of physiotherapy, now that you're fused? While it's unlikely that they'd be able to regain any of the lost height for you, I would certainly expect that they could give you strengthening exercises and stretches which would make things comfortable, and may even help slow or stop any potential progression.

I don't want to sound down on your surgeon at all, but nevertheless with the uncertainties that you've felt at various points, I would suggest that before getting anything more done other than just monitoring, you should see about getting a second opinion just for your own peace of mind.

Still, I have my fingers crossed for you that it will all stabilise again :squeeze:

mark
7th September 2006, 11:54 AM
Sory to hear about the fusion Phil. I think your right to take your career into consideration when deciding what course of action you are going to take. As titch says exercises could aid in slowing the progression of the curve. I know you used to do weights and exercise so it should not be too much trouble.

Hope you can come to a decision that doesnt upset your life too much

Take care

Mark

Phil
7th September 2006, 11:55 AM
Thanks for that titch. I really dont have a great idea of how to go about getting a second opinion. Also I would be rather "scared" confronting my surgeon bout that lol.

He still said physiotherapy would be of no benifit to me which annoyed me. I do happen to know a little bit about this now! :)
I am going private for physio with work anyway when I can find someone who will deal with a fused spine!

What I'm really concered about is being forgotten about in the future, a surgeon then saying to me they will not do anything for me for whatever reason. I have huge insecurities regarding this considering how hard it was to get surgery in the first place.

I really dont mind about losing a bit of correction, I just wish I'd knew that it will stop.

Thanks again, great knowledge as always.

sins
7th September 2006, 12:17 PM
Hi Phil,
I can understand why you'd be fed up over this.
Sommetimes when fusions are left a little short, the area above or below can continue to curve.Sometimes it can settle by itself.
My consultant also feels that while physiotherapy may feel Nice, it is of limited benefit and recommended a gym subscription instead.
Johnny of course has had his revision surgery for kyphosis above the original fusion but in his case his hooks had pulled out of the vertebrae.
As long as your instrumentation is in place and the pain is manageable, I think observation is fine.
I still favour getting a second opinion! get hold of your x rays and take them to a private consultation with someone in QMC or stanmore. Anywhere that they have experience in revision surgery would be fine.
An opinion is only an opinion and you needn't mention it to your surgeon.
A private appointment would be expensive but well worth the peace of mind it can bring.
Sins

titch
7th September 2006, 12:26 PM
As far as expense goes, QMC is probably cheaper than Stanmore :P When I had to pay for a private appointment to get to see Mr Lehovsky (after they cancelled my appointment and expected me to wait 4 or 5 months for a new one :rant: ), it was 150 for an initial consultation, and 100 for follow ups. Mr Webb was 130 for initial consultation, and 60 for follow ups.

Your GP should just refer you straight to whoever you choose, and your existing surgeon never needs be told. It would be a wise idea, for your pocket if nothing else, to get a copy of all your xrays before going for a second opinion, so you can take along a pair of before xrays, a pair of after surgery xrays and a pair of now xrays.

Phil
7th September 2006, 12:32 PM
Thanks for that info Sins, and thanks for your thoughts Mark.

Ok, I know how to get hold of my x rays but how do I book a private appointment and with whom. I think I'm going to leave it a while before I do anything anyway. Allow myself and family to monitor. It was them who said how I had lost correction in the first place.

Not sure if I need to rush it or not. My surgeon does not want to see me till april next year now. He says he intends to review my case 6 monthly until further notice which is a little reassuring.

I have a real issue challanging surgeons and doctors. Anyone else have this issue?

sins
7th September 2006, 02:40 PM
I think everyone does Phil!
It's even harder with a doctor you've never met before, there's almost a cast iron guarantee you'll forget half your questions or get sidetracked from the central issue, but if you go private, you'll have more time and attention from the specialist .
Sins

Little Ali
7th September 2006, 08:43 PM
I'm really to hear this is happening Phil! The thought of more surgery and complications is never a nice one! :squeeze:
Thinking of you!

BeckyH
8th September 2006, 08:01 PM
phil to get a private appointment you have to get the phone number for the surgeon's secretary (whichever surgeon you choose that to be) and my surgeon was 150 per consultation and about that again for xrays (though you don't need those because you already have them)

i'm really sorry to hear you're having trouble and i hope you get the treatment you deserve, whether that's non-surgical or a second opinion. best of luck.

Amazed Jean
9th September 2006, 06:44 AM
Phil, I'm sorry you are still in pain and have lost some height. (But I 'm glad to see you back on SSO - I missed you. I don't have any advice about doctors. They frustrate the hell out of me. I have become a strong beleiver in being a total pain in the ass with doctors until they send me somewhere else or get out their books and tell me what else I can do. (Hence my 3 lung specialists in 1 year) I also think its a good time to get copies of all your xrays - tell them you doing research for a class or something. ALSO Remember that YOU are the guardian of your health. Trust your gut instinct!

zerodegrees
21st September 2006, 09:01 AM
hi phil,

sorry to hear what your going thru. if it helps Mr Webb's secretary at QMC can be contacted on 01159709005.

All you need is a private referal letter which your gp will do for you. Just give the secretary a buzz and she'll book you in. Alternativley you can try my surgeon Mr Grevitt at QMC also. In my experience its probably better to contact Mr Webb & then he can choose an appropriate colleage if necessary. They will then slip you back into the NHS system.

Cheers

John