View Full Version : Hi, got pre op date!
4th August 2005, 11:38 AM
Hi, finally heard from GOSH we're in on 9th sept for our pre op then we'll get a date for Tobeys surgery-ARGGGHH!
The thing that bothers me is that we've only had 1 good X-ray (he hates the things and will not sit still) which showed a 35 deg curve-that was about 2 years ago and we can't tell if its got worse. A couple of friends saw Tobey a few weeks ago after being away a year and thought he looked much better and I'm not sure-I looked at an old video of him and I really don't think its got worse-maybe wishful thinking?! It just seems a bit odd that they can't confirm the curve has progressed but still want to operate.
How serious is a 35 deg curve? It's not really noticable and doesn't stop him doing anything so does it need a fusion? What I don't understand is his scoliosis is congenital-he has a hemiverebrae at T4-T5 so that is the cause of the curve, if all the bones grow at the same rate does that not mean logically the curve should remain the same-or is that not how it works?
I will ask the surgeons all of this but I thought someone here might know or at least help me work out exactly what I should be asking!
Thanks all, off to watch your life in their hands now while Tobeys out hope it doesn't put me off too much!
4th August 2005, 01:01 PM
I have an almost 2 year old daughter who has ideopathic scoliosis with approx 37* curve. She is currently in a brace but will be going back into a cast in the next few weeks. I am afraid I can't answer your question if tobey needs a fusion. Congenital scolisis is treated differently to ideopathic scoliosis and given the problems your son has with his kidneys they may feel that it is better to be proactive about his treatment rather than waiting and seeing.
I am assuming that part of his pre-op work up will be further x-rays, and hopefully they will be able to give you a better idea of the progress or lack thereof his curve at that stage. It is a nightmre trying to get them to stand still for the few seconds isn't it? I have had to physically hold Niamh down for one or two of hers which is not nice for anyone :-( .
I am sure some of the others will have more info for you, sept is a bit away yet so you have plenty of time to gather your facts and write your list of questions.
Best of luck
4th August 2005, 06:38 PM
You said you only have one good xray... does that mean you've some xrays that aren't as clear as you'd like, or does that mean you don't have any others that show the spine at all? How "blind" are the surgeons as they go into this? Have they attempted to measure his curve on more recent xrays?
Facing the prospect of surgery, I'd want a lot more certainty of his condition... I understand your doubts. At the same time, though, congenital scoliosis is almost certain to progress (emphasis on the word "almost"--there are always exceptions, and it's possible your son is one).
Are they still planning to do a partial fusion? Have they explained in more detail what a "partial fusion" entails? I imagine they'll do that at the pre-op appointment.
My best wishes for you and your family. As I told you when you first joined SSo, no matter what they do Tobey will be okay. I am proof enough of that. Hopefully, though, they'll be able to stabilize his spine without extending the fusion too much at his young age so he can get some good thoracic growth/development.
5th August 2005, 11:25 AM
Hi, thanks for the replies, its so good to know there are people out there who understand all this!
Tobey is a complete terror when it comes to any medical intervention-even height and weight so when it comes to X-rays he literally screams the place down-it took 4 of us to hold him down for an ultrasound (well at least he's getting stronger!). But it does mean his x-rays over the last few years are really unclear-the surgeons can't get an accurate reading. We will have another x-ray at the pre op and I think I'll ask in advance for extra help and we'll have to hold him down which will be horrible but I think it has to be done.
The surgoen made a good case for the op and he did make sense but we then saw our nephrologist who was very surprised we were having surgery and thought it wasn't really needed as it was a "mild scoliosis" and suggested we have a long talk with the surgeon.
I know the likelihood is that the curve will worsen and that it's better to have the op now (especially with the poss of renal problems later) I just sometimes feel that the surgeons attitude is sort of "we might as well do it" rather than "this is needed" if that makes sense?!
At our last meeting the idea was to fuse 4 vertebrae shaving the right hand side and adding a bone graft to the left (no instrumenation) and see how it goes possibly going in again at a later date-mainly if there is a block on the left.
Hopefully I'll get all the answers I need in September, if I knew he definately needed this I'd feel happier about it if that makes sense!
5th August 2005, 01:57 PM
yes, I can certainly understand your dilemma.I wouldn't necessarily say 40 degrees is a mild scoliosis.Under normal circumstances though I can't imagine surgery being the first option were it not for the renal disease.
Ask your surgeon if this is likely to be his one and only shot at surgery or could he tolerate more than one procedure over the years.
You should also try getting a private opinion from another surgeon.If you can get hold of his medical records, it may be useful to pay the £150 and see what a specialist at somewhere like QMC would say.
what does the renal specialist think at GOSH?How stable is he and how does his condition impact on any future surgeries.
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