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jennyb
7th September 2005, 07:24 PM
Well actually not half just the echo but tobeys heart was perfect. First time we've been for a test thats not shown a problem!

The cardiologist we saw was really surprised Tobey was having surgery-he checked him over had a good look at his spine and said we should have a really good talk to the orthos. He was really lovely and said obviously he's not a specialist but the scoliosis seems minor and he didn't think they normally operated unless over 40 deg. Argggghhh this is exactly what our nephrologist said-it's really making me doubt the surgery now even more, I'll have to really grill them Friday when we have the rest of the pre op!

Does anyone know where I can get more info on progression of curves? Or does anyone know how curves are classified as minor/moderate/severe?

I will try to have an open mind and listen on friday, after all they are the experts but it is all making me wonder. Anyway I will continue researching but if anyone knows of any good sites let me know-thanks!

Jenny

Sealy
7th September 2005, 07:39 PM
Jenny,

I don't know too much about congenital scoliosis but it's not the first time I've heard surgeons wanting to do surgery on a curve which measures about 30 degrees. I truly don't know the reasoning for it, it could be due to rigidity issues :???: Refresh my memory again, does your son have a lumbar hemivertebra ? Are they planning to do an excision surgery ?



Sealy

jennyb
7th September 2005, 09:18 PM
Hi, hv is at t4-t5, they haven't decided exactly what to do yet prob partial fusion, what worried me was that I assumed all this was normal procedure but the response of the nephrologist and cardiologist has me wondering if this is too aggressive? I've found it hard to find info on any patients having surgery for under 40 deg curves, although I'm sure there are loads-more to ask on friday i guess! Hopefully all will be explained-maybe I've missed a vital point or something?

Thanks jen

sins
7th September 2005, 09:28 PM
It appears that your consultant is considering surgery at this stage in case your son's kidneys deteriorate at some stage in the future.I presume he's ordered those tests to help him in his decision or at least in an attempt to predict what will happen.A partial fusion doesn't sound too bad though.I expect he'll also continue to monitor the curve to assess progression.
It's not possible to make a decision that you're comfortable with while not in full possession of all the facts.You need to ask some hard questions!
(1) What is the reason for fusion at this stage, fear of future organ failure or to arrest the curve?
(2) If his spine is fused or partly fused at this young age, how does he expect this to impact on his lung capacity in future years? Will it alter the growth of his chest wall?
(3)What exactly did the nephrologist say about his kidney status?
(4) what advice does your GP give?
You know you can always let him go on the waiting list and defer surgery if you change your mind.I would suggest using that time to gather as much medical data as you can and get a second opinion.
Sins

newgirl
8th September 2005, 12:03 AM
Jenny,
I am not very familiar with the treatment of congenital scoliosis, but I do think that the questions that sins has posed here do demand an answer prior to surgery. I am assuming that all these pre op tests are been carried out in the same hospital so your ortho will have access to the other opinions.
If it was me I would ask for a long consultation with your ortho and ask all your questions, and get a second ortho opinion. I know this may be difficult to arrange but in the long term it will do one of two things, reassure you that surgery is necessary at this stage or give you the confidence to delay it until a more appropriate time.
Let us know how you get on
Nicola

jennyb
8th September 2005, 11:12 AM
Hi, thanks so much for the replies-sins those are great questions that I've added to my list. I think I'll insist on a long consultation until all my questions are answered-I need to be sure. I've had a quick chat with the nephrologist and she has said he is fit for surgery but also (fingers crossed) doesn't anticipate any deterioration in his kidneys hopefully until late teens/early adulthood so from her perspective there's no need to rush.

From what I can work out thoracic curves do generally tend to progress, and the hv means it won't correct itself so I think they want to make it a bit better before it gets worse also Tobeys never really had a growth spurt so I think they are assuming when he does it will worsen and better to have had the surgery.

Oh well I'm off to write up my questions and hopefully I'll get some answers tomorrow. Thanks again everyone, I was worried that I was getting too worked up!

I'll let you know how it goes.

Jenny

andrea
8th September 2005, 01:21 PM
Sorry for my late reply. I can't really add much to the posts of the others, but you definitely need to get some answers, as difficult as that sometimes is. Great news on his tests though, and the fact he had a perfect result.

Best of luck for the appointment tomorrow. Please let us know how you go.

Andrea
x

jennyb
9th September 2005, 06:42 PM
Well it went really well today. Thanks so much for all the support, knowing that I wasn't crazy for questioning what was happening really gave me a lot of confidence today.

We had all the tests which went well and then saw the consultant, he measured tobeys curve at 30 (really good clear x-ray which involved a lot of bribery and chocolate buttons!). After a lot of discussion we're all agreed that as no progression has been shown (previous X-rays 2 years ago showed 35-40) there will be no surgery at the moment.

He did say most curves progress and he may need surgery at a later date but with a 30 deg curve and no progression he wouldn't advise operating now. There does seem to have been quite a bit of confusion about tobey-the notes seem to suggest some really different opinions but this decision seems to be the general consensus.

I know he may need it later but I'd rather we were all sure it was needed, I don't think there can be any doubts. So thanks again everyone!

Jenny

tonibunny
9th September 2005, 06:44 PM
Brilliant news Jenny! It's really encouraging to hear that Tobey's curve is stable for now :D Congrats!

andrea
9th September 2005, 07:37 PM
That is such great news Jenny - the best you could have hoped for! Sounds like a very wise decision too. Well done you.

newgirl
9th September 2005, 09:34 PM
That is great Jenny, no progression in over 2 years is good news and it is great that his kidneys and everything else is also stable at the moment.
Enjoy your weekend, I am sure this is a huge weight off your mind.
Nicola

Sealy
9th September 2005, 09:43 PM
That is wonderful news Jenny ! :jump: :clap: I'm sure your little guy would be jumping for joy too if he knew :D




Sealy

sins
9th September 2005, 10:29 PM
That's great to hear Jenny, 30 degrees isn't such a bad curve and you must be thrilled that he doesn't need the surgery.I'm sure it's the right decision for him.
There's no guarantee a curve will progress, it may remain stable until the teenage growth spurt or even all his life.The important thing is that they observe it carefully and know when to intervene.
Have a great weekend and put your feet up.
Sins

jennyb
10th September 2005, 01:02 PM
Hi, thanks everyone, must admit I had a few glasses of wine last night and had the best nights sleep I've had in ages! If he needs the op later then thats fine (well not really but you know what I mean) but I want everyone to be sure so I can feel confident about whats happening.

Must admit I got annoyed yesterday-I asked the fellow if thoracic curves generally progress in his experience and he said oh you even know the words-so not at all patronising! never mind at least i don't have to see them for 6 months. I wish they'd credit patients and parents with some intelligence, I was told once not to look everything up too much as it'd make me nervous!

Thanks again

jenny