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jennybarke
02-07-2004, 02:22 PM
Hi all, my son Tobey (18mths) has congenital scoliosis which was first discovered when he was in hospital with kidney failiure at 3 wks old.

The kidneys have always seemed to be the issue, the drs all believed the spine would be ok but now the curve is worsening and they're recommending surgery.

I can't find any UK based forums, I think things might be done slightly differently here but it would be so good to hear from anyone preparing for surgery-we're waiting for an MRI (should be in the next few weeks) and then we should get a date for the op if we agree-so until then any advice or info would be fantastic.
At the mo it's just so good to find this site!

Jenny

Carmell
02-07-2004, 11:22 PM
Hi Jenny,

Welcome to the board. I would be very careful about what surgeries they are recommending for Tobey. If they are suggesting fusion, please make sure there are no other options and that this is the right choice for him, at the right time. Spine surgery should never be taken lightly. There are new advances in congenital scoliosis treatment, and I would hope your docs are up to date on the technology. Do you mind posting what the docs are recommending?

How is Tobey's kidney condition? It is not uncommon to have kidney issues AND spine malformations. The spine and the kidneys develop during the same growth period during fetal growth. Good luck with the MRI too. I hope you can find some answers and get an emotional handle on Tobey's medical condition. I have a friend in Wales who's daughter comes to the USA to have rod lengthening surgery (every 6 months). I'd be happy to give you their contact information. I believe their UK hospital is GOSH.

My best to you.

jennybarke
02-08-2004, 07:50 AM
Hi Carmell

Tobey is at GOSH too who are wonderful but from what I can find out over here surgery is pretty much the first thought-the surgeons and in fact everyone at GOSH seem agast at the idea of a brace, which is why I've been madly researching!

Tobey had severe Kidney failiure at 3 wks after a possible but unconfirmed infection, whilst in hospital they did every test imaginable and a chest xray showed up a hemivertebrae. But everyone told us to ignore it and thought it wouldn't be an issue so it's not something we've thought much of we've just been concentrating on the kidneys.

In the summer our kidney specialist thought it should be followed up and that xray showed the curvature. Practically the first thing mentioned was surgery and when I've mentioned alternatives I've been told surgery (fusion) is the only cure and one surgeon even told me "waiting and seeing or wearing a brace is like going back to the dark ages" which seemed a bit harsh, it just seems so drastic and severe and I'm obviously terrified but we've seen 3 surgeons and they all agree that they would recommend a fusion in the next year (dependant on the MRI).

Tobey's kidneys are ok at the mo he has about 45% capacity but I think the latest ultrasound will show the kidneys are small so we'll see what happens, he has moderate chronic renal failiure and the hope is he'll be in his twenties before intervention is needed (touch wood!).

I'll be seeing the surgeons 2 weeks after the MRI to discuss everything so I want to make sure I know everything I can by then to make an informed decision. I think at the moment it's all such a shock I don't know what to think!

Jenny

lisamack
05-08-2004, 05:03 AM
Hi Jenny

I've sent you a private message, but if you read this, I'd love to email you. I also live in London and my son will be referred to GOSH soon. (For details of his situation, see my recent post: Premature baby just diagnosed)

Lisa