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jennyb
18th May 2005, 05:43 PM
Hi, I've just followed the link from handbag.com, really pleased to find this place!

My son Tobey has scoliosis, a hemivertebrae was found when he was in GOSH with kidney failiure, the kidneys are just about under control at the mo but drs expect them to fail at some point in the next 20 years depending on about a million different things!

Tobey's having a partial fusion next month (prob) at GOSH, should be going in soon to find out the exact plan and meet our surgeon etc. We're getting pretty nervous as I'm sure you'll all understand. At first the surgeons ruled out surgery then it seemed to get worse so want to go ahead while he's still young (nearly 3) and his kidneys aren't too bad.

Starting to think of questions for the surgeon so if anyone has any ideas please let me know-my mind always goes blank.

Thanks
Jenny

Jonny
18th May 2005, 08:02 PM
Welcome to SSO Jenny! :wave: hope you like it here.

That's really unsettling about his kidneys. I hope it doesn't affect his quality of life too much. Will it be treated with a transplant in the future?

Tobey's not the only person here with kidney problems - in fact, Chele here (Thaleias spirit) has had kidney problems with congenital scoliosis, and has unfortunately only just got into the scoliosis treatment loop.

It's early for surgery but it's most likely the best time in the long run. With luck it'll be a very short fusion and he won't lose much overall torso height.

Also Sarah (Chrissy's daughter) has just had a fusion at GOSH for juvenile scoliosis (if I'm right...)

I'm 17 and had surgery in the summer for 53 and 30 degree curves at Stanmore. As you think of questions, remember to write them down and take them in - otherwise your mind goes blank. Something about the atmosphere in consultants' offices.

I hope the meeting goes well and you'll feel better prepared. It's major surgery but it can be very successful, risks are much lower than people imagine and there's no doubt you'll have a very competent surgeon there.

and Toni will be pleased! :-D

tonibunny
18th May 2005, 08:43 PM
Hi Jenny!! It was me that posted at Handbag.com :D I'm so glad you've found us! I'm away from home at the moment but am usually very active here, but I just wanted to say hi and welcome :welcome: :joke:

Hopefully chat to you soon!

Toni xxxxx

BeckyH
18th May 2005, 08:56 PM
Originally posted by Jonny@May 18 2005, 07:02 PM


Something about the atmosphere in consultants' offices.


funny, they normally bring on spontaneous crying in me...maybe it's our consultant :D

jonny and i have the same consultant jenny. i'm 18 and am having surgery on july 16th. welcome to SSO (this post is very backwards lol) i've only been here a couple of weeks but already it's an invaluable place for me, i'm sure you'll find it just as good.

best of luck with your son - keep us up to date :squeeze:

mark
18th May 2005, 09:11 PM
Hello Jenny :welcome2: i hope Tobey's not in too much discomfort. I think you will be able to get all the answers to your questions from the site. Everyones friendly and we all support one another through the good and bad times.

Mark

Thaleias spirit
18th May 2005, 10:15 PM
Originally posted by Jonny@May 18 2005, 07:02 PM
Tobey's not the only person here with kidney problems - in fact, Chele here (Thaleias spirit) has had kidney problems with congenital scoliosis, and has unfortunately only just got into the scoliosis treatment loop.
Hi Jenny ... Welcome to SSo.

Jonny already gave you a little bt of info about me so I'll explain a bit more:

I was born with congenital scoliosis but it wasnt noticeable.
I had recurring kidney infections over a number of years and was getting sicker each time. After doing xrays and exams it was realised thet I had in fact only been born with one kidney and the tubes that lead from it needed repairing.

It was when I had the kidney surgery at age 8 that the scoliosis was detected.
Ive had no other problems with my kidney over the years, except for infections which are quickly treated.

However my scoliosis hasnt been monitered or treated until now. I've finally found a consultant who agrees that I should be totlly checked out where my scoliosis is
concerned.

Can I ask how old Tobey is?


I have a friend whos had kidney problems since birth and had both transplanted in recent years. (hes now 33) If there is any information you may need or any clarification you want I can ask him for you.

Feel free to drop me an email / private message is there is anything else you would like to know.


chele

Amazed Jean
18th May 2005, 10:44 PM
Hey jenny. Welcome to SSO. First I 'll give my famous advice. Get a notebook to keep your son's records in. Also a great place to write down questions. Be sure to take it to the doctor's office and clinic visits. Write down what is said to you too. Sometimes we remember the first two or three things the doctor says and forget some of the others. if you take notes you'll know more when you get home. Also try to get copies of everything -xrays, blood work whatever you can even request a copy of what the doctor writes down after your visit. You are going to need these records for the rest of your son's life. NO ONE will be as careful as you will. Clinics, hospitals etc. lose xrays and records all the time. At any rate that will get you started. Come here for hugs, or to rant, or even to whine, or anything else we 're a crazy bunch but always helpful.

jfkimberly
18th May 2005, 10:58 PM
Like Chele, I also have congenital scoliosis, and I was born with just one kidney. Remarkably, my kidney hasn't given me a bit of trouble in my 31 years, and I drink all kinds of sugary soft drinks (my addiction of the past several years is Coca Cola... prior to that, it was Mountain Dew). I guess my functioning kidney makes up for the severity of my scoliosis. It was detected at birth, and doctors attempted to control it with serial casting. But by ten months of age, fusion was a matter of neccesity. A minor complication and a month later, I was fused. I can't tell you what levels are fused, because my vertabrae were so poorly formed in the first place that it's not a simple matter of naming them T1 to T12. My best guess is the fusion starts at what should have been T2 and extends to T10 or so. My xray is in the gallery, but all it shows is a white streaky blob where my thoracic spine should be ( http://www.scoliosis-support.org/uploads/photos/64.jpg -- this picture is to scale... that's my entire torso, as of July 2004).

On the bright side, I'm here to tell the story. *grin*

Anyway, welcome to SSO, Jenny! (I'm writing my post backwards, too, it seems.) Keep us posted on your son. Do the doctors say what his curve(s) is/are? Where are they along his spine?

Be sure to ask how long the fusion will be, if they anticipate further surgery when he's older (if this is a partial fusion, is it just to stabilize until he's had more time to grow?), whether or not it will affect his lung growth... gosh. All kinds of things.

I don't know how you're really doing, since all I see is what you wrote on this board, but I must say you sound pretty accepting of all of this in your post. I am really impressed.

jennyb
19th May 2005, 10:14 AM
Hi, thank you all so much for the replies-lovely to *meet* you all!

Tobeys hemivertibrae is at t4 and I think the curve is about 40 degrees so borderline for surgery but I think the idea is that while his kidneys are stable (fingers crossed) it's a good time to go for it.

He had a urine infection at 3 weeks old which ended up as a kidney infection and acute kidney failiure so ended up at GOSH. His infection left a lot of scarring so his kidney function is about 45%, last time we checked (a year ago) his right kidney hadn't grown in a year, we've just had another scan and will find out if its grown next week. They can't work out if he was born with a kidney problem or if this is all as a result of the infection, I doubt we'll ever know for sure.

Day to day he seems fine, he's nearly 3 now and apart from being a complete nightmare to feed (has always been a problem) and on the lowest growth centile poss is doing well.

We are dreading surgery and often wish I knew what the future holds but theres not much you can do is there? Here and now he's happy and to be honest thats more than we expected a few years ago, when he was in GOSH as a baby we weren't sure he'd make it so I keep reminding myself anything beyond that is positive!

Thanks again-really good to know you're all here.

Jenny

andrea
19th May 2005, 12:30 PM
Hi Jenny

Welcome to SSO! I'm sorry to hear about Tobey (lovely name by the way). My daughter Erin will be 3 in August and has ideopathic scoliosis. She is being treated at RNOH Stanmore (currently in the news as it's the same one treating Abigail Witchalls) with serial plaster jackets. At diagnosis her curve was 62* and I have been told would now be well over 100 if we had not started treatment. She too had a urine infection as a baby and was diagnosed with renal reflux. It doesn't affect her on a daily basis, other than having to take antibiotics to prevent further infection that may damage the kidneys, and her last DMSA scan showed all was working fine. We're scheduled for another in 2006.

Surgery is always scary, especially when they're so young, but it sounds like he is receiving excellent care and doing well. Your positive attitude will help you loads too.

Keep in touch, and good to see you here.
Andrea

jfkimberly
19th May 2005, 09:20 PM
I had an unrelated benign brain tumor crop up a few years ago (I blame the first-generation cellphone I was using in undergrad), and after a half-dozen consults with various specialists, they decided that it was best to go ahead and do surgery rather quickly (there was the option of trying to 'kill' the tumor with radiation, but it's not always successful, and surgery would have to be done anyway if radiation failed). Similar to the thinking in your son's case. I have compromised lung function (well, diminished lung capacity, anyway... my gas exchange is perfect), and a mitral valve prolapse with regurgitation, so major surgery is risky for me, but I'm not expected to get any better over the years... the opposite, really. So they said, "If surgery is a likely outcome, sooner is better than later."

I imagine that's the thinking with your son. His kidney function is good enough that he can get through surgery pretty well now.

Little Ali
6th September 2005, 09:43 PM
Hi there! :welcome2:

I'm Ali, 24 and have Spina Bifida and Kyphoscoliosis. I also have kidney problems, although it's more to do with the Spina Bifida than scoliosis. I have reduced function and get urinary tract infections all the time! :mope:
If I can ever be of any help, or you just need a chat, please PM me.

I hope you enjoy the site. Everyone is lovely!