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magnumlady
19th July 2008, 04:12 PM
Hi everyone, I was on here some years ago.
My son and daughter were diagnosed with scoliosis, now they are both in their teens.
My daughters spine isn't too bad.
My son has kyphosis. He was visiting the hopsital for check ups every sixth months.
In October the consultant decided not to see him for a year as he felt he was doing fine.
I was concerned about his back though and arranged an appointment for yesterday.
His curve was 45 degrees in October and is now 78 degrees so we are booked in to see the brace fitters on Friday.
I've really no idea what this involves so if anyone can give any advice or point me in the right direction that would be great thanks.

tonibunny
19th July 2008, 05:00 PM
Hi Magnumlady,

Welcome back! Sorry you've had cause to come back though, obviously. How old is your son now?

It's difficult to say what you can expect from your brace fitters as different orthotists work in different ways. Some braces are custom made, which involves taking a plaster cast of the body, whilst others can be created from "off the shelf" components. Having a brace fitted (or having the plaster mould made) isn't painful though, so you needn't get worried about anything like that :)

Toni xx

magnumlady
19th July 2008, 05:04 PM
Thanks for the reply Toni.
My son is 15 now.
He's had a curve since he was 7 but it was always fairly mild until now.
We aren't even sure if they will fit him with a brace, the consultant said we have to wait and see what the brace fitters think, so its all a bit up in the air at the moment.

mark
19th July 2008, 05:19 PM
Hi welcome to the boards, i can't really help with the brace as i was never braced as a child, your sons curves are probably nearing or have just surpassed the point where surgical may be necessary/an option, i hope you can get your sons curves sorted before surgery is necessary,

I'm sorry for the reasons that have brought you back here, it must be so worrying for you, now here though we will do our best to support you through it all.

I would just say, push, push and push some more for the best treatment for your son, if you look in the post below this pictures of my back you will see what happens when kyphosis curves get left. (thats me by the way)

Good luck and we will be with you, no matter what

Take care


mark

magnumlady
19th July 2008, 05:57 PM
Hi Mark,

Thanks so much for your reply.

Do you mind me asking if you have much pain with your back? Can you have surgery? Or would you want surgery?

I'm really torn at the moment about the whole thing, it was a bit of a shock. I know Jono had got worse but didn't realise how much worse until I saw the two xrays.

He also has Asperger's syndrome (a form of autism) so I really don't know how he will cope with the brace and thats if they decide to brace.

Also he has a bleeding disorder so that worries me even more about surgery. The consultant mentioned something about it yesterday.

mark
19th July 2008, 06:15 PM
Hi

i wa diagnosed in the early 80s when kyphosis surgery was dangerous and not many surgeons would take the risk, things have changed, techniques and procedues and monitoring during the op have come on leaps and bounds, the reason its a little more dangerous is due to the way the curve develops,

Sorry about the asperger's, my nephew has the condition and i know just what you mean about the brace, he has his set routines and any deviation brings all mary hell to bare, i really think the only one who can answer that question is the surgeon, i think it may be you will just have to giveit a go and see what happens, once he's used to it and it becomes routine he may accept it, lets hope so

I have been in pain all my life, its apart of me, i'm now on the journey again, if read the last 5 or 6 pages of that thread then you will see what i have been going through, i would hate to see anyone else go through the same, is your son on any medication, if so the surgeon will need to know,

About ther bleeding condition, that is slightly worrying, i think again only medical opinion will help you there, i will do a little research on the web for you if you want, can you let me know what the condition is he has,

i hope this helps a little, if not let me know either by e mail or pm and i will try and help you that way

take care

mark

Amazed Jean
19th July 2008, 08:21 PM
Hello and Welcome back! I'm sending you and son some great big hugs. I am sorry you have to go through this now. BUT I think you found the right place.

magnumlady
12th August 2008, 09:12 PM
Sorry for not getting back sooner, we've had lots of appointments.
Mark you've really had a rough time of things. Thanks for your kind words.
Thanks for the welcome Jean.

Well we went to see the back brace fitters and they took measurements of my son, they ruled out a milwaukee brace because of the Asperger's. So we have an appointment this Friday....which I presume is to get the brace, but we'll know more then.

mark
12th August 2008, 09:17 PM
What type of brace did they say were fitting, was it a spinecor?

magnumlady
12th August 2008, 09:21 PM
They didn't tell us anything (it was very hard to get any info). They just said they wanted to talk to the consultant before they decided.....I even hung around the hospital until after they'd seen him, but they just told us we could go home!
So I hope we will know more on Friday.

mark
12th August 2008, 09:23 PM
Me too, how is your son with it all, sorry for all the questions

magnumlady
12th August 2008, 09:26 PM
He was really upset about it all...bless him. I just said we would cope with it, the way we cope with everything else.
He is more worried about surgery then a brace (although its sounding like it might come to that).
He had to see a physiotherapist as well, although she said he was in so much pain with the exercises she was trying to do with him that she felt she couldn't help him but that swimming would be the best thing.
I've noticed he's been having quite a few more 'jolts' as he calls them over the last few weeks so I'll have to keep an eye on that.
Thanks for your replies, I really appreciate it.

mark
12th August 2008, 09:34 PM
Yes, i hope you don't need to go down the surgical route and you can beat this through the brace, the only concilation and its not much of one, if he does need surgery then he is young and supple enough to get a really good fusion and correction, you miust be so worried my heart goes out to you and your family, sometimes all us sufferers think about our own pains and tend to forget what our families must be going through

Keep us updated i will be thinking of you on friday

magnumlady
12th August 2008, 09:47 PM
Thanks Mark.

I thought surgery couldn't be done until the spine is fully grown?? I might be wrong there though.
The only thing that puts me off the brace is that they said it won't improve his back it'll just stop it getting worse.
Well hopefully we'll know more Friday.

mark
12th August 2008, 09:50 PM
Yes i was going to say something along those lines with the brace but i didn't want to flatten you any more than you already are, the last conversation i had with my consultant when talking about the treatment i didnt recieve as a child he virtualy said that a brace probably wouldn't have worked and surgery would have been inevatable

magnumlady
12th August 2008, 09:53 PM
That was more or less what the brace fitter said.
Oh well I suppose we'll cross each bridge as we get to it.
The physio was amazed that his breathing was OK. So thats a plus anyway.

mark
12th August 2008, 09:55 PM
Yes it is good that his breathing is ok, you got to feed of all the positives, did he do any lung function tests

magnumlady
12th August 2008, 11:14 PM
No lung function tests, or tests or any kind...only more xrays.
Love your pic by the way!

mark
12th August 2008, 11:19 PM
Thanks, she's 4 going on 44, a complete handful, i'm the only man in the house now the dogs gone :scared::eek::scared:

Wishing you well for friday

magnumlady
12th August 2008, 11:24 PM
She looks lovely.
Thanks for all your kind words.

mark
12th August 2008, 11:43 PM
Thats ok, we are all one big community who have one thing in common, our backs aren't as straight as they should be

All we want to do is offer support to one another through the good and bad times

Welcome to our family

mark

sins
13th August 2008, 10:21 AM
Hi magnumlady,
Greetings from wet and windy Cork.
Who is your son attending about his kyphosis if you don't mind me asking? My son also has asperger's and I can imagine that there's not a snowballs in hell chance of ever fitting him with any kind of brace should it ever be needed.It would be impossible to convince him to wear it.
Anyway, I'm the one with the spinal curvature but just wanted to welcome you to the site and hope that we can be of some help to you with this.
No, your son does not have to be finished growing in order to have surgery, they would do a two stage surgery, anterior/posterior where they would fuse both the front of the spine and the back part as well.
It's a major op as you probably know. I expect their next step will be an MRI scan to examine the spinal cord.I also feel that they will not operate immediately but consider surgery as a last resort.However if the curve continues to increase they may then opt for it.I understand that the waiting lists aren't too bad at the moment.
Sins

Taylor
13th August 2008, 11:09 AM
Hey there!

I'm not built up on knowledge when it comes to braces or even kyphosis at that, but I though I'd drop by and say Welcome and good luck with your son and hope that a brace is all he'll need!

:)

twizzlegirl
13th August 2008, 12:41 PM
Sorry to hear it's got worse...i've never had a brace so i won't be much help but just wanted to say, hope it all goes ok! xxx

magnumlady
13th August 2008, 06:10 PM
Awww thanks so much for your messages, I'm overwhelmed at how kind you all are.

Sins we are in Sligo (great summer we are having!!)
Myself and my hubby were talking this morning about how we will get on with him wearing the brace, also its so near him going back to school, so not only one change of routine but two in a short space of time.
He is so against surgery at the moment that he might wear the brace, I suppose we'll have to wait and see.
The people that fit the brace come from Cappagh hospital in Dublin to do it, which is great as it saves all the travelling.

Thanks so much once again to you all.

Buffalowilliam
13th August 2008, 06:29 PM
Hi there Magnumlady, sorry for all the difficulties you're facing. I had a brace when I was at school, guess I was around 16/17 at the time. As the brace fitter said, it can't improve your sons condition but is a way to stop it getting any worse. I had to wear mine 23/24 hours a day and it really happened too late to make any difference and I had my heart set on surgery anyway. So for me it was a frustrating experience ... two years of being hot and bothered and encased in plastic for basically no reason. However, if your son is still growing then a brace is probably the best idea.

Have to say I really enjoyed the brace fittings! They wrapped me in bandages soaked in plaster that, through some sort of chemical reaction, heated themselves up and then hardened. Was like a great big hug! I was braced and had kyphosis surgery (doing great now) so if you have any questions don't hesitate to ask. All the best with everything.

Simon
13th August 2008, 06:57 PM
Hi just wanted to welcome you to this great wonky club ....

Am simon and as with mark i went though the 80s with surgeons saying no its to dangerous but i fought and fought and fought and i got my surgery done this year .

Its sounds to me that your son has gone though a growth spurt and thats why its gone to over 70 degrees I think the brace might not be of any help to your son at the moment and might need to have surgery to correct the curve .
Mine was just touching 100 degrees when i had surgery and as your son is still young he would recover more quickly Than us oldies .
I really really hope that am wrong can i just say that we are hear for you and you son no matter what .
If your son would like to come online and talk about his condition we are all hear for him too.
Any questions that you may have just type away and we will all do our best to answer you .
Take care

Simon

magnumlady
13th August 2008, 07:30 PM
Thanks Simon and Buffalowilliam. I really should do more reading about surgery. I guess I'm really frightened about it and what could happen if it goes wrong. It sounds like you guys have come through the other end so there is hope.
I think what worries me is that we had an occupational therapist around to look at the house and she did a report that mentioned wheelchairs, so it sort of set alarm bells ringing.
So far with the brace fitting they have only taken measurements, so I don't know if he is getting a brace on Friday, or whats happening. I really wish they would keep us more informed...it'd be nice to know whats going to happen, at least that way Jono would know in advance.

Buffalowilliam
14th August 2008, 11:02 AM
The NHS do love to keep you in the dark don't they! I wouldn't worry too much about the surgery going wrong, obviously it'll always be a concern but whether or not you worry about it will have no effect on the outcome of the surgery so I think its best to try and stay positive. I approached it in the same way I approach flying - rather than concentrating on the one single event that you're leading up to (the surgery/the flight) I'd try and think instead about the thousands of procedures that go on day in, day out and you never hear about because they go off without a hitch. It's far far more likely that everything is going to be just fine ... helped my go from being really anxious to low level concern. Not sure if the same could be said of my mother though so maybe it won't help at all!

Think you're OT is just planning for all eventualities. The day after I had surgery I stood under my own power (with the help of a walker) and was out of hospital in six days. My mum came and picked me up in the car and we went into town, went to Blockbuster and picked out some videos. I was EXHAUSTED by the time I got home, but still not bad being up and around so soon. There was certainly no possibility of a wheelchair.

sins
14th August 2008, 01:25 PM
From the research that I've seen on line the risk of paralysis for scoliosis ranges from between 1/1000 to 1/10,000 and for kyphosis the risk was quoted at 1/100.
This means that there's a 99% chance that for a first time surgery that everything will be fine.
To be fair to any surgeon they will not willingly subject a patient to a surgical procedure if there's a non surgical option that's open to them.
The main risks are infection,hook and screw pullout and in rare cases failure of fusion.
I think discuss with your surgeon about the risks of surgery,but if your son is open to bracing or non surgical therapy then you have nothing to lose by giving that a chance.
Sins

magnumlady
14th August 2008, 11:07 PM
I suppose whats putting us off surgery is that my dad had so many mistakes happen to him in hospital....not for back surgery but for other things.
Mnd you I suppose we shouldn't let that cloud our judgement.
Oh well we'll see what happens tomorrow.

Buffalowilliam, you sound like you were very determind. Well done to you, how are you doing now?

Thanks for the research Sins, that sounds really positive.

Buffalowilliam
15th August 2008, 06:38 PM
Really great thanks! Had some problems with my lower back recently, but I have a sneaking suspicion my physio might be a magician as he's working wonders!

magnumlady
15th August 2008, 07:24 PM
Really great thanks! Had some problems with my lower back recently, but I have a sneaking suspicion my physio might be a magician as he's working wonders!

I hope you get sorted out soon.

magnumlady
24th August 2008, 04:44 PM
Well, he got the backbrace.
Its called an otto bock hyperextension orthosis.
Not going well.

mark
24th August 2008, 05:26 PM
Hi Magnumlady

Sorry i haven't heard of that brace, can you tell us a little more about it, sorry to read things aren't going well, is that he doesn't want to wear it

hugs from the North of England

mark

magnumlady
24th August 2008, 05:57 PM
Hi Mark,

I took a couple of pics:
http://i20.photobucket.com/albums/b237/magnumlady/DSCF1045.jpg
http://i20.photobucket.com/albums/b237/magnumlady/DSCF1046.jpg

He finds it so uncomfortable, he's OK if he's standing up but can't sit down with it, or eat with it on.
It presses against his chest and makes him feel sick, also presses against his bladder.

I though they would come up with something that goes over his shoulders, but seemingly not.

Thanks for your reply,
Val

jfkimberly
25th August 2008, 10:37 PM
Even without the tactile issues associated with Asperger's, I can see why that brace would make sitting and eating difficult. I don't know what to tell you, other than I'm thinking of you guys, and I hope he is able to get "comfortable" (as much as it is possible to) with it.

magnumlady
25th August 2008, 10:45 PM
Even without the tactile issues associated with Asperger's, I can see why that brace would make sitting and eating difficult. I don't know what to tell you, other than I'm thinking of you guys, and I hope he is able to get "comfortable" (as much as it is possible to) with it.


Thanks so much for your reply. I appreciate it.

Buffalowilliam
26th August 2008, 11:06 AM
That certainly doesn't look comfortable. The only positive thing I can say about my bracing was that it went someway to relieving the stress on my back that was caused by walking around etc and there were definitely points when I couldn't wait to get the thing on so as to provide some pain relief and give some respite to my aching back. So although obviously its a massive adjustment hopefully your son will get benefit from it and grow accustomed to its prescence. Wishing you all the best of luck in the world!

sins
26th August 2008, 12:09 PM
Have you spoken with the consultant about what he hopes to achieve by using this type of brace? Do you have to travel to Dublin to meet him or are you seeing a local consultant?Also has your son had an MRI scan at all?
Sins

titch
26th August 2008, 12:28 PM
I don't know if it is of any use, but I found this: http://www.ottobock.com/cps/rde/xchg/ob_com_en/hs.xsl/3272.html which appears to be the kind of brace that your son has. According to the blurb, it is adjustable, so while it probably requires some special tools so that only the orthotist can do it, I would think that you could try to get an appointment with the orthotist to see if it can be adjusted in a way that allows him to sit down more comfortably at least.

Sorry I can't offer anything more useful :squeeze:

magnumlady
26th August 2008, 02:15 PM
Thanks so much for the replies.

The odd thing is he has more pain with the brace on then with it off.
It has been adjusted as much as it can be.
We see the consultant on the 5th, so hopefully we can resolve some issues then. We see him in Sligo (he's an orthopedic consultant).
My son has never had an mri scan....which I think he should have.

At the moment he can only wear it when he is standing, so thats not very practical.

sins
26th August 2008, 02:50 PM
If I may make a suggestion ! There are no surgical facilities in Sligo for scoliosis/kyphosis.If your son is approaching the point where surgery is a possible option then I think perhaps a second opinion with one of the Dublin specialists is a good idea.I would not be happy that my son would have had this brace fitted without an mri scan considering the rate of progression of the curve.
Is your specialist based in Sligo or is he one of the Dublin specialists who visits?
Sins

magnumlady
26th August 2008, 03:00 PM
Sins I think you are very right.
The man who fitted the brace was a specialist fom Dublin.
The consultant is an orthopedic consultant based in Sligo.
I had wondered why an mri scan wasn't mentioned, it all seems a bit hit and miss.
We were told anything much about the brace until he got it.

Well my son can't wear the thing and sit down so he won't be able to wear it much at all, we see the orthopedic consultant a week on Friday, so I'm going to find out what I can then.

Thanks for your words of advice.

sins
26th August 2008, 03:10 PM
There's a list of specialists on the top of the forum.It might be worthwhile trying to get to see one of them.
back in the 1980's I was referred to my local orthopaedic hospital with a 45 deg curve.By the time thery were finished messing around with bracing and other stuff it was 7 years later and my curve was an uncorrectable 120 degrees by the time I was referred to Dublin.I'm not suggesting that your son's treatment isn't adequate as I have no medical knowledge but I'm a great believer in getting treated or assessed at a centre of excellence by specialists who regularly do spinal deformity surgeries.
Sins

magnumlady
26th August 2008, 04:27 PM
Thanks Sins, thanks so much for your suggestions and advice. I really appreciate it.
I'm going to ask the consultant if he will refer us to Dublin. He was the one who mentioned surgery and I feel that he felt the bracing wouldn't work, but at that time I was dead set against surgery.
Talking to people like you and others on this board and reading up on things is really changing my mind about surgery.

magnumlady
16th March 2009, 04:55 PM
Hello everyone.
Just an update, my son had his mri scan and we have an appointment in Dublin on Thursday. This is my sons most recent xray:
http://www.flickr.com/photos/magnumlady/3352410370/

mark
16th March 2009, 11:28 PM
Have you been told what the cobb angle is

magnumlady
17th March 2009, 10:45 AM
Hi Mark....sorry I haven't a clue what a cobb angle is.

mark
18th March 2009, 01:46 PM
The cobb angle is the degree of curve, for kyphosis the normal is below 40 degrees up to 70 is conservative and therapy treatments anything above 90 degrees is generally considered for surgery

Depends on a lot of other factors too but thats a ball park summing up

mark

magnumlady
18th March 2009, 02:14 PM
Thanks Mark.

I was told his curve had gone from 37 degrees in 2007 to 78 degrees in 2008.
At least we are finally getting to see a specialist tomorrow, we've been waiting since September.

Thanks again.

mark
18th March 2009, 08:53 PM
Be thinking of you tomorrow

I hope the consultation goes well

magnumlady
18th March 2009, 09:04 PM
Thanks Mark, I appreciate that. Poor fella is in so much pain at the moment (in his shoulder), which I'm guessing is to do with his back, hopefully we'll know more tomorrow.

magnumlady
21st March 2009, 05:12 PM
Just to let you know the appointment went well. They really seem to know what they are doing.
Jono's curve is now 90 degrees, they have recommended spinal fusion....Jono is so worried, but his curve seems to be progressing quite rapidly and he is in a lot of pain, mainly with his shoulders.

mark
24th March 2009, 12:27 AM
Hi, well you know have a confirmed diagnosis and a plan of sorts. I know surgery can be daunting for anyone to comprehend. If you have any questions do not hesitate to ask and i hope we can help you. Its not an easy operation and the recovery period can be long. Theres pros and cons on both sides

Good luck with your decision

Mark