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View Full Version : Caring for a challenged kyphosis patient



Unregistered
3rd November 2008, 05:12 PM
Hello,

My Name is John and my son Sean is the one with a thoracic kyphosis. We live near Baltimore MD and will be seen at Johns Hopkins. Sean is 16 years old, has a rare genetic condition called tetrasomy 18p and we are considering surgery, since he's at a 75 degree curve. He's a healthy lad, skinny as a rail but presents some unique challenges.

While I'm thinking I don't really want to know what the docs will do (I've seen the pictures, geeze the miracles of modern science still can scare the pants off of you) my primary concern is what happens afterwards. You see, Sean is mentally impaired, he's like a 5'7" 5 year old, and his ability to handler bed rest and down time is limited. And since I'll be the one staying home with him to provide daily care while he's home, I'm looking for insight.

So my questions do not focus on the surgery, but on the limitations imposed during recuperation period. I'm sure everyone's is slightly different, but how long was bed rest? How soon were you walking? How restricted were you regarding bending, sitting, twisting etc? Sean is an active kid, not content to lie about, and being deprived of swimming and basketball and the push and pull of the other boys at school will be difficult. I am concerned that he will be required to do (or not do) things physically (such as limited stretching, or twisting) that he is unable to do well or routinely intellectually, and that I need to discuss alternatives to ensure the physical mending get's the right chance before hand.

While bracing was not appropriate for treatment, is it something I need consider for a short term way of ensuring he doesn't inadvertantly impact the healing by not following instructions? Can he use a regular bed or should we consider renting a hospital type bed to make time spent off his feet more comfortable? Or is sitting up a bad thing?

Sorry to ramble, don't know what I don't know and am trying to figure it out and appreciate any insight.

John McGing

jmcging
3rd November 2008, 06:26 PM
The above is me, I thought I was actually signed in when I posted but apparently wasn't.

John

GloomCookie
3rd November 2008, 06:38 PM
Hi, welcome to SSO :)

I'm in the UK and had surgery for scoliosis rather than kyphosis, but there are other people here who will be able to help you more!

My post op limitations were - no bending, lifting or twisting for three months (I wore a brace during this period so it was quite easy to bend or twist as I physically couldn't!) and if I sat upright in a chair it had to be higher than my knees so my legs weren't at anything over 90 degrees (hope that makes sense...).

It is a very challenging time, the period after surgery, and can be extremely frustrating but the younger someone is the better in terms of faster physical recovery and I was actually surprised at how quickly I was able to do "normal" things again.

Sorry this is all terribly vague, other people will no doubt be able to be a bit more specific and help you further but I just want to give you an idea of the restrictions following spinal surgery.
A brace can certainly be worn post op and as I said helped stop me doing things I shouldn't, although it does depend on the surgeon as to whether you wear one or not (having said that if it helped stop your son damaging himself I'm sure they'd consider him having one even if his surgeon doesn't routinely use them), and I think most people have found their normal beds (if they're high enough, it can't be lower than the knee!) perfectly comfortable. There's much discussion of things like memory foam/Tempur foam mattresses and V pillows/body pillows to make the post op recovery a bit more comfortable if you look around the threads here.

I hope this has a helped a little bit, even if it is a bit rambly! Welcome again :tiphat: I hope we can answer your questions and put your mind at ease.

titch
3rd November 2008, 06:39 PM
I went looking for some information on tetrasomy 18p, as it is not a disorder I have ever heard of, and the first thing I came across was your extremely well written site on it!

Hopefully some of the other parents here will be along soon to give you their perspective on things - obviously, they have faced their own unique challenges which won't map directly onto yours, but some of them are dealing with very young children going through this.

While I can't offer any useful experience of my own, I guess one thing I'd ask is whether he has stopped growing, and if so, whether there is ongoing progression. I think it is harder to say with kyphosis whether it will progress or not, and that overall it is less likely to progress than scoliosis is in most cases. I guess I just wonder whether, given your concerns, if there is not a documented recent progression, it might be worth waiting for the moment and having more xrays done in say 6 months time.

That aside, and assuming that you do progress with surgery, while of course being cautious about bending, lifting and twisting and so forth will aid a good recovery, the rod constructs they use are very strong and stable. One of our members here, Little Ali, is a wheelchair user so simply couldn't avoid a lot of motions that are less than ideal for a recovering fusion, but was assured by her doctor that she wouldn't hurt the fusion or rods and has recovered very well. If he can tolerate a brace (I know that some conditions have sensorial issues that can make it impossible to tolerate something like that), then it is very likely that they will brace him after surgery, which will help reduce his chances of moving in ways he shouldn't. It's possible, while it is rarely done these days after surgery on an adolescent, that they would consider a lightweight cast for a few weeks if asked to, as this would be non-removable which could help.

Do you have any indication from anything in the past, such as injuries, whether Sean is prone to ignoring pain, or maybe has less pain sensation than normal? If he responds pretty normally to pain, I think most of us can assure you that certainly in the early weeks, your body simply tells you how much you can or can't do, and you really just can't fight beyond that because you don't have the energy. The worst in that respect is probably around the 2-3 months mark, when your energy and enthusiasm can outstrip your actual recovery level.

I would expect that - as long as it has a decent mattress and a firm base - his normal bed is fine. It may need raisers, if his legs are particularly long or the bed is particularly low, but I don't think most people need hospital beds (actually, it's one of those things that those of us in the UK tend to find a bit odd as a question, as it's not the sort of option we have across here, as the NHS doesn't loan them out as a rule!). A bath board or bath seat (or shower seat) of some kind is generally a good idea, and a toilet raiser of some sort (ideally with arms to either side, so a frame - these are especially good as most have adjustable height, so you can gradually go down closer to normal toilet height over a few weeks) tends to be necessary. I was about to say that I don't suppose that you'd get him using a grabber, but actually if it's a game perhaps he would? Anyway, a grabber is the only other thing most of us have needed.

I hope that helps a bit, sorry it's such a ramble (just got home from a few days away and am tired out!) Anyway, while I'm sorry for what has brought you here, nevertheless :welcome2:

GillyG
3rd November 2008, 08:49 PM
Hi John, can't really add anything to what's already been said, but just wanted to say welcome :tiphat:

Amazed Jean
4th November 2008, 12:40 AM
Hello John. Welcome to SSO! I'm sorry I have no wisdom for you but I can send my best hopes for you and your son. Sending hugs for you and your son.

jmcging
4th November 2008, 10:30 PM
Thanks all.

Sean's syndrome is rare and has an orthopedic attribute but not necessarily always resulting in kyphosis. So it's congenital but currently considered idiopathic but he's had it since birth and we've watched it get larger each year as he grows. No reason to suppose that it'll not continue to grow as he still should have some growth left in him. (He also has a mild scoliosis, which will be addressed as well.)

I appreciate the input; we are in data gathering mode and will likely have a couple of discussions with his doctor, with his PTs and if we can find parents who have had the surgery and whose kids are like Sean we will speak with them as well.

John

Buffalowilliam
6th November 2008, 11:24 AM
Hi there John, I had kyphosis surgery when I was 25 (about 3 years ago ... in fact its my birthday today! Anyway ....). The day after my surgery I stood up using a walker and had to do so under my own steam. I was then in hospital for about 6 days. Soon as they released me I went into town with my mum, looked around Blockbuster and picked out some movies and video games. After that I was EXHAUSTED and had to go home and lie down. For the next couple of weeks my level of activity was basically - get up, brush teeth, lie down and have a rest, put trousers on, lie down and have a rest, put shirt on, lie down and have a rest, go downstairs, lie on the sofa, go to the kitchen get stuff for breakfast, lie back on the sofa, start cooking breakfast, lie on the sofa, finish cooking breakfast, lie on the sofa etc etc. So I was certainly mobile and able to do things by myself but there was a lot of resting and taking it easy. Any activity above and beyond what I've described and by the end of the day I'd be shattered (eg going round the neighbours, going to the local shop etc).

Bending was hard to do and is still not my favourite activity in the world. Twisting could be better, I can look over my shoulder a bit but I can't twist round comfortably to talk to someone sitting in the back seat of a car.

Braces are uncomfortable and psycholigically difficult to deal with (I had to wear one 23/24 hours day for two years prior to my op) so I definitely wouldn't recommend one unless it was absolutely necessary. Think I had one after my op that was lighter than ones I'd had in the past and was actually quite a relief - took the strain off my spine. That wasn't so bad as I just wore it whenever I wanted.

Sitting, standing, lying were all fine post op. However your son is most comfortable is how best to allow him to be! One thing that was really great for me was my mum bought me a layer of that tempurpaedic space foam stuff to go on my bed so my scar wasn't pressing against mattress springs, but against the nice soft foam. That was fantastic. Although I had to get rid of it when my scar was a bit better as I like a really firm bed.