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scoliboymom
03-25-2009, 09:55 AM
I have never seen this topic addressed here so am wondering how common it is.
Patrick just had his "2 year" post op visit (officially he's not 2 years until mid May). I have noticed that his ribhump seems to be looking big. But if you see him almost everyday it's not like you suddenly see a change. Well the doctor pointed out that he has now a significant ribhump. I asked if that means his spine is crankshafting and he said yes it is a form of crankshafting where I am guessing the stresses of his adolescent growth is causing his chest to distort. He said his fusion is strong and his spine has not changed so it is stable and not crankshafting but the ribs/ribcage are. I am kind of stunned by this and can't wrap my thoughts around what is happening inside him. Couldn't really think of any other questions regarding this at the time.
I looked at photos of him I took before and just after surgery and I am stunned. His ribhump seems even bigger then before surgery. Patrick does not seem concerned about any of this and I am keeping it to myself.

Now in hind sight I am worrying, more because I believe Patrick has a lot of growing to do still. He has grown 1 1/2 inches over the last 2years. He is 17 years old. His brother (21) is 5-6 inches taller then him. So aside from some expected loss in height I fully think Patrick will grow at lest another few inches. His brother grew until almost 19 and Patrick has been slower then him in everything, beginning of puberty, adult teeth coming in etc.
I realize there is absolutely nothing I can do about this but I am still worried.
Have others experienced an increase in ribhump after surgery? I understand the princilpe of crankshafting but don't understand why the ribcage is still in motion when the spine is solidly stabilized.

Ramona

Carmell
03-25-2009, 11:16 AM
Ramona,

I'm very sorry this is stressing you so badly. I wish I had good answers to give you some peace of mind. I also think it is odd that the chest is crankshafting while the spine is solidly in place. I can't help but think that the parts of the spine above and below the fused area are what's contributing (maybe not causing) the chest to rotate. Is this another argument for waiting to have fusion surgery until you KNOW the child is skeletally mature? I wonder about that.

I also wonder if once Patrick is fully grown (into his 20s) if there will be something they can do to cosmetically make it look better. Some type of thoracoplasty? Very invasive and recovery is painful, but maybe there are options once he's fully grown? I would hope. Especially if the rotation/rib hump were to interfere with his lung function.

Best wishes to you. Hopefully you can wrap your head around these facts and somehow find peace knowing he's fine, just cosmetically different. My best to you...

Aussiemum
04-01-2009, 01:50 AM
Hey Ramona!!!

OMG!!! Read my post in this section regarding Crankshafting after surgery!

What you described with Patrick is EXACTLY what Elysia has going on!! Plus a little more in that she has developed a "phenomenom" (doctors words) of a tilt at her L1 Vertebrae and sending her lumbar into a curve.

But..... we were told that she too has a "type" of crankshafting! Not the full blown type that when I first had this mentioned to us sent my head into a full spin - but where her fusion whilst is holding - has "sprung" back from 10 degrees post surgery to 26 degrees! She too has developed her rib hump back again as her Thoracic crankshafts!

But.... once again - what I was told by a 2nd opinion surgeon is that there is crankshafting which affects much younger children ie under 10 - and then there is crankshafting - to a minor effect - in the older children. WTF?? We can say. These bloody surgeons make a hobby out of trying to scare the beejeeva's out of us with their words.

We were told by our 2nd opinion surgeon last month that Elysia will need further surgery to extend her fusion into her lumbar area - probably just from L1 - L2 - as for her deformity now developing in her chest area and rib hump - I think she's going to have to live with that - so long as it settles and doesn't do any more "springing back".

I'll keep in touch and fill you in on what our surgeon tells us when we go for our June appointment with our surgeon who performed her 1st surgery.

Don't go on another cleaning spree again.... LOL - from stress - I remember you doing that just before Patricks surgery last time!! I know it's disappointing to get told this by surgeons - you think you've made all the tough decisions for your child and then they spring something else on you!!!

Big hugs - will watch out for your posts to see how Patricks doing and what the outcome of all of this is!!!

Hugs
Del

laurieg6
04-02-2009, 12:57 AM
Hi Ramona,

I just wanted to say that I don't understand what's happened to Patrick's back either and I'm sorry that it's happened. But maybe, at age 17, he's mostly done growing so nothing will get worse. How tall is he now?

It sounds like he's sort of oblivious to himself - in a lot of ways so is Alexander - so I do understand that in a kid. Alexander still has very imperfect posture and is only beginning to sometimes think about it.

Anyway, I really wish you all the best and I hope he won't need any more surgeries.

Hi Del,

I'm very sorry that Elysia needs another surgery. I hope you can put it off for as long as possible so she can deal with it but also be able to soon move on and away from talk of surgery. Is she aware of the rib hump issue?

Hang in there, both of you,

scoliboymom
04-03-2009, 11:59 AM
Carmel -thanks for your kind thoughts. Cosmetically I think it doesn't bother Patrick but I do worry about increased growth of the ribhump if it could have a bearing on lung capacity. He gets very impatient with me if I try to study his rotation. Think he rightously so just wants to get on with his life, good attitude.

Del - So tell me if I have got this right, Her thoracic curve is growing after surgery or has it stabilized. And because of the crankshafting her lumber curve is increasing? Patricks unfused lumber increased, I think, about 10 degrees between six month and one year checkups. But his surgeon says there has been no further change. (I never saw the x-ray but think I will get a copy and check this out myself next time I go to Toronto-I know the doc has been wrong before in measuring). He also said if he had fused him all the way down to begin it would not have stopped this from happening. Also he didn't seem too concerned and didn't see there to be a need for further surgery because of this. So we have been told to come back in a year. After that he will get transfered to the adult surgeon. If another surgey is in the cards for Elysia I am glad you have gone for a second opinion, any chance of getting even a third? For sure we will keep tabs on each others future. By the way has Elysia finished growing?

Laurie- Patrick is 17 ane 5'9" not a bad height to be but his brother is 6'3" so I do suspect that he isn't finished growing. And yes sometimes it's a good thing to be "oblivious to oneself" and not sweat the small stuff. Like when he dresses he just picks whatever is on the top of the pile, lol. Not sure that will
change now anymore. I know you have had concerns with Alexanders posture from the beginning. Has there been any improvement, and is it from lack of trying on his part or a physical inability?

laurieg6
04-04-2009, 01:50 PM
Hi Ramona,
I think because Alexander was fused with curves still in the 20-30 degree range because of the hemivertebra, he still tends to lean and to bend one knee. At least that's what the physical therapist seems to think. The surgeon seems to think that Alexander needs to train himself to stand up straight all the time. When he does think about it, his posture is beautiful. But that's not often enough to be a real habit. So I'm not really sure of the answer to your question.

Thanks for asking though. I'm glad Patrick doesn't need more surgery. That's my biggest fear because of the posture issue but our surgeon always denies that it's even a possibility. I guess I was just expecting the "perfect" posture that so many people on this forum seem to achieve after their surgeries.

Take care,