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Juliar
22nd October 2008, 12:25 PM
I haven't posted on here for about a year. I haven't even lurked. Last year I took my son to Alderhey and saw a specialist there. He was perhaps slightly flippant. Looked at my sons x-rays and said that the kyphosis was within normal range. He took more time measuring the x-rays than he did actually looking at my son. I don't recall him asking my son to bend forward. He did have him lay on his stomach and push up slightly - to see if he could.

Aren't the measurements on the x-rays subjective and only a guide? I mean if it's borderline? shoudl there be equal time studying the child too?

We were told that he has fixed vertabrae. I don't rememeber which vertabrae though....but towards the top of his back.

I came away from that appointment feeling relief but also a bit let down. I knew there was more of a problem but just couldn't be bothered to fight the system as this is not the first health problem my son's had.

Fast forward and my son now has dark purple stretch marks horizontally across his mid to lower back. He has a much more severe curve and has a lump on his left side by the stretch marks. Our GP has referred us back to the original Dr at Alderhey and suggest physio. Does physio help? or is it more for pain management.

The lump is apparently from the curve causing muscle / tissue to be pushed out.

Sorry to ramble, I just don't know if the stretch marks and lump are normal and to be expected. I'm not sure what to expect or demand for my son. What's normal? This is obviously not severe, but can't be within normal range either.

My son just had his 14th birthday and is 5' 10. He grew about 4" in the last 12 months. His back, and the lump are more apparent after P.E or sitting a lot.

Thanks for any input/advice/support.

Julia

Amazed Jean
23rd October 2008, 09:51 PM
Julia, Raise holy hell! Call your GP or anyone else you can and get that son seen by a competent scoliosis surgeon. You aren't going to take no for an answer. You are going to be the only advocate your son has for his health for a while so get tough and get him seen. I don't mean to scare you but I do want you to realize that it sounds like your son's curve is progressing and rapidly. Call the doctor everyday or take your son to an ER and tell them you and son cannot deal with the pain. Just don't let them fob you off for a couple years. Now is the time to act. Good Luck!

GillyG
23rd October 2008, 10:16 PM
I totally agree with Jean, your son definitely needs to be reassessed. The lump is almost certainly caused by the vertebrae rotating as his curve progresses. The fact that the stretch marks are in the same area suggests to me that there has been quite a lot of movement.

Physio can be very helpful for posture pain management but can't actually change the actual structure of the curve, only surgery can do that.

Was the original specialist who saw your son an actual spinal specialist or just a general orthopaedic guy? He needs monitoring by someone who specialises in scoliosis as it's a very complicated condition and a general orthopaedic consultant wouldn't have the necessary experience to deal with him. And don't forget, you are always entitled to ask for a second opinion if you are unhappy - or simply unsure - of what the consultant says.

Good luck, keep fighting, your son needs you!

Juliar
24th October 2008, 10:11 AM
Thanks for the replies. I am feeling a bit better about things after catching up on here and reading peoples posts.

Our GP was referring us back to Alder Hey but after reading posts, I called back yesterday and asked for the referrral to be changed to Hope Hospital. I gave the GP the 3 names that were mentioned on here. Fingers crossed we get an appointment with one of them.

I'd feel so much better seeing a consultant that other people have had good experiences with. We went to the doctor for the first time regarding this about 3 years ago. Like most people's stories we've been fobbed off along the way.

Thanks again for replying - really got me motivated.

Thanks for those of you that posted your photos too - those images are very powerful. My son saw them and said he couldn't believe that other people had 'this' too.....

Juliar
24th October 2008, 10:12 AM
I forgot to say, the only doctors/consultants we've seen so far have just been Orthopaedic specialists. Nothing more. fingers crossed we get an appointment at Hope Hospital.

GillyG
24th October 2008, 04:43 PM
I forgot to say, the only doctors/consultants we've seen so far have just been Orthopaedic specialists. Nothing more. fingers crossed we get an appointment at Hope Hospital.

Well there are two excellent spinal surgeons at Alder Hey that you could get him referred to see, Mr John Dorgan and Mr Colin Bruce. Both deal with scoliosis patients and are very pleasant to talk to - I met them at a SAUK meeting last year which was held at Alder Hey.

The thing I'll never understand is why don't the general orthopaedic guys refer patients on to the more specialised ones? The mind boggles ...

scolioscott
4th November 2008, 10:15 PM
Nag, nag and nag again. Make a complete nuisance of yourself, do whatever you have to. Other people will nag and may get seen before you, so nag - gently but firmly and persistantly.

H :cool:

sins
5th November 2008, 10:24 AM
You've done exactly the right thing.If bracing is an option then you may have a narrow window of opportunity to get this done.
Sins