PDA

View Full Version : 12 yr old with Kyphosis / scoliosis



Juliar
27th November 2006, 01:15 AM
I have just found out that my son (12) has kyphosis. We are still waiting for the results of x-rays and mri's.

I'm wondering if anyone can advise me on a good Dr / Consultant in or near Cheshire in the U.K ? I would really appreciate it. I don't mind traveling to Manchester or Wythenshawe. We've been living in the U.S until a few years ago and I'm not entirely sure how to navigate the NHS - any ideas when dealing with scoliosis ?

Also, is there a link between sinus problems and scoliosis or kyphosis ? My son has had chronic sinus problems and surgeries. Although I've found nothing on the web.....

Thanks !

Julia

alyssa
27th November 2006, 01:31 AM
I dont really know any surgeons in your part of the the UK check out the sticky topic. I'm so sorry to hear the news and I do wish you all the luck in the world. Send your son all of our regards. Do check back woth the results ok.

Lyssie x

tonibunny
27th November 2006, 02:11 AM
Hi there, welcome to SSO Julia :welcome2:

I don't know of any specialists in Manchester offhand, but I'll find out for you. Another option is that you get your son seen at the Robert Jones & Agnes Hunt Orthopaedic Hospital in Oswestry, just over the border in Shropshire. I attend the Pain Clinic there and they are very good - young people from all over the Midlands and Wales get referred for scoliosis treatment there, although I don't personally know of anyone here who has been.

To get your son seen by a specialist, you need to ask his GP to refer him to be seen. Then your GP will write to the specialist on his behalf, and set up an appointment. Who was it who arranged for the x-rays and MRIs?

I'm afraid that I've not heard of a link between sinus probs and scoliosis - it may just be one of those things, but maybe others here will no better :-)

Anyway, welcome again, and please stick around!

Toni xx

Mandy
27th November 2006, 06:12 AM
I have never heard of a link between sinus problems and scoliosis. I think that they are probably 2 unrelated conditions and while he has had the sinus condition for a long time, the scoliosis is not linked to it. Many cases of scoliosis have no known cause or are termed "idiopathic".
Good luck finding a specialist for your son.
Mandy

titch
27th November 2006, 01:09 PM
Probably the easiest places to reach for you are the hospital in Oswestry noted by tonibunny, and either the Woodlands (I think?) in Birmingham or Queens Medical Centre in Nottingham. As mentioned, you will need to get a referral from a GP, even to have a private appointment.

I haven't heard of a link between sinus problems and scoliosis either, but I'll keep my eyes open for any information and link it here if I do ever see anything.

Meanwhile, it's good news that your son has had an MRI as well as xrays, it means that when he does see a specialist they'll have a lot of information available to them already, which s always a good thing.

:welcome2: and I hope we can help and support you and your son through your journey with this.

Juliar
27th November 2006, 05:31 PM
Thanks for the replies. To clarify.....18 months ago my son had an MRI paid for privately because he had a lump at the top of his spine. We were old scoliosis was ruled out due to the MRI results. Anyway, after 7 broken bones in his life my parents urged me to take him for a check up and possibly get bone density tests done. The Gp at first seemed to think I was just an overprotected mother. Then he looked at my sons posture and to cut a long story short, we've been referred to Alderhey in Liverpool and also for physio.

My concern was that I don't want to see a consultant once and then be forced to see a different resident each time which happened when we were going to he hospital with the sinus problems - very frustraing. Plus I dont know which hospitals might specialise in Orthopedics. Now I have some hospital names I'm hoping that will help when we actually mee with the GP again.

Again thanks - fantastic forum !

Julia

ScoliJess
27th November 2006, 10:03 PM
Hi, and welcome!

:welcome2:

I can only echo whats already been said I think! QMC in Nottingham is spoken of very highly around here although I didn't have surgery there myself.

The hospital in Oswestry as mentioned by Toni is also apparently very good, my ex-housemates sister was treated there and had a very good experience. They lived in Ross on Wye and travelled there because it was highly recommended.

I was treated at Royal Orthopaedic Hospital the Woodlands in Birmingham, they did a fantastic good of treating my scoliosis, but I have since had problems trying to get my other problems sorted!!

From experience here I think most people have seen the same consultant each time and so have had a fair degree of consistecy, though I may be corrected by future posts! At Woodlands Mr Marks and Mr Thompson however do kinda share patients so you may see one of them one time and another the next. I didn't find this too bad though as I mainly saw Mr Thompson.

mark
27th November 2006, 10:53 PM
Hi Julia

once again welcome to SSO

As has already been said Queens Medical Centre in Nottingham is highly regarded and has been the hospital where some our members have had successful surgeries including some very complicated kyphosis procedures.

I hope you manage to find somewhere close that you are comfortable with. We have a built up a great support network on this site so if you have any questions don't hesitate to ask.

Take care and i hope you get the best possible treatment for your son

mark

Emma
5th December 2006, 01:46 PM
Hi Julia,

Just a note to say that I also had Scoliosis Kyphosis and have a number of sugeries. My first 2 surgeries took place at 'The Royal National Orthapedic Hospital' in Stanmore, Middlesex. They had a fantastic team and I am aware that patients travel from far and wide to be treated there. The contact number for the main hosptital is 020 8954 2300. It is an NHS hospital.

Good luck!

Best wishes
Emma

alyssa
5th December 2006, 01:52 PM
Guy's hospital in London is brill!

Juliar
19th December 2006, 01:18 PM
O.k, so I'm completely confused - we went to the hospital today, supposedly to have a 'review' and decide what to do next. The consultant last time told me that todays visit would be to decide which x-rays etc to order. Today we saw a registrar again (sigh) and were told that Liam has 'stiff' or 'fixed' kyphosis on no.8.....

The consultant has cancelled all further referrals and we are no longer going to be going to Alderhey or getting physio. He said that Liam's kyphosis could get worse but it's one of those things - who knows !! He said a brace is poitless - a 12 yr old wouldn't wear it and that surgery is too dangerous because the problem isn't bad enough at this point - I have to agree.

My question I guess is, is this the right approach ? Nag a kid to sit and stand straight when clearly he can't. Just wait and see. The registrar also said we shouldn't go in for any anual reviews. Just carry on life as normal and just think as Liam as different - none of us are perfect ! Even carry on playing rugby and getting in the scrums.

Would you trust this advice ? Or go back to your GP ???

we've gone from the Dr's seeming to be treating this as urgent to it's like a common cold !

Thanks for letting me vent !!

sins
19th December 2006, 01:50 PM
I suggest you go back to your Gp and ask for a referral to a hospital where they have experience of dealing with Kyphosis.All too often we have heard your story, where a doctor makes a unilateral decision to withhold treatment without even ordering x rays or relevant rests.
If you answer yes to any of tho following questions I recommend getting an alternative referral.
Is your son in pain?
Is the kyphosis noticable?
Does his cosmetic appearance bother him?
Do you have a measurement of the degree of curvature?
Any significant curvature should be measured by x ray to have a baseline measurement for future reference and then monitored over months/years to assess the progression if any should occur.
Surgery for kyphosis is a major undertaking with significant risks, however most surgeries are successfully done with very satisfactory results.
How can that doctor predict whether or not your son will wear a brace???Does he have a crystal ball or is he telepathic???

Definitley if you son has any pain or noticable deformity, he should be under the care of a specialist surgeon dealing with Kyphosis.Hopefully he may never need surgery, but you should have an expert eye kept on the situation.
There are some good hospitals mentioned above, even a private appointment with some of the QMC or stanmore consultants might be worthwhile if your Gp doesn't help.
Sins

Juliar
19th December 2006, 02:09 PM
If you answer yes to any of tho following questions I recommend getting an alternative referral.
Is your son in pain? Not unless you "tap" the area
Is the kyphosis noticable? Very much so, clothed - bad posture. Without a top on he looks like he has awful posture with a 'hump' at the top of his spine.
Does his cosmetic appearance bother him? No, he wants to be left alone - the rest of us notice us - even casual friends.
Do you have a measurement of the degree of curvature? NO

Any significant curvature should be measured by x ray to have a baseline measurement for future reference and then monitored over months/years to assess the progression if any should occur.


MRI was done 18 months ago and because of that the consultant is sticking to the initial diagnosis - not much wrong ! Even though now he admits that there is Kyposis....

Thanks for the input. I will start looking into private Dr's. Thanks.

gerbo
19th December 2006, 06:45 PM
julia; slightly confused, do you have recent x rays as suggested in your first post, or is the only thing you've got an 18 months old mri?

others; out of interest, does a pure kyphosis respond to bracing?

gerbo

Juliar
19th December 2006, 10:44 PM
Sorry - that was kind of confusing. The MRI was done 18 months ago. The Dr that ordered it forwarded the results to an Orthopedic dept in our local hospital for review a few weeks ago. 18 months ago was when we first noticed a slight lump at the top of Liam's back. So, now things are worse I'm sure an updated MRI would be the way to go really. Apparently the original MRI showed no kyphosis and only soft 'muscley type tissue' had grown.

The local hospital just ordered an x-ray which did show the kyphosis but I wasn't told a percentage or degree of curve - I asked but was told it didn't mean a whole lot and I shouldn't focus on that! This was just a standard chest x-ray.

titch
20th December 2006, 02:30 PM
My *guess* would be that by saying he has stiff or fixed kyphosis at no.8 what they mean is that he has Scheuermann's kyphosis centred at T8 - specifically, Scheuermann's kyphosis occurs because 3 adjacent vertebrae become wedged by 5 or more each - there's a sort of collapse at the front of the vertebrae. It sounds to me like this is what they mean, although it could of course be only one vertebra which is involved.

It's true that many cases of kyphosis are stable and do not worsen over time, but without knowing the degree of the curvature or whether your son is close to stopping growing (which is unlikely as I think the median age for boys to stop growing is about 17), I think you're right to be concerned.

It's certainly true that if it is rigid, due to an actual bony change, the kyphosis will not be reduced by physiotherapy, but physio would certainly be more use to him than continually getting a flea in the ear from people telling him to sit up straight and stand up straight when clearly he can't. I do also agree that if the doc's reasoning against a brace is purely that he reckons your son wouldn't wear it, that's a pretty poor reason as that will never be known without trying - heck, if he can be braced nice and upright, he may be very happy to wear it because it could make life easier in terms of people not having a go at his posture.

He definitely needs to have check ups at any rate, no matter what else is done. It may indeed be stable now and remain so, but if it's gone from slight to far more noticeable since the original MRI, then it stands to reason that it *may* progress further and so does need monitoring. Also, if it was a short xray (you said chest xray, so I'm assuming it was fairly short) that's not ideal either - when assessing a curvature in the initial stages, generally 2 xrays should be done - both should be full length standing xrays, one a side view and the other a front to back view.

As you did not see the consultant at all, I'd perhaps suggest trying to arrange another appointment at a clinic where he is guaranteed to be in, and on the day you usually then check at reception that the notes are marked for you to see the consultant and push like mad if needed to make sure that they do their best to fit you in. I made a fuss last time I had a check up to see my surgeon, and they said that generally they try to ensure that you see your own consultant a minimum of 1 in 3 appointments - and certainly there they always try to ensure you are seen by your own consultant on your first appointment. It's perhaps worth ringing the clinic and seeing if you can get back in, but be prepared to be refused because it may now be on your notes that you're not written up for any follow up, so they may be unable to help you - in which case you'll need to go back to your GP either for a re-referral to the same clinic, or for referral to another clinic if you think you'd rather just try somewhere else.

Hope that helps a little.