paediatric orthopedic surgeons

[interstellar]

Right this will be rambling as not feeling coherent but will be very very grateful for any help.Has anyone any reccomendations for a specialist consultant in the london area? My son has Perthes disease and i want him seen by someone with experience.Also , what are my rights on being referred? And finally,has anyone any knowledge of:
Mr John o'hara(national orthopedic hosp birmingham)
Mr Robert Aldwyn Hill - gt ormond st.
Oh and another finally,has anyone ever opted to go private for operaton / treatment?Any rough estimates on price.THANKS very very much,
Interstellar

soree, bumping my own message .

interstellar, I know it is not London area (I also live in London) but there is a marvellous guy in Sunderland called Gavin de Kiewiet who treated my DS2 for talipes.

If you can't find anyone you like in London, you should definitely contact him. In fact, why not just ring him anyway - he's at the Sunderland Royal Hospital - and see if he has any experience of Perthes disease.

He is a lovely lovely man.

This isn't quite what you are asking but Dr Atherton based at Bristol Children's is Mister Ortho here in the south-west. They come from all over to see him.
He does dd's botox and will be doing her aductor cutting and then one day her hip surgery. He's fab.

Thank you so much for replying - need more coffee, what is your daughters condition?

six spot burnet, did you live in the NE or did you travel up for treatment .Also,were you reffered no the nhs or was it private?

Intersteller - I have no experience of Perthes disease but we are very happy with the paediatric orthopaedic consultant we see at King's - and she (pro-actively / voluntarily) arranged for us to see a consultant at GOSH for a second opinion because they tend to work in dialogue to ensure best practice.

I wonder whether you could e mail and ask whether individual consultants have any specialty in Perthes? If you CAT me I can give you our consultant's secretaries e mail?

Waht is making you thnk you might consider private? We have not had any delays or doubs on the NHS as everything has been done very smartly when needed. The surgeon would be the same, anyway! I gather that the wards and conditions for parents at GOSH are very child-friendly and 'conducive' - though i am assured that the children's ward at king's has been re-furbished and improved. I will report back on that after our pre-visit in April!

I think you can be referred to GOSH from anywhere. Could your GP tell you?

interstellar, we travelled up, but we were lucky in that my parents have a house in Yorkshire so we were able to stay there overnight so DS2 didn't have to do both journeys in a single day.

Like Blu, we were seen speedily on the NHS - Mr de Kiewiet doesn't operate a waiting list for children - we just needed a GP referral letter. There was no need to go private.

God, thanks, I'm not really considering private treatment, I am an NHS worker and supporter, just panicking,really.Our wait is becoming ridiculous ,and am concerned that the consultant does not have expertise in this area,all the consultants i can find who do are out of london(hence me thinking we would have to go private).Have to say am not a fan of our local hospital tho it pains me to say it.
Thank you for replying,feeling consumed with something or other_ he is getting worse and they are not being proactive in dealing with this.Can't bear the thougt of him being inpain 24 / 7.It is having bad effect on his mental state too.

Intersteller - this all sounds v distressing for you.

I just did a little googling - and found some of my own posts on various parents websites about referrals to consultants...and reminded myself that it was in fact our GP who first started offering to refer us to GOSH - so there must be a route through GPs.

There is a consultant at birmingham Children's hospital who says he is a specialist in perthes - on his own website - John O'Hara, and it may be worth seeing if anyone through Contact a family has knowledge of specialist treatment

CAF Perthes group

Are you in the London area?

Hi Blu, thanks so much for yr advice, i really appreciate it.we are in london,walthamstow.Cheers for the link ,am just going to have a look now!Thanks again.

all paediatric orthopaedic surgeons will have experience in Perthes disease; it is a relatively common condition.

HOWEVER, as we don't really know the cause of Perthes (other than the fact that there is a temporary interruption to the blood supply to the head of the femur) it is difficult to be categorical about the right treatment. What a surgeon will do depends on various factors; age of the child being the primary one. Another factor is whether there is already a deformity of the femoral head. if there isn't then treatment will be aimed at preventing deformity, though this isn't always possible or necessary. Treatment if offered, can involve surgery or casts on the legs, but there are pros and cons to both. Some surgeons use physio/ hydrotherapy to maintain range of movement.

Whatever is done or not done, the disease can take up to 2 years to heal. The surgeon cannot cure it, but has to wait for the blood supply to re-establish itself.

Have you been in touch with the Perthes Association?

Am putting my update for this thread here to keep it all in one place if that's ok.

He thinks it's probably a soft tissue injury from a snowboarding accident just under 2 months ago where my son fell and hit his head (in a helmet!) and vomited but was diagnosed with bronchitis when we took him to the doctor, no sign of concussion luckily. DS1 had an x-ray which came back inconclusive though - there looks like there might possibly be a subchondral fracture (am quoting that phrase from notes!) and he's supposed to be getting a mri sometime this week. The consultant said he would have expected the Perthes to have progressed further over the past 3 1/2 weeks so thinks it's not a fracture, just one of those things. He sounded much more intelligent telling me all this and it all made sense... I am completely hashing it up, sorry.

Anyway, DS1 needs physio as his muscles are pretty messed up and he has a bad limp. We'll know after the mri if it's Perthes and he'll ring me to discuss further. It sounded like that he'll have surgery if it is as he's 10 years old.

I am very much holding out hope that it is nothing more than a soft tissue injury. On the upside, the consultant is absolutely lovely: Mr Peter Calder at the Portland (winces and hopes that no flaming for hospital occurs) - his NHS surgery is at the Royal National Orthopedic Hospital.

Under pt choice you can be refered anywhere. In London you should look no further than The Royal National Orthopaedic Hospital in Brockley Hill, Stanmore with dedicated paediatric orthopaedic surgeons on the NHS.

Hi, my son is under the Orthopaedic surgeons at Great Ormond Street, he is seen by Mr A Roposch. He has performed a leg-straightening procedure on my son recently, which in our opinion has really helped him, & the docs were very happy with it at his recent check up. Don't know if he deals with Perthes, but worth finding out.

Hth.

We had some problems on Friday because only consultants registered with GOSH can use their state of the art MRI scanner. So my son's consultant couldn't refer him for a scan there. I can see the argument for this, not sure if I agree, but am not posting to complain.

He went to Royal National Orthopedic Hospital, a hospital with which consultant is registered, instead.

It's the kind of stuff I like to know, so that's the reason for the post.

We find out the results early next week. It's good to read success stories too, thanks.

Sorry can't offer any advice on paed consultants in London area as I am from SW. However, comment in favour of NHS treatment. I once tried to claim on private health ins for DS1 and whilst claim was agreed the they told me that by far the best paediatric care was from NHS rather than privately.

val101 - did the straightening involve a fixator frame? My DS is about to start lengthening with a frame.

tsb - glad you got sorted out with RNOH - that was another specialst place we were recommended to seek a second opinion from.

Blu - Val101 is (I think) someone who posts on one of my other boards. I'm not sure she pops in here very often. If so her little boy had a similar procedure to dd - his was a hemi epiphysiodesis. It involves an internal plate I think not an external fixator.

Hi Blu

Yes Saggars is right, (I'm pretty sure I know who she is!!). DS had the Hemi-epiphysiodesis, which was an internal 8-shaped plate which was placed on the outer side of each leg, joining the kneecap with the tibia. There was no fixator frame, they got ds out of bed and walking later that evening (with crutches for balance)& he was allowed home the next day and was able to go back to school within a week. The soreness lasted around 2 weeks then he was fine. He only very occasionally complains about the pain now , rather than several times a day.

Hth

Waves to Val!