Any 18+ Scoliosis Patients from London UK

[missk9]

I had my operation when I was 13 in 1992, I had a major curve in my whole spine although the Rod was only attached from the top to my waist and although a curve at the bottom they left this...

Happily getting on in life at now 27 and two kids later I have gotten increasingly worried that 'something' is going on in there. I get breathing problems commonly, like if i breath in too much or breath out too much i will get what feels like either a sharp pain or a deep pain in any number of places around my back or shoulders or ribs!
Sounds messy I know...

I am planning to go to the doctors however my local GP is CRAP and talk a lot of rubbish.. I would like to go there and tell them exactly what I am after but I have no clue.. the man who did my op was Surgeon Dr Edgar, well known in uk for this op, in fact I was the ginea pig that they first tried the rib romoval and fusion all in one surgery on! Anyways I know that Dr Edgar is retired now and the whole hospital I was at has closed... so I have no idea where to look now...

I get scared cause I try and feel my spine and I cant find it... I get paranoid its moved right back out again but I dunno til I can get referred properly...

Anyone from the UK that can perhaps give me some advice on who to see or perhaps just there experiences?

Many Thanks
Kate

[SaraUK]

Did you find a Specialist?

Hi Kate,
Sorry it's taken 5 months for you to get a reply to your post, but I have only just discovered this forum myself! I live in West Wales (not quite London, but at least a bit closer than USA!).
Hopefully by now you will have found a specialist and have been seen under the NHS (we live in hope!). If not, I am sure that Scoliosis Association UK would be able to provide you with details of Scoliosis Surgeons/Specialists in your locality. Alternatively, the British Scoliosis Society may be able to point you in the right direction. It's probably a good idea to go to your GP armed with the information, as I think there is a general lack of awareness of scoliosis and scoliosis surgery in Primary care.
Anyhow, I hope it all turns out ok for you.
Kind regards,
Sara
p.s. scroll down if you want to read about my scoliosis history!!!
I was diagnosed with Scoliosis (Double Major) 19 years ago, at the age of 9 - and referred to an orthopaedic consultant (I think his name was Anthony Jones) at Morriston Hospital, Swansea. I wore a Boston Brace until I was 12. Unfortunately, the curves continued to worsen despite the brace, so I was referred to Prof. R Dickson at St James' Leeds, where I had an Anterior Fusion of the Lumbar curve using Zielke procedure. I think the idea was that the Thoracic curve would eventually reduce, but I had a particularly rapid growth spurt following the initial surgery and the opposite happened, so at age 14 I had a Harrington rod inserted and a thoracoplasty at the same time.

I am now 28, and although have experienced regular muscular pain in my lower back, I have learnt to adapt and manage it - I found remedial massage therapy and Pilates particularly helpful, and continued to lead a normal (whatever that is?!) and active life!

[miranda_m]

Hi Kate,
I haven't been on this site for a few months, which I have really missed. My operation was 5 months ago at the Royal National Orthopedic Hospital in Stanmore.
Your post makes me concerned. Basically you need to be pushy with the old NHS. I had loads of issues organising my op and persistence is key.
Just simply tell your GP you want to be referred to a speacialist and don't walk away without one. Seriously, a GP won't understand. You know your body better than anyone else.
The hospital you had your original surgery should have looked after you, even though it closed.
Let us know how you got or get on.
Miranda

[alyssa.star]

I had my surgery when I was 17, almost 2 years ago now and my Surgeon was Mr Khai Lam in Guy's Hospital, but I see him privately at London Bridge Hospital. He's an exellent surgeon and a wonderful guy.
Hope this helps, xx

[tonibunny]

Hi there! Mr Edgar treated me throughout my life, from when I was a baby until he retired when I was 25. I'm 32 now. I had infantile idiopathic scoliosis, hence having him treat me for so long.

I had my first surgery (thoracic fusion) done by Mr Edgar in 1986 at the Royal National Orthopaedic Hospital in Stanmore, where he was based for years. Then, I also had surgery done by him in 1994 at the Middlesex Hospital, to extend the fusion to include my lumbar curve, when I was 18. I also had a costoplasty done at this time, so thanks for being the guinea pig hey

What I'd recommend you do now is insist that your GP to refer you to a specialist at the RNOH, because they're the best place in the south of England for spinal problems, and one of the best in the country for scoliosis - the surgeons there are all excellent. I am currently being treated there by Mr Tucker because I have also developed pain problems over the past few years.

It's pretty common to leave one half of a double curve unfused - this is because sometimes one of the curves is just "compensatory" to the main, structural curve and it may well resolve and straighten by itself. However, quite often it turns out that the remaining curve is structural itself and will continue to progress, so you really do need to be assessed properly to check out what's going on with your spine.

If you would like to talk to more people from the UK, there are more of us over at www.scoliosis-support.org - lots of us are members of this forum as well as that one

Toni xx

[Qikdraw]

Just curious.. Did your ribs grow back? Mine did! They removed 8 of my ribs and used those to help fuse my spine. But they did grow back. Probably because I was so young (12) I don't think it would work on me now. (37)

Brad

[tonibunny]

Ribs will always grow back and the ends will eventually rejoin if the "sleeve" of muscle (the intercostal muscle) that surrounds them are left intact. Usually just sections of the ribs are removed for the thorocoplasty surgery they remove the apex of the rib hump and allow the cut ends to grow back together again flatter - though occasionally a whole rib will be removed permanently if it's still likely to cause problems such as catching on the hipbones following fusion surgery.

Basically though, when people say they've "had six ribs removed", they're not going to be missing six whole ribs for the rest of their life Younger people do tend to heal faster than adults, but I know of plenty of people who have had thorocoplasty surgery in their 30s, 40s and older and have healed up just fine. Once healed, the rib bone is as strong as it ever was.

Hope that helps

[alyssa.star]

I had only 1 rib removed for the bone graft and no mine hasn't grown back, I can still feel the stump of where the end is, lol, it's quite cool xx