View Full Version : desperate please please help
3rd May 2007, 07:18 PM
I'm Tor and am new to this forum. I'll apologise in advance as I don't know very much about spine problems and that this is probably going to turn into a very long post!!!
To cut a long story short I have Cystic Fibrosis (genetic respiratory disease) and have recently been told my condition is now at a stage where I need a double lung transplant.
Since I was 10 onwards i guess I started having problems with my spine, I always appeared hunched and was constantly told to "stand up straight" As the years went on this became harder to do, and I started to notice that my spine always looked hunched. Obviously I have been under hospitals for my breathing my whole life and I mentioned this problem alot to them. They however where never interested and at best gave me exercises to help, at worst ignored the problem. So the years went on and my back became very achy and hurt terribly, in recent years I can no longer lay flat, sitting in hard chairs is very uncomfortable and the apperance of my back is awful.
After moving to an adult hospital I have been given the diagosis of kyphosis but again, they brushed over it and side stepped the issue. For the last 3 years I have desperately been trying to get a referral to a spine specialist to help this problem but despite all their promises the hospital has never reffered me.
Due to the rapid decline in my lung function in recent months I haven't been able to push as hard as I would like to get this spine refferal sorted. I cannot begin to tell you how much stress my back puts me under, I worry constantly about if it will get worse and also that if i get my transplant it will effect the function of my new lungs.
I am 20 on saturday and am desperate to know if someone with more knowledge can tell me, Is there anything that can be done now to improve/ stop my back getting worse? Am I too old for a brace?
With my lung function so poor surgery is not an option.
Please advise me if you can, I feel so worried and alone with this problem.
3rd May 2007, 08:09 PM
Hi Tor, welcome to SSO :welcome2:
I am so sorry to read all this. Whereabouts in the world are you? We will do our best to help you as much as we can. It is, as you already know, vitally important that your spine compromises your lung function as little as possible. Let us know where you live, and we'll do our best to find the very best spinal specialists in your area.
Bracing can help to hold the spine straight, but the usual "corset style" braces can be tight around the ribcage. For kyphosis, a Milwaukee brace is often seen as a better choice - in the old days these had a high metal neck ring, but these days you can get low-profile versions that are a lot more comfortable to wear. Milwaukee braces don't restrict the ribcage. However, bracing is something you would need to discuss with a specialist, as it's impossible for us to say whether or not you would be suitable for one.
There are exercise-based therapies that could possibly help you but again we'd need to know whereabouts you are, so we can find out what's available where you live :-)
Hang in there! We'll do all we can to help support you.
3rd May 2007, 09:10 PM
Thanks so much for your quick reply tonibunny! It is such a relief to be able to talk about this problem with people who understand and can offer support and advise. You have made my day!
I live in Romford Essex so if anyone can advise on specialist centers I'd be really grateful.
Thank you again! Tor xxx :spin:
3rd May 2007, 09:20 PM
Great, it helps that you are in the UK because I'm most familiar with that!
Go to your GP as soon as you can and *insist* on a referral to the Royal National Orthopaedic Hospital in Stanmore in Middlesex. They are one of the very top places in the country for spinal conditions, and you need the best. Lots of our UK members have been there, and I went there myself as a child :-)
If it looks like it will take ages for you to get an appointment there, you might like to consider going private to see one of their specialists. It would cost you about £150 but you'd be able to see them very very quickly and they'd be able to give you advice as to how to proceed at once - and get you onto their NHS list if they think you need to be seen with haste.
It's terrible that you haven't had decent care regarding your kyphosis - maybe they figured you had enough on your plate because of your CF. I know a lot of doctors are still under the impression that spinal deformities only case cosmetic problems though :-(
Good luck!! Please feel free to join in with any conversations on here, or ask anything else that you want to know :D
3rd May 2007, 09:32 PM
You are a complete star!!!! Thank you so so much, I will definately start to get things moving again. I feel so much happier now, I have a starting block to build on now whereas before I was a bit aimless. Hadn't considered private consultation either, will keep you posted on how I get on.
3rd May 2007, 09:34 PM
Great :niceone: SSO's a bit quiet tonight but I'm sure some of the others will be along to say hi too at some point soon :-)
3rd May 2007, 10:06 PM
Hi Tor welcome to SSO
I can only reiterate what toni has said, go to your GP and get a referral to RNOH thats where a number of our members have had surgery for very large kyphotic curves
heres a few links to surgery stories
I like you have had no help from the hospitals but i was being seen in the early 80s when any the dangers of surgery were deemed too great for kyphosis cases. With technological advances though its a lot easier and the results can be astonishingly good
i hope you enjoy the site and find it useful
If you have any questions don't hesitate to ask
3rd May 2007, 11:35 PM
Hi Tor :welcome:
It frustrates and saddens me to read how you have been ignored re your spinal problems. I was also ignored as a teenager but, to be fair, I think treatment for my condition (scoliosis) was a bit hit and miss in those days - I'll very soon be 50 (eeeeek!) - but the surgical advances have come on in leaps and bounds since then and I really don't think it can be excused in your case. Maybe as Toni said, they've been busy concentrating on your CF, but it's not rocket science to predict that kyphosis will probably exacerbate your lung problems at some point - I can't help thinking they are being really short-sighted here, and you're still so young!
Please take Toni's advice about the referral and be prepared to stand up for yourself if your GP seems reluctant. Failing that there's always the private route which will shortcut the system, if anyone deserves to queue jump, it's you.
The links that Mark has given you are truly inspiring stories, don't be too quick to rule out surgery, you never know.....
I wish you all the very best and we are all here to support you, whichever way your journey takes you.
3rd May 2007, 11:51 PM
Welcome to SSO Tor. As well as congenital scoliosis, I was also born with a congenital heart problem (VSD) so I know what its like to have more than one medical issue and have the doctors focus on one primarily. Toni is absolutely right, get an appoinment in RNOH as soon as you can and at least you can have a specialist working with you to measure and monitor the extent of your kyphosis and to look at treatment options.
Good luck with this and I hope that the lung transplant becomes a reality for you soon.
4th May 2007, 12:17 AM
Hello and Welcome to SSO. It's always great to chat with new people and we are always here to help you through.
4th May 2007, 12:43 PM
Hi Tor and welcome, As a carrier of CF myself and having family members dealing with CF in ireland I can only agree with the others, get a referral to RNOH and get a firm diagnosis and assesment of your situation.Continuing curvature will exacerbate chest infections and I think you need to work with your medical team to manage your condition as effectively as possible.
I wonder if your lung function will allow corrective surgery?
Once again welcome and hope you like sso.
4th May 2007, 08:32 PM
I'm really sorry to hear of all of your problems. Just wanted to say :welcome2: I hope we can help you :squeeze:
5th May 2007, 09:00 AM
Welcome to SSo. I'm really sorry to hear of the problems that have brought you here. I'm not far from you (nr Chingford), and my daughter is treated at the RNOH. They have some excellent consultants there and you really need to push to get a referral here asap. We couldn't wait for the initial referral (which was actually to the Royal London, not RNOH) so had a private consult with a Dr Iwegbu at King George's in Ilford. He had done some work at RNOH, so referred us there and we were in and treated within a couple of weeks. I hadn't found this forum at that stage, so didn't know that we could have had a private consult at RNOH.
Anyway, please let us know how you get on. If you haven't already, the RNOH website will have useful numbers for secretaries etc to speak to if you decide to go for the private consultation.
Best of luck
5th May 2007, 01:17 PM
Thanks to everyone who's replied so far for making me feel so welcome!!
You have made me feel so much happier and like I have options now. Cf is my area of expertise but my kyphosis always made me nervous as i know nothing about it.
I am definately not going to let this go, which I've often considered and will keep you informed of my progress.
Just wondered can anyon tell me if there is a consultant i should be refferrd to at Stanmore? Specialising in kyphosis?
Also If you do wear a brace how many hours a day do you wear it for?
Thank you all so much again
Tor xxxxxxx :D
5th May 2007, 02:07 PM
Here's a link to all the consultants and their areas of expertise:
I did a search on the site for kyphosis and didn't come up with anything, so i'm guessing it comes under scoliosis. Unfortunately i don't know much about kyphosis so can't answer your question. Many braces are required to be worn between 21-23 hours a day, but each case varies.
5th May 2007, 04:22 PM
Hi Tor, and welcome!
The others have answered your previous questions so I'll tackle the latest one. With regards bracing, it's used as a (hopefully) preventative measure against surgery in those who are skeletally immature (people who are still growing) but as you're 20, I don't think you fit into that category. Some surgeons brace post operatively, some don't. Before you panic about post-op bracing, it's probably good to get a consultation, see what the surgeon's opinion is and then ask questions relating to their advised treatment plan :)
I'm sorry that your scoliosis was ignored when you were younger, but hopefully you can get something done about it now.
And happy birthday! :D
5th May 2007, 07:22 PM
You should be just fine with any of the consultants at Stanmore who deal with scoliosis as the 2 conditions are treated very similarly in most respects.
I'm sorry for the circumstances that have brought you here, but :welcome2: and :hb:
5th May 2007, 11:56 PM
Hey, Tor, hope you,re having a great birthday!
:hb: :joke: :jump: :cheers: :jump: :joke: :hb:
9th May 2007, 10:40 AM
Just wanted to say Hi and welcome.
10th July 2007, 06:30 PM
Hi can't think how I missed this but Hi! I was born in Romford, and am the proud owner of a tshirtwith Romford by Sea!
And we hope all is progressing well now!
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