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-   -   New to forum (http://www.scoliosis-support.org/showthread.php?t=17996)

dandung86 19th June 2014 12:21 PM

New to forum
 
Hi all, I have put off writing a post for some time. I now feel is the time to with with my experience of living with Kyphosis/ Scheuermann's disease.

I have graduated from University (lived the whole student life to the full), bought a house, got engaged, got a good job and best of all have a lovely baby daughter. From the outside I have the perfect life. It is inside that I am a different person. Psychologically I feel a bit of a mess, every part of my everyday life is controlled by my back and body. I am very self conscious, making sure I go places where I don't have to show my back off for too long. It is a constant daily battle that I don't think any others around me understand. I am in near constant pain with the disease but it has been that long living with it now I have got used to it. I have adapted my life to living with it, standing up straight as much as possible. So far I have 'winged it' as such.

I visited my local GP a couple of months ago who referred me for physio, I attended 1 session after an x-ray which confirmed my spine had fused. As such I was told they did not want to touch my back as anything physical may damage it.

So here we are to today, I have a physio follow up appointment with my GP next week. I had a call off him on Tuesday where he basically said don't get my hopes up, there is not much the hospital will be able to do, do I want a big scar from surgery, the NHS has had budget cuts, etc..I was n total shock!

I have attached pictures, all help or advice would be greatly appreciated. Thanks!


http://s29.postimg.org/m4dw7ho8n/image.jpg

http://s29.postimg.org/azoxm7qif/image.jpg

http://s29.postimg.org/tvum61sdz/image.jpg

http://s29.postimg.org/k8r3wbzef/image.jpg

http://http://s29.postimg.org/jhtbtfqpj/image.jpg

kezpet 22nd June 2014 07:48 PM

Re: New to forum
 
Hi
Welcome to this amazing forum, there's a wealth of knowledge & support here.
Just wanted to say Hi and I totally understand where your coming from, your description of how your life is sounds just like how I was, I lived my life how I wanted & the pain became kind of normal?! I covered my curves up for 17 years after all that time id found ways of concealing/hiding my hump!!
Really hope your GP/Hospital do their best by you, don't take any fobbing off you deserve the best treatment available!! :-) where abouts are you?
Kerry x

KMaxwell 30th June 2014 09:55 PM

Re: New to forum
 
Welcome to the forum :wave:

I, too, have lived with Scheuermann’s kyphosis for a long while. In my teens I was braced and in my 20s turned down for surgery. I tried massage therapy, physio, chiro, acupressure, soft posture braces, etc. Some helped temporarily, though nothing helped the psychological impact. I basically just had to live with it until last year when I went back to see if there were any other options for me (since my pain was increasing).

My GP seemed oblivious to my spine disorder (and she has scoliosis!) but referred me for x-rays for ‘neck pain’. The radiologist mis-diagnosed me as well with postural kyphosis. It took me going back to him, insisting he look into Scheuermanns then re-read my x-ray, searching for scoliosis surgeons in my area and campaigning my GP for a referral that I finally got somewhere. For me, the best option turned out to be surgery – I’m now 10 weeks post-op and doing well (other than some minor setbacks).

Long story short – I recommend doing all the research you can then push for the answers you want. I’ve read about other folks on the forum who’ve had to do the same. Though not many here on the forum have Scheuermanns (scoliosis seems to be much more common), everyone here can understand the pain you’re going through (physical and psychological) and be a good source of support.


Wishing you the best of luck!

dandung86 21st August 2014 10:54 PM

Re: New to forum
 
Hi, thanks for your replies! Just a quick update for you all. It was my daughters birthday last week, the day before it I pulled the bottom of my back (talk about timing), the pain was intense. I could not move at all and it spread across my legs and all over my back. A trip to the walk in showed I have swelling in the tendons. I am feeling a bit better this week, the timing could not have been worse! I have got on with it and fought through the pain.
On a positive note I recieved a call from my doctor last Friday saying he is referring me to a specialist hospital in Oswestry. Has anyone else had experiences with here? It was such a relief to finally feel like I am getting somewhere, ironically it came at this time of extreme daily pain. I will keep you updated on what happens. I am a bit nervous for what they will say but at the same time I am a little excited that they have finally referred me.
My doctor said I may have ankylosing spondylitis, has anyone got any experience of this? I hope it does not affect any outcomes from my hospital referral. Thanks for reading, Dan.

daniel7 26th August 2014 06:24 PM

Re: New to forum
 
good to see that they are moving forward

dandung86 27th August 2014 12:59 PM

Re: New to forum
 
Yes good news. I ha a call today from the hospital requesting copies of my xrays. Small steps but all good so far!

KMaxwell 2nd September 2014 06:52 PM

Re: New to forum
 
Quote:

Originally Posted by dandung86 (Post 272573)
Yes good news. I ha a call today from the hospital requesting copies of my xrays. Small steps but all good so far!

Great news! Sounds like they are moving forward with your case. I hope it all works out. :)

Rod Stewart 3rd September 2014 03:04 AM

Re: New to forum
 
Dan, here is an article about Mick Mars. He has AS.
http://love-it-loud.com/retrospectiv...g-spondylitis/

I also worked with someone that had AS. He was in pain all the time, and so was I. It was a mutual sort of thing.....

Be sure to let us know what happens....

Ed

dandung86 8th October 2014 11:12 PM

Re: New to forum
 
Hi all, I had my first appointment at the Robert Jones and Agnes hospital in Oswestry last week. I had a couple of xrays, blood tests and then got to speak to Mr Davidson the consulstant spinal surgeon. I was pleased I finally got to speak to him. It was the first time I had seen my spine on an xray, scary! I measured at 85 degrees with scoliosis thrown in there also.
What was found was my vertebrae have fused in quite a few places, I have always wondered why I have never been able to lie flat, this helps explain it. We had a good talk and looked at the xrays which helped me. I was told the risks of surgery and it got me thinking a lot.
Is it selfish if I have it and something happens? I want to have it for myself but also so I can do things with my family. There is so much to think about.
I have been booked n for a CT scan and MRI on 11th November at the same hospital. I will keep you updated how these go. Thanks for reading and replying, Dan

GillyG 10th October 2014 10:24 AM

Re: New to forum
 
All surgeons have to inform their patients of every possible risk in having surgery but in reality, these risks are very tiny, especially the more serious ones, since they use spinal cord monitoring to detect any drop in signal along the spinal cord whilst operating which then allows them to make adjustments to avoid paralysis or other serious damage.

mark 10th October 2014 01:18 PM

Re: New to forum
 
As Gilly says they have to cover all the bases and let you know the risks

Unfortunately surgery for kyphosis is a little riskier and a bit more brutal than scoliosis surgery

You are right to give it a lot of thought

On the plus side you will have a lovely straight back and hopefully reduced pain following your recovery

I don't regret choosing the surgery option but it was brutal, it did hurt for a long time, I need revision surgery but the confidence it gave me to cope with life out weighed the negatives

I don't hide as much I used to, I am more confident in company who do not know me and I know wear just t shirts and not big baggy jumpers which I did to hide my back prior to surgery

Take care dude

Mark


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