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View Full Version : I need advice on my kyphosis


Dan
22nd November 2008, 09:44 AM
Hey everyone- for those that don't like long posts, i apologise in advance! please bare with me :)

I am student currently on my gap year. I worked for 6 months after finishing school and have saved the money to travel the world! People started noticing a curve in my back since about the age of 15, but after seeing a few doctors, I was told that not much could be done and it wasn't serious enough for bracing because I wasn't getting much pain.

I have always been very active and played lots of sport, and I used to get lower back pain regularly before I left to go travelling. Gradually over the last few months while travelling, the pain has got worse and worse and I've had problems throughout my entire back, particularly in the thoracic region where my curve is. I have also experienced pain in my chest, because my ribs are inflammed, and I have a constant pins and needles sensation in my back and sometimes in other parts of my body. I flew to australia early to see a sports therapist who took x rays and diagonosed me with Scheuremann's kyphosis. It was a horrible feeling when he told me I'd have to stop doing alot of the things I loved doing, and it's going to affect my travelling.
I've been doing regular stretches and lots of swimming to help relieve the pain, and I'm also on strong medication. All this seems to be helping but I still get incredibly sharp pains in the morning through my spine, particularly the lower region, and my upper spine gets stiff towards the end of each day. I've been for a bone scan which has come back fairly positive in the sense that there's no major problems with my bones or blood.

The hardest part of all of this is that I'm alone on the other side of the world and I'm becoming very upset. I hate the way my back looks and i hate the pain that comes with it. I know my curve could be much worse and I should count myself lucky that it isn't severe, but it's difficult to think positively in a situation like this. Particularly with a disorder that will effect me for the rest of my life. The doctors I have seen have told me there aren't many options for people like me, and have kind of just said 'deal with it'. Although from reading other people's posts, I noticed I'm not the only person on this site that's been told this.

Is there anyone reading this that can offer me some advice, or may have been in the same situation? I'm travelling with my girlfriend now but it's hard to explain how I'm feeling to her. I don't want to leave to go home, but it seems like it may be the only option. I need to see a specialist about this and get further support.
I know surgery is very complex and dangerous, but would it ever be an option?

Thanks for reading

Simon
22nd November 2008, 02:15 PM
Hey dan my names simon and like a few members on here we have had or have got kyphosis .
First off do you know what degree your curve is? And if not you need to get it measured as without knowing that we wont know what to suggested , I Also think you need to be refereed to a proper orthopedic doctor who specializes in scoliosis / kyphosis as you have been to see a sports therapist i dont know how qualified they are to diagnosis yourself .

I also think that you can do everything that feels comfortable for you ie sports climbing anything really as long as you feel comfortable doing it so i think he was wrong to tell you that . i had a 96 degree curve and i done everythink i could that felt comfortable with me and i know that mark has not has his operation yet but does a lot of walking and rock climbing once he sees your post he will respond to you .
The feeling you have is normal when you get told that sort of information but try to stay strong take some painkillers if you can do some swimming go to the sauna and try if you can to sit your girlfriend down and discuss it with her she prob knows that your going though this but probally doesn't want to bring it up in case you get upset but please try to talk to her once thats out in the open am sure you will feel a lot better within yourself .

Make sure you get a proper diagnosis and let us know how you get on wishing you luck mate and welcome to sso stay around and read some of the other posts in this forum

Take care
Simon

Dan
23rd November 2008, 02:09 AM
Hi Simon,

Thanks for the reply I really appreciate it. I asked the sports therapist for a measurement of my curve but he told me he didn't have the skills to do it! I have seen 2 doctors now and asked to be referred to a specialist, although because I'm an outpatient abroad, most doctors are reluctant to do so. Also being an outpatient means seeing a specialist over here in oz can take a long time- up to 4 months!
I have thought about going back to england to get this looked at properly. It would mean giving up my travels for a while but i feel its incredibly important to see someone who deals specifically with my condition.
Thanks for your advice on the sports as well, thats really good to know.
I'll keep staying positive and I'm sure in time things will get better over time. Do you think going back to england would be a sensible plan or should i try and stick it out here in oz? I think a major problem at the moment other than the pain is the fact that it's constantly on my mind, and I don't really know what's happening to my body and what my options are.

thanks again for your post :)

Simon
24th November 2008, 01:30 PM
Hi dan

Sorry for the late reply

As for you coming back to england I carnt make that decision I think what you could try is either you contact your gp by phone and discuss it with him and see if he will refer you to a specialist as if you come back from traveling you will have to wait at least 6 weeks for a appointment .
Or you can ask your gp for a referral letter to see a specialist privately and if he says yes you can always phone and make a appointment at your own convenience. Also can you not see a specialist out there privately but then thats a cost to yourself

Also is there any places you can go for relaxing techniques like yoga or palates or maybe someone you can see to take your mind of your spine as by the sounds of it your really worrying about what to do .

Try to relax and try to do stuff to take your mind of it if you can sorry not sure if this is good advice or not
Wishing you the best of luck

Simon

Darl
25th November 2008, 12:48 PM
I could not compare my situation with yours, but one thing we may share in common is the weight to decide now for a surgery or, the other.

And so to set aside my feelings of gloom, I instead congratulate my body for having sustained a rough motorcyle ride to the mountains, or my polio leg for managing so smartly whenever I wear heels, my rough breathing for reminding me to exercise regularly, my hunch for having landed on me than if it could have had to any one of my dear sisters, etc. I give in to self-pity many times, moreso because lovelife makes me, but I always revive time and again.

Everything will push me to sadness if I dwell on why I have no left kidney and left ovary. One thing we simply cannot change, it is still the kind of attitude one keeps that will dictate the kind of strength one may have.

I hope you get yourself into the needed surgery, technology and human support abounds in you! Good luck!

Little Ali
26th November 2008, 09:08 PM
Hi there,

I agree with what Simon's said about calling your GP but maybe a good physio might be able to measure your curves?

I have kyphoscoliosis by the way.

Buffalowilliam
28th November 2008, 10:43 AM
Hi Dan,
Interesting to read your post and I'm sorry to hear about all the problems you've been having. I also have Schuerman's Kyphosis, I've had the back surgery and if you look at my thread (I would provide a link, but its beyond me!) I'm considering having the rods taken out of my spine. I'm 28, had the surgery about 3 years ago, first saw a doctor about it when I was 16/17.

It sounds like your symptoms are a bit worse than mine pre-operation. My problem was the weight of my upper body pulling down on my curved spine, so although I woke up feeling fine every day by the end of the day I was in some degree of pain and walking for more than half an hour would require a lie down the instant I got where I was going. In spite of this the attitude of my doctor and especially my parents was 'its just cosmetic and not necessary to have surgery'. As a result I had to endure a couple of years of pointless bracing - I was already fully grown but worse a brace 23/24 hours a day for two years 'just in case'. Obviously I eventually pushed to have the surgery (I even had to wait til I was 18 so I could go ahead without parental consent!). So if you want to get the surgery then don't let anything stand in your way of getting it done. However, it is a very serious operation and has serious consequences in terms of recovery and pain even if it goes perfectly. It is also not a perfect cure - its not the case that you have a medical condition now, you have surgery and then you're fixed. In my case I'm looking to have the bars removed from my spine and then am looking at a life time of pilates/yoga or whatever to try and maintain my back in the best shape possible. So its definitely worth trying out different methods of improving your condition before jumping onto the surgery path.
I wouldn't stop doing any of the sports you love, if your back is agonising after doing a sport then its probably best to avoid it, otherwise just go for it. As you've said you have a condition that will be with your ofr the rest of your life - you need to live with it, not let it ruin your life and stop you doing what you enjoy. Doctors/sports scientists will ALWAYS tell you to be careful, its their job, take their advice on board and see it as nothing more than that - advice. Your the only person inhabiting your body, you are the best judge of what you can and cannot do. I bet your sports scientist doesn't have kyphosis so he can only tell you what he's read in a book. I'm not saying you should join a gymnastics team, but stopping doing something becasue of your kyphosis is crazy unless it directly exacerbates your condition to a significant degree.
For God's sake don't leave Australia! You say it would take four months to see a specialist there - how long do you think it will take to see one here?! Believe me its exactly the same. Between seeing my surgeon for my final appointment and actually having my surgery I had to wait 2 years! Its understandable that your worried and concerned but your condition isn't going to rapidly deteriorate at any point and the NHS is NEVER going to allow you to rush through the process. Definitely try and get an appointment with a sepcialist while you're out in Aus though, they're obviously FAR more qualififed to give you advice than I am and I think it would really help you mentally to get a handle on exactly what is wrong with you and how bad it is. I'm a bit sceptical that someone who doesn't have the skills to measure a schuerman's kyphosis has the ability to diagnose one. Go see a doctor and make a nuisance of yourself. You say they're 'reluctant' to refer you - at least they haven't said no, go make it so they're desperate to get you out of their hair and into a specialists care. Its not very British to kick up a stink but believe me its often the only way to interact with public health services.

I guess my number one piece of advice would be relax! You've go the rest of your life to deal with your condition and you will spend a small portion of the rest of your life addressing it. Its annoying and its an inconvenience but I still cycle 12 miles every day, go to the gym, go clubbing, get drunk and play fight with my friends etc! Sure I have a bad back and I have to be aware of that but on an average day its not something that really comes to my attention. So don't worry about the long term consequences of kyphosis. Right now you should concentrate on alleviating the pain you are in and getting an appointment with a specialist.

In terms of excercise I'm not sure that swimming is that great for your spine as it involves a lot of twisting and its the one thing I was specifically told not to do while recovering from my surgery. The absolute best thing you can do for your back is pilates. I have to say I hate doing it - its boring and you have to concentrate a lot (I much prefer to just thrash around and get a big sweat on) but its absolutely no impact on your spine and will strengthen the inner core of muscles surrounding your spine and give support exactly where its needed. Since your travelling you'll have lots of free time waiting for your specialist appointment so why not try some stuff out - pilates, yoga, acupuncture, reflexology. I'm not saying I'm a particular fan or believer in any of them but if it works then what's the harm?! Lots of people I know have had great results from acupuncture, can't hurt to try. Get a GP to refer you to a physio in Aus as well, they really know what they're talking about an mine worked wonders on my back.

Strangely enough I might actually be coming to Australia for a wedding at the end of February so we could meet up to have a talk about it if you like?! Haven't booked a ticket or anything yet, but its a distinct possibility (Sydney). Good luck man, help and support is out there and your back will definitely be better in the future - right now is probably the worst its ever going to be so stay positive, address issues as they arise and be patient. I think the one thing just about everyone on this site has in common is waiting around for months to see specialists! Talk to your girlfriend about it, your back problems are part of your life and if she is going to be then she should understand whats going on and how you're feeling. Enjoy Australia! Your back will be better eventually, don't let it spoil your fun now

Pete

Unregistered
8th January 2009, 04:35 PM
Hi.

I totally get where you are coming from.

I am 25 and was diagnosed with Scheurmann's kyphosis about 3 years ago. Because the curvature is "not that bad" (no one has ever given me an actual degree, despite asking all the time) and I have stopped growing I have basically been told that there is nothing that can be done. I first saught medical afdvice when I began experiencing lower back pain, and this has worsened to now being achey every day and having bad periods when I can barely move.
I am on strong painkillers and anti-inflammatories, have a physio plan to try to correct my posture and build up my core muscles but I have been told that that is it. I mostly rely on wheat bags and various postural supports to ease things. I asked about surgery and was told it wasn't an option, unless it was for cosmetic reasons.

The worst thing is that the doctors said that I should not be experiencing such pain with such a small curvature. That makes me feel like they don't believe me and I am making it up or something. Also, a really horrible doctor said that it was my fault- if I had saught treatment when I was in puberty I could have been treated. Um, if I wasn't in pain and just thought that my body was meant to be that shape (my Dad is similarly shaped) how was I supposed to know?? At first I got quite down, and even had to go on anti-depressants for a while.

I have learnt what things to avoid and now manage as best I can, but still I get very frustrated sometimes as this is going to affect me for the rest of my life and the best the docotrs came up with was life-long pill taking.

Let me know what happens with you

Abby.

hvdeen
3rd February 2009, 05:23 AM
Hi.

I totally get where you are coming from.

I am 25 and was diagnosed with Scheurmann's kyphosis about 3 years ago. Because the curvature is "not that bad" (no one has ever given me an actual degree, despite asking all the time) and I have stopped growing I have basically been told that there is nothing that can be done. I first saught medical afdvice when I began experiencing lower back pain, and this has worsened to now being achey every day and having bad periods when I can barely move.
I am on strong painkillers and anti-inflammatories, have a physio plan to try to correct my posture and build up my core muscles but I have been told that that is it. I mostly rely on wheat bags and various postural supports to ease things. I asked about surgery and was told it wasn't an option, unless it was for cosmetic reasons.

The worst thing is that the doctors said that I should not be experiencing such pain with such a small curvature. That makes me feel like they don't believe me and I am making it up or something. Also, a really horrible doctor said that it was my fault- if I had saught treatment when I was in puberty I could have been treated. Um, if I wasn't in pain and just thought that my body was meant to be that shape (my Dad is similarly shaped) how was I supposed to know?? At first I got quite down, and even had to go on anti-depressants for a while.

I have learnt what things to avoid and now manage as best I can, but still I get very frustrated sometimes as this is going to affect me for the rest of my life and the best the docotrs came up with was life-long pill taking.

Let me know what happens with you

Abby.

Hello Abby-I know this is a thread for Dan but I really wanted to let you know that doctors are idiots and I wish you didn't have to go through those experiences! My back was really bad and I didn't know it was Kyphosis and thought it was my fault and a doctor hinted at it being my fault and I changed doctors and she noticed it and sent me to a specialist and found out it completely wasn't my fault! It is not your fault at all and NEVER believe for a second that it is. The doctors don't know anything half the time and if they would spend just a day in patient's shoes that they have dismissed, they would realize that they may have been wrong. There is more you can do and you should be able to live a good life and you should really seek another opinion. If you need to be on pain killers then there is obviously something not right and you need to find a doctor that isn't pig headed. Sorry for calling doctors names but I have had some real idiots as well. Never settle for one doctor's prognosis if it doesn't seem right-get another opinion and another until you get someone that takes you seriously. Oh and whether you "should" or shouldn't be experiencing so much pain-you are and the doctors should do something about it. It isn't like you can say to your body that it should not be experiencing so much pain and that your body will just automatically readjust the pain level to what you "should" be feeling. Doesn't work like that. Sorry-hope this helps. I get mad at doctors who don't care and treat patients badly and there are way too many doctors that do that and it is sad.