Kyphoscoliosis diagnosed.

[Confused01]

Hi All,

I have just been diagnosed with thoracic kyphoscoliosis from my thoracic and lumbar mri. Y gp ordered the mri due to my persistent pain.

This hasn’t been there for many years as previously mri didn’t show it at all.

I don’t know the severity due to little detail on the report. The curves can be felt by hand too.

I am thinking I should ask my gp for lung capacity tests and full tests for possible osteoporosis.

I’ve had a lot of chest tightening, pain and sometimes breathlessness which seems to have got worse recently. I have read kyphoscolliosis reduces ling capacity so thinking it this.

Anyone else had or getting this. What does it like?

Has this condition affected or caused any other medical conditions?

New to so be pleased of any info.

X

[SimMartin]

I can’t say that your situation is the same as mine but I have scoliosis (often drs write kyphoscoliosos by ignorance so that’s just a wild card) but mine was from age 12 following polio aged 5. My breathing is affected as the lung capacity is reduced.

However mine is very severe and higher up in the thoracic area only a bit lumber. I would be surprised is a mild scoliosis low down would have a major impact on your lung capacity, but I’m not an expert.

So yes spinal curvature can impact breathing but in your case, late onset lumber I’m not sure, unless it is impacting your posture and diaphragm.

[Confused01 in reply to SimMartin]

Hi, Thanks for replying. The report is vague, stating 3 areas of my spine conditions (4 conditions 🙄). There are no details like degrees of curves etc on the report. I have been experiencing rib sternum and thoracic pain and tightness for sometime, certainly getting worse not better. Bone scan confirms not costochondritis. Breathing feels tight when it kicks off. This is why I wonder if the Kyphoscoliosis is causing. The spine area is painful and the curve to the left and outward can be always tender).

Mine isn’t congenital, unless previous thoracic and lumbar spines didn’t pick it up, but unlikely. My Mother was born with significant scoliosis. Ignored for many years, always had unexplained chest issues. She was finally offered a major operation at 80! She declined and is now in a wheelchair.

I am waiting to speak to my gp re the report regarding all of my spinal issues.

[Confused01 in reply to SimMartin]

Hi again,

My kyphoscoliosis is not low, mid way of rib cage height, thoracic, not lumbar.

I am having problems with pain that also round my ribs and sternum, feels very chest tight. Definitely a lot worse than before suddenly. Had this for sometime but Dr’s always guessed at it being costochondritis…I always disagreed and now know what it is.

Have you been able to get any help for your kyphoscoliosis? If so which type of Consultant, Rheumy, Spinal, etc?

Thanks

[SimMartin in reply to Confused01]

I actually had a spinal fusion which whilst quite a tough experience as they fused my whole thoracic and into my first cervical vertebrae.

The pain I had before was virtually cured but it did restrict my flexibility and my breathing slightly.

I may be quite different because I had paralytic scoliosis and they managed to stretch me before they operated and then fix it in that position. I was young too so my body was more flexible but there are more advanced surgery now and time to recovery less as it took me 9 months to get back to my activity level -

But for me it was a life saver and though I still have occasional pain it is just minor and occasional now as opposed to the almost unbelievable pain I had in my chest and ribs before

Maybe consult a specialist orthopaedic surgeon who specialises in scoliosis

[Confused01 in reply to SimMartin]

Thank you for your reply.

My mri a year ago showed no signs of kyphoscoliosis so I know it’s sudden onset and definitely got worse in last 3 months, pain there and going round ribs to front and sternum and joints to,restricting, breathing feels different, left upper leg issues (read can relate to).

The mri report is frugal in detail. I don’t know what the curve ratio is.

Can I ask how your help was initiated ie gp, referral to consultant..if so which type of specialist? Are you U.K.?

My gp is useless..called me saying all normal. I have cervical stenosis, no cervical spine curse, lumbar and sacral issue, now kyphoscoliosis. Not normal.

I’d also like to know the kyphoscoliosis cause as sudden . Could be osteoporosis, arthritis etc. Did they check this for you?

So sorry, many questions.

X

[Mavary]

Hi I’ve got a Kyphos and my breathing can be bad when I do things. I’ve got scarring on my lungs caused by TB and pneumonia. I wasn’t too bad until my last upper four fractures happened. I’ve had seven fractures in total. And yes I do struggle. I won’t let it beat me though. The only two places I’m comfortable in is my bed or my recliner. My scooter is quite comfy too.

[Confused01 in reply to Mavary]

Hi Mavary,

Thank you for your reply ❤️

Sorry to hear your clearly suffering.

My report simply says Kyphoscoliosis , no indication of to what degree. It’s painful in that area and the curves out and to the left can be felt.

I’m getting chest tightness and had rib and sternum, rear pain for ages, kind of breathlessness ,getting worse. My concern is if it’s the kyphoscoliosis or not.

Was yours congenital? If not how quickly did it progress? Did the check for osteoporosis and lung function?

Sorry for so many questions. Finding the chest tightness scary.

X

[Mavary in reply to Confused01]

I think my Mother had a little bit of Osteoporosis and so has my Sister but nowhere near the degree of mine.

I don’t know if I get breathless because of the pain or whether there’s another reason but whe my back is really bad like it is at the moment. That’s when I get breathless. Washing up or doing anything with my arms gives me pain which makes my breathing bad. I’ve wrapped up parcels today and my back is so painful. Should I do it. I don’t know but I do. I’ve said I won’t do it next year but I’m not too sure.

A Kyphoscoliosis sounds like you have a hump in the back that twists to the side. It doesn’t sound good. A lady that lives near me had her scoliosis operated on and she’s gone back straight now. She had it done privately and payed a lot of money though.

[Confused01 in reply to Mavary]

Hi. My Mum was born with scoliosis. Unfortunately they didn’t offer an op till 80, which she refused and now in a wheelchair.

Mine can’t be congenital as wasn’t on years of thoracic mri’s before.

I get nasty backache after doing very little and it’s unlikely to improve more steadily worsen. I have cervical and lumbar spine problems too so I guess between them they are having a bit of a pain party for me 🤦🏼‍♀️. I’m also getting tight chest, ribs and sternum (has for sometime before the scoliosis was determined).

I have a GP call appointment soon and thinking I should ask them to do a lung capacity check and test for osteoporosis which are the two things reported to effect and/or be cause of.

Just wondered if anybody else has had these checks .

[Mavary in reply to Confused01]

I’m 80 and I’ve said no to an op. I know I struggle now but if I lost the use of my legs I would be in a home and I’m not prepared to do that.

You sound very much like me. I get pain on doing very little. I also get breathing problems where I have a Kyphos.

[Confused01 in reply to Mavary]

Did they offer you an op after many years?

My Mum has considerable breathing problems and chest pain. Dr’s never told her it is her scoliosis…I only know from a little googling.

Are you in the UK?

[Mavary in reply to Confused01]

Yes I’m in the UK. I’ve never had anything ever mentioned about an op till I went for physio. I was hoping physio would help me do more. The trouble is I’ve been struggling with Christmas so much that exercises haven’t helped at all. He’s left me an open appointment for twelve weeks but if he can’t do any more what is the point. I’ve been like this for five years now since my T12 and four more fractures happened. I’ve had seven spinal fractures in all.

[Confused01]

Hi All,

Am I thinking correctly from replies that kyohoscoliosis causes rib fractures?

In 8 months since posting this my thoracic Kyphoscoliosis as causing me more pain and issues (on top of that I have considerable cervical stenosis and S spine issue too.

My gp recently referred me to haematology re abnormal bloods….referral came back referring to kyphoscoliosis!

I’ve been offered nothing for my spine. Anyone tell me if they have and at what point? Ie Neuro, physio n etc.

Thanks