Anyone here with scoliosis? - British Lung Foun...

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Anyone here with scoliosis?

LungLou
LungLou

Anyone here with scoliosis?

19 Replies
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Hi LungLou, yes I was born with it as well as Hydrocephalus (water on the brain) the Scoliosis is what has caused my respiratory problem.

Ian.

LungLou
LungLou in reply to Ian1967

Hi, how are you Ian? Must admit I have been suffering somewhat with 6 months practically indoors.

Ian1967
Ian1967 in reply to LungLou

Hi LungLou, I’m fine now I have to use ambulatory oxygen and BiPAP and oxygen at bedtime now, but compared to using oxygen 24/7 my life is now much better.

Like you I haven’t really been anywhere since lockdown, we went on a family holiday to Cardigan Bay at the end of July, but haven’t really been anywhere else, I’m more or less still shielding and probably will be until a vaccine is available. Since lockdown I have still been going for local walks two or three times a week, more for my own physical health and sanity.

I only wish I could have had my Scoliosis reversed when I was younger, but because of my Hydrocephalus I wasn’t able to unfortunately.

Ian.

LungLou
LungLou in reply to Ian1967

Ian..assuming you were born 1967 you only have 8 yrs on me. I’m 45 (jeez!).

I’ve been on Bipap last 20yrs and supplementary oxygen in day since May this year. Just had lung function tests with awful results but at least the Echo scan said my heart was undamaged.

I had spinal surgeries but life saving rather than corrective. Still curves of 100degrees or so. Still wonky & because spinal fusion so young im only 4ft 4. Big attitude though lol

2greys
2greys in reply to Ian1967

I will not "like" your conditions, but "like" that you have taken the time to reply.

My wife has scoliosis, a score of about 55. She has stage 4 Copd. It impacts significantly and increases her breathlessness

LungLou
LungLou in reply to hillclimber1

Hi Hillclimber1. I’m sorry your wife is so unwell. I hope she is still getting good medical attention throughout lockdown. Can I ask if she is a smoker/former smoker?

hillclimber1
hillclimber1 in reply to LungLou

She stopped smoking about four years, ago but now vapes

LungLou
LungLou in reply to hillclimber1

You cant help someone who doesn’t want to help themselves is an awful platitude but may be true.

I can understand quality over quantity but it doesn’t sound like she is enjoying herself much.

Try talking gently, ask her of she has a bucket list. Not because you think shes going to die any time soon but it may just tempt her to assess her situation & appreciate the little things. Start small. When was the last time you were at the beach/marina? Had a meal out? Went to a nice park?

I wish you all the best

Ive had a lumber scoliosis most of my life.its impacted on rest of spine,hip,legs as tendons,ligaments,muscles and bones all pulled out of place.very painful past 25 years.prior to that, it didnt cause me much problem( while damage was being done).how is yours x

Hi Pat, sorry you are in so much pain but I can relate. Growing up and in into my 20’s I barely took Paracetamol but now in my 40’s I’m on a huge amount of meds, patches & creams and still grind my teeth in pain every day. It has impacted on my mental health as I hate losing independence and just being able to go out and do what I want , when I want.

My breathing has also decided to get much worse as well. If I was a dog I’d be on my last trip to the vet by now lol.

Humour is my only way of coping at the moment lol

Patk1
Patk1 in reply to LungLou

This is exactly what i say! " if i was a dog youd have put me down long since". So i feel 4u too.theres not a lot that helps with the pain.i do start painkillers and gabapentin for nerve damage,from neck,about 5am.i find it takes 3 doses before pain is bearable.do u use a wheatpack or tens machine? For lower back to waist,i also have a mcKenzie roll - its really gd and recommended by physio.poor u,it must be awful to be such a severe curve,and leaving u so short will b a prob in itself.is yrs where ribs attach to spine xxx

Hi LungLou - Ive had scoliosis since a child due to one leg being3/4 inch longer than the other and also being hypermobile which is at least as problematic - the scoliosis has never been bad enough to qualify for surgery.

The scoliosis hasnt troubled me much until recently. I have a huge muscle mass on the right hand side of my spine and everything is out of kilter. Im having physio at the moment with an adorably handsome young man called Max who more importantly seems very good at his job.

However your situation sounds massively worse than mine. Im sorry its so hard to cope with and I admire your spirit. Take care :) :)

Patk1
Patk1 in reply to O2Trees

Is yrs lumbar too? The scoliosis shorten 1 of my legs by 1" (20yrs since found that so cld be more now).ive also found that ive now a much more pronounced inwards curvature,above the lumbar spine.my lumbar scoliosis rotated spine sideways.never talked to another scoliosis sufferer before so gd 2 share x

O2Trees
O2Trees in reply to Patk1

Hah! Chicken and egg - never thought it might be the scoliosis responsible for the shorter leg. Lumber is spine, right? So yes, that's where it is. I had lots wrong when I was very little - my knees were so loose that calipers were suggested but my father refused - probably not for clinical reasons. But in the end he was right. My knees were splinted and bandaged each night and Ive never had much problem with my knees since.

So you have orthotics? Mine help a lot, including for flat feet.

Patk1
Patk1 in reply to O2Trees

Yes,lumbar is lower spine.oh u poor thing.gd that yr dad was correct.i have had orthotics and helped for a while.ive got bunions and had few broken bones,on both feet leaving me in lot of pain so these days i prefer to opt for comfy supportive trainers and i find going up half a size in hotter shoes,which have such comfy insoles,best for me.i have periodic steroid injections help relieve bursae i get on femurs,due to the scoliosis causing hip joints to be out of alignment (( .its no wonder we r in constant pain!! Its worth having physio as learn so much from them.it doesnt go away, so proper stretches are important

Patk1
Patk1 in reply to Patk1

Soz just read yr having physio.learn all u can from him as will help in the future

O2Trees
O2Trees in reply to Patk1

Thanks for your reply Patk1 - Ive got to 74 without having much pain - anywhere actually except accidents etc, things which heal up. So it could be worse but the physio is great and is helping a lot. Hope you are as well as possible. :)

Patk1
Patk1 in reply to O2Trees

Thats great!! Yr v fortunate not to have much pain.hope it stays that way 4u.glad physio is so gd too x

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