I've put this in Teens because it's a health issue that raises its ugly head in adolescence

[FlatlandWabbit]

My son (15) was diagnosed with Pectus Excavatum and Scoliosis in August last year. The scoliosis is only mild - between 7° and 8° right curve and 6° and 7° left curve... though he has a considerable rotation of the spine in the upper curve. These are being monitored and I'm happy with his orthopaedic surgeon's advice.
This is complicated by pectus excavatum, which seems now to be affecting his energy levels and breathing and of course, his posture.
The cardiothoracic department are closed to all but urgent cases and emergencies, he was supposed to see a consultant and have scans in November, but nothing's happening.
Of course, I'm a bit overly focused on his growth and how quickly changes can occur. I want him to have the best opportunity to fulfil his dream of becoming a military officer. I'm worried that while our hospitals are closed and without monitoring, his conditions will worsen and he will end up having a rubbish outcome...
Does anyone have any experience with this dual problem?

No experience sorry but hopefully someone will be along soon

Hi
My DD who is 23 has scoliosis, diagnosed at 16. She has a 45 dgreee curve with some rotation. Her hips and shoulders are level and an untrained eye would not spot it. Her consultant (private) doesn't want to operate, believing she wouldn't want the loss of flexibility. But pain is now rearing its ugly head. I won't sugar the pill: scoliosis is a f2cker of a condition. It has messed with her head considerably as well as causing pain.

I read that vitamin d and calcium supplements can stop progression of the curve. have your consultants advised these?

@deathbollywood no.
I'm afraid I've become fatalistic about it. We went down the brace route briefly but bc we discovered the curve quite late it did nothing but harm psychologically - painful to wear and a bugger too when you're 20 and want to just live your life.
We've never come across advice to take vitamins. I'm sure they won't harm but.... welll... is best not say more!
Do you have a DC with scoliosis?

Hi, I don't have any experience of PE but I developed scoliosis in my teenage years. I was not properly diagnosed until I was 18 by which time it was considered too late and I just just tried to crack on with life, albeit rather lopsided!
I was always fed a grim outlook, that it would always get worse etc. But now, at the grand old age of 50, I have started to work on it by doing yoga and pilates everyday and I'm seeing a big improvement. My step daughter is studying physio and she says they are changing the advice given on scoliosis now. While it may not be able to be fully cured in everyone, it can certainly be managed to a point where it doesn't interfere with life.
I know this might not help OP because this doesn't take into account your son's PE. But starting with something simple like a daily 10 minute pilates routine (there's tons of free stuff on YouTube) could prevent any further progression of the curvature.

@dreamingofFrance I'm jumping on OP's thread here but I love stories like yours. DD was diagnosed af a similar age. I am grateful to her surgeon for urging caution on surgery (her curve means she'd lose a lot of flexibility). We both trust him too which is great.
She does lots of strength exercises and lifts weights which I know is controversial but it keeps her strong. I am confident that in time she'll find yoga and Pilates help.
But gosh it messes with her head, and when she's stressed she gets pain far quicker than anyone with a straight back would.
And don't get me started on GPS. They still use the dreaded H word. Aarghhhh!
Fortunately there are quite a lot of Instagram accounts featuring young women with scoliosis, and it does DD good to see them.
I would also say to OP that SAUK are great to talk to

My 12 yo has PE. No scoliosis. He complains of his chest hurting when he exercises. Usually very fit (when not in lockdown 🙄) and active.

Is a private clinic an option?

My son currently has a Nuss bar to correct his PE. It was inserted in Jan last year. It's due to be taken out later this year. We were led to believe he is likely to be one of that last young adults to get the procedure on the National Health as its considered cosmetic, although that doesn't sound the case with your sons OP. I cannot begin to tell you how it was affecting him mentally so we were very grateful to have the procedure. He has slight Scoliosis but it's not affecting him at all at the moment and is just being monitored at this stage. Let's hope that consultations and treatments begin again soon. I wonder though, do you have the consultants name you were due to see? You could try emailing his secretary purely to explain your worries in the hope the consultant replies to reassure you and with some information about timelines?

I’m so sorry, OP. I don’t know anything about the condition but I have a DC waiting to be seen about something else, and it’s just awful to think of these conditions getting worse and worse without medical input.

My brother has PE and has always kept very fit as a result because my parents were told it would help when he was younger. He used to have to "heave" to catch his breath a lot and bang his chest with his fist when it hurt, but he has grown out it as an adult and only occasionally does it now. He continues to make sure he stays super fit and healthy, I think it also helps not to have any excess weight to put pressure on the ribs and chest as well to help his lung capacity.

Honestly I'd get the scans done privately if you can to speed things up. I had back problems since 7 years old and my mum ignored me, got diagnosed at 17 with scoliosis and it was just too late to prevent.
It's a moderate curve so just about fine to have not had surgery but still bad enough to put me in pain daily.

I don't know how long the wait is at your local hospital but you can call for an estimated timescale and consider what to do.

Hi @FlatlandWabbit
I have just been diagnosed with PE and scoliosis at 33 years of age, picked up on an unrelated chest X-ray. I have been short or breath and heart palpitations and I don't know if that's what's causing it. I'm
So anxious but waiting for appointment witn orthopaedics. I'm that anxious I'm thinking of going private. I knew I had PE but it never bothered me, I'm just hoping it's not related to the PE

Thanks for replying, 45° is a considerable curve, I’m surprised your daughter hasn’t been advised to have surgery.
I’ve decided I’m going back to my GP with my son, he’s developing pain in his chest now, I hope this will speed up the process of getting proper care.

Soontobemrs: I hope you find some answers, it sounds as though you have a similar profile to my son.
May I ask, are you very slender? I’ve heard there’s a link to body type.

Screwcorona: we are private, we’re in the Netherlands.

Daftness: thanks. It’s great to hear your son has had a successful Nuss procedure, fingers crossed for the removal. I’m desperate for my son to have this before his scoliosis worsens. I’ve seen research that confirms improvement of scoliosis after the Nuss Procedure when the Cobb angle is under 15°.

I’m not able to contact the cardio thoracic dept at the Radboud. They have no published e-mails or phone numbers (I’ve tried to ask the helpdesk too) and we don’t know the name of the consultant.

Hi, my son had P.E. & at puberty it deepened dramatically. It affected his confidence plus his stamina when playing football & running due to his heart & lungs having limited space. He had the nuss procedure 4 1/2 yrs ago & it has changed his life. He kept it in for 4 yrs & removal was pretty easy with no regression. He is incredibly fit & no longer hides his body.

Thanks so much for your insight, I’m so glad your son has full strength and stamina now.
I am still trying to get the scans necessary to measure the Haller index and see how much constraint the sternum is causing.
CT depts still closed because of Covid.
DS’s symptoms increase.
At least his scoliosis control is going ahead though.