Pectus Excavatum

[Mini1977]

Hi,

Recently found out I have pectus excavatum at the age of 30. Ive had problems with breathing and chest pains for years and also never been able to exercise because of the breathing problems. I always assumed I was unfit but now its apparent my body isn't working the way it should. Out of the 12 ribs in my body only 2 of them operate the way they should.

Ive been given exercises to do for 6 weeks and if no improvement then it will be surgery.

Im just looking to see if anyone can share their operation stories good or bad so I can weigh it up.

Have you had all the tests - CPET, measurement of haller index, spirometry, CT scan.
From my experience (which seems common) there is a long long way between diagnosis and surgery. Join the pectus matters Facebook group. There is a trial for pectus patients where surgery is offered but it is closing soon. The other route to surgery is via MDT after all the tests have been completed and it is decided surgery is warranted. This would only be for more severe pectus.

The trial is called the restore trial and the NHS has a new pathway. All the info will be on the Facebook site so you can make sure you are going down the right route.

For me I had to get a referral to Joel Dunning in Middlesbrough (after years of ‘asthma’), then a raft of tests which took over a year and I’m now awaiting MDT. I’m not hopeful of getting onto the trial due to the imminent closure. But I am hopeful of getting surgery (nuss procedure) as my pectus is severe. But it has even a VERY long process so far.

HTH

Ive had spirometry and also CT scan done, seen a physiotherapist who has done some breathing work with me while checking my rib movement.

Ive had the diagnosis since last year. I unfortunately dont have FB so im unable to check this out. The first doctor i spoke to after CT scan and spirometry has referred me to physio because he said the operation was extensive so wanting to try physio before going ahead with it.

Physio has attempted to move some of my ribs back into the correct direction and given me some exercises to do at home for 6 weeks. He has said if the exercises dont make a difference then the operation would be the only option. Again he has told me the operation will be extensive and I will require rehab to recover from it so I really need to weigh up my options. Im from Scotland so not sure if that makes a difference but from the doctor and physiotherapist ive spoken to its seeming very likely the choice is on me and hence my post to find out peoples experiences.

The physiotherapist was actually shocked at how ive managed to get this far in life without complaining about it as I have stacked breathing where ive never been able to take a deep breathe in one. It has to be done in stages and even at that im only managing to get at most 1 second of breath in whereas he said the average person can manage 4 seconds. Ive never complained about it because ive put it down to being unfit but after the tests and seeing physio it's now apparent im not unfit my body just isn't working the way it should be.

https://sshi.ie/pectuscheck/ this is an Irish Surgeon.