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TOPIC: Adult, ex athlete agonist, going to undergo PE surgical correction

Adult, ex athlete agonist, going to undergo PE surgical correction 3 weeks 2 days ago #8301

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Hello, I'm willing to share my experience with Pectus Excavatum.
I'm not english native speaker and I hope I will not butcher this language.
  • I'm 33 yo, 184cm tall, 89kg and I have a Type I symmetrical Pectus Excavatum, Haller Index 4.2
  • My sternal manubium is just a little bit caved in but it's definately NOT all the way caved in and the defect mainly affect the sternal body, with maximum depth being at the point of articulation with the xyphoid process.
  • I do not have significant rib flare, it's not pronounced but it's maybe a little more intense on the left ribs.
  • I developed worsening and untolerable symptoms through the years.

Symptoms be like:
- Unable to sustain even a small fraction of desirable/expected physical exertion
- Always dizzy in the morning and needing WAY TOO MUCH sleep in order to feel normal and not fall asleep/faint during the day
- Airways infections that last months
- Dyspnoea
- Heart-ache
- Sometimes sleep-apnea and/or need to rise from bed and go to pee or to move in order to achieve correct bloodflow
- During latest years all those worsened way too much for me to ignore them

It SEEMS I do not have any other major syndrome nor diabetes nor any other clinical affliction that could be related to those symptoms, still I'm going to repeat a series of clinical test as per request of the latest Nuss expert that visited me.


Only one medic, a distant aunt of mine, has ever advised me to undergo surgery: that was roughly 19 years ago and I believe it happend when Nuss procedure started being used in my country.
Every other doctor always told me "it's just a minor aesthetic defect, nevermind it".
So I never linked my symptoms to Pectus Excavatum.

Until roughly two or three years ago I never thought I should undergo surgical correction, because even if I definately had many symptoms I only recently discovered that they should or could be PE-related.

  • My symptoms started around the summer I turned 5 years old, I can perfectly remember that because I couldn't rise in the morning in order to go to the beach with my parents and I was always feeling very sick in the morning or while walking uphill
  • My Pectus started showing itself or being noted when I was 3 to 4 years old. (doctors at the hospital showed incredible incompetence saing they had no idea what that thing was and they also said I had both trisomy 21 and rickets both of wich I clearly NEVER showed any symptoms of, so please bear with me and try to understand that I live in a country where sometimes being a doctor is a big joke)
  • Symptoms definately worsened when I was roughly 12 to 14 years old and undergoing a few intense growing spurts. (I was in many respects one of the best athletes in my middle school and in my swimming centre, still I suffered short breath and extreme pain during excercises)
  • Then symptoms worsened again when I was 25 to 30 years old and MAYBE my pectus worsened (I think it could have worsened or at least it LOOKED like that and I say it because MANY people told me so and I noticed the event myself, but maybe it was just an aesthetical thing related to posture and muscles and maybe the worsening symptoms made me oversensitive about the aesthetic defect!?)

I want to stress that my symptoms worsened to the point to severly bother me when I was at an age ranging 25 to 30 years old and HAVING NO IDEA THEY MAY BE RELATED TO PECTUS, to the point I was starting to be really worried about what the heck was going on with my body and my heart and my lungs. No doctor ever pointed out that maybe my symptoms could be, at least partially, related to my Pectus

All my life I've been an athlete and a very serious one (mainly martial arts, culturism and combat sports).
I have had an ectomorphic type of body structure my whole life: from 13 to 25 years old I've been roughly 180cm to 184 centimeters in height and 58kg to 73 kilogrammeters in weight (I shouldn't have Marfan Syndrome, though, or at least no doctor has ever pointed that out)

I have always had good athletic performances BUT I never developed a normal resistance to physical exertion, to the point that no one ever believed I actually was an athlete until they saw me performing some athletic feature:
- I could run faster than anyone,
- jump more than anyone,
- I was a discrete fighter in many martial arts and combat sports (mainly Taekwondo, Boxe, Thai Boxe but I could wrestle too),
- I was good at both basketball and swimming,
- I had athletic resources powerfull enough to make me able to play with discrete success many other sports in wich I was not properly trained,
- plus I was able to win competitions and to perform remarkable feats of different sorts
BUT STILL I was never able to sustain as much physical work as a common non-athletic person was supposed to!
I mean: not even after MANY YEARS of hard exercising and dieting and being able to achieve peak athletic features I have ever achieved a normal resistance to physical exertion!
And all that is related to a young and very lean agonist athlete and I wasn't really bothered by all of my deficiencies.

I want to point out that I studied and practiced some types of respiratory techniques related to martial arts, culturism, physiotherapy and to Opera Singing and that, due to a few injuries and a few postural problems, I was forced to undergo physiotherapy and global postural correction and I kept repeating my exercises my whole life in order to maintain my laboriously acquired results. I also started when I was maybe 13 years old to do physiotherapic excercises wich where meant to stop my pectus form worsening.

Also: few years ago I actually tried building a big muscle structure, by changing my athletic plans and diet:
I successfully became 90kg while in bulk period; when I tried starting the wheight-cut process (I wanted to be roughly 84 to a minimum of 80kg lean) I finally noted the SEVERE worsening of my symptoms. I want to point out I never used sport-drugs nor steroids but many people in different sport structures were really WORRIED by the way i was SUFFERING while exercising and told me "you can't train here anymore unless you bring us a new cardiological paper because we are too worried you'd die here, you surely have something wrong with your heart, it's not possible a young and healthy athlete cannot sustain minimal workout without feeling heartache or starting to faint".


During latest years my body condition actually worsened because I'm not able to sustain physical efforts anymore, so now I'm kinda out of shape (not really, I'm not obese or something, but at present time NO ONE would ever credit me to be an agonistic athlete with a 30 years old athletic career!)

Still I tried to keep going on and to keep up with training but it is too difficult for me and I'm starting to feel worried: are my symptoms going to progress and worsen through my whole life?
I hope I'll find out if all my symptoms are actually related to PE or if I have some other issues, because doctors here in my country tells me "Pectus Excavatum COULD be the cause but you should have a WAY WORSE condition related to depth and especially to manubrium depth".

Thanks to everyone that would comment.
I will keep you informed.

P.S.
One a sidenote: I forgot to point out that in many years of workout I've made my resting heartrate go down slightly under 50bpm (maybe 48-49bpm at rest in the morning was the absolute best I achieved). During the last 9 years it slowly went up and it almost reached 80bpm at rest (actually I had it measured at 77 and 78 at rest in different moments and different structures).
This is kinda worring me, too. I have no idea if it is related to pectus.

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Adult, ex athlete agonist, going to undergo PE surgical correction 2 weeks 5 days ago #8463

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UP

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Adult, ex athlete agonist, going to undergo PE surgical correction 1 week 4 days ago #8771

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I managed to took a few pictures.

Don't comment on bodyshape please, since I have pratcally lost almost all hard-gained muscles and I'm kinda suffering for that.

Manubrium of the sternum here is visibly compromised (in the CT scan is even worse but if you see me frontally the defect almost doesn't show) and that's why I was wondering if Nuss would be a better choice than a Mini-Ravitch wich starts a few centimeters under the manubrium.

Also: maybe the hair and light are covering the defect but it is visible anyway (it's 4.2 Haller Index).


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Adult, ex athlete agonist, going to undergo PE surgical correction 1 week 4 days ago #8772

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In the CT Scan it shows clear signs of deformity starting from the manubrium of the sternum, heart compression starting from the sternal body and, towards maximum depth (towards the bottom part of sternal body and the junction with xyphoid process), there is a clear and strong deformity of my heart.

When I was a kid I remember my whole chest pulsating, especially under fatigue, and it was visible to the naked-eye like the rib cage was being pushed outside by the heartbeat. It hurt like hell but I kept practicing because I wanted to achieve.

What REALLY bothers me is the fact that my symptoms probably started worsening many years ago but I didn't recognize them at first because I was at peak athletic abilities of my life and lived a really healthy life like some kind of olympic athlete and I was not bothered by certain limitations I had (still I had shortness of breath, bronchitis, bad sleep, palpitations, dispnea and so on)

Since my symptoms worsened and I started not being able to exercise anymore and people around me got SCARED and sent me to check my heart, I had really dismissive and not serious approaches by doctors, with a few doctors bein even arrogant and ill-mannered, telling me "your pectus is not even a defect, it's really beautifull and perfectly masked by muscles and hair, and you should have no symptoms because your sternal manubrium is PERFECTLY IN PLACE and because symptoms are absurdly rare and only show in Haller Index way above 7 or even 9 points: if you START excercising and stop smoking and drinking, your symptoms will disappear".
I had to point out I am an accomplished athlete with 30 years of experience in practicing, studying, winning, teaching, bringing other people to win fucking competitions and I don't drink nor smoke, for christ's sake.

Now I'm still looking out for where I could actually get a good price for those new medical examinations the surgeon prescribed me (dlco, cpet and whatnot), even if I know they won't probably show anything really badly pathological (because scientifical papers demonstrate that people with defects like mine show symptoms wich disappears after surgery but their cardiopulmonary functions were kinda not severly pathological even before surgery).

Has anyone here ever had similar experiencies?

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Adult, ex athlete agonist, going to undergo PE surgical correction 1 week 5 hours ago #8806

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Here it should show the defect better.
In all these photos should also be clear the manubrium is slightly pushed inward but not too deep at all, so I got classified as Type I, even if the CT scan shows a flattened upper torso.
I wonder if that classification as Type I instead of Type III might be an error and if I should worry at all.

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Adult, ex athlete agonist, going to undergo PE surgical correction 1 week 5 hours ago #8807

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I'm putting the reference here, so I will have a record from where I could compare data after surgery and maybe show some information for people who could need any.

I would also appreciate any kind of link to stories similar to mine.

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Adult, ex athlete agonist, going to undergo PE surgical correction 1 week 4 hours ago #8808

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Those two are related to the manubrium too (the first shows the portion toward the upper part, the latter should be showing the end of the manubrium and articulation point between manbrium and sternal body).

Has anyone had personal experiencies related to this?
Sternal manubrium being slightly compromised with a flattened upper torso but not having deeply indented manubrium and so being classified as Type I PE?

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