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TOPIC: Doctors not strongly advising for Surgery: How common?

Doctors not strongly advising for Surgery: How common? 1 month 3 weeks ago #8308

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Hi, I presented my whole case in detail here in this presentation topic:
www.pectus.com/forum/2-introductions/142...-surgical-correction

Briefly:
  • 33 years old, (ex) athlete 183cm x 88kg (I severely fattened in the latest years, since my symptoms worsened way too much)
  • I have a type I (maybe type 3) symmetrical pectus excavatum,
  • 4.2 Haller Index,
  • Sternal manubrium roughly in its proper position (if it is slightly depressed and not correctly angled) ,
  • Toracic CT showing heart compression.

My whole life I've had symptoms that worsened and worsened with age and no Doctor could ever tell me why I had those, so we searched many culprits (allergy, asthma, sleep apnea and so forth) and I only recently discovered that Pectus Excavatum COULD be the culprit.

I noticed that in countries such as Detuschland, Netherlands, Great Britain and USA doctors usually advise for surgery.
In my country even the doctors that actually recognized my heart compression and the fact the I show all the symptoms connected to a Symptomatic Pectus Excavatum tell me "You should MAINLY undergo surgery for aesthetical and pycological reasons, because it is nowhere sure that surgery will relieve you of your symptoms".

Any opinions and experiencies to share?

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Last edit: by Simba.

Doctors not strongly advising for Surgery: How common? 1 month 3 weeks ago #8309

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Hi Simba,

When I presented myself to the ER Midway last year and had an 'official' diagnoses of PE, the Dr's mostly all warned it was a big, intrusive surgery and a procedure with certain real risks. Given the realities of life, I kind of grudgingly understand why they recommend not having surgery. Not everyone is comfortable with surgery and I'm picking they want you to go away comfortable with choosing not having surgery if you don't want to deep down, and being able to live with your decision.

BUT, I saw a specialist (see my previous posts the last few days) just yesterday and he said Dr's tend to be dismissive of PE. This annoys me a lot given the symptoms and negative impact it has had on my life. I haven't decided on surgery as I'm still in an information gathering stage and won't be pressured into having surgery, however, If he said come in for surgery in 1 week's time, I'm sure I would leap at the chance for 1) my future health 2) increased stamina and 3) aesthetic and psychological reasons roughly in that order of priority.

The big thing the specialist impressed upon me yesterday was that improvements in stamina and endurance are really hard to quantify. I know enough about the complex workings of the human body to understand this.

Hope that helps.

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Last edit: by dh66.

Doctors not strongly advising for Surgery: How common? 1 month 3 weeks ago #8310

Hi Simba, I'm a 31 year old male who had the Nuss procedure about 7 months ago.

I can relate to how you're feeling. I almost had the Ravitch procedure when I was a teenager at UC San Francisco. The day it was cancelled (they thought I had other heart problems and didn't want to cut me open then if they'd have to open me up again soon) they told me it was mostly cosmetic and that I'd be fine.

I can understand some doctor's caution about surgery because surgery isn't guaranteed to fix the physical problems but it can definitely help. My lung capacity tests before surgery said I had about 80% the expected lung capacity of somebody my size. I'm in the 90% range now. My chest isn't perfectly flat now either but its way flatter than it was before. I'd still be self conscious to take my shirt off at the beach but at least the thought isn't horrifying anymore. The doctor thought my heart rate would go down after surgery seems how it wouldn't be squished anymore but it hasn't gone down yet. There are also some horror stories in these forums about people who had the surgery but were in nothing but pain and had to have the bars removed or who had their chests relapse years after a successful surgery.

I didn't notice much of a lung improvement for awhile after surgery but the past month or two I've started to notice that my legs will get tired before I run out of breathe. That was a strange experience for me because I've always had to stop jogging because I couldn't breathe and not because my legs were tired. I'm still out of shape so its not like I can run much farther than before but I'm noticing that difference.

If you have tests that show reduced lung capacity and a compressed heart, then I think you should try to find a doctor who has experience with pectus excavatum surgery. They can help explain the pros/cons of surgery better so you can make the decision for or against surgery.

I have more posts here if you're interested:
www.pectus.com/forums/9-pectus-journies/1284-nolij-s-journey

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Doctors not strongly advising for Surgery: How common? 1 month 3 weeks ago #8311

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dh66 wrote: The big thing the specialist impressed upon me yesterday was that improvements in stamina and endurance are really hard to quantify. I know enough about the complex workings of the human body to understand this.

Hope that helps.


Yes, thank you.
I am nowhere prepared to discuss medical things, still I had a background in scientifical studies, anatomy, dieting and sport, so I vaguely understand and imagine that PE is associated with MANY factors.
I know of a person whose symptoms where alleviated not by correcting his actual chest deformity (an asymmetrical Pectus Excavatum compressing and severly displacing his heart) but instead with a different surgery involving correcting the defect related to some blood vessel which was malfunctioning due to the strain on tissues caused by his heart being out of his "normal" proper place.

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Last edit: by Simba.

Doctors not strongly advising for Surgery: How common? 1 month 3 weeks ago #8312

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nolij wrote: I can understand some doctor's caution about surgery because surgery isn't guaranteed to fix the physical problems but it can definitely help. My lung capacity tests before surgery said I had about 80% the expected lung capacity of somebody my size. I'm in the 90% range now. My chest isn't perfectly flat now either but its way flatter than it was before. I'd still be self conscious to take my shirt off at the beach but at least the thought isn't horrifying anymore. The doctor thought my heart rate would go down after surgery seems how it wouldn't be squished anymore but it hasn't gone down yet. There are also some horror stories in these forums about people who had the surgery but were in nothing but pain and had to have the bars removed or who had their chests relapse years after a successful surgery.


Yes, I try not to think about worst cases:
I may die in my kitchen or remain maimed in a car accident .
Also: forums have a tendency to ALWAYS group problematic cases together since people goes on forum mostly if they're in need of help and this conglomeration of bad cases can easily create a perception bubble where "oh my god, every BMW car is shit" or "omg every ravitch operation gives you a floating sternum!".
We must try to take things with a grain of salt.

I didn't notice much of a lung improvement for awhile after surgery but the past month or two I've started to notice that my legs will get tired before I run out of breathe.

You are not the first nor you are among few who described me the very same thing!

That was a strange experience for me because I've always had to stop jogging because I couldn't breathe and not because my legs were tired.

I've definately heard of this many times before. Still, no surgeon told me "you are going to achieve a way better tolerance to fatigue!"

If you have tests that show reduced lung capacity and a compressed heart, then I think you should try to find a doctor who has experience with pectus excavatum surgery. They can help explain the pros/cons of surgery better so you can make the decision for or against surgery.

I have more posts here if you're interested:
www.pectus.com/forums/9-pectus-journies/1284-nolij-s-journey


Thank you so much.

Yes I do have a compressed heart (and, maybe luckily?, it's slightly displaced).
I've always had lung problems of many different kinds, including a slight deficit in expiration (an obstruction of some sort) even in those rare months when I didn't have any kind of infection.
I was an Opera Singer for a certain time and had to stop due to many health problems, those related to lungs being part of the picture. Also: when I was very young through many years of excercising I developed a very powerful expiration pressure (like over 150% of the expected value), and I built a BIG thorax, still my lungs capacity was less than what was expected in a normal subject, doctor telling me "you should have at least the expected 100% score, maybe I would expect a 140 or even 150% score from your specific case, while it's only 80% and that is strange because it doesn't line up to your physical situation" (she seemed to totally disregard the fact that I had pectus, though).

My heart definately has something wrong (it hurts a lot) but I don't know what because my exertion fraction is 70% (normal) but there is obviously something wrong (my heart rate is slowly but relentlessly growing... I had almost achieved a very slow heart rate through many years of hard work and I had roughly 49bpm but in the last 9 years it went up to almost 78bpm at rest...)

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Last edit: by Simba.

Doctors not strongly advising for Surgery: How common? 1 month 3 weeks ago #8313

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Anyway the second pectus expert who saw me told me to repeat every cardiac and pulmonary test in different manners, under stress and maybe looking to define every single value in depth.

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Doctors not strongly advising for Surgery: How common? 1 month 1 week ago #8827

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Simba

Excavatum compressing and severly displacing his heart) but instead with a different surgery involving correcting the defect related to some blood vessel which was malfunctioning due to the strain on tissues caused by his heart being out of his "normal" proper place.

That's a very accurate depiction of how I would imagine a displaced heart caused be PE would cause symptoms and could be relieved. Small Incision Sternoplasty (SIS) could certainly fix the physical appearance of PE in me, but it might only have a limited effected on endurance. I imagine my heart, lungs and stomach etc., have shaped themselves to function around the defect and may not revert fully to their original position naturally. Interesting!

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Doctors not strongly advising for Surgery: How common? 3 weeks 2 days ago #8880

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I'm finishing certain medical examinations a surgeon prescribed me and I'm hoping I find out when I will be having surgery.

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