Pretty much the only physician experts on pectus deformities are thoracic surgeons who personally are experienced in performing the surgeries. That's who a prospective patient needs to see. I am a physician with a form of pectus excavatum, and I recall almost no mention of the condition in medical school. Because some people with mild deformities have little or no cardiopulmonary problems early in life, many physicians buy into the myth that it is merely a cosmetic issue, but it is my belief that that's false in most cases. When one is young and has a flexible rib cage, symptoms can be minimal or absent, but, later in life, when the rib cage stiffens and the thoracic spine naturally becomes more kyphotic due to loss in disc height, many patients (myself included) exhibit increasing cardiopulmonary compression and symptoms. By the time that happens, I believe many physicians attribute the symptoms to other, more common, conditions, such as coronary artery disease, so the connection is never made to the true cause and the patient never receives proper treatment. Even as a physician, I encountered much skepticism and resistance from my cardiologist (well, former cardiologist) to the concept, so I'm sure it would be even more difficult for a non-physician to receive the care they need for their pectus deformity.
You did a great job telling your story! My pediatrician told myself & my parents not to worry about my Pectus because when my breasts develop no one would notice the deformity 😑 I ended up finding out that my Pectus was severe at 41 yrs old. Until then I had no explanation or support as to why I suffered such severe cardiopulmonary symptoms, digestive issues, & chronic pain my whole life. Doctors constantly dismissed it as anxiety! I lost my job & my whole life fell apart when I lost my medical benefits. I finally had a Modified Ravitch procedure at the Cleveland Clinic in July of this year at 44 years old. It was a painful journey both physically & mentally but the relief I have now that my heart is properly functioning is incredible! The medical community is uninformed & biased when it comes to Pectus Excavatum. Thank you for sharing your story & spreading advocacy especially for female patients! ❤️🩹
Allison thank you SO MUCH for this video. I don’t know exactly how I stumbled across this, but when I first saw it I was experiencing the same symptoms with only a “mild” PE diagnosis and was floored at how similar your experience had been to mine. Multiple physicians telling me it was cosmetic, same weird symptoms getting brushed off, no real tests being done, everything. It literally sent me down a rabbit hole of learning about PE and after MONTHS of trying to get evaluated I finally got my CT scan back yesterday. My Haller is 4.9 (and I’m 22F!) So weirdly similar. My dent is wide and asymmetrical so I’m not sure how well Nuss would work for me but I am so relieved to finally have answers. Thanks again.
Hello Allison❤ I have the same condition as you and let me tell you, it sounded like i was listening to myself. My condition is more on the severe side, i experienced all the symptoms you did except (thank God) stomach issues. I was also surprised at how little doctors know about this condition, especially in women. I've had shortness of breath, dizziness, I spent years living in exhaustion because of my heart and lungs being compromised. Ive been told my whole life ive been healthy, my heart and lungs sound fine and theres nothing wrong with me. Ive done a lot of physical activity and streching since then and things have gotten a lot better. I have a new docter now and funny enough from all the research ive done im educating her now! Im so glad i finally found another women with the sane condition. From my personal experience i think it effects women more than men, i wish there was more research put into this condition. I hope you see this!
I also found another lady, her name Sara Z. Listening to her, you and of course my own condition truly makes me think pectus effects women more even in more minor cases.
Thank you for making this video. I wasn’t aware about this condition until a few weeks ago. My son was referred by his pediatrician to a specialist where we will find out if he will need surgery.
Thanks for sharing your pectus story. I'm 33 now and I need a professional surgical team. I really want to get relief from this cardio situation. Actually I'm totally stressed about my situation
Hi Allison! Thanks so much for sharing your journey with PE. Wondering how you are doing now. Will you do another follow up video to gives us an update? Thanks!
I'm 48, born with Gastroschis and have severe pectus excavatum ( HI 3,8) and fysical problems. After speeking with different thorax chirurgians, I decided to do nothing and live with it because the outcome at my age is to unsure.
Normal doctors suck with these things , I had it had surgery doctor ignored it forever . Had lung inflammation (off a stupid decision I made ) went to hospital totally unrelated to Pectus . A DAMN RESIDENT LISTENED TO MY CONCERNS and recommended me tests and sent me referrals Same day . Out of the 17 years I went with my normal doctor one random guy helped in in less than 30 min lol .
Hello freind,i am glad that your doctor at PENN adressed your problem and you are recovering well.Can you tell me who was your sergeon at PENN?Thank you.
Also, the doctors that told you the severity was minor, could have been right. Pectus excavatum typically gets worse during adolescence so when you went to the doctor, the severity might have been milder, and after the years it got worse.
Actually the lack of attention on females' pectus excavatum is because females rarely have pectus over boys. Boys are the majority of people with pectus excavatum so nothing major was done for females
Well the point of my story is I went to several doctors who weren't informed enough on pectus excavatum to understand that was the cause of my problems. Better advice might be to keep trying new doctors until one can find the cause of your problem, in my case only a thoracic surgeon could truly understand my problem.
My haller index was 10.8 so glad I got the surgery!
Pretty much the only physician experts on pectus deformities are thoracic surgeons who personally are experienced in performing the surgeries. That's who a prospective patient needs to see. I am a physician with a form of pectus excavatum, and I recall almost no mention of the condition in medical school. Because some people with mild deformities have little or no cardiopulmonary problems early in life, many physicians buy into the myth that it is merely a cosmetic issue, but it is my belief that that's false in most cases. When one is young and has a flexible rib cage, symptoms can be minimal or absent, but, later in life, when the rib cage stiffens and the thoracic spine naturally becomes more kyphotic due to loss in disc height, many patients (myself included) exhibit increasing cardiopulmonary compression and symptoms. By the time that happens, I believe many physicians attribute the symptoms to other, more common, conditions, such as coronary artery disease, so the connection is never made to the true cause and the patient never receives proper treatment. Even as a physician, I encountered much skepticism and resistance from my cardiologist (well, former cardiologist) to the concept, so I'm sure it would be even more difficult for a non-physician to receive the care they need for their pectus deformity.
You did a great job telling your story! My pediatrician told myself & my parents not to worry about my Pectus because when my breasts develop no one would notice the deformity 😑 I ended up finding out that my Pectus was severe at 41 yrs old. Until then I had no explanation or support as to why I suffered such severe cardiopulmonary symptoms, digestive issues, & chronic pain my whole life. Doctors constantly dismissed it as anxiety! I lost my job & my whole life fell apart when I lost my medical benefits. I finally had a Modified Ravitch procedure at the Cleveland Clinic in July of this year at 44 years old. It was a painful journey both physically & mentally but the relief I have now that my heart is properly functioning is incredible! The medical community is uninformed & biased when it comes to Pectus Excavatum. Thank you for sharing your story & spreading advocacy especially for female patients! ❤️🩹
I’m late to the party
How are you doing since surgery with dr Raymond?
Thank you for sharing your pectus story
Allison thank you SO MUCH for this video. I don’t know exactly how I stumbled across this, but when I first saw it I was experiencing the same symptoms with only a “mild” PE diagnosis and was floored at how similar your experience had been to mine. Multiple physicians telling me it was cosmetic, same weird symptoms getting brushed off, no real tests being done, everything. It literally sent me down a rabbit hole of learning about PE and after MONTHS of trying to get evaluated I finally got my CT scan back yesterday. My Haller is 4.9 (and I’m 22F!) So weirdly similar. My dent is wide and asymmetrical so I’m not sure how well Nuss would work for me but I am so relieved to finally have answers. Thanks again.
Hello Allison❤ I have the same condition as you and let me tell you, it sounded like i was listening to myself. My condition is more on the severe side, i experienced all the symptoms you did except (thank God) stomach issues. I was also surprised at how little doctors know about this condition, especially in women. I've had shortness of breath, dizziness, I spent years living in exhaustion because of my heart and lungs being compromised. Ive been told my whole life ive been healthy, my heart and lungs sound fine and theres nothing wrong with me. Ive done a lot of physical activity and streching since then and things have gotten a lot better. I have a new docter now and funny enough from all the research ive done im educating her now! Im so glad i finally found another women with the sane condition. From my personal experience i think it effects women more than men, i wish there was more research put into this condition. I hope you see this!
I also found another lady, her name Sara Z. Listening to her, you and of course my own condition truly makes me think pectus effects women more even in more minor cases.
Thanks for sharing your story with me, Hannah. I'm glad you know about your condition now and understand what has been causing all this pain :(
Thank you for making this video. I wasn’t aware about this condition until a few weeks ago. My son was referred by his pediatrician to a specialist where we will find out if he will need surgery.
Thanks for sharing your pectus story. I'm 33 now and I need a professional surgical team. I really want to get relief from this cardio situation. Actually I'm totally stressed about my situation
What’s your situation exactly?
Hi Allison! Thanks so much for sharing your journey with PE. Wondering how you are doing now. Will you do another follow up video to gives us an update? Thanks!
I'm 48, born with Gastroschis and have severe pectus excavatum ( HI 3,8) and fysical problems. After speeking with different thorax chirurgians, I decided to do nothing and live with it because the outcome at my age is to unsure.
Normal doctors suck with these things , I had it had surgery doctor ignored it forever . Had lung inflammation (off a stupid decision I made ) went to hospital totally unrelated to Pectus . A DAMN RESIDENT LISTENED TO MY CONCERNS and recommended me tests and sent me referrals Same day . Out of the 17 years I went with my normal doctor one random guy helped in in less than 30 min lol .
Hello freind,i am glad that your doctor at PENN adressed your problem and you are recovering well.Can you tell me who was your sergeon at PENN?Thank you.
Dr Sunil Singhal
You are right I can agree most doctors aren’t educated about this which sucks :/
Also, the doctors that told you the severity was minor, could have been right. Pectus excavatum typically gets worse during adolescence so when you went to the doctor, the severity might have been milder, and after the years it got worse.
of course they did, because it is easier and cheaper for them to just say "its cosmetic".
Actually the lack of attention on females' pectus excavatum is because females rarely have pectus over boys. Boys are the majority of people with pectus excavatum so nothing major was done for females
I think actually our breasts hide it pretty well. I believe it’s just over looked in females.
So next time you feel something's not right, just go to the doctor.
Well the point of my story is I went to several doctors who weren't informed enough on pectus excavatum to understand that was the cause of my problems. Better advice might be to keep trying new doctors until one can find the cause of your problem, in my case only a thoracic surgeon could truly understand my problem.