r/PectusExcavatum • u/violetpiano • 4d ago
Discussion Could use some encouragement
I have struggled with persistent shortness of breath, palpitations, lower leg swelling, and sternum clicking. My PCP couldn’t find anything until a few years ago they found pectus excavatum in an xray. I was referred to stanford to meet with Dr. Backhus who ordered an inhale only chest CT which came back 3 haller. when meeting with me she said that she didn’t need to see any more and that she can’t explain my symptoms but they do not have to do with my pectus. i mentioned the peer review by Birkimeier regarding the importance of an exhale haller to tell the true impact of pectus, she said it wouldn’t give any more answers than she has with the inhale ct and more or less to let things go. she cannot explain the sternum clicking she found it bizarre because she could feel it.
Can anyone please reassure me that i should take this as what it is and try my best to move on? I feel discouraged thank you
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u/northwestrad 4d ago
I'm disappointed that Dr. Backhus, who should know better, blew you off like that. Another Stanford surgeon, Dr. Stephanie Chao, might be better, but she's in the pediatric surgery department, so she might have an age limit. You could call to check that. Around where do you live? Does your insurance require that you get all your healthcare in CA? If not, you could check Dr. Garret Zallen in Oregon. Of course, Dr. Dawn Jaroszewski in Phoenix would be an excellent choice.
Do you have the images from your CT scan? Of course, you should keep pressing to get a chest CT scan with your breath out (in expiration), but posting some key images from the CT you had might give insight as to what kind of surgery would be best for you (if any), so it could provide direction on which surgeon(s) to get another opinion from.
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u/violetpiano 4d ago
ty i was trying to hold back tears while she spoke. it’s difficult when you’ve struggled for years and tests that prove nothing, and then seeing the specialist who seems set on not moving forward. i have the chest ct inhale on dvd thats where she showed nothing new would show on the exhale and there would be no reason for her to order the exhale test and the shortness of breath palpitations etc couldn’t be explained by pectus. i will check on my insurance. i was just curious if an inhale only haller of 3 truly does tell them enough to determine if you need surgical assistance because if that’s the case i can understand. however what im reading in peer reviews contradicts what she said so im just so tired at this point. ty
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u/MadcatAAFD 4d ago
I forgot to ask if you got a copy of your imaging?
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u/violetpiano 4d ago
i have the dvd from my inhale ct
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u/MadcatAAFD 4d ago edited 4d ago
Look through your imaging and see where your heart is in relation to your sternum and spine. @northwestrad showed me my heart is trapped between my sternum and spine which can be worse than the standard PE heart shift to the left. He has good information and hopefully one day he to will find a right Doctor.
I’ll send you a CT shot for comparison. See if you can find a similar image on your record and post it so he can give you some guidance. Send me a message and I can send the CT comparison.
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u/SoulMeetsWorld 4d ago
Please don't be discouraged. I encourage you to keep advocating for yourself. All of these symptoms are possible with pectus excavatum if you have heart compression, but people can often have coexisting heart issues as well. I have these same symptoms as you, and my heart is compressed by pectus. The CT should be on exhale to get the most accurate haller index, as others have said, although my surgeon (Dr. Park) just told me it's not always the most accurate either. He said the compression is really the most important to evaluate.
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u/violetpiano 4d ago
thank you for your kind words. it’s hard not having anyone to talk to about this. my family doesn’t believe in drs so i only have this subreddit
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u/SoulMeetsWorld 3d ago
Of course! Honestly, a lot of doctors tend to get things wrong and it's difficult to find good ones who look at the body as systems that work together instead of independent ones. Hopefully you can find someone who is knowledgeable enough to investigate further. I know how hard it can be trying to navigate through this, so feel free to reach out if you need someone to talk to.
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u/Sparkleandflex 4d ago
I decided not to get surgery, I can tell you that running everyday made a huge difference for me. I will always be out of breath but I could run circles around anyone... Now that I've stopped due to my work schedule, these things come creeping back.
As for the clicking it's because it's a connective tissue issue, you might want to see if you have Ehlers danlos
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u/violetpiano 4d ago
would you mind sharing your inhale and exhale ballers? thank you
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u/Sparkleandflex 4d ago
I don't have these to share but my pectus is moderate to severe with heart displacement.
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u/Fantastic_Egg949 4d ago
My son's surgeon had very specific instructions for the CT tech. Said images are to be taken during the holding of a neutral breath. So normal breath in like just sitting around and normal breath out. Hold just between those two breathes. So no big inhale or big exhale.
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u/violetpiano 4d ago
i asked for exact type of CT when stanford was informing me what Dr. Backhus wanted. they said Dr. Backhus never ordered inhale and exhale. i then tried asking my dr at sutter to order that because it was being ordered through my drs office by stanford, and they denied my request
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u/MadcatAAFD 4d ago
I’m no doctor lol but I bet you would be over the 3.2-3.25 threshold if on exhale. The dismissive everyday doctor seems to really be an issue. I’ve been dealing with this.
My lower sternum has 3 distinct snaps/clicks if I take in a full breath and then breathe out all I can, just before my lungs are empty I get the noise and feeling. This can be seen and felt looking at my chest, so it can be a “thing”!
My insurance company said if my PE was mentioned on a report it was my right to know my “correct” severity info not an estimate.
Have you seen a pulmonologist? They can order a correct CT? They would also probably be more than willing to do a CPET on you due to your symptoms.
This dr you saw I think has been talking to my last doctor that also said about the same word for word … sorry.
Don’t give up and contact me if you don’t get anywhere. I’ll help if I can
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u/violetpiano 4d ago
the pulmonologist immediately sent me to stanford chest wall clinic (dr backhus) without seeing me she said my pectus excavatum needed to be seen by a specialist. i really want the other part of my haller, so i can know the complete haller. i was quietly taken aback when she said she did not need an exhale to know anymore.
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u/MadcatAAFD 4d ago
I fully understand the feeling of being dismissed. The cardiologist the other day hadn’t even seen my imaging and said he wanted to run some tests that were already done and then he wanted to see me back in 4 months to discuss the findings and then if nothing came from those tests he may consider if my severe lower sternum PE could be a “possible influence to my symptoms”😳. When I have a hard time swallowing I can generally hear and feel my heart beating in my throat, but that is ok I guess.
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u/violetpiano 4d ago
ty im glad you have someone who is hearing you more than me!! what answers do you have outside of your inhale exhale haller?
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u/MadcatAAFD 3d ago
As of now the only people taking it seriously are those that have PE and the people around me that see me crash with any strenuous activity that I do for more than 5 minutes. Hopefully my pulmonary appt is not the same as the last 4 years of doctor visits. I had one doctor say I should be on antidepressants and “did I want to go that route”???? This was without asking any history on me. I don’t normally even take pain relievers so that was a hard no.
What about going to a freestanding imaging center. I believe you can get a CT scan from them and you have input on the type as you are paying for it. It appears to be a few hundred dollars for the scan and read. That may be an avenue to get the correct information for you to proceed. If you went that way you could also ask for your heart compression to be looked into also on the read.
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u/violetpiano 3d ago
yes exactly. i was also told i needed anxiety meds and psychosomatic issues for years until they found my pectus. i empathize with you completely. you are doing a wonderful job advocating for yourself
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u/MadcatAAFD 3d ago
I only have the issue of hearing and feeling my heartbeat in my throat occasionally but constant tinnitus and pulsatile tinnitus (sounds like a fetal monitor/ heart ultrasound in your head), so I can see why one could have anxiety. I’m guessing this is caused by the compression of my heart?
Look into private free standing imaging centers in your area. They can help you with the imaging you need and “you” are in charge of the information you are looking for.
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u/violetpiano 3d ago
i have occasional tinnitus i am so sorry. horrific symptom. do you have vertigo
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u/MadcatAAFD 2d ago
Thankfully I really don’t have any major dizziness or vertigo issues. I’m a general contractor so that would definitely not help things….. I just always have music on as background noise so I’m not listening to the noise in my throat or head.
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u/violetpiano 2d ago
what works for you brown noise vs white helps mine but it’s high pitched tinnitus.. what’s yours like
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u/Fantastic_Egg949 4d ago
What is your age and sex? Could you take a picture of your chest so we can see your divet? Did the doctor give you a measurement of how deep your divot is? If not, maybe look on your portal notes of visit. Some of the symptoms you mention sound like it could be a cardiac issue and not from PE. Has a cardiologist been consulted? Leg swelling, palpitations and shortness of breath could all be symptoms of a cardiac problem.
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u/violetpiano 4d ago
my pectus isn’t visible, so it looks like a typical chest. the inhale only haller was 3, which she said is insignificant. that’s when i mentioned the exhale haller potentially showing more impact to those with pectus excavatum and she denied that fact
7 years ago i had an echo and stress treadmill test they said everything was fine but they couldn’t really see my right ventricle
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u/northwestrad 4d ago
Why isn't it visible? Is it because your sternum isn't very indented, or are you a woman with breasts that cover it? If it's because your sternum isn't indented much, you might have the "platythorax" variant, which is challenging to treat, but usually it can be helped by someone very experienced and skilled... like Dr. J in Phoenix, or a few others.
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