Sunken breastbone?

[POTSparent]

Once upon a time, I had a doctor mention that a higher percentage of the general population that had at least a mildly sunken breastbone (Pectus excavatum) were dysautonomic. That is, he considered my daughter's mildly sunken breastbone as an indicator (mitral valve prolapse, chest pains, exercise intolerance, dizziness). Thus, this poll. How many here have this physical characteristic?

[beala]

potsparent

my son sunken chestbone happened after a biking accident many years ago ~

[POTSparent]

One web site on pectus excavatum (PE), or simply sunken breastbone, said:

"As it progresses, PE can result in dramatically decreased exertion tolerance. Some notice that their stamina just isn't quite what it used to be. For others, even walking down the street becomes impossible without a rest stop. Any exertion may bring on chest discomfort and heart pounding, palpitations, cold sweats, shortness of breath, dizziness and great fatigue."

Symptoms sound familiar? Makes one wonder, which came first, the chicken or the egg? Or in this case, the POTS or the PE?

[Gena]

I never noticed that I had a mild sunken breastbone until I was dx'd with POTS last year. My doctor at the Birminham Center for Dysautonomia and MVP also mentioned that sunken breastbone was also more common in patients with MVP/POTs. I thought it was just a harmless, physical characteristic. I didn't know it could actually cause any symptoms or progressively worsen? I get bad chest pains frequently.

[geneva]

My son inherited a sunken breastbone from his grandfather but neither have/had symptoms of POTS. I don't have. Interesting information as this is the first time I have heard of a connection.

[Jersey Girl]

VERY INTERESTING! My mother and my brother and my sister have pectus excavatum, but I have POTS and they don't..No tradebacks I'm afraid. Martha

[Michelle Sawicki]

It makes sense that pectus excavatum might be seen in those with dysautonomia. It can occur in those with Ehlers-Danlos syndrome, and some with dysautonomia also have EDS. See:

http://www.cincinnatichildrens.org/health/...s-excavatum.htm

Michelle

[Guest tearose]

I don't know whether I am to address this with the doctor or not. I have a very pronounced sunken chest. (I think women hide it easier because of their anatomy and it gives us a very small waist) It is a common feature in the italian side of my family that I inherited. Although this is never discussed, it is always noted my radiologists when they do my CT's or X-rays...compression of ribs on heart during some maneuver. Should I follow up on this? I guess I figured I've managed all my life to breathe in spite of it so what is the use in addressing it now? And yes, I have MVP with some leakage seen on occasion. Oh, well maybe it will help to ask.

...one more thing to deal with...tearose

[dakota]

My daughter had surgery for severe pectus excavatum. It was the surgery, and subsequent repair surgery when the bar became detached and had to be reattached, that triggered her POTS.

As an aside, they are currently doing trials on using magnets to pull the sternum out instead of inserting a bar in the chest.

[Mytwogirlsrox]

Dakota, is it possible your daughter has EDs? I just read what another poster said about PE being common with EDS

[dakota]

Mytwogirlsrox -- my daughter was checked by Dr. Francomano for EDS. Although she had many things associated with EDS, she did not meet the criteria. Dr. Francomano felt that she had MASS phenotype, which is a connective tissue disorder with similar features to Marfan syndrome. I believe that it is the connective tissue disorder that is causing her POTS. Whether she would have eventually gotten it had she not had surgery, we'll never know.

I am very glad that with all my daughter has gone through so far with POTS, she is still glad that she had the surgery for pectus. As she got older, her ability to breathe was diminishing, really only noticeable with exercise. Her pediatrician had said "oh, it's just a cosmetic issue" but when I took her to the surgeon for an examination, he said it was a severe case. When the surgeon measured her, she had one inch of room between her sternum and her back. One of the main things I have learned through all of this is to listen to my instincts and not believe everything a doctor tells you. Get a second opinion.

[Millerla]

Actually, my breastbone is very, very pronounced.(I once had a guy come up behind me and start rubbing my back ((this would be creepier if I didn't know his personality)) and all of a sudden he said "holy cow your bone is huge!) Then again, I'm underweight and my whole family has bones that stick out, because my shoulder blades also stick out a lot. But my brother, who is very healthy and strong, had ribs that stick out and shoulder blades that do as well.

So yeah, I definitely do not have a sunken breastbone.

[Albrown23]

I was born with pectus excavatum and had it repaired in 2005. I'm not sure if my POTS is related to that or not. My lung capacity was only at 30% pre-op so I'm sure my heart paid a price too.

[Albrown23]

My daughter had surgery for severe pectus excavatum. It was the surgery, and subsequent repair surgery when the bar became detached and had to be reattached, that triggered her POTS.

As an aside, they are currently doing trials on using magnets to pull the sternum out instead of inserting a bar in the chest.

My bar came loose as well. It was only in for 4 months before the tie broke and it shifted to left. Actually, it was poking through my ribs and I had a painful lump that made me go to the ER.

[dakota]

Albrown23 -- I'm sorry to hear of your experience with the bar. From your signature, it looks like the bar was removed at the time when the tie broke, is that right? If so, was the 4 months it was in any help? My daughter's was just reattached on the one side and left in for another year. It had fallen behind her ribs, so I guess she was lucky that it didn't poke through as yours did.

[kelcee333]

this is interesting as my illness started after a toboganning accident where I had a strong impact to the right side of my breastbone. I've been 4 years telling doctors that's what made me sick, and they keep telling me they can't do anything about it. Has anyone heard of a way that these chest injuries can be repaired?

[Piperita]

Hello, i am trying to help a friend' s daughter who has PE and POTS and disautonomic syndrome. Can someone give me a center to send them? She cannot stand up.. She is always in bed because of tachicardia when just sitting.. Now she is not eating.. Please help us with a good center or the name of a doctor to contact. Thanks, Elena. 

[Pistol]

@Piperita - have you checked our physician list? Click the physicians tab on the top banner of this site. There are several major autonomic centers here in the US but all have extended waiting lists for new patients. Most major medical centers in each state have physicians that treat dysautonomia, whether they are cardiologists, neurologists or other specialists. With her tachycardia she may have seen a cardiologist already.

[Piperita]

Thanks a lot, i will check.