Aortic Coarctation ?

[lizannesmiles]

Alright... Two weeks ago I posted concerned after speaking with cardio that symptoms had increased and I was experiencing a decreased ability to exercise. Besides shortness of breath lightheaded and poor balance my legs would feel heavy and then my feet would progress from tingling toburning or tons of needles in my feet.
So I had a stress echo but determined I still have good heart function with bav and dilated ascending aorta was stable at 4.2 same size past couple of years.

I left relieved and frustrated because I still have the symptoms.. Idropped by cardio office and talked to the nurse and emphasized recent decreased capacity to exercise. She said she would visit with dr and get back to me .

This morning cardio expressed concern about possible coarcattion of the aorta and is recommending MRI.
so far whati have read about it does match my symptoms.. A little scared.. Any thoughts or information would be appreciated.

 

[malibu82]

Well I hope it is okay! I can't really give you any advice but wanted to know I'll be thinking of you. When is the MRI? I would want it sooner then later so you don't have to live with the anxiety of wondering!

 

[wxman]

As I understand it, aortic coarctation is sometimes a part of the bicuspid aortic valve problem along with a few other issues. I had surgery for the coarctation when I was 10 years old and then had my valve replaced with a St Jude mechanical when I was 50. It can cause decreased flow of oxygenated blood to the body...especially to the extremeties...hence the symptoms. It also causes an increased work load on the heart. Usually...the surgical procedure is to cut out the coarctation (narrowing) of the aorta and then sew to the two ends back together. The coarctation surgery brought me 40 more years of good health and my surgery was in 1963 when heart surgery was in its infancy.

 

[Lily]

Apparently, coarctations are kind of rare. There can be degrees of the narrowing. I don't want to needlessly scare you but it certainly can be a serious medical situation. I was never allowed to take physical education in school, considered at risk for sudden death. I don't recall if I had symptoms. The surgery was pretty painful, through the back. But the overall recovery was quicker than the valve replacement. Whether that was in part because of the difference of having surgery at 17 compared to 42 -- I'm not completely sure. Weight lifting was a no-no. Are you seeing doctors who have experience with coarctations?

Also, even those with repaired coarctations are apparently at risk for either another or more coarctations. I don't know how or why. But it's in the literature. The doctors sometimes check my bp in my arms and legs because, depending on their findings, they can keep an eye on the possible return of a coarctation situation. For larger (I think longer) coarctations, a dacron graft may be used during surgery; that's how mine was done.

Hoping this has been helpful and that all goes well for you. Please keep us posted and take care

 

[Allisoninoz]

I also had coarctation repair in 1979 Lily! I was 11. They said it wasn't bothering me then but would as I hit puberty so it was out with the narrow part, which was replaced with teflon. I don't remember it being a lot of fun - especially the stretching (physio) afterwards. I'd also had a patent ductus at age four so I have two impressive scars across my back. They are still sensitive today, especially on the side and around under the left breast. (I turn 42 tomorrow.) If people prod me in the left side unexpectedly they're lucky they don't get whacked in the head. Although my little girl gives me lovely gentle back rubs so it's not all bad
I don't know if they still do the surgery that way - but I suspect they would be a lot better at it now than in the 1960s and 1970s. I recovered quickly (as you do when you're a child).
Coarctation does often go with a bicupsid valve, which I also have and will need replaced some time in the next couple of years so then I'll have the scar down the front and have the trifecta. I"m in the waiting room. I hope you get some answers quickly. Waiting is horrible.

 

[Maryka]

An MRI is scary, but gives good information. I hope you can "Let go and let God" carry you through this time! You will be in my thoughts and prayers.

 

[lizannesmiles]

thank you! I can't imagine having to go through this as a child. CT scan today at 3:30. Didn't sleep a wink last night mostly because when I read about this it really explains my symptoms...

will have answers in the morning cardio said...

what I have read makes me think this is something I have probably had for a long time as it appears to be congenital. I have not read anything that would indicate adult onset. However statistics state les than 20% survival rate if unrepaired by age of 50. Since I will be 48 in two weeks discovery may be very timely.

For years I have been telling doctors my difficulties with exercise, bending over, any yoga stretch upside down is difficult to breathe.. symptoms have rapidly increased lately making basic exercise more difficult than before..

It is really nice to be able to talk about this here as I am not wanting to alarm my family how worried I am...

 

[Tass]

I was diagnosed BAV w/ regurg. last year and during a visit with my 2nd opinion doc, she mumbled something about coarc and did some listening/bp stuff and said, "yep, it's a coarc. wonder why the echo tech didn't look further for it?". This does explain why i've been complaining of cold legs/feet for 40 years! She said my body has compensated somewhat for it so she wasn't too concerned about an immediate fix.

It is a bit unnerving to read about it online as the references usually state patients don't survive an unrepaired coarc to this age.

Tass

 

[tobagotwo]

An MRI (or MRA) is a good test to have, as there is no radiation and nothing invasive. They will likely inject a marker dye, but that's pretty much it. I'm claustrophobic and have had full-length MRIs without any problem.

Best wishes,

 

[Lily]

I once read an older cardiac book that said the average lifespan for a child with a coarctation is 15 years. Horrified me.
Surely that's not the case now, or perhaps it's not the case with more evidence and information, in this age of medical advances? I don't know.

 

[lizannesmiles]

Reports from dr.'s office said clear on CT scan. Cardio says he is going over to location to view films himself to be sure. I am relieved but certainly confused as to source of health concerns. The question I ask myself is all of this because of stress? Maybe a life change is in order...