Marfan's Syndrome Question

[Creed3]

Hi Everyone!
I just had my 9 month old to the doc for her check-up. We started talking about what happened with me and my aorta and aortic valve. They said that I should have my daughter checked out by a cardio. It would be for precautionary reasons, she doesn't have any signs of any problems. Her doc wanted to know if anyone mentioned Marfan's Syndrome to me as being a possible reason for my problem. My docs just said there could have been a congenital weakness and possibly a connective tissue problem but that there was no way of telling for sure. All the docs say I do not have the appearance of someone with Marfan's, but I was wondering if there was anyone on this forum who has Marfan's. I am a short person, 5'2". I don't have long arms, fingers, legs etc....The only thing that would indicate Marfan's would be the aortic dissection/anurysm and the valve replacement. I was just curious as to what are some symptoms of Marfan's and can you have Marfan's when you have no other indications of it other than the aortic problem?

Thanks & Take Care!
Gail

 

[Ross]

You might want to send a Private message to DaveCv67. I believe he is diagnosed with Marfans, but he hasn't posted since September.

 

[Arlyss]

Regarding Marfan's Syndrome

Regarding Marfan's Syndrome

There is a National Marfan's Foundation. Here is their web site
http://www.mafan.org
While it may not be the Marfan syndrome, it is a good idea for any family where there has been aortic disease such as aneurysm or dissection to have all family members checked and monitored.
Hope that helps. Arlyss

 

[Rain]

Marfan's

Marfan's

Hello Gail,

There are many characteristics of Marfan?s syndrome, being tall and lanky is only one of them. Do a search... You?ll find a few threads on it. I?ll send you a list that the Marfan?s syndrome Foundation sent to my son when he was doing his senior paper on Marfan?s.

My cardiologist told me there is a place that tests for Marfan?s. He said the test is $4,000.00 We didn?t follow through with that test for my son... we didn?t need to, he has almost every characteristic. You can have a mild case of Marfan?s. You can also have a mild case that gets worse over time.

I have three children. One of them has Marfan?s. I had the other two visit my cardio too. I just wanted to hear him say they were okay. I think you?d feel better if you took the baby to a cardio and heard him tell you the same thing. It can drive you crazy worrying about it. I know when my kids were that age, especially the first one.. I was so paranoid. I don?t know how the poor kid got any sleep. lol I was constantly putting my hand on his back or my finger under his nose just to make sure he was breathing! And he was a very healthy baby. I don?t know what I?d have done if one of them actually had health problems.

Take care,
Rain

 

[Bunkenmeyer]

connective tissue disorders

connective tissue disorders

Marfan's is the most "indentified" and studied connective tissue disorder. The website referenced above is a great source of info. However, there are a whole family of related/similar connective tissue disorders that are more vague and less well understood. I have a host of very mild symptoms (e.g. loose ligaments, slight chest curvature, long fingers, toes) but definitely don't "look" like your typical marfan patient (I'm 5'11"). However, most importantly I do have a dilated aorta and will require surgery. You can get seen by a geneticist (or sometimes a cross-specialty team) that is familiar with Marfan's and they will do a full clinical work-up (they ask a lot of questions about family history, take body measurements, test flexibility etc.). They check off a list the type and number of symptoms you have and then compare it to the marfan diagnosis criteria. Some teaching hospitals have such teams or clinics, otherwise ask a cardiologist very familar with marfan's for a recomendation. Some have geneticists they work closely with regarding marfan's. In my case they agreed there was "some connective tissue disorder going on" but they determined it not to be Marfan's (which has very specific criteria). At the end of the day though, the recomendation was still to monitor my aorta and valve the same as you would for Marfan's. However, they are less agressive about operating if it is not classic marfan's (b/c you are less likely to dissect). One other related disorder is Ehlers Danlos. I have been advised that when (g-d willing) I have children they should be checked (at some point) for related conditions. I hope this is helpful.

 

[Creed3]

Thanks!

Thanks!

Hi!
I just want to thank everyone for all the information. I have made an appt. for my baby to be seen by a cardio. just to be safe. My oldest daughter has very mild congenital pulmonary stenosis as well as a very small atrial septal defect. She also has congenital cataracts that do not affect her vision in any way. All the docs and cardios do not think that her congenital problems are related to mine in any way, but they said there is no way of telling for sure. My cardio also said that they don't know why my aortic dissection/aneurysm occured. Possibly a congenital weakness or possibly a connective tissue problem. He said that maybe in about 5 or 10 yrs there may be some sort of diagnostic testing that can be done and he feels that my children and I should be tested when that is available. Other than that, there doesn't seem to be any indication of any sort of connective tissue disorder. I guess I will just have to wait and see what the future brings. Thank God that my problem was found and repaired. I just hope that my children have no connective tissue problems. A mother's worries never cease, do they?

Take Care!
Gail

 

[sylviayasgur]

hi gail!
i think that greggo also has marfan's... maybe email him?

anyway, my daughters' pediatrician (they are 15 and 18, but love this young woman) suggested that _although she has never heard a murmur on either of the girls_ i should run it by joey's cardiologist. i did and he suggested i have both girls checked just in case, since joey had a congenital bicuspid aortic valve. he felt that since it was congenital, it might be familial.
so, i had his partner check them out. they passed with flying colors, thank God. my younger daughter (who is a dancer) was sent for an echo because the sequence of her pulse (i think you are supposed to feel it in the ankle, neck and then the wrist??) was reversed. oh well.... doctor said it was just a fluke and that she's great.

i sleep better now that i know they are clear of this.
i agree, we just never seem to stop worrying..
please let us know how things go, ok?
stay well, sylvia

 

[Davidcv67]

Hi Gail what is the latest on this issue with the Marfans?...I have a variation of it. I changed my e-mail address so if you took Ross's advice and tried to get me you couldn't...I had to resign up with VR.com from Davecv67 to Davidcv67.

The CV67 stands for my old aircraft carrier I was on in the nvy the USS John F Kennedy.

Bye!

 

[Creed3]

Hi Dave!
The doctors don't really seem to be too concerned. All they say is that there is no test for them to do to determine if I or my children have a connective tissue disorder. They said possibly in a few years there will be a test available and that we should have it done. They just keep bringing up Marfan's because it effects the heart and valves. All of the doctor's I talk to say that I do not seem to fit the correct profile of someone with Marfan's but that you never know if it could be some variation of it or some other connective tissue disorder. Then they always follow up with that it could have just been a congenital weak spot in the aorta. My kids Pediatric Cardio told me that it is very possible that I will never know the exact cause. He said even if it was determined to be some sort of connective tissue disorder, that there really isn't that much you can do to prevent anything from happening. They just watch you closely and fix you up if something happens.

I always wondered what the CV67 stood for. I'm sure you had some very memorable moments on that aircraft carrier!!!

Take Care!
Gail

 

[Jennie]

Marfan Treatment at Mayo Clinic

Marfan Treatment at Mayo Clinic

http://www.mayoclinic.org/marfan-rst/

Thought I'd post this here - for your benefit and others that might be reading here. Mayo Clinic recently opened their new "Marfan Clinic" to treat folks with this syndrome. They've gathered a bunch of docs from the different arenas that are affected by this disorder. Some basic education stuff on this site, too. Hope things go well for you!

-Jennie