Todd Williams

[gary47]

This is Gary--sometimes back Todd Williams left a story about a surgical technique that affected me--I have not been able to contact him -can anybody help?

 

[Rain]

Search function

Search function

Gary,

Did you try finding it through the 'search function'?

Is he the same Todd I was talking to about 'Marfan's syndrom'? If so I think I have his e-mail address.

Rain

[email protected]

 

[Hank]

Thanks Rain

Thanks Rain

Thanks for the info Rain - I knew someone knew it!

 

[merryreader]

Marfan Syndrome

Marfan Syndrome

Anyone out there also have marfan syndrome????? Would love to talk with some who knows what I'm going through.

 

[Rain]

Marfan's syndrome

Marfan's syndrome

Hello Merryreader,

Unfortunately, I know a lot about Marfan's syndrome.

Because I am a very tall, slender type lady, with heart problems.. my doctor had me go through about a million tests to see if I had Marfan's during my last pregnancy. They decided that I probably have a very mild form of it.

Then when my son's aorta dilated from 4.2 to 4.4 between his junior and senior year of high school he went through all the same tests. You know how they decide the degree to which you have it by how many of the characteristics you have? Well my Ry has just about all of them. Thank goodness he's been active all his life, a three sport athlete. So he is in excellent health other wise. I have a hard time getting him to take his beta blocker... he claims it makes him tired easier. He wrote his senior paper on Marfan's so he knows the risks.

When were you diagnosed with it?

Rain

 

[merryreader]

Re; Marfan Syndrome

Re; Marfan Syndrome

Hello Rain
I was diagnosed with Marf's in Jan of 1995. I knew of the quote "heart murrmer" since I was about 8 years old. Around christmas time in 1994 I started feeling real bad.. kept putting off going to the doctor, hubby finally had a fit and I went. Doc ran the usual tests and then asked when was the last time I had seen my cardiologist. I hadn't seen him since my second son was born almost 8 years before. The cardio ran the usual tests then wanted me to have a catherazation done. Well to make this long story short I needed surgery fast. Doc checked around and I ended up at the Cleveland Clinic in Ohio. On st patty's day I had my mitral valve & my aortic valve replaced with St Judes, and had the entire aorta wrapped in teflon.
As for the usual marf's characteristics, yes I have quite a few. I'm 6 feet tall and also on the slender side. I have very narrow fingers and feet [ though I wear a size 11]. I have a high pallette. I also have bad eyesight, I have been wearing glasses since I was a year old, though my retina has never detached. the optic nerve is very narrow. As I have gotten older I'm finding that my joints mainly my ankles and knees and growing weaker. I had 2 sons before I knew that I had Marf's. unfortunatly my oldest son also has marf's. He is now 18 years old and is 6' 7" tall and wears a size 17 shoe. He sees a cardio every six months so far so good. I too have trouble getting him to take his beta-blocker for the same reason, that your son said....makes me too sluggish he says. take care and hope to "chat" with you again
Merry