Marfan Syndrome

Dave

Dave

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So back in 2004 I posted that I had been diagnosed with Marfan Syndrome:

http://www.rage3d.com/board/showthread.php?t=33787876

Rather than resurrecting the thread, heres an update:

So went to the doc's last month with a insane headache. Doc treated that and asked me when I last visited the doctors office :bleh:. I hadnt been since 2004. Doc scheduled me to see the eye doc, and to check up on the marfans (Echocardiogram of the heart and xray). Aorta has grown .4mm since last visit, now at 42mm. Good news is my eyes are fine, no detached lenses. Bad news is im now on Beta Blockers. Basically it slows down the rate of aorta growth. What sucks is the side effect of lowering blood pressure. Slowly getting used to it but it makes me feel groggy. Doc wants to put me on another drug that strengthens the aorta walls but wants to wait 6 months so I can get used to the beta blockers because this other drug also lowers blood pressure.

I have another appointment in September with the head of Cardiology for the Clevleand Clinic. He's also a marfan specialist. Basically for a second opinion and to see if surgery is a possibility...

Just thought I would keep you guys up to date on whats goin on. Plus I dont really share this with anyone outside family. It's hard to discuss with friends who really dont understand/give a ****...
 
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Dave said:
Just thought I would keep you guys up to date on whats goin on. Plus I dont really share this with anyone outside family. It's hard to discuss with friends who really dont understand/give a ****...
Click to expand...

Then they aren't really your friends.

Hang tough man.
 
That sucks, how tall are you? Marfan syndrom usually affects abnormally tall people and is apparently rare (but not impossible) in those who are normal height.
 
xCLAVEx said:
That sucks, how tall are you? Marfan syndrom usually affects abnormally tall people and is apparently rare (but not impossible) in those who are normal height.
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6'4" 180lb's.

Guess looking on the brightside I'll be switching jobs at my employer next month. Going 3rd shift which means I get health insurance/dental through employer and dont have to pay for it myself.
 
jimmyboy said:
If you had surgery, what surgery, and what is it supposed to accomplish?
Click to expand...

http://my.clevelandclinic.org/heart/disorders/aorta_marfan/marfansurgery.aspx

Aorta surgery
About 40% of Marfan syndrome patients will die immediately if aortic dissection occurs. The risk of death is between 1% and 3% per hour after the dissection event. Even with emergency surgery, the risk of death is between 10% and 20%. The goal is to perform surgery prior to the dissection occurring because:

Early results are better (better than 98% survival)
Long-term life expectancy is better.
The normal aorta measures about 1 inch (2.54 centimeters). When the aorta diameter is more than 4.7 centimeters, or if the aorta is enlarging at a rapid pace, surgery is recommended.

The decision to have surgery is based on the following:

Size of the aorta
Expected normal size of the aorta
Rate of aortic growth
Age
Height
Gender
Family history of aortic dissection
During non-emergency aorta surgery, the survival rate is greater than 98 percent.

Surgery involves a replacement of the dilated portion of the aorta with a graft. This can involve two techniques:

Traditional method: replace the aorta with a graft and the aortic valve with a mechanical valve
Valve sparing method: replace the aorta with a tube graft and re-implant the native valve

Valve repair or replacement
A leaky aortic or mitral valve (regurgitation) resulting in changes in the left ventricle (left lower chamber of the heart, heart's major pumping chamber) or heart failure, require surgery to repair or replace the valve.

The mitral valve can be repaired or replaced. This can be done with traditional or minimally invasive techniques.
 
My aunt has this; she's 6 ft tall, and she suffers from really frequent debilitating migranes. I sincerely hope this affliction doesn't get the best of you.
 
Dave said:
http://my.clevelandclinic.org/heart/disorders/aorta_marfan/marfansurgery.aspx

Aorta surgery
About 40% of Marfan syndrome patients will die immediately if aortic dissection occurs. The risk of death is between 1% and 3% per hour after the dissection event. Even with emergency surgery, the risk of death is between 10% and 20%. The goal is to perform surgery prior to the dissection occurring because:

Early results are better (better than 98% survival)
Long-term life expectancy is better.
The normal aorta measures about 1 inch (2.54 centimeters). When the aorta diameter is more than 4.7 centimeters, or if the aorta is enlarging at a rapid pace, surgery is recommended.

The decision to have surgery is based on the following:

Size of the aorta
Expected normal size of the aorta
Rate of aortic growth
Age
Height
Gender
Family history of aortic dissection
During non-emergency aorta surgery, the survival rate is greater than 98 percent.

Surgery involves a replacement of the dilated portion of the aorta with a graft. This can involve two techniques:

Traditional method: replace the aorta with a graft and the aortic valve with a mechanical valve
Valve sparing method: replace the aorta with a tube graft and re-implant the native valve

Valve repair or replacement
A leaky aortic or mitral valve (regurgitation) resulting in changes in the left ventricle (left lower chamber of the heart, heart's major pumping chamber) or heart failure, require surgery to repair or replace the valve.

The mitral valve can be repaired or replaced. This can be done with traditional or minimally invasive techniques.
Click to expand...
I know my company makes various aortic repair devices, for minimally invasive procedures. They have excellent results. But I don't know much else except that I think they specialize in AAA problems (lower aortic abdominal anuerisms).

I hope the very best for you, whatever road you take. :up:
 
In all seriousness, stay well man.

I am not sure if we are allowed good natured jokes about this? I wanted to joke about Rage3D mods being found in the 'discount' bin at the hospital as babies, and I also wanted to make a joke about you needing to eat lots of cheeseburgers and fatty food to raise your blood pressure, like most Americans. If that isn't appropriate, feel free to edit/delete the post.
 
Bigger aorta = more blood flow.
More blood flow = bigger boner
Bigger boner = more womens knocking at your front door

1. Stop taking meds
2. Get huge boner
3. ...
4. die happy man?

:bleh:

Thats advice you can take to the bank.
 
sittal said:
In all seriousness, stay well man.

I am not sure if we are allowed good natured jokes about this? I wanted to joke about Rage3D mods being found in the 'discount' bin at the hospital as babies, and I also wanted to make a joke about you needing to eat lots of cheeseburgers and fatty food to raise your blood pressure, like most Americans. If that isn't appropriate, feel free to edit/delete the post.
Click to expand...

:bleh:

I'll keep my mouth shut on this one.

Hope you start to feeling better and not let this thorn in your side get the best of you.
 
sittal said:
In all seriousness, stay well man.

I am not sure if we are allowed good natured jokes about this? I wanted to joke about Rage3D mods being found in the 'discount' bin at the hospital as babies, and I also wanted to make a joke about you needing to eat lots of cheeseburgers and fatty food to raise your blood pressure, like most Americans. If that isn't appropriate, feel free to edit/delete the post.
Click to expand...

:lol:

Thanks for the well wishes all.
 
Sometimes I am glad to have health insurance lol.

Total bill $15,000~. Paid by insurance: $14,850. Total Due: $150
 
I once took some medication whose side effects included lowered blood pressure. After taking it for the first time, I went to a diner with my mom. Five minutes into the meal, I started feeling light headed. Then I stood up to go to the bathroom. Almost fell flat on my face :lol:

You should get used to it in short time, though. Best of wishes Dave Mod <3
 
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