Marfan Syndrome

Riiight...remind me never to go on any wooden rollercoasters if I'm ever in whatever city you currently reside. Probably fornicated on all of them. Pervert.

:bleh:
 
vince-motorboat.gif
 
Just a small update:

Had my yearly Checkup yesterday. Did a Echocardiogram of my heart/aorta. No Change since last year :D. Doctor wants to move me to a 2 year checkup cycle. He is starting to lean to me not having marfans, or atleast if I do its a very mild case of it.

Cleveland Clinic has really stepped up with their test results and their mychart website. Allows me to see results at home. For those curious:

CLINICAL INFORMATION
MEASUREMENTS Measurements
  • Aorta(at leaflets - cm): 3.6
  • Left atrium(cm): 4.1
  • Left Ventricle ID(dia - cm):5.5
  • Left Ventricle ID(sys - cm):3.6
  • Intraventricle Septum(cm): 0.9
  • Post. Wall Thickness(cm): 0.8
  • Ejection Fraction(cm): 60
FINDINGS
  • LEFT VENTRICLE - The left ventricle is normal in size and systolic function. EF = 60 +/- 5%.
  • RIGHT VENTRICLE - The right ventricle is normal in size and systolic function.
  • LEFT ATRIUM/PULMONARY VEINS - The left atrium is normal. The left atrial cavity appears normal in size. The left atrial cavity area is 15.0 cm? during systole.
  • RIGHT ATRIUM/IVC/SVC - The right atrium is normal. The right atrial cavity area is 13.0 cm? during systole.
  • MITRAL VALVE - The mitral valve is normal. There is no mitral leaflet prolapse.There is trivial mitral regurgitation. The pulmonary venous pattern showed normal systolic flow.
  • TRICUSPID VALVE - The tricuspid valve is normal. There is trivial tricuspid regurgitation. Regurgitant velocity is 200.0 cm/s and estimated RV systolic pressure is 21 mm Hg.
  • AORTIC VALVE/LVOT - The aortic valve and left ventricular outflow tract are structurally normal. There is no aortic regurgitation.
  • PULMONIC VALVE - The pulmonic valve is normal. There is no pulmonic regurgitation.
  • AORTA - The aorta is normal. The aorta is dilated at the ascending aorta.Aortic Sinus(cm) - 3.4. Ascending Aorta(cm) - 3.6. Aortic Arch(cm) - 2.6. Upper Descending aorta(cm) - 1.6.
  • PULMONARY ARTERIES - The pulmonary arteries are normal.
  • IAS/IVS - There is a patent foramen ovale.
  • PERICARDIUM - The pericardium is normal.

CONCLUSIONS
1. EF 60%. Normal LV size, normal systolic function. Normal diasotlic
function.
2. Ascending aorta at the upper limits of normal, normal aortic arch.
3. Color flow seen at the atrial septal level most c/w patent foramen ovale.
4. Tri-leafelt aortic valve, no AR.
5. Structurally normal MV, no prolapse, trace MR.

They also did a cholesterol/LDL check:

3CIbnkj.png


Doc was impressed :)
 
Last edited:
I didn't realize the date of the OP until I saw ragejg's post. :(

Glad you're doing ok Dave :up:
 
AluminumHaste said:
Imagine if you didn't you'd be dead :eek: Glad you have insurance. Hope things get better
Click to expand...

Not true. As soon as it is even close to life threatening the hospital will do the surgery, insurance or not. This is one of the stupid misconceptions out there. I have seen a homeless man get a lung transplant, in Canada, you just wait until you die. Cheaper for the government that way.
 
Dave said:
Just a small update:

Had my yearly Checkup yesterday. Did a Echocardiogram of my heart/aorta. No Change since last year :D. Doctor wants to move me to a 2 year checkup cycle. He is starting to lean to me not having marfans, or atleast if I do its a very mild case of it.

Cleveland Clinic has really stepped up with their test results and their mychart website. Allows me to see results at home. For those curious:

CLINICAL INFORMATION
MEASUREMENTS Measurements
  • Aorta(at leaflets - cm): 3.6
  • Left atrium(cm): 4.1
  • Left Ventricle ID(dia - cm):5.5
  • Left Ventricle ID(sys - cm):3.6
  • Intraventricle Septum(cm): 0.9
  • Post. Wall Thickness(cm): 0.8
  • Ejection Fraction(cm): 60
FINDINGS
  • LEFT VENTRICLE - The left ventricle is normal in size and systolic function. EF = 60 +/- 5%.
  • RIGHT VENTRICLE - The right ventricle is normal in size and systolic function.
  • LEFT ATRIUM/PULMONARY VEINS - The left atrium is normal. The left atrial cavity appears normal in size. The left atrial cavity area is 15.0 cm? during systole.
  • RIGHT ATRIUM/IVC/SVC - The right atrium is normal. The right atrial cavity area is 13.0 cm? during systole.
  • MITRAL VALVE - The mitral valve is normal. There is no mitral leaflet prolapse.There is trivial mitral regurgitation. The pulmonary venous pattern showed normal systolic flow.
  • TRICUSPID VALVE - The tricuspid valve is normal. There is trivial tricuspid regurgitation. Regurgitant velocity is 200.0 cm/s and estimated RV systolic pressure is 21 mm Hg.
  • AORTIC VALVE/LVOT - The aortic valve and left ventricular outflow tract are structurally normal. There is no aortic regurgitation.
  • PULMONIC VALVE - The pulmonic valve is normal. There is no pulmonic regurgitation.
  • AORTA - The aorta is normal. The aorta is dilated at the ascending aorta.Aortic Sinus(cm) - 3.4. Ascending Aorta(cm) - 3.6. Aortic Arch(cm) - 2.6. Upper Descending aorta(cm) - 1.6.
  • PULMONARY ARTERIES - The pulmonary arteries are normal.
  • IAS/IVS - There is a patent foramen ovale.
  • PERICARDIUM - The pericardium is normal.
CONCLUSIONS
1. EF 60%. Normal LV size, normal systolic function. Normal diasotlic
function.
2. Ascending aorta at the upper limits of normal, normal aortic arch.
3. Color flow seen at the atrial septal level most c/w patent foramen ovale.
4. Tri-leafelt aortic valve, no AR.
5. Structurally normal MV, no prolapse, trace MR.

They also did a cholesterol/LDL check:

3CIbnkj.png


Doc was impressed :)
Click to expand...

Nice numbers!!!
 
Dave said:
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 ****...
Click to expand...

Geez man, take care. Hope that surgery is the last thing you have to have done. I see this was an older thread but still the sentiment is the same, hoping it goes in a positive direction.
 
So now that rage is healthy again, time for an update.

The docs at the Cleveland clinic were never able to give me an official diagnosis. It's always been "maybe you have it, we're not 100% sure". So late last year I got sick of hearing that and also kinda fed up being tired all the time from the blood pressure medication. I switched my doctor's to a different hospital system, met with a new cardiologist and they ran the usual tests (MRI and a echocardiogram). They came back as not entirely conclusive. So the doc referred me to a marfan specialist. They ran a DNA test which... Drum roll... Came back negative for Marfan's, which completely rules it out. I went back to my cardiologist, who after looking at the results, pulled me off of the blood pressure medication.

It's been about 3 months since I've been off the medication and I feel great! Have so much more energy now, and I'm super glad this whole saga which has been going on for over 20 years is over.
 
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