Posted by stjames on August 28, 2000, at 19:42:34
In reply to Re: James's Stress-Echo » stjames, posted by danf on August 28, 2000, at 16:50:27
Thanks for your interest, Dan, Let me take you through the whole thing. I'll try to be brief but would like your or anyones opinion.
Family Hx, father, triple bypass, abdominal aorta anyserusim repair (AAA), surgery done when he was 50-60's, lung and prostate cancer. Dad is 77 and everything is great, the cancers were caught early. Dad has (had) Hyperlipidemia prior to by pass but now requires no meds for this. He has scoliosis and one shoulder lower than the other. Minor detached retina, successful laser procedure for this, age ~70. No one caught the AAA in dad till he demanded an imaging study prior to the bypass. Go Dad !
Granddad also had an AAA, repaired in his 50-60's. Kidney problems and emphysema. He smoked and just by chance this kidney doc caught the AAA, as granddad was thin. Very large, it was an emergency procedure.
Uncle Jack had an anysersim in his leg that required repair. The rest is scetchy on Jack as we call him "Uncle Jackass". Need I say more !
I have hypertriglyceridemia, a very significant case, my unmediated levels = 1,000. 600 is considered dangerous. Meds (generic !) control this to normal levels. I have always run a little high on this indice, but it really climbed in my 30's. Mild scoliosis. Hypertension. Depression and ADD. Possible visual processing disorder.Marfans....the de facto diagnostic criteria is set the "Berlin Nosology" till it was updated. I might fit under the old standard but the new one clearly excludes. Major criteria require multiple systems to be involved. If we find an AA, plus my scoliosis, we would need 1-2 more. The obvious thing to look for is DE (Dural ectasia) a bulging of the dura at the sacrum. I read an great paper that shows DE is present almost always in Marfs, and if you prove specific cardiac problems (valves and AAA's and just AA's) you have marfans. DE is rare and only is assoc with 1 other condition with no cardiac involvement DE is mostly asymtamatic and of little consern. This is a possible "gold standard" to prove marfans. I have not had a really deep inspection of my Retinas in 20 yrs but a general look has not turned up anything. The real clincher in the updated criteria is one must have Dx of marfans in family members. I don't have that. Lots of Marfs are now up in arms because they are being told they don't have marfan. I am tall with a long face but everyone is tall on both sides of the family. Actually my brother looks more classic marf than I do. He is a "gothic crow" with long fingers. I'm the short one, at 6 ft. We now realizing there are several genetic conditions that effect the genes for connective tissue and the production of fibrillin, as in Marfs. The 2 that might fit me are MASS phenotype and Familial Anuresim Disorder.
As to what the dos say...... Cardio man agrees in my concern, "I would be worried if I had your history" and suggests imaging of the aorta. He asked me "why are you having a stress and not an imaging of the aorta?" My primary, too, agrees with my concerns, but ordered the stress due the very high BP, 170/105, looking for cause and possible damage due to the high resting 105. Primary is the gatekeeper so the cardio man cannot order more tests. Also primary said to start with stress echo as that is what the HMO will pay for. Cardio man wants to see pathology of dads AAA and wanted to know about sudden deaths in dads family. We are checking on both. At this point I could care less about what I have and want to worry about the big issue, anyserusim's, as this could kill me. All the conditions I have mentioned carry this risk. Elective procedures at major centers on AA's have low risk and no effect on life expectancy. Good as new. Emergency repairs carry a 50% death rate. I live in rural new mexico so I don't want to go there. If it happened out here I would bleed out while on a chopper to Albq after driving 40 miles to the nearest hospital.
I did turn up a study I am qualified for, looking a families with AA's and no Dx of marfans. They will look at my DNA so eventually I hope to know if I have Marfans or something else or nothing at all.
James
poster:stjames
thread:43866
URL: http://www.dr-bob.org/babble/20000822/msgs/43949.html