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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by stjames on August 27, 2000, at 21:40:48
Y'all were so kind to "kick my butt" so I would stop puting off
this test and so, much late, this is what happened. Short answer is that
I need more tests. I;m conserned about anyurisims, as they run in
the family, and I knew going into this test that a stress echo does
not image the aorta. My primary is more conserned with
my high BP, so he is checking for cause and possible dmg
with the echo. The stress echo almost killed me ! (a joke, but it felt that way)
The cardio man did say that given my family history I was justified in being conserned
and need specific tests to image the aorta. he chose the worst moment to tell me this, 1 min before the end of the tread mill part, just b4 I really thought I might explode.
There were minor changes on EKG and resting echo, due to hypertension, but they
resolved on stress. My heart did excellent under stress
and if I were not so out of shape I would not of felt like I was going to die.I knew from the Marfan list that there were some reading this test could
do that might be indictave of an anyurisim or the beginnings of on. The tech
had some time to kill and showed my some neat doppler images. I asked her to estimate
the aortic root size. She said "I can't do that but I can tell you exactly
what the root size is" Ms tech was very clinical and did not even crack a smile
when she said "this is your heart" and I said "just the one ?" My aortic root
was high normal, like 3.6-3.7 cm and 4.0 cm is cause for consern. In my case this just might
be the hypertension but a enlarging root size also indicates a risk for
anyurisim and/or disection at the aortic root (where the aorta attaches to the heart)So I need to get my primary to order imaging of the aorta and I will push for a
complete study of the entire aorta. From my reading it seems less likely
I have Marfans as the criteria is very specific, now.
There are at least 2 genetic conditions that cause anyurisims.
Wayne State is doing a genetic study on non-marfan families with
anyurisims; I am finishing the paperwork for this.This test was $1,400 so I will have to make a good case for
more studies. Getting the HMO to pay for a complete study of
all of the aorta(s) may be a fight. I would like to know for sure
so I can go back to taking Dexadrine.james
Posted by Greg on August 28, 2000, at 9:57:35
In reply to James's Stress-Echo, posted by stjames on August 27, 2000, at 21:40:48
Mr.James,
I'm glad you finally got this done! What I thought was funny about mine was after the treadmill (only got up 145bpms before I had to stop) they laid me down on the table and said "Now hold real still so we can get an accurate reading". Here I am, gasping for every breath sure I'm going to have a heart attack, and they want me to hold real still?!?!. Anyway, they said mine was back normal. I was very concerned because of the history of heart disease in my family.
In continuing with the butt kicking, don't put off your further tests. The only way you're going to have any real piece of mind over this is to get them done. I know dealing with a HMO is a total pain in the a**, but I'm sure you can get a reference if you push the issue enough. Is your Heart specialist willing to make the ref for you? I would certainly think so.
You obviously know a lot more about the technical side of this than I do so I won't embarrass myself by trying to talk intelligently about it, but I'm real glad you are pursuing this. You are a very valued part of the PB community, and I want you to be for a very long time.
Peace,
Greg> Y'all were so kind to "kick my butt" so I would stop puting off
> this test and so, much late, this is what happened. Short answer is that
> I need more tests. I;m conserned about anyurisims, as they run in
> the family, and I knew going into this test that a stress echo does
> not image the aorta. My primary is more conserned with
> my high BP, so he is checking for cause and possible dmg
> with the echo. The stress echo almost killed me ! (a joke, but it felt that way)
> The cardio man did say that given my family history I was justified in being conserned
> and need specific tests to image the aorta. he chose the worst moment to tell me this, 1 min before the end of the tread mill part, just b4 I really thought I might explode.
> There were minor changes on EKG and resting echo, due to hypertension, but they
> resolved on stress. My heart did excellent under stress
> and if I were not so out of shape I would not of felt like I was going to die.
>
> I knew from the Marfan list that there were some reading this test could
> do that might be indictave of an anyurisim or the beginnings of on. The tech
> had some time to kill and showed my some neat doppler images. I asked her to estimate
> the aortic root size. She said "I can't do that but I can tell you exactly
> what the root size is" Ms tech was very clinical and did not even crack a smile
> when she said "this is your heart" and I said "just the one ?" My aortic root
> was high normal, like 3.6-3.7 cm and 4.0 cm is cause for consern. In my case this just might
> be the hypertension but a enlarging root size also indicates a risk for
> anyurisim and/or disection at the aortic root (where the aorta attaches to the heart)
>
> So I need to get my primary to order imaging of the aorta and I will push for a
> complete study of the entire aorta. From my reading it seems less likely
> I have Marfans as the criteria is very specific, now.
> There are at least 2 genetic conditions that cause anyurisims.
> Wayne State is doing a genetic study on non-marfan families with
> anyurisims; I am finishing the paperwork for this.
>
> This test was $1,400 so I will have to make a good case for
> more studies. Getting the HMO to pay for a complete study of
> all of the aorta(s) may be a fight. I would like to know for sure
> so I can go back to taking Dexadrine.
>
> james
Posted by danf on August 28, 2000, at 16:50:27
In reply to James's Stress-Echo, posted by stjames on August 27, 2000, at 21:40:48
James,
are you marfanoid ? it is very easy to see if you are...
How old were your relatives that had an aneurysm ? what part of the aorta ? what other contributing diseases did they have ?
these would be relevant factors.
did you discuss your specific concerns with the cardiologist ?
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
Posted by stjames on August 28, 2000, at 19:54:12
In reply to Re: James's Stress-Echo » stjames, posted by Greg on August 28, 2000, at 9:57:35
> Mr.James,
>
> I'm glad you finally got this done! What I thought was funny about mine was after the treadmill (only got up 145bpms before I had to stop) they laid me down on the table and said "Now hold real still so we can get an accurate reading". Here I am, gasping for every breath sure I'm going to have a heart attack, and they want me to hold real still?!?!.
> Peace,
> GregJames here....
He he he...yes yes yes ! They almost killed me then asked me to hold my breath ! After everything was finished I felt like Sumo, the beached whale, on a very hot day with gel all over him. Ms Tech looked me up and down and handed me a mass of paper towels as she left the room, saying "You might need these" $1,400 buys you all kinds of useful advice ! How did you know some call me "Mr. James" ? he he
James
Posted by danf on August 28, 2000, at 22:46:39
In reply to Re: James's Stress-Echo, posted by stjames on August 28, 2000, at 19:42:34
well a few things...
If you are only 6ft & no known marfans in your family... it is very unlikely... plus the age rage of your relatives is wrong for marfanoid type related aneurysms..
by book it is a seemingly wide group.. in practice marfans are easy to see & recognize with tests aside, in general
aortic aneurysms are common in older populations with hyperlipidemia. this is due to vascular plaques Plus hypertension. This is quite different from the connective tissue ectasias
Your dad's is /was par... the uncle probably had some old trauma, as is the case with most leg aneurysms.
scoliosis is familial in non Marfans, particularly if in males. females a different story.
In short, your family history is not unusual.your stats for repair are accurate.
do you also have a lot of anxiety ? any phobias ?
Posted by stjames on August 28, 2000, at 23:24:17
In reply to Re: James's Stress-Echo, posted by danf on August 28, 2000, at 22:46:39
No, none at all. Just conserned that all the male in my family
have had this so it is worth checking. I also pay $ 425 a month
for health insurance so I want to see a return on this, it is hard
to come up with. Since both my doc's agree this warrents more study
I don't think my concerns are unjustified. Given that I need to take
35-40 mgs of Dex a day to function does cause me some pause. Your points are
well taken, this all may be random events that are not related, but I pay good
money so we can find out ! Dad had 2 cardologists watching him
for 5 yrs b4 the bypass and no one caught the AAA. He had to
demand they do a study and were quite thankful that dad insisted.
The pathology from dad's AAA could indicate its cause, the cardiologist said.
From the Marfan list I hear that not all marfs have the common physical
traits. While it is common to present early in life with problems, some marfs don't.
The other genetic (assumed) conditions also tend to present later.
I have no ego built into proving I have something,
just time to kill, the internet, and a busy ADD brain !I feel that
when something occures in a family, like all of the men, it is worth checking out.james
Posted by noa on August 29, 2000, at 15:19:14
In reply to Re: James's Stress-Echo, posted by stjames on August 28, 2000, at 23:24:17
James, so glad you are following up on this. It is serious stuff you have to deal with. Take good care of yourself.
This is the end of the thread.
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