I think that because CP can evidence itself in myriad ways and even leave a
person with more than one disability, doctors can be awfully quick to
ascribe any anamaly to CP instead of looking for real causes.
I myself have a mild case of CP but am also hearing-impaired which was not
CP-related but probably due to a viral infection I had as a child. Also,
about 15 years ago, my eyesight suddenly worsened to the point that my
glasses weren't of much help and the opthalmologist didn't believe me when I
told him I had not always been so near-sighted but thought it was
CP-related. He finally believed me when he found the old eye exam results at
the local medical school - the problem turned out to be cataracts, which was
very easily corrected.
The point I'm making is that like Kyle, I think your doctor doesn't know
what he's talking about. You should probably consult a board-certified
cardiologist, not a GP.
Kat
On Thu, Jan 14, 2010 at 8:12 AM, Cleveland, Kyle E. <
[log in to unmask]> wrote:
> Never heard of CP-related heart disease--I think your doc is full of it
> (and himself). Karl, I have very mild hemi (left side) and I've been
> treated, successfully, for Paroxysmal Supra Ventricular Tachycardia (heart
> just decides to go racing at 140-190BPM with no external stimuli) for 22
> years. I asked every cardiologist who would answer if they had ever seen
> any type of heart disease where CP is a primary factor, and none of them
> had. Secondary? Well, yeah, if your disability leads you to a sedentary
> lifestyle, but you have no problem there, obviously. 110% of standard on
> the Army Physical Fitness Test (APFT) for Males 62+ is a 1 Mile run under
> 14:51. 2X that in a walk is doing remarkably well!!!
>
> Physical and Chemical stress tests:
>
> I've had both and prefer the physical--if I can get my heart rate fast
> enough. With the meds I take, getting the HR fast enough to stress the
> heart is a problem. Don't take the meds, though, and the HR won't come down
> after the test. The physical test simply feels like your exercising while
> hooked up to a 12-lead, O2 Sat monitor and spirometer. If things feel
> funny, you simply stop.
>
> The chemical test, I don't like. It uses drugs that either makes the heart
> beat faster/stronger or dialate the blood vessels. I got a cocktail of
> both. Some folks do fine and actually prefer the chemical test as they
> dread how exercise makes them feel. To me, the chem test was akin to a bad
> panic attack. Usually backing off on the drip causes the heart to return to
> normal rhythm, etc. If your heart won't slow down they will IV push
> something like Verapamil to slow it.
>
> If it were me...push for another cardiologist, expert or no. You are his
> CUSTOMER and he works for YOU! You wouldn't accept that BS from your
> mechanic, why accept it from a prima-donna doctor. This was found on a
> routine physical, so it's unlikely that anything adverse is going to happen
> while you find a decent cardiologist.
>
> My tuppence.
>
> Kyle Cleveland
>
> -----Original Message-----
> From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of
> KARL THUNEMANN
> Sent: Wednesday, January 13, 2010 8:33 PM
> To: [log in to unmask]
> Subject: Two matters of the heart
>
> Hi, everyone --
>
> Here's an issue where I am looking for information and insight on two
> separate questions.
>
> During my annual physical this fall, my doctor took a routine chest x-ray,
> and called me a few days later to say that it showed I had an enlarged
> heart. He used convoluted language so he wouldn't have to use that phrase,
> because it could be alarming. But I knew what he meant.
>
> He sent me to a cardiologist, a renowned expert in our region who shot
> through the exam room on roller skates after his nurse had conducted an EKG
> and interviewed me. I hardly got to complete a sentence without his
> interrupting to say, I've got that. I asked him if this could be related to
> my mild hemiplegic cerebral palsy. Yes, he said, there is a heart condition
> that is related to cerebral palsy, but true to form he provided no details.
> He probably figured there was no reason to talk to me about it unless it
> figured in his final diagnosis. He gave me an appointment for a stress test
> that was two months out, so I figured he couldn't be too alarmed.
>
> I thought I had something specific I could look up, but the Internet was as
> maddening as ever in its vagueness. It seems that the older you are and the
> milder your symptoms are, the less likely you are to find useful information
> about CP.
>
> Oh, and I got a little more info from the EKG report, slipped to me by my
> PT. I have a heart murmur, possibly as a result of hypertension, though it
> possibly is of no consequence. The report suggested that the doctor was
> undecided between a physical stress test and a chemical one, though in his
> "visit" (doing violent injustice to this noble word by ascribing it to his
> brief interlude with me) he left the impression that it would be physical.
>
> So essentially, I have two questions:
>
> 1. Do any of you know anything about this CP-related heart condition,
> merely acknowledged in passing?
> 2. What are the comparative advantages and drawbacks of stress tests,
> physical and chemical? (I'm 65, and on a good day I can walk two miles in 40
> to 50 minutes.)
>
> Thanks so much for your help.
>
> Karl
>
>
>
>
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