Pulmonary Hypertension and Chiari

December 21, 2008

Hello,

I wanted to share my experience with pulmonary hypertension and Chiari. First of

all PH , pulmonary Hypertension, and high blood pressure are NOT the same thing.

The main artery between the lung and the heart has high pressure which causes

the heart to work harder as it tries to get blood to the lungs.

I was DX with PH back in 2003 and they thought it was a " mistake " in the

readings. During an echocardiogram the tech takes measurements of different

things in the heart and the pulmonary jet is one of them. There can be

lots reasons that cause PH to be secondary and not primary. That means that if

the primary reason is fixed than the PH should resolve on its own.

I had every test known to man to include a sleep study to rule out my PH as

being primary. What happened was that they repeated the echocardiogram and the

pulmonary pressure was back to normal so they said it was tech error....it was

not.

I had a PFO, patent forman ovale, closed in my heart because Dr. B refused to do

my Chiari surgery because he said that I was at great risk for having a stroke

with this PFO open even if it was small, 4-5mm. To make a long story short...it

was not a PFO but an ASD, atrial septal defect that was 11.2mm! Thank you again

Dr. B! My cardiologist said that it was a potentially dangerous defect and I

feel so much better having it closed. It has been almost one year.

There is always some level of PH with an ASD, they go hand in hand. Mine is

closed now so my cardiologist said my PH is gone and an echo proved this. He had

thought it was a misreading too, until the ASD was discovered. Even after 5

echos and a transesphogeal echocardiogram they were still saying small PFO!

I have EDS and it is MY belief that the ASD is due a connective tissue disorder,

EDS. We know that there is a strong association with EDS and Chiari. There are

different kinds and severities of EDS and they all affect us differently.

Joyce, you are in my prayers. It could be your EDS that is causing your problems

directly with your heart and not your Chiari.

Have a wonderful Holiday Season everyone!

Lynn

ACM,EDS, TCS

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