Ablation???

[sueb]

My cardiologist is recommending an alcohol ablation based on my pharamcological stress echo which showed a peak baseline (resting) outflow gradient of 9 and a peak outflow gradient of 144 when reaching the maximum predicted heart rate.

A paper I found on the internet by the German ablation specialist Seggewiss has a unreferenced statement that says: Furthermore, hypertrophic cardiomyopathy without resting, as well as provocable outflow tract gradient, is a clear contraindiciation for [alcohol ablation].

Is this anything that anyone has experience with or knows about?

I am a 64 year old Fabry patient with hypertrophic cardiomyopathy most likely caused by the Fabry.

Sue

[Sarah]

Dear Sue,

Fabry's is a whole other kettle of fish. :!: Did you know that there is now a genetic treatment for Fabry's??? Please do a search on the site for Fabry or call Lisa b/c she can put you in touch with the people you need to talk to.

RE: Ablation in general: My feeling is that you should always get a second opinion whenever anyone wants to remove a piece of your body. :shock:

But Segeweiss is the formost expert in the ablation field and if that is his call, I'd believe it.

Norpace reduces gradients, but I don't know if you need a resting gradient for it to work or not, but is certainly worth talking to someone about.

However, I would get the Fabry's treatment FIRST and then see if you actually need to have anything else done.

Good luck,

S

[Lisa Salberg]

HOLD THE PHONE....

This is a complicated situation... Fabrys ..and ICD that has fired..and NOW thoughts of septal reduction....

I think a visit to a specialist - or 2 may be in order. This is not a typical case... I would not make a move until I had at least 2 HCM experts agree on a treatment path. Am I over protective...yeh maybe but better safe than sorry....


Call me if you need to chat.

Lisa