intro + gradient and thickness measurements, how to compare?

[eatwell]

Hello, I'm a newbie, spoke with Lisa by phone today. What a great person! Briefly, I'm 41 y/o female dx with HCM in mid 20's. Been on atenolol for roughly 15 years and pretty stable. Had 2 pregnancies recently and did well. My father had HCM and had sudden death at age 60 in 1997. I had a cousin with sudden death age 29, in 1990 no diagnosis of HCM, but probable.

Now, I'm very symptomatic and recent echo showed gradient of 159 and septal thickness of 1.5. I know I need a septal reduction and my cardiologist is referring me to Cleveland, Houston and possibly somewhere else. I am leaning towards a myectomy due to my age and want to discuss an ICD, too. I'm waiting to talk more with the specialists but this site and Lisa have helped educate me.

There is a lot for me to process right now but I'm trying to understand how my gradient is so high when my thickness doesn't seem to be as bad as some I've read here. I've seen greater thickness with lower gradient. Is it simply answered that things are variable from patient to patient? What is considered a normal thickness? Anyway, I'm just trying to further educate myself and understand more about obstruction. I've always been non-obstructive until recently so I don't understand everything.

I appreciate any thoughts. I'm feeling pretty lousy right now, especially when chasing a toddler and preschooler!

Thanks, Laura

[mtlieb]

Laura,

First of all, welcome to the forum!

We are all so glad to have you here with us, but wish that you didn't have to be here under these circumstances. Not sure if that actually made sense, but then again I rarely do. Just ask anyone.

If you need to have a septal reduction (i.e. myectomy) you honestly couldn't live in a better place right now. The Cleveland Clinic has been rated the Number One heart center in the country ten years running, and perform more myectomies than anyone else. That's not to put down any of the other centers you may read about here... you are just very well located near one of the top centers in the country.

As far as the obstruction goes... it is not necessarily a factor of how thick your septum is, as much as it is a factor of where the thickening is and whether or not it interferes with the mitral valve. My own septum has only ever measured 1.8 cm max, however the obstruction it caused made my gradient close to 200 mmHg before surgery. That's a pretty big gradient for such a small septum.

I had my myectomy last June at the Cleveland Clinic... in fact I believe I have a one-year anniversary around here somewhere. Woo hoo!

There is lots we still don't understand about HCM... for instance why are there some folks who have very thick septums with no obstruction at all, yet there are others (like me and you) with relatively small septums but large gradients.

I know there are others here who will add there comments shortly, but I wanted to let you know you are not alone. Your case sounds quite similar to my own.

Please take care,

Jim

[Stuart Schwartz]

Laura

Welcome to HCMA.

I never knew that I had anything wrong me. I was functioning just fine. So I thought.
I never even had a heart murmur. Over a couple of months I started to experience some lightheadedness & slight sob. Next thing I know I passed out and within a week I was told I have HOCM and shortly after that I was told I needed a Myectomy. Within a few weeks I couldn’t even walk.

Don’t try to figure it out and try not to be frustrated. Just know that there are things that can be done to make you feel good again. All I can tell you is I had a Myectomy & now I feel better then I ever did.

Stay positive,
Stuart

[Reenie]

I just want to say hi. Jim answered your question about why you have a high gradient with a smaller septal measurement. You're on the right track since you've already spoken with Lisa. There are a couple other ladies in the Cinci, Dayton area who have had myectomies at Cleveland Clinic in the past few years. They might be able to help you too. I hope one will pop in to say hi soon.

Reenie

[Lisa Inman]

Another welcome to you, Laura.

This HCM sure seems to present itself in every possible way. I guess that's why hundreds of us can keep busy on this board comparing notes and trying to get a picture of it. I recently told someone it was reminding me of the story of a few blind men feeling different parts of an elephant and trying to describe the animal based on the part they could feel--I thought we were like hundreds of "blind men" telling each other what our part is like...

My husband and I have ties to Yellow Springs, in SW Ohio. He grew up there. We both went to Antioch there in 60-70's and lived there for a few years after. We've had family of his there until this year when his father died.

Well glad you found us, keeping asking questions here. It is such a great source of information.

Lisa Inman

[eatwell]

Jim and all, thanks so much for the warm welcome and responses. So, really the main factor here is the gradient? That's the main criteria to ascertain the need for a myectomy?

My echo suggested my mitral valve was regurtitating, but the TEE suggested it was managing/holding. Is one able to understand how quickly a high gradient left untreated can cause the mitral valve to fail or cause other complications?

I'm trying not to dwell on the negative, but my husband, too wonders about damages that could be occuring.

Thanks again. This seems a great place to be.
Laura

[Lisa Salberg]

Laura,

One thing I am not sure I mentioned when we spoke. In some cases where there is a great deal of obstruction and a small septal measurement they may repair, thin or replace the mitral valve itself. It is VERY RARE to need a replacement it is most often times repaired. This is one more reason that myectomy is a good option for those with thinner septums (also alcohol spetal ablations can not be done on such small septums).

Take care,
Lisa

[Reenie]

Laura, a reason to have a myectomy to reduce your gradient, besides feeling better, is there is strong evidence to show that having low to no gradient is much better on the heart long-term. The stress the heart is under with a gradient makes it work so much harder and the long-term strain adds up. The mortality rates (not that I think you'll die soon) are much better for those without a gradient. I'm not saying that to scare you into surgery, but I thought you would want information that would help you for the long haul, not just right now.

Reenie

[eatwell]

Thanks, Lisa, Reenie. Yes, I am seeking information for now and future. I am not afraid of information, I seek it. Nothing worse than the fear of the unkown!

It indeed makes sense about high gradient and poor long term prognosis.

Kinda like a pressure washer, that massive flowing water will strip everything away in time.

Thanks, Laura

[Eileen2345]

Hi Laura and welcome to the board,

I wanted to say you are soooooo lucky to live in Ohio.

I live in the Land of Oz when it comes to cardiologists.

I highly recommend seeing Dr. Lever at the Cleveland Clinic Foundation, he is a genius.




Eve