Decison Making

[Gae]

Hi,

I was wondering if anyone has had a myectomy at Brigham & Women's in Boston or heard of someone who has and how did it go?

I have been informed by my cardiologists that I meet the medical criteria for a referral to a surgeon for a catherization(sp) to see if I would be eligible for a septal ablation(which really scares me) or a myectomy (which scares because it's open heart). My non-heart challenged friends are difficult to talk with because they see the me that wills myself through everyday, not the me who sees the declining me. Anyway, I have all of the symptoms of cardiomyopathy(septal kind) that have not been eliminated or greatly alleviated with medication trials. Currently on 360 milligrams of verapamil 2x daily.

Though, I work everyday, 40 - 45 hours a week, and workout on my treadmill four to five times a week for 70-80 minutes at 2.8 to 3.0, no elevation, this is dramatically less than what I use to be able to do. My cardiologists says my heart appears healthy. There is no comprimising mitral valve issues except related to the blockage.

He did not make a recommendation, instead he informed me that I am in the drivers seat and that it will come down to what I can or cannot tolerate as it relates to discomfort and quaility of life versus what risk I am willing to undertake knowing this is not a cure.

I am wondering if anyone might be able to share with me how they went about making such a momentous decision.

Thanks...Gae

[Reenie]

Hi and welcome to the HCMA. My best advice right now would be to call Lisa Salberg at 973-983-7429. She knows the doctors and she has extensive knowledge of both procedures. Do you know if you are seeing an HCM specialist? It would be a really good idea to touch base with one if you aren't. Lisa can help you get in touch with one who is suited for you, if you would like her to. This is a really big step. Take it slow. We have a lot of people here who would be glad to share their experiences with you. I will say that it's not common for a septal alcohol ablation to be recommended for someone as young as you. Keep reading and asking questions. We're here for you.

Reenie

[shirleymahoney]

Gae

I had a myectomy a year ago i'm 47 now and i was surprised you were thinking of having the surgery, what is your septal measurement? i could workout on a stationary bike for 10 minutes and definetly couldn't work i could barely get out of bed in the mornings, is it starting to slow you down? but like Reenie said call Lisa at the office and she will give you the best advice and welcome aboard

Shirley

[Pam Alexson]

Hi Gae,

Welcome. I was originally diagnosed at B&W Boston. Saw a male doc there. Bryan on the board also went there.

I was pretty much told the same other then at the time Nov. 2000 -May 2003 , I was told there was not a safe intervention for me and he was sorry. I was pretty bad off and no alternative, ie: transplant was offered either. I was told technology was not there for my particular problem. This is where a call to Lisa is very important. After feeling very sad for several months in desperation I called Lisa. She gave me the hope and the guidance that allows me to be here today. I had not realized that an HCM Center was in fact at Tufts NEMC. With her help I saught a second / could be called a third or even a fourth opinion considering my story, and I made a decision that day to jump ship.

I am 51 and had my myectomy at NEMC ( 1st female , 3rd patient) in Oct. 2003. My doc back at B&W when he heard , was very disturbed about my decision and wanted me back or to call him. I had mixed feeling about all that and was pleased that he had helped me to that point , but realized it was time to move on and I still have no regrets. He was correct , it is not a cure and I have a complex heart with continued HCM symptoms but for me it had to be done. The uncertainty of my prognosis and fragility of my existance was more and more evident in each day I faced. In his defence he was not aware of the degree of my devastation and desperation. It was hard for him to listen to those parts as well it was hard for me to give an honest portrayal of my daily rigors. As my brother and mom still go there he still offers his concern for me .

Overall it was the best choice for me and of course the bonus: I have the younger DR. Maron as my main doctor and one of the best team of HCM specialists anyone could hope for.

Lisa and the answers you will recieve here will guide you in the best direction for you particular case.

Keep us posted.

Pam

[Loutinmanswife]

decision making

Hi everyone.
I am a 41 mother of 2 with HCM diagnose at 18.
I have just been told I should have an abulation. And they are talking as early as 2/8 or 2/15 at MGH. I have a long history of HCM my septum double in thickness since 1999. (14cm to 27cm) I have an ICD for two years now, never received thearopy from it (Thank God). However I had a episode recently that lasted nearly 2 hours. I felt like one giant pulse and it would not go away even lying supine. Tommorow I have an stress echo (1st one) at MGH. My Dr. is Fifer. Has anyone had an Abulation at MGH and how quickly do you need to decide to do it. I was hoping for some imput or advice.

[Lisa Salberg]

I must be honest, I am not thrilled with the HCM program at MGH, in fact I am not even sure I would call it an HCM program. I am sorry but those who know me know I am a straight shooter. I am concerned that this center took out TV ads claiming they could offer a new procedure to those with HCM suffering shortness of breath - yet failed to mention that it is only for a small subset of patients with obstruction and of those only a small percentage are appropriate candidates.


I can tell you that based on your age alone that you are not a prime candidate for this procedure as set forth in the American College of Cardiology / European Cardiology Society Consensus document on the treatment of HCM. It clearly states that ablations are not prefered in those under the age of 50-55. Further myectomy is the 'gold standard' treatment for symptomatic HCM with obstruction that is not responding to medical management.

Do not feel rushed into any procedure and I strongly encourage you to seek a second opinion, you have 2 centers close to you that are appropriate for such a consult - New England Medical Center or Brigham and Womans.

Move slowly and please ask any questions that will help you understand your options, you do have options.

Best wishes,
Lisa

[Olga]

Further questions...

Hi everyone,

First of all, I'd like to thank Lisa and other contributors. The site and the forum are a treasure trove of information. I found this site only yesterday and today I know 10 times more of HOCM that I was diagnosed with 6 years ago.

I am in Russia and I do consult HCM/HOCM specialists here. There is only one clinic in the country which specializes in this disease, and I am with those guys. The problem is that I am getting controversial opinions from their therapists and their surgeons. The latter are avid for me.

A few questions:

1. Under which conditions the radical methods are advised in the States?
As for me, I'll soon turn 31 and I have no severe symptoms. I have palpitation after heavy meals and after exertion which doesn't really bother me much. My septum thickness has been less than 2.0 and pretty stable for 6 years.
My gradient varied from
60 in 2001 to
67 in 2003 back to
60 in 2004 to
83 in 2005.

2. Is there any "deadline" regarding the gradient? I have been suggested an operation three years ago when things were considerably rosier. At that time I refused point blank, and naturally I don't regret it now. Does it make any sense to hurry?

3. What is the percentage of unsuccessful myectomies/ablations / lethal cases in the US?

Thanks,

Olga

[Linda]

Olga, as I posted in your other message, please PM Kelly in the HCMA office. She will help you to make contact with Lisa who will be able to answer many of your questions. Kelly is in the office daily during the week.Good luck as you research all your options. Linda