Getting ICD along with either Myectomy or Ablation?

[Annice Broadwell]

This is my first post, so I hope I'm doing it right. I am 27 years old and have been on drug therapy since I was 13. My symptoms have increased over the past couple of years(3cm thickness, 90mm gradient) so when I went for my annual check-up in Septemeber my doctor and I discussed possible myectomy, ablation, or more drugs. He put me on a monitor for 4 weeks, so he could get some recordings so we could determine our next step for alleviating some of the symptoms. He called me last week about one of the recordings, he saw ventricular tachycardia and this makes him feel as though I also need an ICD. Tomorrow(10-9-03) I go back to the doctor to turn in the monitor and discuss my options. He says we can do the ICD at the same time we do the myectomy or ablation and he has left this decision up to me. When I thought I was just looking at myectomy or ablation, I was leaning towards the myectomy, but now I'm not sure. I was leaning toward myectomy because there is more long term knowledge and with ablation there is a greater chance of needing a device in the future, well now I will have a device at the same time. Although not a pacemaker, which may be more of a need in the future after ablation that after myetomy. Any thoughts or personal experiences would be appreciated.

[Sarah]

Dear Annice,

Well, a 3cm septum and vtach are both risk factors, so an ICD is not out of the question. Being so young, you may want to lean to the myectomy as there are no long term studies on ablation and you are strong enough to go through surgery well (barring other health issues).

Regardless, I HIGHLY recommend you make sure you are seeing an HCM specialist and are getting your procedures done somewhere that does them all the time. success rates are higher, complications lower.

keep us posted,

s

[Annice Broadwell]

I just got back from my appointment and we will be doing the myectomy and defibrillator in the next couple of weeks. he does recommend the myectomy over the ablation for me and the defibrillator is a must because of the V-Tach. I will know an exact date today or tomorrow. Thanks!!!

[melissa lodge]

Annice,
Thanks for your posting. I almost feel as if it could have been written by me. I am a 36 year old woman and had my septal myectomy on Sept.18 at the Cleveland Clinic. My doctor in Cleveland suggested before surgery that I may need a defibrillator because I had experienced near syncope associated with some ventricular tachycardia. It was determined after surgery that I should get a defibrillator because I Had been diagnosed with HOCM early (age 32), I could not rule out a family history of sudden death, I had VT and near syncope. I then receved my ICD on Sept. 29 in a separate procedure. I hope I will never have to use it but if I do, it will save my life. I have 2 young children who need me alive and I look at the device as my little life insurance policy.

I decided on a myectomy because my Dr. Harry Lever ( awesome man and fantastic Doctor) at the Cleveland Clinic stated that there is not enough long term results for alcohol ablation in younger people like us.

If I could give you some advice, I would say go to a HOCM specialist who deals with this disease every day. They know all the research in this field and see hundreds of patients with HOCM. Also, for your surgery go to someone who does lots of these procedures every year. My surgeon at the Cleveland Clinic was a star. He did 75 myectomies last year and had 13 scheduled for the month of Sept. Most smaller hospital heart surgeons only do a fraction of the amount of these surgeries. Ask your surgeon how many of these procedures he/she had done in last year and recently. I would rather go to someone who does this procedure all the time. Also, My surgeon listened to me when I asked him to try to keep the incision small because I take a beach vacation every year and still wear a bikini. He started the incision lower and made it only 4 inches long. Now that the Dermabond is peeling off, the scar underneath looks very thin (about 1-2 millimeters thick) and is barely a shade pinker that my normal skin tone. I couldn't be happier with the results.

Besides having a great looking scar, my heart is functioning in a more normal manner. My septal thickness went from 2.4 cm to 1.3 cm. The pressure gradients were as high as 90 and are now normal. After surgery my mitral valve which reguritated terribly has now popped back into place and is behaving as it should.

I hope my email is helpful. My thoughts are with you. Good luck.
Melissa

[Lisa Salberg]

Hello to our 2 newbies!
I agree 100% specialist are the way to go! I think you are both on the right paths..and are looking at your treatment options with good questions in mind!
Annice - where are you having the myectomy done?

Best wishes!
Lisa

[Annice Broadwell]

My surgery has been scheduled for Wednesday, October 22nd. It will be done at Duke University Medical CenterDurham, NC) by Dr. Donald Glower. He has been doing the procedure for many years with great success. My doctor is J. Kevin Harrison and Dr. Andrew Wang is the HCM Specialist at Duke and they practice together. My other family members go to Dr. Wang, but I started with Dr. Harrison before my family started going there and I really like and trust him. Please wish me luck on the Myectomy and defibrillator, I will keep you posted!!!
Annice

[Linda]

Best wishes, we will be waiting for progress reports. Linda

[Rich Miller]

Hi Annice, Well good luck on your procedure next week!! I had the pleasure of being a patient at DUMC back in 1989, it wasnt heart related ,but i had to have an 8 hour operation and since i had been diagnosed with IHSS ( now HOCM) Dr Urbanic had the cardiology team clear me first.I spent 14 days in hospital and while I was there they asked if they could bring in some of the cardio interns and do a work up on me since they didnt get many patients with our disease there . I let them of course ,a very pleaseant experience .There were nice caring people there then and i am sure there are now.So GOOD LUCK :) Rich