I am in need of ablation and have questoions

[Stuart Schwartz]

I was told 3 weeks ago I have HCM. This is all very new to me.
Things are moving quickly. I'm being treated at University of Pennsylvania
Hospital. I only found out about this web site a few days ago.
My number is 125.
I am going in for a defib/pace next Wednesday (July 7th).
I am going back in for ABLATION in the very near future.
It is to be done by Dr. Herman here in Philadelphia.
I know little about WHO IS THE RIGHT DOCTOR?
I am told that Dr Herman is head of Cath at Pennsylvania Hospital.
and has performed a few Ablations. He comes highly recomended in Philadelphia. Anyone know of him????
I am open to suggestions as to who & where.
Moving fast,
Stuart Schwartz
[email protected][/b]

[Cynaburst]

Re: I am in need of ablation and have questoions

Stuart - I think you should slow down a little bit and do some more research before you do something you will regret. People who have ablations with the best results do it at a center where they do LOTS of them. You don't want to do this at a place where the doctor has only done one or two.

Also, ablations are only appropriate for certain people. Depending on your age and your gradient and septal dimensions, a myectomy (open heart surgery) might be the better way to go. It is the "Gold Standard" for septal reduction. Ablations are newer, and not that much is known about their effects down the line.

I suggest calling Lisa Salberg, the HCMA president, at the number found on the bottom of this page. She will help you get on the right track and will send you to a center that has experience in both procedures and then you can be evaluated fully. I believe that the Cleveland Clinic is not too far from you. It is one of the best places in the country, and was just rated #1 in heart and heart surgery by US News and World Report, and they have great HCM doctors.

[Burton Borrok]

Re: I am in need of ablation and have questoions

Hi Stu,
Welcome to the board. You sure have come to the right place. By all means scan the postings using the ‘Search’ feature at the top of every page, with key words such as ICD, implant, myectomy, defib, ablation, risk factors, plus words of interest to you. There is a wealth of information here from people with intimate knowledge of these procedures and devices. You can also find tons on various drug therapies.

Generally, drug therapy is the first line treatment for HCM, with all kinds of adjustments and trials, since we are all different, and react differently to the various drugs available. If drug therapy fails, then the various invasive procedures come into play, depending on your individual circumstances (and I don’t mean ability to pay.) The proper evaluation of your situation of course comes first, and should be done by people fully conversant in this particular corner of the cardiac medicine discipline.

You are fortunate in that you live within reasonably easy striking distance to two of the three top places in the country for the treatment of HCM – The Cleveland Clinic Foundation (CCF) of all places – in Cleveland, and Tufts – North East Medical Center (NEMC) in Boston. Our esteemed and cherished president and founder Lisa Salberg can help you loads in what to do, where to go, who to see, how to do all the things needing to be done. She also has a large bag of answers that in all probability will fit all the questions you might or should have.

I can not stress to strongly the benefits of getting in touch with her. Her number is at the bottom of every ‘page’ on the board.

In closing, let me say, You are welcome here.
Burt

[felixdacat]

Re: I am in need of ablation and have questoions

Stuart,

I just sent you an email. Please call me if you have any questions or concerns.

[Reenie]

Re: I am in need of ablation and have questoions

You have gotten some good advice already. Good luck in whichever way you choose to proceed.

Reenie

[Sarah]

Re: I am in need of ablation and have questoions

Dear Stuart,

I'm glad you found us. I know this is probably pretty scary and having things move really quickly is probably not helping.

What do you mean when you say your number is 125?

Why are they installing a pacemaker? They are not usually used for HCM unless there are other issues. As for a defibrillator, which risk factors do you have that require an ICD?

How old are you? This is a big factor regarding ablations, actually, since their aren't any long term studies on them yet.

I agree that it is very, very critical to have an ablation or a myectomy done by someone who does A LOT of them. Ablations sound easy-peasy, but are actually tricky little procedures. HCM hearts are not normal and can easily have hidden surprises when they get in there that someone without a lot of experience wouldn't be able to handle.

Anyway, my main point is --why is this all happening so fast, does it need to happen this fast and I highly encourage you to take a few deep breaths, get a second opinion about your options with a top shop (Minniapolis, Mayo, Cleveland, TUFTS-NEMC, etc) to make sure you get exactly what you need.

Take care,

Sarah

[Stuart Schwartz]

Re: I am in need of ablation and have questoions

I was unaware that there is HCM & HOCM. --

**What I have is HOCM**

I didn't know what to expect when I found this web site and placed a
posting on Saturday July 3 on a holiday weekend at 9:30 at night.
At 7:00 AM on Sunday July 4th I was surprised to see - I HAD MAIL.

I want you all to know that my wife and I are very grateful we found you.
Thank you for the great information.

I am 99% sure that I AM CANCELING FOR WEDNESDAY.

I am not sure what the next step is, but I'm sure you will tell me.

[Reenie]

Re: I am in need of ablation and have questoions

Stuart, we are certainly here for you. We have a lot of information and there is a lot to learn about HCM. Your goal should be getting evaluated by a specialist to make sure you get the right care. Ablation might be the right choice for you, but it might not be. I'm really glad you found us. Don't be afraid to ask all of your questions. And good luck!

Reenie

[mtlieb]

Re: I am in need of ablation and have questoions

Stuart,

Very glad that you have found the site. Welcome!

We know very little about you, so it would be improper for us to try and tell you whether or not an ablation is the right choice for you. With that said however, i do agree that it might be best for you to slow down a little until you can make the best decision for yourself as to which treatment options would be best. You say that you have HOCM, so i can only assume that the number 125 refers to your outflow gradient (or level of obstruction).

There are plenty of other folks here with large outflow gradients as well... some have been able to get theirs under control with drug therapy alone, others have opted for surgery, and some have had successful ablations. I myself lived with a gradient of 144+ for well over a year before finally deciding to proceed with a myectomy four weeks ago. One thing that most of us have in common however, is that we were evaluated at a center that specializes in HCM, and proceeded with a myectomy or ablation only after all other treatment options had been explored.

There is always an element of risk associated with an ablation or myectomy, even when performed by an experienced surgeon at a specialty center. That is why they are considered to be a last resort. Most of us opted to pursue treatment by various drug therapies for a year or more before even considering the more agressive surgical options.

Again, we don't know a whole lot about you... perhaps given your circumstances, an ablation really is the right choice for you. Regardless, i strongly advise that before you proceed with one, you get a second opinion at a center that specializes in HCM.

You have plenty of time Stuart... please don't rush into a procedure that you might regret later on.

Good luck to you,

Jim

(Edited for spelling, grammar, and flow.)

[Burton Borrok]

Re: I am in need of ablation and have questoions

Hi again Stuart,
The next step is easy. On Tuesday call Lisa (She is normally in the office Tuesdays and Thursdays). Have as much information ready as you have available. By the way, it is good policy to get copies of all your test results for your own records.

You are looking for a second opinion by an expert in HCM. Lisa will be able to guide you, and help you get where you need to go. She will also be able to answer all those questions you have pilling up with no answers. If you’re interested (and I think you should be) I do believe in her listings of good HCM specialists she has some entries for cardiologists in the Philadelphia area. Were I in your shoes, I would go to either the Cleveland Clinic or the NEMC in Boston for the work-up and second opinion. These guys, and Mayo, are the top of the top in dealing with HCM. (Let Lisa guide you here.)

The difference between HCM and HOCM is the insertion of the word Obstructive, and what it means basically is that the heart muscle has grown to the point where it is interfering with the proper operation of one or more heart valve. This allows some of the blood just pumped to leak back into that heart chamber, reducing the heart’s efficiency. I have had periods, which I call HOCM attacks, (a big meal is a major trigger for me), where my heart races, I get a bad headache, my legs get weak and I can barely walk more then a very short distance at a time, I am also very short of breath (SOB), and perspire heavily. All around, not a great feeling, and I wind up in the ER followed by hospital treatment for a few days.

It is now under very good control with medication. I have other heart issues and conditions, and consequently take a load of medication. When I was finally diagnosed (just last January 1st) my med’s were adjusted, and some were stopped altogether. What was good for one heart condition was not good for my HCM.

Many cardiologists are not, (let’s say ‘fully’), conversant with this particular corner of their profession, so it is usually up to us to learn all we can about it, and guide our own destinies. There are a few doctors and facilities who specialize in HCM, and we prize them highly. A number of us would travel across the country to be treated at one of their facilities, or to get a second opinion from them. Often they will then work as an expert, in conjunction with your local doctor, for continuing treatment.

Good luck, get and keep informed, and please go talk to Lisa Salberg. She co-authored a major book on the subject, and is our resident expert, founder and president. Her number is at the bottom of every page.
Burt

[Heartmans Wife]

Re: I am in need of ablation and have questoions

Hi Stuart-

I'm fairly new to the board, too, and I can tell you that these people are terrific!! You don't say where you're from - we're in a small town in central PA and 2 years ago my husband was sent to Johns Hopkins for a defib and ablaction - boy, do I ever wish I had visited this sight before going through all of that. To make a long story short, 2 years and many problems later, he has an appointment at NEMC in Boston next month. Wish I had known then what I know now, but I think we're fianlly on the right track.

The best of luck and keep asking the questions - you'll get more support than you ever dreamed possible.

Ange