Septal Alcohol Ablation

[Robbie]

I am a 50 yr. old female, 1 year out from a septal alcohol ablation. I have known that I have HCMA for about 10 years now. I am on Lopressor 180 once a day&Covera-HS 180x2. Before my ablation my graident was 95 at rest. It dropped to 7 after the procedure. I guess i'am doing OK. I haven't found anyone else that has had the ablation. If you are out there I would really like to talk to you. Also does anyone else go to a Doctor in Charleston S.C.? Lonely In Tennessee!!! Robbie[/b]

[Lisa Salberg]

Hi - Give it a few days some of the post ablation people will get in touch with you the New web site design is taking some people a little getting use to.
I have heard from several people similar to yourself who began to have symptoms a year or so after the procedure - as it is still rather new we are not sure why this happens but hope to know more soon.
Best wishes,
Lisa Salberg

[THE JAM]

S.E.A. patient

I'm 24 years old and I had my S.E.A. operation done about 9 months ago in Toronto. I go for my 1 year checkup at the end of april. The doctors told me a year ago that my gradient was over 120 and intervention was needed, which is odd, because I didn't feel much different. I was diagnosed at birth and have been on metoprolol all my life. As far as I can tell I had no side effects other than I got tired out really easy when doing aerobic activity. I feel pretty much the same as before the operation, except the doctors say my pressure gradient is down to under 10 now and falling, and when I'm on my bike instead of my heart being at a nice and steady 120 BPM's, it goes up and down around 160. My medication after the operation has been reduced from 300 mg of metoprolol twice a day to 50 mg twice a day, then 25mg, and now the doctor just further reduced it to a third a 50mg pill a day with the hopes of me eventually not needing any medication at all. It's not a cure, but it's sure damn close!

The best part was the operation itself. Low mortality rate (like less than1%), no pain (well, except for the 28 hours in I.C.U.) and quick recovery time. Oh yeah, and did I mention they don't have to rip your body open? I have to admit, things worked out really good for me and I am very greatfull that this new operation became available to me right around the time that I needed it.

[Lisa Salberg]

I am glad you have had a good result thus far!! Welcome to the board I hope to see you here often shareing your experience with others!
All the best,
Lisa

[Glen Beamish]

Hey Jam, did you have your procedure at Toronto General Hospital?
Who was your Doctor, I see Dr. Wigle there and have to see him in April.
I live just outside Toronto.
Glad to here your results were good.

[THE JAM]

I originally went to Toronto General about a year and a half ago to meet with Dr.Wigle for his opinion and possible treatment when my cadiologist here in Winnipeg discovered the pressure gradient had gotten too high. He recommended open heart surgery, but I also qualified for the S.E.A operation (only a certain kind of HCM can be treated with S.E.A.). I took the S.E.A. After that, I was looked after by his assistant cardiologist, Dr. Woo and a surgeon by the name of Dr. Schwartz, who have a program specially set up for S.E.A. and claim to be world leaders in it, their numbers only surpassed by a hospital in Texas and one in Germany (where it was first introduced) and have a low mortality rate (less than 1%) Apparently they are doing a research paper on it as it is still a relatively new treatment, which is why I have to go for post-op tests in Toronto instead of having them done here in Winnipeg.

Wow, were they ever thorough. I had M.R.I's, X-rays, nuclear pictures, stress test, respiratory tests, urin tests, blood tests (DNA), ECG's (3 times a day), and countless echocardiograms.

My cardiologist highly recommended Dr.Wigle, saying he is world renoun for all of the research and work that he has done in HCM. When I was there, there were HCM patients from all around Canada. The staff jokingly referred to the floor as the "hocum" ward. I have nothing but good words to say about the staff and doctors there. This may sound wierd, but I had a good time. I was so scared that this was going to be a traumatic experience, but it is now a very fond memory, and I am thankfull not only for my operation going smooth but for all the fellow patients and good staff that I met.

[Glen Beamish]

Dr Schwartz, I didn't realize he was even still there.
He was actually the first specialist I saw over 30 years ago at Toronto General and I spent a week in the hospital having much the same tests as you had. I became part of a test group for Dr. Schwartz and in the first few years went with him many times to the University where he lectured to Medical students. I had to stand up and give these students my story, symptoms etc. and then he would show my echo and other illustrations to explain my symptoms. Since then Dr. Wigle has been my main HCM cardiologist. I think there great too and have certainly elevated my quality of life.
Glad to see you had a positive outcome.

[Lisa Salberg]

I think the world of Dr. Wigle his work has lead to many advances in HCM treatment. The Center in Toronto is very good.
I must say that their numbers of ablations are not the highest in the world - if they are there is a problem with over utilization - so I think you may just have that one fact wrong, because I do not think that the Toronto crew would over use the procedure. Germany has done over 800 and Spencer between MUSC and Baylor is at about 400.
Lisa

[THE JAM]

Well, I have to admit, I'm not sure whether their numbers are third on the world list or not. I forget the actual number of cases they've done, but I do remember having the impression that it was quite a bit.

I know that when it comes to objectively guaging a hospitals experience and knowledge, you look to the numbers. But to me, numbers weren't so important. I'm pretty lucky, I could have personnaly afforded to have my procedure done anywhere in the world, and I was assured by my home cardiologist (who I think the world of for the excellent care I have received all my life) and the doctors and staff at the hospital that the program they have at Toronto general is among the best in the world. They told me that if they believed I could get better treatment somewhere else by going outside of the country, they would tell me. After my experience there, I believe them.

[Lisa Salberg]

As you should feel very strongly about the center you are going to they are VERY good and I do not say that often. There are only a few centers in the world who have been in the HCM "game" for the long haul and Toronto is one of them. RE the correction on the #'ers thing...I am a techy when it comes to HCM stats...please dont take it wrong..they are a great center...just not the leading # of ablations.
Best wishes,
Lisa

[Robbyn]

Lisa

You are right, Dr. Wigle told me back in September 2002 that 40-50 procedures had been done at that time. I will be having one or the other done there in the near future.

[Lisa Salberg]

Robbyn - thanks for the actual numbers as I have not been feeling that well I have not been in my office (where I keep all my HCM Stats) so I have been working off memory...which is medicated at the moment so not as clear as I would like!
Lisa

[Glen Beamish]

Robbyn, good luck with whatever procedure you decide on.
Keep us informed on your progress.

[Robbyn]

Lisa,

I would say that is a pretty darn good memory!

And Glen, I will report on my progress and I hope to be out camping again this year. Maybe the interior of Algonquin this time. Please let me know what Dr. Wigle says about the Don Valley.

Take care,
Robbyn

[Glen Beamish]

Good Book

Robbyn, I will, I see him in April, he lets me do moderate exercise and I have been doing a lot of cycling the last year and have riden close to the distance on the Becel Ride so I hope I can convince him.
Before I got my place in Haliburton we spent a lot of time in the Algonquin interior.
For Christmas my wife bought me a book called The Last Guide, basically it's about the last guide who took people into the interior of the park and also went back in time and told stories of guides like Tommy Thompson.
The area the last guide was describing was the area going south on Smoke Lake into Ragged Lake and a few others, that is where we always went so it was great reading about it.
The book is available at Chapters, I recomend it.
I feel like a movie and book critic today.