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All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination.
I am 1 year out from my alcohol septal ablation. It was preformed in S.C. by Dr.Spencer. From what I've seen on the web site not many have had it. I don't recall readimg that anyone had gone through it. I would really like to talk to anyone that has had the procedure.
Tara -I see you have had both procedures in the same year... this is a bit unusual? Whats the rest of the story (there is always a story )
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Hi
I was diagnosed at the age of 24 at that time I was given medication as a first step. The medication was not working for me and I was given the option of having either the ablation or the surgery done. So in feb 2000 I opted for the ablation. I felt great afterwards. As time wore on I began to feel worse, to the point that I could not walk to the bathroom without being short of breath. At that time most of my days were spent sleeping. It was no way to live life. So in Nov 2000 I had the myectomy done. Due to having both surguries done I had a pacemaker implanted. I am now drug free and have been feeling well since. Thats the short version of my story.
Tara
That is the short version I am sure... sounds like you have had a difficult time ...I hope that is all in your past
Best wishes,
Lisa
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
Hello
I am sorry to hear that you are beginning to have symptoms again. I know how that feels. To this day I continually wait for my symptoms to return. I had both of my procedures done in Toronto, Canada.
Hello Terra. I'm pretty sure I've heard about you! When I was in Toronto getting all the info on the S.E.A., one of the questions I asked were "in all of these operations, have you had any that went wrong". "Well....." then your name came up. They explained to me, in retrospect, that they felt they didn't do enough, that they didn't target a big enough area. They said every time you had a problem you had to see the same doctors in Toronto that treated you, which is difficult, (did you have to fly?) and also that you were a student and all these interuptions and problems you were having were recking your life, so instead of giving the S.E.A. another shot, you opted for the myectomy, which they have much more experience in doing, to get it over and done with.
Your story is one of the reasons why I chose the S.E.A. surgery, because, like you, if the S.E.A didn't work, I could always come back for the myectomy. A backup plan if you would.
Funny thing, during the procedure, they did it twice. They did the first first down a big artery, but after that they felt it wasn't a big enough area, so they went down a smaller one and gave another shot to further decrease the blockage. I can't help but wonder if they didn't learn something from you that helped me.
Hello
I hope that everything is going well for you post your ablation. I glad to hear that my story has helped you along the way.
At the time that i was diagnosed I was living in Britich Columbia attending school. By doing some research had found that Dr. Wigle was the best HOCM specilist that Canada had to offer, I immediately went to him. This was all at a cost as he was across the country. During the two years that I had several complications I became a frequent flyer. During this time I also had to withdrawl from school twice. My life at that time was is choas. I have now moved to Toronto where I am still trying to obtain a degree, that I started many years ago. I am now much closer to my family and that character Dr. Wigle.
I wish you the best
Tara
Knowledge is power ... Stay informed!
YOU can make a difference - all you have to do is try!
Dx age 12 current age 46 and counting!
lost: 5 family members to HCM (SCD, Stroke, CHF)
Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
Therapy - ICD (implanted 97, 01, 04 and 11, medication
Currently not obstructed
Complications - unnecessary pacemaker and stroke (unrelated to each other)
The Jam. I can realate to the story. I too was a victim of a area that was targeted to small. Although my septum was reduced from 32mm-18mm from my first ablation, I still felt crappy. My septum looked pregnant. Now I am a good solid 30mm again and about to have my second ablation, but now I am considering a myectomy.
hi
i had alcohol ablation on dec 17 2003. i was diagnosed in 1997.
had been slowly going downhill from there .took verpamil for
most of the time it was not helping much after awhile. one set
of doctors wanted to do mytrol valve replacement with a machinal
valve. did not offer any other treatment. got a second opinion
and had the ablation. i am 60 years old and a tax preparer so
during tax season i work about 80 hours a week. i feel great.
My husband had alcohol ablation Nov. 2003 and is doing well. I noticed that several of you that have had the procedure had symptoms return. Is that common? Is there anyone that has had it done long term and did not have to have a repeat or myectomy and is still doing well? Just wondering. I have been encouraged with my husband's progress, but am wondering about the future.
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