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1 month after ablation

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connie Find out more about connie
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  • Lisa Salberg
    replied
    Patrick...
    Why didnt you wave back! I wave the whole way over GA and I did not see you waving back .
    Lisa

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  • PATRICK
    replied
    Well dont forget to say hey when you come back through Georgia!

    Leave a comment:


  • Lisa Salberg
    replied
    HI all!
    I am at a coffee shop in Key West Florida...just did my yoga and walked around town. What a calming place this is...
    I would ask you each to take a step back here... I know you all and think your all heading in the "right" direction...meaning to provide information and support for each other.
    Connie - I am SO happy your feeling well and that at this time you feel the procedure you choose is the right one for you... I hope it stays that way FOREVER! RE "the gold standard" - this is a medical term not something we came up with - it means the treatment of choice by the medical community. Some centers are pushing ablations rather hard and this is of concern to the HCMA - and we will continue to state our concerns when needed. In your case..you did educate yourself, knew the options and made a choose that was right for you and I am glad you did. Again I could not be happier for you and your success!!!!!
    RE your comments that the "HEAD" of the board is somehow against this procedure... You are wrong, as Founder and President I claim the position of "HEAD" of the board and your statement is not based in truth, it may be your opinion but it is not my position. I think if you reread my posts on the matter you will see that I support OPTIONS above all and this is an option.

    To the rest - as I always say..."we are all different and what is right for one may not be for the next"... this carries to meds, devices, procedures everything.

    I am off to continue my vacation and will trust you all see my postion clearly and know the HCMA is here to provide support to all regardless of procedure, device, age, location, or anything else that makes us a little different...because we are more alike then many will ever understand.

    Peace to you all from the sunny florida keys!

    Lisa

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  • Sarah
    replied
    respect

    Dear Connie,

    I respect everyone who posts here. However, I know nothing about any of you until you tell me. So while you were able to make a well-informed decision, not everyone has had that opportunity before they get here.

    It would be wonderful if the world were a place where all medical information was provided in a clear and easy-to-understand manner and all doctors tell all of their patients all of the information they need every time they see them. However, this is not the case. So until that time, I'm afraid we may occaisionally be telling people stuff they may already know.

    I'm sorry if you feel insulted; that was never anyone's intent. Honest concern for your well-being is behind everything we do here.

    take care,

    Sarah

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  • connie
    replied
    Missing the point...........

    I am afraid my point has been totally taken out of context. As I stated I did extensive research on all of my options. including The septal Alcohol Ablation. I know all of the risks involved all of the pros and cons and that it is a new procedure. I do not need for it all to be re explained to me. I did not have somthing this serious done to me with out checking ahnd reading and getting professional opinions.
    Nor did I ever imply that any one "run willy -nilly" or play follow the leader and have the procedure done just because it was all the rage and I had had it done. Please dont insult my inteligence. Nor did I ever state that anyone here at the board must give their backing or approval for the procedure. "READ MY POST CAREFULLY".
    It was as I stated, the personal support from "some" that I found lacking and the blatant biased attitude toward those that have had or were contemplating having the procedure. Words speak louder than you think. Go Back and read some of the previous posts. Give Us All A Chance...and the same respect. As was stated previously , by Sarah. no one ever agrees on everything. Connie

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  • Dennis Kogut
    replied
    Connie - I was glad to read you had a very positive result with your alcohol ablation. I was hoping It would be appropriate for me but I needed some mitral valve repair so I had a myectomy about 10 weeks ago. I too had a very good result. Please lighten up and stay involved. We need everyone's informed opinion. Your contributions have been welcomed - please continue. I also did a lot of reading and research prior to my procedure. Nothing I read here in the last year or so (since I've been reading) has been inconsistent with the latest professional literature.Everything I've read and heard (including here)suggests ablation is appropriate for some people in some settings under properly skilled hands. I didn't feel discouraged about an ablation from reading this board. The advice given is cautious as it should be - for ablation and myectomy and other major procedures. I think Patrick has been given good advice.

    Leave a comment:


  • Linda
    replied
    Connie, I have thanked people more than once for sharing their positive results after alcohol ablation. I, for one, am very excited about the potential for this treatment option. It's not my story to share, so I must be cautious about the experience our family had with treatment options, but believe me, we've been thru **** and back more than once. Myectomy is not without risks, but I have attended numerous lectures about both procedures and am very much aware of the need for precise training of the practitioner, the selection of the patient, and backup services available at the facility. I, personally, would not want to be the first, second, or even third person someone did the procedure on unless I knew for certain that someone more experienced was right there beside them. Therein lies a big part of the concern with the procedure. I want so much to see good statistics and long-term low rate of problems, but I don't want to see anyone "used" before that facility and practitioner are completely qualified. At this point in time, there really are not consistent guidelines as to selection criteria. Different doctors are using different cutoff numbers for qualifying gradients. I truly hope those who have had such great results will continue to share and post, because we need to see these, but please be aware that as Board Members/Moderators, we will be very cautious as to referrals, etc. As stated above, we do not provide individual medical advice, but want to provide information that will be beneficial to people when they have so many difficult decisions to make. This is the reason that you will see all of us refer questions about referrals to Lisa at the HCMA office. It is helpful, educational, and supportive for everyone who shares info, but each person is so different, and details are too important to take lightly. It is people like you who have had such good results initially that we will be looking to and hoping for continued great progress reports. Please continue to share with us. Linda

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  • Sarah
    replied
    wow

    Dear Connie,

    If you read my post carefully, I was responding to that person in particular and not to EVERYONE.

    Alcohol Septal Ablations are GREAT ---when they are done by someone who knows what they are doing and when the patient is selected very carefullly. There are risks and concerns --just as there are for every other treatment.

    Why do we sound biased? Because we are cautious. I feel that we need to be very cautious about promoting ablations becaue many cardiologists _who are not HCM specialists_ are doing them without regard to the patient selection guidelines the major HCM centers are using.

    The major HCM centers ARE doing ablations, just not willy-nilly.

    We are all glad you are happy with your ablation and support your choice.

    HOWEVER, with some of the medical community pushing a new procedure that doesn't have a long track record, we are not just going to play "follow the leader" and tell you all to run out and get an ablation.

    We have a responsibility to be even-handed. We don't promote or discourage any treatment here --we only disucss the risks and rewards. If it sounds like we only talk about the risks of ablations it is because we don't here that side coming from the doctors some of our posters are seeing.

    I'm sorry that you can't set this aside and continue to be a part of the community. None of us are every going to agree on everything, and having you on the board will certainly help others who have questions about ablations.

    Why not stay and continue to represent a postiive side to the ablation question?

    Sarah

    Leave a comment:


  • connie
    replied
    HCM specialist.............

    Sarah......So if I have this right.........if the Cardiac Doctor does Septal Ablations he is not a Specialist? And if they do them they are only doing what is trendy and it cant possibly be helping any one.
    The blatant biased opinion's here at HCMA where Septal Alcohol Ablations are concerned have become more than I can take.
    I saw right off the bat that it was "not" an accepted Procedure as per the Heads/moderators of this board.
    All anyone need do is read post from any one here that have had it done to see how little support that is given from the board Heads/moderators.
    I think any and all options should be exhausted, not just what a few people consider "Gold Standard". Myectomy may be "THE" treatment, for some, but what is good for "one person" is not always good for everyone. And it is not the only option. I am sure that the people who chose to have the Myectomy are happy with their choice, As are the ones who have had the Ablation.
    Was this section of the board created so people like you could "BASH" the ones who try to offer support if thay have had it done.
    I have met a lot of wonderful here at HCMA and have seen a lot of people leave and never come back due to the Attitudes of some here.
    I thought this was a "SUPPORT" and Information site. Well it is is you have gold standard procedures.
    Thanks to all who have been truly supportive. Connie

    Leave a comment:


  • Sarah
    replied
    myectomy

    Dear Patrick

    THere are a lot of myectomy patients here and they all seem to very happy with it. While it is a big deal, it is also considered the "gold standard" for reducing an obstruction. Please see an honest-to-god HCM specialist; lots of non-HCM specialist are jumping on ablations as safer when we just don't know if that is true.

    take care,

    S

    Leave a comment:


  • connie
    replied
    My Ablation

    Hi Patrick.......I did extensive research on all of my options before I went ahead with the Septal Alcohol Ablation. I do not have "any" M/V abnormalities and so this made the proceedure more attractive to me. I did not like the invasivness of the Myectomy for me personally. So I ruled it out.
    My experience was very good. Dr. Neilsen and Dr. Cawthan and their team @ MUSC were great. They were very professional and caring. For me the proceedure was not without pain, but it was managable.
    They go in thru your groin area( just like a heart cath, only a couple more lines) they inject alcohol into the effected area( in my case 2 areas) and cause a heart attack. That was a little painful, but they give good drugs to ease it. I had it done on tuesday and went home on thursday. This wa a brief run down. I was out of work 3 weeks.
    Prior to this proceedure, my chest hurt all the time, I had near passing out spells daily, my ankles and hands swelled daily, when I bent over all I could see was stars, and I had "asthma type" breathing spells daily, and I couldent walk from one end of my house to the next, without having to stop to breath. Just taking a shower was a major ordeal.
    One month later all of these symptoms are gone, and Im on the tread mill 1 mile per day. So I am very satisfied with my Ablation.
    But what was good for me may not be the same for the next person. There are a wide variety of results after this proceedure. And somtimes even the ones that turn out fantastic dont always last. In some cases, some or all the symptoms return. Some never do. You do your research and make sure to see a "specialist" before making any chioces. There is no cure for HCM, so the best you can do is get Really good med treatment for it so you can lead as "NORMAL" a life as possible. If you have any more questions about my proceedure, I will be glad to answer them...Connie

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  • Robert Hartwell
    replied
    They have woods is NJ?

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  • PATRICK
    replied
    Do those deer that visit you have oil and stuff on their fur do to all the toxic stuff up there?

    Leave a comment:


  • Lisa Salberg
    replied
    Oh my dear Patrick...When you visit MY NJ you will eat those words... I live in the woods...bear and deer are visitors to my home many days in the warmer weather...it is peaceful and pretty...

    Anyway re the ablation - data shows that we do not have a great deal of long term data to judge the long term effects of the porcedure and due to the fact you are causing an infarct there is concern that you are creating proarrythmic tissue in a pro arrythmic heart. ALSO the MV is very important, if you have any abnormalities of the MV (which many of us do) the procedure will not be as effective and many not woek at all...
    A specialist can help call the shots as to what is best.

    Lisa

    Leave a comment:


  • Reenie
    replied
    Patrick,

    Have you seen a specialist? If so, what does he say about ablation?

    Reenie

    Leave a comment:

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