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  • please help

    [please help]

    Author: Michele (---.proxy.aol.com)

    Date: 11-28-01 21:39

    My mon was just diagnosed with IHSS...and the Doctor told her she needs surgery....she is 68 yrs old and very very very nervous..The Doctor told us this is somewhat rare and they dont do this type of surgery all the time...I dont know what to do I want to find the best surgeon for her and I dont know where to look...her Doctor has recommended Cornell..I live in New York but I want someone who is very much experience with this type of disease to treat her..I lover her so much and the least I can do for her is get the best care...I hope someone can help Thank you...Michele I am using my husbands screen name im really not a GQ guy.....Thank you I dont have much time she needs to make a decision so i hope someone can help ASAP.....

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    [Re: please help]

    Author: Lori (63.174.244.---)

    Date: 12-04-01 20:02

    This summer I attended the conference provided by the HCMA. One of the speakers was Dr. Mark Sherrid from the HCM clinic at St. Luke's Roosevelt Hospital in NY city. He should be able to give you the answers you need. If you contact Lisa Salberg, she will know how you can contact him. Good Luck!

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    [Re: please help]

    Author: Lori (63.174.244.---)

    Date: 12-04-01 20:11

    I am not sure if my last post went through. so I might be repeating myself. I attended the conference last summer by the HMCA. One of the speakers was Dr. Mark Sherrid from the HCM Clinic at St. Luke's Roosevelt Hospital in NY city. He should be able to answer your questions. Lisa Salberg would know how to contact him. Good Luck!

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    [Re: please help]

    Author: pat-sub (---.intrepid.net)

    Date: 12-04-01 20:48

    Michele,

    Iam 61yrs old and had surgery for HCM last Feb. I strongly recommend the Cleveland Clinic in Ohio. Also Dr. Lever is the HCM specialist there. You definitely want to be seen by an HCM specialist before you make a decision.

    Best of luck. Let me know if I can help answe any other questions.

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    [Re: please help]

    Author: jeff kanapackis (---.proxy.aol.com)

    Date: 12-08-01 22:40

    I was recently underwent surgery for same condition. Yes it is a rare condition, most hospitals see no more than 2 to 3 cases a year. After much research I found a Dr. Schaff at Mayo Clinic in Rochester Minn. He as performed thousands of these surgeries. People all over the world come to him. He pioneered the technique. Good luck. God Bless. Jeff

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    [Re: please help]

    Author: Bob (---.dyn.optonline.net)

    Date: 12-09-01 22:19

    I,too, would recommend you consult Dr. Mark Sherrid at St. Luke's Roosevelt Hospital in Manhattan. I have HCM and have seen him several times. He is one of the recocnized HCM experts, and is very pleasant to talk to. His office number is (212) 523-8353. I don't know of any other HCM specialists within the New York area. I also recommend you speak with Lisa Salberg.

    You are welcome to email me if you wish.

    Good Luck,

    Bob

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    [Re: please help]

    Author: Bob (---.dyn.optonline.net)

    Date: 12-10-01 16:58

    I support the suggestion by Lori that you contact Dr. Mark Sherrid. I have HCM and have seen him several times. He is a recocnized HCM specialist and is easy to talk to.His number at St. Luke's Roosevelt Hospital in Manhattan is (212) 523-8353. I know of no other HCM experts in the New York metropolitan area. I also agree that speaking to Lisa is a good idea.

    Good Luck,

    Bob

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    [Re: please help]

    Author: Midge Rollins (---.obmo.socket.net)

    Date: 12-10-01 19:31

    I had the surgery 20 years ago and today at age 55 the surgery is still considered a success. I had it done at Mayo Clinic by Dr. Puga.

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    [Re: please help]

    Author: Penny Greene (---.tnaccess.com)

    Date: 12-11-01 15:40

    Please help me. My aunt has extreme shortness of breath and she has chest pains. She was went to the emergency room one night and they admitted her to the hospital. They did the exercise test on her heart and said that she was ok. I know there is something wrong, but she has not had any luck with a doctor finding out what her problem is. We are near Nashville, Tennessee. If anyone could help us I would really appreciate it. She has been having headaches and lately near blackouts. Thanks for your help!

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    [Re: please help]

    Author: Anna (209.147.134.---)

    Date: 12-14-01 03:24

    In reference to Penny's message about her aunt, I have the same plea. I am 23 years old and have been having horrible chest pain and shortness of breath for 2 1/2 months now. Ive been to the ER, a heart doctor, a gastroinologist (sp?). All they have found is a

    slight thickening in the wall muscle and arrithmyia and heart

    murmmers, yet every doctor says they cant find anything wrong with me! I cannot lay flat due to awful heart palpitations and can hardly bear to stand in the shower for 5 minutes. Its like a heavy weight or pressure in the middle of my chest. I cannot sleep without drugs. Does any of this sound familiar to those with HCM? I have resorted to doing my own research on the web and found this site and all the symptoms seem point to this. Can anyone give me some advice? Is it possible for the heart doctor I went to to have missed this? I would really like my life back.

    Thank you!

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    [Re: please help]

    Author: Kelly (---.wat.localline.com)

    Date: 12-29-01 12:50

    Michele,

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: please help]

    Author: Kelly (---.wat.localline.com)

    Date: 12-29-01 12:53

    Michele,

    I have been an electrophysiology nurse for over 12 years. I don't know if you have decided on a specialist yet, but if not, I implore you to consider Dr. Barry Maron of the Minneapolis Heart Institute. I do not work for him (infact I live in KS and have never met him) but his name is known throughout the world as THE EXPERT in HOCM. I just typed his name into the AltaVista search engine and got 97 hits. The web site is http://www.mplsheartfoundation.org/ if you are interested in pursuing this search. I wish you the best of luck!!

    Kelly

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    [Re: please help]

    Author: Richard (---.proxy.aol.com)

    Date: 12-30-01 10:42

    Anna

    I too had great difficulty getting a diagnosis (I am in the UK) - my doctors thought I had ashma and then stress. In the end I said if I had ashma surely the drugs I had been prescribed would alleviate my symptoms - my GP agreed so I said well my symptoms have not been relieved so there must be something else wrong with me!

    Eventully my Cardiologist arranged for me to have three tests (1) ECG (2) a 24 hour Holter monitor (this is like an ECG but you have a cassette tape linked to you to track any paplpitations) and (3) an Echocardiogram ( this is an ultrasound reading of your heart which will measure any enlarged muscle and the rate of flow of blood in your heart). I was then diagnosed with HCM with the Left Ventricular outflow tract obstruction.

    I have been tried out on various medication but my symptoms ( they are just as you describe in your message) have not been relieved. My Cardiologist is now considering a pacemaker or alcohol ablation.

    So I would say to you get your doctor to do the 3 tests,I have referred to above,assuming you have not already had them.You must try your hardest to get

    your doctors to act.Also I don't want to alarm you but if anyone in your family has died suddenly without any known cause you must tell your doctor.This information

    plus the test results should led to a diagnosis.

    Do let me know how you get on - Good Luck

    Richard

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    [Re: please help]

    Author: Anna (---.phnx.uswest.net)

    Date: 01-04-02 00:37

    Dear Richard,

    Thank you for your reply. I have had an EKG and it was normal. The ECHO is an interesting story. I had one done in April before I was having any symptoms, they did it just to see if they could figure out why I have high blood pressure. It showed a slight thickening of the left wall, where the normal is like .6-1.2, and mine was

    1.2. So when I started having all these symptoms at the end of September I went back to the cardiologist and he wouldnt do another ECHO! He said my heart is fine, theres nothing wrong with it. I asked about the slight thickening, and if its possible it got worse, and he said no way. They finally did one a few weeks ago when I ended up in the hospital for so much pain. Anyway, I had to insist on the Echo when I was in the hospital and they still wont give me the results. I want to see if the numbers got higher or not. Do you know if its possible to have HCMA with my type of symptoms with only a slight thickening? I am on my way to a new cardiologist, the old one also told me I have no heart murmer, but two other doctors have said I have a very distinct murmer and were shocked to hear that I was told that I dont. Its very confusing and frustrating. Do you also have high blood pressure? Im not sure what to think, but I have to figure something out. They had me living on pain killers like morphine and I had to stop taking it because I was constantly vomitting from it. So now Im reduced to a wheelchair because walking anywhere is so painful! Do you also have the pain shot into your back and arms sometimes?

    Im sorry this is so long, Im just so thrilled to hear from someone who understands and might be able to help! Thank you very much,

    Anna in Arizona

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    [Re: please help]

    Author: Sara (---.bear.com)

    Date: 03-13-02 15:53

    Anna,

    Call Dr. Harry Lever at the Cleveland Clinic and speak to him or his assistant Karen. Tell them your symptoms. Dr. Lever is an expert on Hypertrophic Cardio Myopathy - his number is 216-444-6970. I'm sure he can refer you to the best specialist in your area. Don't waste any more time. Good luck.
    NOTE: This is a post from the previous forum message board.

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