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  • symptoms worse after pacer

    [symptoms worse after pacer]

    Author: vickie (---.se.client2.attbi.com)

    Date: 10-09-02 21:04

    I read this message board daily but rarely post. I have learned so much and find each entry valuable. I was diagnosed with HOCM 2 1/2 years ago after ignoring symptoms of chest pain and SOB for several years before that. I kept thinking that if I got in better shape, my symptoms would lessen but the more active I became, the worse the symptoms were. I couldn't take the clothes out of the dryer without getting chest pain. I eventually went to the doctor and was diagnosed with HOCM. I started on meds with a resting gradient of 60 and a ventricular septal measurement of 2.0. Over the next 2 years my meds were increased until I was on Atenolol 100 mg, Norpace 600 mg, and Cardizem 240 mg daily. I began having long pauses this summer which was attributed to all the meds. My Atenolol and Norpace were cut in half. I had a Dobutamine echo in August which showed a small resting gradient but a provocable gradient of over 200 and a complete obliteration of the left ventricle. My cardiologist consulted with a doctor from Mayo here in Florida and they thought that I might benefit from a pacer. They said that there was a 50-50 chance the pacer would decrease the gradient and even if it didn't, they could once again increase my meds without having to worry about dropping my heart rate. I also had an EPS and on September 11, had an AICD/pacer put in. My EP doc was very happy that the gradient fell to 25 initially . I had a problem with the atrial lead not capturing and as it turns out, the lead had become dislodged so it was repositioned 2 weeks ago. Ever since the pacer has been put in, I have felt so much worse! I have read that sometimes the gradient climbs again after an initial drop, and my EP said something about mitral valve regurg increasing sometimes with a drop in gradient. I am extremely SOB doing anything. I cannot grocery shop or walk short distances without panting for breath, feeling like my legs weigh a ton, and getting dizzy. My meds have been increased again, but my heart rate is running in the 75-90 range while it was in the 55-60 range before.I know that Lisa and Sarah will advise me to seek out an HOCM specialist but the truth is I really admire and trust my cardiologist and my EP doc. The reson I am writing is to seek the responses of others who have had pacers/ICDs implanted and to see if any of you had this bad response. I was so hopeful that this would work for me and that it was the least invasive of all measures for those of us who appear refractory to medical therapy. I go back to my caardiologist on 10/15. Any ideas? Thanks for taking the time to read this very long post.By the way, I am 47, female, and the mom to kids ages 8, 10, and 13.

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

    [Re: symptoms worse after pacer]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-09-02 21:50

    Dear Vickie

    While I know that you really like your doctors, that doesn't mean that they are able to do the best for you. I had a doctor I thought was incredible and we had a great working relationship. He almost killed me and disabled my mom.

    Pacers and EP studies are not the top line treatment or procedures for HCM or HOCM. Period.

    Since you are in Florida, please consider Dr. Sherrid in NY or Dr. M. Maron in Boston.

    Sorry I'm telling you what you already know.

    all the best,

    Sarah

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

    [Re: symptoms worse after pacer]

    Author: Pat (---.d00832.dlup.digitaldune.net)

    Date: 10-09-02 22:37

    Dear Vickie,

    I have to underscore what Sarah says. If I really admired my physician and I were experiencing much worse signs & symptoms as a result of his treatment--or even despite his treatment--I would have to tell myself that I was not basing my judgement on the facts.

    I struggled a few months ago, Vickie, with seeking out an HCM specialist. Part of my internal conflict was that I worried I would somehow "insult" my regular cardiologist--who I really like & respect. I went to the specialist. The specialist has found that my former diagnosis was not accurate and is in the process of investigating further. My meds are being changed and I feel better many days.

    And what did my regular cardiologist say? He commented that the specialist I saw is an internationally-recognized expert and is pleased by what we're finding out! So the two will work together.

    As Lisa's been saying--You've only one heart! Do the best you can for it and for you! And if your physician is as good as you think he is, he'll be glad to work with an expert in the field.

    Pat

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

    [Re: symptoms worse after pacer]

    Author: vickie (---.se.client2.attbi.com)

    Date: 10-09-02 23:03

    Dear Sarah,

    I am trying to not feel like you just told me off. Of course from having read this board for awhile, I knew that pacers were probably not top line and I even mentioned this to my cardiologist, but he talked to this guy at Mayo and they thought it was worth a shot. I am still interested in others who have had this pacer/ICD done and if they had problems afterward, what was the next step ? Did you end up with the myectomy or alcohol ablation or were they able to tweak the pacer so it was more beneficial to you? And why, sarah, did you suggest New York or Boston for me? I was kinda leaning toward Cleveland if I do decide to go anywhere. Just like with anything else, no one can make up someone else's mind for them. I chose the pacer route because I was least afraid of it, it seemed the least invasive, and I could have it done locally. Maybe a bad decision on my part, but the only one I was able to make at the time- the only one I was ready to make.Thanks for your time.

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

    [Re: symptoms worse after pacer]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-09-02 23:38

    Dear Vickie

    I'm sorry if I came off harshly. I am very angry that there are still so many doctors running around trying things without being true specialists. I didn't mean to take it out on you.

    Mayo Florida is probably great, but they are still not the HCM specialists that the Mayo Rochester is(are). I only mentioned NY and Boston since they are closer. But Cleveland, Minneapolis Heart and Mayo Rochester are the other three to consider.

    I wasn't trying to run down your decision, but trying to say that you should have been given better advice in the first place so that you didn't have to try something that didn't or isn't so far working for you.Hopefully they can make some adjustments and you will start feeling better again.

    I hope you feel better soon and again, I'm sorry if my tone was off base.

    Sarah

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-10-02 08:05

    I think people come to this board just for the support of knowing that they are not alone ... they come to hear how others with their same conditions are feeling ... to hear what kinds of decisions others are making. They want to read honest answers ... but that doesn't necessarily mean they are going to act on it right away or if they will act on it, period. People are human and what works for one doesn't necessarily work for another. I know this first hand with my father. He wants to feel better ... but don't dare say the words “myectomy” or "MAYO CLINIC." Say it and be prepared to watch him lose his marbles! Watch his face get red ... know that his blood pressure is rising ... his thoughts are whirling ... his poor enlarged heart is beating faster than it can handle ... watch the horns stick out from his skull ... his eyes rolling to the back of his head as he hears the word "mayo" and then the word "clinic" ... listen to him yell and tell you for the one hundredth time that he doesn't want to hear it. Those words cause him to feel “fearful” and I think he associates those words with “death” and “dying.” To him it feels like he is near the end if he has to go there. He is an adult … not a child. You cannot force someone to do something they are not comfortable with. They have enlarged hearts … not minute brains!

    But, I do know that if the roles were reversed ... and he had my health and I had his HOCM ... he wouldn't stop at our local cardiologists office. He wouldn’t take me to see quack after quack. He wouldn’t waste my time with candy coated information and lies. No ... my daddy would take me with him and bolt through the doors of the Mayo Clinic (or another reputable HCM center) making sure I received the best treatment from the best doctors!

    Dad, like Vickie, knows their options. Some people want to try other things first ... take the less invasive route … and then if all else fails … then they will go to the top or try the "scarier" procedures. We need to respect them when they tell us up front that they do not want to hear something. By telling us ahead of time means that they heard us the first time! If we don't have any additional/beneficial information to offer ... then a smile and some encouragement always works! : )

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

    [Re: symptoms worse after pacer]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 10-10-02 08:16

    Hi Vickie,

    An ICD with pacer was the first thing that I had done. Have you told your doctors that you are feeling worse? When I first got the ICD I was having problems until they turned on the reactive pacing. I understand enough to get myself in trouble, so this may be wrong, but the reactive pacing let's the heart pump harder if it knows you are exerting energy (ie exercising). Pacer settings also are tricky. Prior to my myectomy, they tried DD pacing (hope that's the right term) which made me feel terrible. I stopped that after 2 days.

    As far as going to Cleveland or somewhere else, you seem like a candidate that should have been there awhile back. Heavy does of 3 different meds? I have to go with the you need to see a specialist NOW!!! As far as being scarred of the procedures, look at it this way, several members on this board have had myectomies done recently and we are all still here to talk about it. Dr. Smedira at Cleveland does alot of these procedures. They are not fun, the scar is long and it recovery is a bear, but I can say I feel better 6 weeks after the surgery than I did before.

    For me, my thought was life is too short to live with your restrictions if there is something you can do. I also have young children and I wanted to be there for them and be able to do things with them. Second, there was no way I wanted to be an experiment for doctors who did not see enough HCM. Going to CLeveland was a hardship on me and my family. Insurance may have picked up the hospital, but we paid the travel, hotel, etc. It was worth it.

    Sorry for the long post, but I feel like I have been where you are at.

    Jerry

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

    [Re: symptoms worse after pacer]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-10-02 08:52

    Vicky,

    I am limited for time at the moment so I will be brief. If pacing has not worked for you ... you are not alone and infact it only works for a very small number of people therefore it is not viewed as a standard treatment for the reduction of gradient in 2002...infact as far back as 1995-6 we thought it was not working. you tried norpace and that did not work for you either...

    That is the past... now lets look at your future.

    You have options -

    You have 2 options for setpal reduction - myectomy or ablation -

    In the opinion of the HCMA and after dealing with nearly 1600 families...this is what we suggest. Go to a center that can evaluate your condition and give you your optioins. If you go to a center that only preforms one of the procedures, in our expereince...thats what you will get, so go somewhere that can offer both.

    Jerry - I think your an ACE to comment on this one, as he was sure he was going to have one procedure...only to find out it never would have worked for him based on ALL the information.

    I am also sorry if you felt that Sarah was anything less then informative and caring, I know her well and know she gets upset when she sees someone in discomfort or pain when there were options available to not have that happen.

    I too feel that frustration from time to time as if clearer data was available in 1995 my sister would likely be alive.

    Vicky - we all want you to be well and will do what ever we have to do to help you get there. You are not alone.

    Your amoung friends!

    Best wishes, Lisa

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-10-02 09:27

    Lisa ... I am sorry to hear that your sister passed away from complications in 1996. What were they and from what procedure?

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

    [Re: symptoms worse after pacer]

    Author: beth (---.nyc.rr.com)

    Date: 10-10-02 10:33

    Dear Vickie --

    I understand your feelings about making your own choices and decisions about your care. But I feel compelled to tell you a story about a young woman. Please don't take this the wrong way. Your story and your attitudes about treatment remind me of my friend, not directly, but indirectly. And this story is for anyone and everyone who has yet to seek out a specialist.

    I was best friends with a young woman who was often negative about invasive therapies as well as drug therapies for her HOCM. She found a Dr. in new york city who provided her with an alcohol ablation procedure which was relatively non-invasive to treat her HOCM and she felt better for a period of time. In order to go through with that procedure she must have been feeling pretty bad prior given her negativity about treatment overall. Unfortunately, on May 21st of this year, she died suddenly and unexpectedly. The Dr. she saw was a fine doctor I'm sure. The tragedy is he was not a specialist in HCM and my friend lived in New York City but never found her way to St. Luke's to see people who specialize in treating her disease. Just a short cab ride cross town.

    What may have been missing in her treatment was a good understanding of her risk for sudden death. Other family members had died suddenly and young. We believe she probably should have had an ICD recommended to her and implanted. Noone knows if an ICD was ever recommended to her and we will now never know. We suspect not as in the emergency room where they declared her deceased, (she died on the street), ironically, the same hospital her cardiologist was at, we all recall hearing that he said there was no way of knowing this would happen as she was at low risk for sudden death. Yet, she died from V-Tach.

    At the time she was diagnosed I knew little about the disease, its treatment, the importance of specialists, etc. because she was pretty evasive about talking about her condition even when probed.

    Knowing what I know now, a little late, I would have argued with her to go see specialists in HCM. The folks at St. Luke's cross town.

    Knowing now that my friend never saw specialists in HCM, I am left wondering what if? Not to mention her husband, her father who lost his wife to HCM just 2 years prior to my friend's death and countless others. We are all learning to live with what can't be answered.

    You have a right to make your own decisions. Including the decision to see or not see a specialist. Just as my friend did who may well have rejected the notion of an ICD or other recommended treatment or drug therapy.

    But what we will now never know is if her decisions for treatment were based on the best available knowledge and expertise and advice from specialists in the disease she could have..........or were they were based on only what she knew at the time? Or if she actively chose to not see a specialist? We just don't know.

    I'm still plenty mad at her for all that is unknown. And I'm still plenty mad at myself.

    I believe everyone on this board with HCM respects every individual's right to make their own decisions about treatment. Who knows better what it takes to go through treatment and management of the disease? Everyone is different and everyone has different tolerance levels for treatment and attitudes about it.

    No matter your ultimate decisions for treatment, I tell you this story because I hope and pray for everyone that they seek out the best possible information available from specialists because it is available. Because my friend, who died young and beautiful at 40 years old, with the promise of a wonderful life, didn't seem to have that. The only sense I can make out of this is to hope and pray that others gain access to what she never chose to gain access to or just didn't out of ignorance.

    Of course, the decision is yours and yours alone.

    But please think hard about why seeing a specialist so you know that you have the best information possible with which to make your decisions is something you would not pursue. And please think about the people who care for you too. I'm sure you are well loved and those who love you want the very best for you in terms of making your decisions. As we all did for my friend. Had we only known.

    Good luck to you and I hope you feel well often and soon.

    Best regards,

    Beth

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

    [Re: symptoms worse after pacer]

    Author: Nancy Sarvis (---.sj3.marketscore.com)

    Date: 10-10-02 12:00

    Vickie, my name is Nancy Sarvis.I"m 42 yrs old. I had a pacemaker in 2000. My gradient and symptoms also went way down, for a very short time. After just a couple of months all my symptoms were back and a few new symptoms were added just for fun. The cardiologists I've had locally would do the tests, see bad test results, then listen to my wierd smptoms ("at times there is a choking sensation-like all my heartbeat is in my neck") and then blow me off- "I think you are very excitable and some of these symptoms are possibly being worked up if you get excited." Nothing excites me like a cardiologist not taking me seriously! It turns out I had a lead wire not responding on my pacemaker. For 2 years they would readjust the pacemaker, trying to get the initial results back. I finally saw Dr. Lever @ Cleveland Clinic in Sept 2002. Dr Smedira did a myectomy. I'm still recovering but the echo done before I was discharged showed a resting gradient of 14 and a stress gradient of 40 with amyl nitrate! My pacemaker never competed with these gradients. I also choose the pacemaker as the least invasive of procedures. That decision was a good one at the time.It just didn't have the results I'd hoped for so it was time to try again. The surgeon that was going to do the myectomy here had only done 7 ever in his career. Dr. Smedira does about 7 a week. It is great that you have confidence in your cardiologists. Alcohol ablations are done by cardiologists. I personally would want a cardiologist with a lot of experience at ablations to be the one to perform it-there just isn't a substitute for experience. (I wasn't a candidate for ablation, the area I would need to shrink would have required 3-4 heart attacks.) If you choose to have a myectomy- which by the way has been a tried and true method of reducing gradients and symptoms for a long time- it will be done by a cardio- thoracic surgeon- not your cardiologist- so you may as well get one of the best. Dr. Smedira @ Cleveland is very good.And by all means keep doing what you are doing, asking questions, gathering information...that way maybe you can make a good decision, get the help you need and get back to your life...better than ever! God bless you. Nancy

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.biz.dsl.gtei.net)

    Date: 10-10-02 12:16

    Lisa or Sara ... Do you think the MUSC will be straight with my father and let him know if he TRUELY isn't a candidate for the ablation? I thank you from the bottom of my heart for all your time, patience, and information. I am passing all of your information along to my father in a "non-invasive" fashion and he is finally listening to me and responding in a non-defensive manner! I have finally figured out a way of wording this subject to him that doesn't sound pushy, scary or biased and he's responding to me and questioning me!

    Reading this message board and hearing how people with HOCM/HCM feel and respond is helping me with my father so thank you to all of you who take the time to post each day! I just wish I would known about his diagnosis earlier and found this site earlier ... but I guess the saying, "better late than never" is true!

    I also wish my father would post for himself rather than asking me to dot it for him ... but I love him so I am going the extra mile for him!!!! Dad ... I love you!

    I hope you are feeling well today and SMILE! You are not alone!

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

    [Re: symptoms worse after pacer]

    Author: vickie (---.se.client2.attbi.com)

    Date: 10-10-02 16:44

    Hello everyone ,

    I really didn't mean to start a thread about when it is best to seek the advice of a specialist, but it seems that is what has happened. I thank everyone who responded as i am sure you are trying to guide me on the right road, but that is a decision that I will have to make on my own. I was hoping to get some information from other people's experiences who had had pacers/ICDs put in. I am trying to understand why I am more SOB. What wuld cause that? Could it be attributed to mitral regurg or diastolic dysfunction? If my gradient fell so low, I just don't get why I feel worse than I did before.Could my gradient have risen that dramatically in just the month that I have had this thing? And if my gradient is still low (25 after pacer implanted) and my septum is only 1.6-2.0, am I still a candidate for the other types of procedures? I am imagining that my gradient has in fact risen again but I really don't know. I appreciate Erica's comment that sometimes a smile and some encouragement will help. I am terribly discouraged at this point. I probably will end up seeing a specialist . I am confident that my cardiologist would understand. He is a very caring man. Thanks to all of you who truly care.

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

    [Re: symptoms worse after pacer]

    Author: Nancy Sarvis (---.ord.marketscore.com)

    Date: 10-11-02 09:23

    Vickie, pacemakers help very few people with their symptoms. This fact could explain a lot of the symptoms you're feeling. Your pacer could need adjusting, a lead wire may have moved or is not responding but even these may not be the problem. The problem is that pacing is not usually an effective therapy for HOCM. Your gradient could be up again.This needs to be checked out ASAP. I know how frustrating it is to set your hopes on a pacemaker only to find yourself back at square one. You will feel much better when you have the pacer aand your gradient checked. Your septum is probably plenty big enough for either of the other procedures.However size isn't the only question here. You need all the information available about both options to make a good decision as to which will be right for you. A specialist will be the most qualified person to assist you in this very big decision as they deal with this disease daily and are up to snuff on the very latest information available. The fact that other therapies are available to you should encourage you. I am truly sorry your symptoms are back. But I see a woman who is trying to get it all figured out, and you will ! Hang in there. There is a very good chance you won't always feel as bad as you do today. God bless you with peace and wisdom.

    Nancy

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

    [Re: symptoms worse after pacer]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-11-02 16:02

    Dear Vickie,

    Good doctors are very happy to have their patients see a specialist. Since your doctor has already been on board about consulting someone else, it doesn't sound like he would have a problem with it.

    Most of the questions you asked about your condition can only be answered by a specialist. We can't tell you what you are a candidate for or not at this point. I do know that some people who got pacers later had myectomys, but I can't tell you if that is right for you.

    THere are a million reasons why the pacer may not have worked, and only an HCM specialist who has looked at you is going to be able to tell you why exactly.

    I am sorry it isn't working for you. I do hope some re-programming helps.

    take care,

    Sarah

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

    [Re: symptoms worse after pacer]

    Author: Mary Sharp (---.net297.fl.sprint-hsd.net)

    Date: 10-12-02 17:43

    Vickie,

    I know alot about how you feel on not wanting to do the most invasive procdures. A couple of months ago I was seeing a group of doctors that kept telling me that I am perfectly fine and my symptoms were not because of my heart. I so wanted to believe that because I am only 22 and just really getting my life started. My life had been an incredibly bumpy road and I had to bust my tail for everything I got. I've been on my own since I was 17 and I was just too independent to be sick. But my local cardiologist and a lot of people on this board kept telling me that something wasn't right and I should get to a specialist which I live in Florida and no place even remotely close. So the other cardiologist said that an EPS study would tell me everything about my chances for sudden death. Sarah and Lisa both gave me the facts about how they didn't really tell much of anything for HCM. I thought that was the easiest thing to do because I was not too keen about flying out of state missing school and work just to be told I was sick. I JUST DIDN'T WANT TO HEAR THAT! I guess I was in denile. So the EPS study was done and it turned out to be a complete disaster! I ended up having to defibrillated while I was still awake and the job had been done so poorly that it was over a week before I could really walk normally.Oh and to top it off the study was inconclusive. So much for a less invasive procedure. Everything has it's risks!

    Well I guess I will get to the point now. Yesterday I was up in Boston seeing the specialist I should have seen months ago but didn't want to waste the time and energy doing. Turns out I do need an ICD because I am at a substantial risk for SCD. As I was getting done with my appointment Lisa was there and we talked a bit. The first words out of my mouth is "you were right about those cardiologist not being right. I should have listened to you" In turn she said " You had to learn for yourself so I didn't push you on it". So I guess the moral is sometimes the easiest way is the most painful even though it seems to be the least painful.

    mary s.

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-12-02 19:18

    Mary ... thank you for sharing your story. I am going to share it with my father. Glad to hear you went to see the specialist! I wish you well. : )

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-12-02 21:03

    Mary ... how do they determine whether or not someone is at a high risk of SCD? How did they determine this in you? Thanks!

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

    [Re: symptoms worse after pacer]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 10-13-02 15:42

    Erica,

    There are typically six things that they look for I believe.

    1. Sudden cardiac death in a realative.

    2. Septal wall measurement of 3.0cm.

    3. Non-sustained V-tach or V-tach on a holter monitor.

    4. Adverse blood pressure response to stress test.

    5. Syncope or near syncope.

    6. Previous SCD.

    I had four of the six myself. 1.3.4,5. I think it takes to for an ICD or 1 depending on what it is and how bad.

    Mary S.

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

    [Re: symptoms worse after pacer]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-13-02 16:17

    Hi,

    Just to clarify a couple things that people always ask....

    Septal walls at 3 or over 3

    "adverse" means that your bp either dropped or stayed the same or peaked too early and then dropped when you exercised.

    Actually, if you had "SCD" before, then you wouldn't need an ICD --or anything-- anymore. This risk factor is usually listed as a heart attack. ; )

    If you have 3 or more risk factors, an ICD will be recommended. If you have only 1 or 2 risk factors, it becomes a little tricky and it depends on what they are. Massive septums carry a lot of weight (pun intended), as does vtach. Once or twice someone who has lost a lot (like 3 or more) of family will get one even if that is the only factor, but that is pretty unusual for that to be your ONLY risk factor.

    Thus bringing us, once again, to the Greek chorus of the HCMA: "see a specialist, see a specialist, see a specialist" so you can be properly evaluated.

    take care

    Sarah

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-13-02 18:46

    Question ... what is "vtach?"

    : ) Erica

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

    [Re: symptoms worse after pacer]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-13-02 19:01

    Dear Erica,

    "vtach" is short for ventricular tachycardia (also called VT a lot or NSVT for non-sustained ventricular tachycardia --which are short episodes of vt).

    VT is considered a sign that you are suseptable to vfib (ventricular fibrillation). If you have vfib, you will want to be near an automatic external defibrillator (AED) or have an implantable cardioverter-defibrillator (ICD).

    S

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

    [Re: symptoms worse after pacer]

    Author: Erica (---.atlnga1.dsl-verizon.net)

    Date: 10-13-02 19:57

    Sarah ... Thanks for your prompt reply! Well, dad is scheduled to have his ablation one month from today to be exact with Dr. Spencer at MUSC. I pray it goes well. He is in so much discomfort ... SOB, syncope, severe fatigue, and pretty bad angina to name a few of his symptoms. He is pretty positive about wanting the procedure and I just hope they turn him away if he is not a candidate. I keep telling him that just because his cardiologist recommended it doesn’t mean he is a “true” match for the procedure. I say this because his cardiologist is not an HCM specialist. I don’t know why he is so adamant about going to one of the HCM centers. I can’t figure out why he is so afraid. He believes that they will try and discourage him from the ablation and tell him that they prefer the myectomy, which he doesn’t want, period. And of course I support him whole-heartedly as it is his decision and his heart.

    I looked into which Rx’s he is taking and learned that is taking one of the following meds each day: 40mg Zocor, 10mg Norvasc, 50mg toprol-XL, 80mg diovan and one 325mg tab aspirin. Does it sound like he is overmedicated? He is taking more meds than I have seen posted. I also found out my family history on his side of the family ... he believes his father died from an artery or a vein breaking away from the heart & LBP, his Uncle passed away from a heart attack, his grandfather passed from a stroke and heart attack and his grandmother died from a stroke and heart attack. They must have all had HCM or HOCM.

    I hope you enjoyed your weekend!

    ~Erica

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

    [Re: symptoms worse after pacer]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 10-13-02 22:30

    Dear Erica,

    In my experience, men do tend to decide what the doctor will tell them before they go.

    Please pick up the November issue of Esquire magazine (Pierce Brosnan is on the cover). THere is a story about a man who had an alcohol septal ablation for HCM!! The man went to the best guy in the whole world for the procedure and they still had to do it twice! (DON"T TELL YOUR DAD THAT, Just let him find out for himself). But it underlines why it is so important to have it done by someone who knows what he is doing. If he is a candidate, they will do the procedure. And heck, he probably is --who can say?

    As for dad's meds, it is a bit of a hodge-podge but nothing shocking. I'm not familiar with diovan though. Could have been CAD in the family too, HCM doesn't prevent you from having other heart problems but it does sound like it is back there somewhere.

    good luck,

    Sarah

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

    [Re: symptoms worse after pacer]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-14-02 10:14

    Erica - Dad needs to believe and he may well have placed his faith in the proper procedure for him...You need to stay by his side, be his advocate and be his daughter...

    While ablation is not viewed as the standard of care for those with HCM it is a valuable tool and one that may offer him the improved quality of life he seeks.

    Best of luck to you and your dad...keep us up on the progress.

    Lisa

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

    [Re: symptoms worse after pacer]

    Author: Laura (---.portland.med.va.gov)

    Date: 10-14-02 13:27

    Hi Vickie,

    Sorry to hear you are having problems, I am new at this message board and yet to write my story as it is long and i just start crying when i think of doing it....

    I had my pacer/defib placed May of 2000 and i swear i have nothing but problems ever since. The pain afterward was at times unbearable, once it healed i thought all would be okay but NO the pacer wire lead Fractured in January the next year 2001. I was put in the hospital as a result of overcompensation from the fracture as every time i moved my arm it misread a need to push my heart harder as a result i was going into V-fib, very bad. At that time i was tired all the time and up until I had symptoms of heart attack ie. pain down left arm so bad i could not move it, it was not realized that it was a bad lead.

    I hope this helps....

    Good Luck

    Laura

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

    [Re: symptoms worse after pacer]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 10-14-02 17:22

    Laura - You bring up a very good point - ICD's are not toys and something not to be jumped into...they carry risks and possible "side effects" such as some you noted. On the other hand...if you need one there is nothing like the peace of mind knowing it is there, risks and all.

    As with just about everything with HCM...it is not simple.

    Best wishes and welcome to the board we are happy to have you.

    Lisa Salberg
    NOTE: This is a post from the previous forum message board.

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