If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Different Doctors Measure Differently

Collapse

About the Author

Collapse

Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Different Doctors Measure Differently

    I had taken my son to two different cardiologist in the last month. One got a measurement of his septum as 18 and the other one said it was around 15-16. I know it is not much difference in the measurement, but the one echo technician said alot of people also measure the septal perforator and they should not actually measure that. They should see where it is separate and not include that in their measurements. It is kind of confusing to me. Exactly what is a septal perforator.

    Also, they did the stress test on my 11 year old son on Wednesday and he did good. They had his heart rate up to 200. They did the stress echo and his gradient only got to about 20. He did have some mitral valve regurgitation. The doctor seemed very happy with the results and told us to just come back in 3 months. They told him to go ahead and play baseball and just to continue taking his 25 mg of Toprol Xl each evening. Does this sound about right to you experts out there?

    Thanks for all the help!
    My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

  • #2
    I'm glad his tests went so well! I hope he continues to have few problems. As far as playing baseball goes, though, I'm not so sure that I'd let mine play. I hope others will jump in here and give you more advice. I'm admittedly over-protective.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Janet,

      Nobody here on the board should be considered experts, so please do not rely on anything you read here as being actual 'medical advice'. That being said... about the best any of us can do is to share our own experiences with you, and hope that it leads you to seek more and better answers from your doctors.

      There is definitely an art to performing an echocardiogram. My septum has varied by as much as 6 mm on any given test, and those measurements were taken by HCM specialists. I would think that especially in a young person who is still growing, you will find differing results. This is not necessarily a cause for concern.

      The actual septal measurement is also only one factor in treatment, which usually revolves around treating the symptoms themselves. We have folks here on the board with septums of 3 cm or greater (Reenie's hubby for instance) with few symptoms.. and there are others like myself with relatively small septums that have had disabling symptoms. Although we strive to get the most accurate results possible, i've found it best not to get too hung up on the actual numbers.

      I'm not sure what to say about your 11 year-old whom your doctor told it was okay to play baseball. Even with proper treatment through meds or surgery, it is usually not advised to engage in any activity that requires sudden bursts of energy. There are those who will disagree with me however. Have you sought out the advice of an HCM specialist? If not... this might well be your first course of action.

      Please take care, and continue to let us know how everything goes.

      Jim
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #4
        Hi Janet,
        I have been wondering about James and how he did on his stress echo. As you know, I have a 13 year old son who also has HOCM and is a baseball player. He had a stress echo in September, and he had trouble getting his heart rate up due to the Atenolol, but with his rate up to about 140, he did have a gradient of >70. This was associated with chest pain. My son was also cleared to play baseball. He has been prohibited from playing basketball, football, soccer, and running track. Baseball and golf are the 2 sports his doctor gave him permission to play. (At this point, he has no interest in golf.) Some experts do advise against sudden bursts of running, but these do not seem to bother my son at this time. He has trouble with exertion that is prolonged (for example, running laps) where his heart rate gets high. His coach knows his limitations and abides by them. However, I know that the older he gets (and the more competitive the game) and the larger the field gets, even baseball may prove to be too much. For now, we are thankful that his doctor has given him permission to play. I am also encouraging him (more like pounding it into his head) to let us know if his symptoms develop while he is playing and to STOP immediately if they do.

        Comment


        • #5
          Vickie,

          I do not mean to sound flip here ,but how is it that baseball is safe and basketball not. I think you acknowledge this but say that at this time the bursts do not effect your son and that some experts advise against sudden burst of running. I believe it would be more precise to state that ALL EXPERTS would advise against sudden burst related activities of any kind. I am assuming that the reference to " experts " means HCM Specialists. Your son is per your information obstructed and evidencing an elevated gradient with increased heart rate. With HCM there is no sure predictability as to what type of exertional activity could lead to an a fatal arythmia. Does your son have an AICD? I am sorry and do not wish to be an alarmist but warning bells were going off in my head as I read your post. The literature is vast and wide but does cross over in substantiation of facts. Fatal arrythmias have many times been known to occur later and sometimes well after the activity ceased.

          Personnally for me and for some others, we were encouraged to push ourselves harder and we pushed our hearts. Although there is no way to categorically prove that this advise by some of our "non -expert " doctors caused more harm, it is safe to state that without proper care , treatment , medication and lifestyle changes, the HCM heart can be further injured and remodeling can occur as a result which is deleterious to the health , progression of the disease and function of the HCM heart.

          If you have not made a phone call to Lisa I think this would be a good time to plan one.

          I wish you all the best and I am a concerned about what you have been advised. Please stay in touch.

          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            From my experience my children were never allowed to play ANY coached sports.
            Jen

            Comment


            • #7
              So now I really don't know what to do. The doctor has already told James he could play. I do feel like that with this disease there is no room for error. So from what I understand there is no clear set formula as to what will cause sudden death. Even though James did not have a huge obstruction I guess that does not take away the risk for sudden death. From reading posts about sudden death on the forum, it seems that quite a few people had no symptoms prior to their sudden death. That is so scary!

              I have been on the internet all day and it seems there are quite a few opinions out there on this. Is there anyway to get a phone consultation with the doctors at Cleveland or Mayo Clinic that is a HCM specialist. I would imagine you would have to go out there.

              Anyway, I am so thankful to be able to come to this forum. It makes you feel like you are supported and everyone is so sincere and so caring. Thanks for all that read and respond! You all are a blessing.
              My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

              Comment


              • #8
                Hi Pam,
                Here is how we made the decision to let my son play baseball:
                baseball and basketball are in no way played with the same level of intensity. Basketball requires almost constant running whether on offense or defense. Baseball requires running only when you hit the ball, and at that it is not sustained running. (And unfortunately, you only get to bat once in a blue moon.) On defense, the only running is if you play in the outfield and have to occasionally run after a fly ball. Lisa sent me an article a few months ago called Recommendations for Physical Activity and Recreational Sports Participation for Young Patients with Genetic Cardiovascular Diseases. It lists basketball as "generally not advised or strongly discouraged." It lists baseball as "to be assessed clinically on an individual basis." My son played basketball and ran track and had chest pain. He was diagnosed at age 12 and then those activities had to come to an end. No question. He did so willingly (although I can't say he's thrilled about it). He CAN play baseball without symptoms. All of his teammates and his coaches are aware of his situation. He is watched like a hawk. Two different pediatric cardiologists plus his regular pediatrician okayed him to play baseball. We are thankful for his opportunity to play something that is very dear to him. I am sure that you know that it is hard to be a kid with this disease. Of course it is hard for all of us but kids are a little special. They have to "fit in." We are working hard to allow him to have as normal a life as possible. He can have symptoms from something as simple as carrying a backpack that is too heavy (especially if he has just eaten or walking too fast). But he can play baseball without diffficulty. I am not trying to advise Janet on what to do for her son. Everyone is different, and everyone has to do what is right for their child.
                This is what works for us RIGHT NOW. We will not hesitate to change if need be. Thank you for your concern. I appreciate it.

                Comment


                • #9
                  My son, who will be 13 next month, was just diagnosed last week with hypertrophic cardiomyopathy. Scary stuff, and not expected at all. He was actually being screened for a hereditary aortic root enlargement/aneurysm, which he thankfully does not have. We have no one in the family known to have HCM, and most have had eches due to the other problem that is hereditary. We don't have much info on my husband's family so we will probably need to look there (they arent very close, and we don't have much contact with them.)

                  Anyway, I have been reading a lot over the weekend, and saw some posts about athletics. My son is very athletic- he is in the midst of All Star Basketball, and will be playing on a travel baseball team as soon as the basketball tourneys are over. Sports are such a part of his life that some of the posts really upset me. I called his doctor today and he said he can continue to play any sport he wants becasue despite the HCM, his heart function is perfectly normal and his has no symptoms. They will be monitoring him by echoes as he is in puberty and really growing quickly (he is already 5'9" and about 130 lbs.) but he is not in need of any meds and has no restrictions based on current findings.

                  I see many posts about kids with much more severe problems than his, and also the number who have lost undiagnosed family members to sudden death, even some young kids. I am scared about what the future could hold, but thankful it has been caught early enough to have proprer monitoring.
                  Jill

                  mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

                  Comment


                  • #10
                    Originally posted by Jillmgk
                    My son, who will be 13 next month, was just diagnosed last week with hypertrophic cardiomyopathy. Scary stuff, and not expected at all. He was actually being screened for a hereditary aortic root enlargement/aneurysm, which he thankfully does not have. We have no one in the family known to have HCM, and most have had eches due to the other problem that is hereditary. We don't have much info on my husband's family so we will probably need to look there (they arent very close, and we don't have much contact with them.)

                    Anyway, I have been reading a lot over the weekend, and saw some posts about athletics. My son is very athletic- he is in the midst of All Star Basketball, and will be playing on a travel baseball team as soon as the basketball tourneys are over. Sports are such a part of his life that some of the posts really upset me. I called his doctor today and he said he can continue to play any sport he wants becasue despite the HCM, his heart function is perfectly normal and his has no symptoms. They will be monitoring him by echoes as he is in puberty and really growing quickly (he is already 5'9" and about 130 lbs.) but he is not in need of any meds and has no restrictions based on current findings.

                    I see many posts about kids with much more severe problems than his, and also the number who have lost undiagnosed family members to sudden death, even some young kids. I am scared about what the future could hold, but thankful it has been caught early enough to have proprer monitoring.

                    Unless your doctor is a specialist in HCM, I would not trust his judgment. I would strongly recommend having your son checked out by an HCM specialist at one of the major centers before allowing him to continue to play. Your local doctor may not be up on the dangers of HCM. This is a very mysterious condition your son has. Just because he does not possess any noticeable external symptoms does not rule out the possibility for sudden death - especially if he continue to play highly competitive sports (like basketball). There are dozens of stories of undetected HCM in athletes who were not as lucky because they did not know they had any danger. (Research updates/Media) You at least are now informed and can make educated decisions for you and your family.

                    I wish you and your family only the best!
                    Thanks, Tim
                    Forum Administrator

                    Comment


                    • #11
                      Janet

                      You have some difficult decisions to make, be sure they are medically educatied decisions.
                      I would highly doubt yourability to hold a "phone" conversation with an HCM Dr @ Mayo/Cleveland. Having been treated at both places, they don't do things that way. TheirSOP is to receive all Medical Records, possibly speak with your local Cardiologist & then they access your specific situation. A Member of their staff calls & sets the appointments (they allso want to do their own echom, blood, EKG etc). It's necessary for you to fit into their schedule-you don't at this point speak with the Dr. This is an investment in time & $$. Perhaps you caould call Lisa for a more local referral
                      If this were my Son I would want to see an HCM Specialist, B4 making any decisions.
                      Good Luck
                      RONNIE

                      Comment


                      • #12
                        Hi Jill,
                        Just wanted to let you know that I empathize with what you are going through as my 13 year old son was also diagnosed last year when he was 12. He also was a competitive basketball player and ran track and played on a travel baseball team. All except baseball have now been taken away. This was a big adjustment for him also, but he has surprised me with how well he has handled it. It is also a very fine line we as parents must walk in order to protect our children without smothering them. We have seen 2 different ped cardiologists who both agreed that basketball is not a sport for anyone with HCM. Try to find the article that I mentioned in the above post. It is actually a table that is a little hard to read, but full of guidelines for participation in various sports. My son is still able to enjoy baseball at this time, and is talking af other things he can do with his life like being a sports commentator or a sports writer or anchor. If your son is prevented from playing the sports that I know are very dear to him, I hope that he also can find the courage and integrity it takes to get through this. He may surprise you, too, as my son has. I wish you both the best.
                        Vickie

                        Comment


                        • #13
                          Hi Jill, I am so sorry about the diagnosis of your son! I know this is alot for you to have to deal with. I agree with seeing a HCM specialist. James has no symptoms either and they have put him on beta blockers. The doctor said beta blockers can reduce the obstruction and sometimes help the thickening. He has a very small obstruction.

                          I know it is so much to take in and so much to consider. There are so many uncertainties with this disease. There is not a set pattern that everyone goes through once diagnosed. With the possibility of sudden death you have to make sure you are making the best choices. How is your son handling it? I know James didn't really understand for a while what it meant. He understands more now.

                          Just find out all you can and ask tons of questions. My exhusband was diagnosed in 1998. I knew alot then. I had quit reading about it until my son was diagnosed. I know just being a mother it is so hard to deal with. You want everything in your childs life to be perfect and wonderful. This is so hard. But I am sure you have the courage and strength that we as mothers have to be there for our kids. I'll be thinking about you! Janet
                          My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

                          Comment


                          • #14
                            Well, maybe I’m all wet on this issue, but it seems to me that it isn’t that hard an issue to deliberate on. On the one hand I have heard and read quite a number of cases where someone’s first indication of something being wrong was in fact sudden death. Frequently this happens on the field of play, but there are numerous instances where death does not strike until hours later. I can also project that there must be cases where death occurs so much later that the two events are not seen as cause and effect.

                            If I had to choose a course of action for my child, once he or she was diagnosed with the disease, I would consider only a few things. 1) Are there any recorded instances where a blood relative has suffered sudden death? 2) Is participation in the sport more important than his or her life? 3) How grounded is the doctor in HCM, and if he is considered to be well informed, how does he assess the risk factors to the child’s life?

                            I would absolutely bring my child into the research and understanding of the situation, guiding him as necessary for his age and understanding, and I would help find viable alternatives for the competitive and stress related sports.

                            If placed in a situation of choice, I would much rather be accused of being overprotective of a live child then being accused of not sufficiently protecting a dead child. With the possibility of living a full lifetime, why would anybody risk ending it so soon?

                            As I said at the beginning, I may be all wet on this issue, but to my eyes there is no way to make that scale balance.
                            Burt

                            Comment


                            • #15
                              I wonder myself that if some 'sudden death' incidences have occurred 'on the bench-after sitting for 5 mins' as well as 'on the court-where all the action is', then at what point do they decide that the 'sport in question' had/had not contributed. Perhaps sports has been blamed far more then necessary.
                              That said, I will certainly be the first one to yank my son out of hockey should he develop HCM. Even though my husband and I have different opinions on that.

                              Our insurance company won't insure me because I have HCM. They don't ask if I have symptoms or how high my gradient is-it doesn't matter. For them, it's enough that I have it...PERIOD. With a complicated disease such as HCM, there are too many variables & gray areas, and we have barely scratched the surface of what it means to have HCM/HOCM.

                              My first cardiologist told me no contact sports and no sky-diving(aw shucks-I loved it too!). It was impossible to decide which sports were safe and which were not, with only that bit of info to go on.
                              So when it comes to my kids playing sports, instead of deciding based on symptoms and measurements, its simply, if he has HCM-he doesn't play.

                              He will thank me when he's sitting in a retirement home reminiscing 'bout the good ol days.

                              This is only MY opinion on sports and HCM, I'm sure others may disagree. Take care everyone.

                              Pam
                              It's not what you gather, but what you scatter that tells what kind of life you have lived.

                              Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                              Comment

                              Working...
                              X