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.

Question about Resting Obstruction

Collapse

About the Author

Collapse

kathyn2 Find out more about kathyn2
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Question about Resting Obstruction

    I was reading a journal article on this site regarding increased mortality if you have a resting obstruction which I do. I couldn't find any info regarding treatment for the obstruction. I may sound very stupid but does a myectomy remove the obstruction? If you were to undergo a myectomy does it increase your life span? I had read in the past that myectomy and septal ablation did not increase life span but just helped symptoms. Also, if you are one of the folks that would be a candidate for septal ablation, could it remove the obstruction as well as myectomy. Notice I said 'could'. Any info is appreciated. Basically, if you can remove the obstruction due to one of these procedures, does it or can it prolong your life?

  • #2
    Procedures to remove obstruction include myectomy (the gold standard) and alcohol septal ablation. While the data is not clear at this time if the procedures actually prolong life it appears clear that reduction of gradient may slow progression of symptoms and thereby improve quality of life...this may also include prolonging life.
    did that help?
    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)

    Comment


    • #3
      well, it helps a little but I wish their research would have included whether the procedures to reduce the gradient helped with mortality! That sure would be nice to know. Is anyone doing research on this?

      Comment


      • #4
        Yes, it is ongoing... the one thing that is clear is that it does not increase longterm mortality, it is very hard to know if it helps long term mortality. As time goes on data is collected and reviewed..and we learn.
        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)

        Comment


        • #5
          Lisa, repeat that again? It sounds like you said the same thing in 2 different sentences!

          Also, is there a hcm center (or more) that are doing more of the septal ablations than others? Is there anywhere to find out info on how many have been successful or if many have experienced arrythmias in the last few years since their ablations?

          Comment


          • #6
            We can not really tell if it helps long term mortality for the simple reason that HCM is a life time disease so the question must be at the time of death (be it 90 or 50 or something else) did the obsturction cause this person to die at this time or did HCM cause it.
            On the otherside when we look at life spans for those with HCM we can see that those with obstruction who have a septal reduction do not die as a result of the procedures (more know about myectomy..some questions still about ablation) and therefore we know they do not die as a result of a procedure.
            So here we are in the middle... does a person with HCM live longer if they have septal reduction then they would have without it.... likely so but not 100% clear...we know that it appears that those who have septal reduction have less symptoms and then we know that in most cases quality of life is improved.
            to answer you original question"If you were to undergo a myectomy does it increase your life span? " - this is unclear.
            Sorry wish I had a yes or no answer...we are still looking at this.
            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)

            Comment


            • #7
              Just a quick question. My husband was told that he has an obstruction. Is this a resting obstruction? or is this something else? Thanks

              Comment


              • #8
                Resting means that when you heart is in a normal state there is a gradient..provocable means that when you are stressed (treadmill test, chemically stresses or valsalva) there is a gradient..in some cases there if there is a resting obstuction it will increase with "stress".
                Hope it helps,
                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)

                Comment


                • #9
                  Thanks for the information. I have no idea what kind of obstruction he has, but I will find out. What I do know is that his obstruction is considered severe. He will be visiting Dr. Wigle in April, I will add this to my list of questions. Thanks again.

                  Comment


                  • #10
                    Kathy,

                    Let me use myself as an example. Because of my obstruction prior to my surgery, the leaflets of my mitral valve were being pulled open during heart contractions due to the eddys and velocity gradients in my heart. My specialists could not determine prior to surgery if the valve was working normally or would need replacement since this problem occured during rest.

                    When the valve was pulled open, it would hit the obstruction. As it was explained to me, this condition could lead to valve failure at some point in the future. I have learned that when the mitral valve fails, this could lead to serious health issues.

                    I think that the Myectomy or SAA in removing the obstruction removes the symptoms, and also eliminates other heart problems which may be caused by the continued function of the heart under obstructed conditions. Although I still suffer from HCM, I believe that the elimination of my obstruction will over the long term increase my chances for a normal lifespan.

                    Bob
                    Cleveland Myectomy Crew
                    Member since November 2002

                    \"Chance favors the prepared mind!\"

                    Comment


                    • #11
                      Hey Bob (and everyone else too),

                      Sorry to butt in here, but you seem to have a good handle on the obstruction issue.

                      My septal thickness is 1.5cm, which is certainly on the lower end of the scale, however it's giving me a bit of an obstruction... 100mm gradient, at rest. It has yet to be tested under stress. My doctors canceled the stress part of my testing, presumably since the gradient was so high at rest. I'm assuming here, because i have not yet heard otherwise, but possibly they want my gradient to drop a bit before they even try to test it under stress?

                      With a thickness of 1.5cm i'm told that myectomy and alcohol ablation are not options, so that leaves me with medication only. How successful was medication alone in treating your obstruction prior to surgery? I get the impression from your post that sooner or later i'm going to need mitral valve surgery. Any feelings on this?

                      Thanks!

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

                      Comment


                      • #12
                        Jim,

                        First thing, your mitral valve may be functioning normally. Please, no one infer from my post that just because there is an obstruction, that you will need valve surgery in the future.

                        OK, in my case my septal measurement is 1.7 cm, but higher up near the exit to the aorta it grew to 2.7 cm. Think of it as a bulge. One of the mystries of HOCM is why this area thickens more than others. Because of this bulge, my resting gradient was about 75 with a stress gradient of about 125. Medications are given to relieve symptoms. In my case, some symptoms got less but others remained. I tried all levels of dosages and different meds in combination but never could get relief. My murmur was still loud even under high doses of meds. I finally came to the conclusion that meds were not the answer and looked elsewhere.

                        Jim, first are you sure that the 1.5 cm number is the size of the obstruction or just the measurement of the septum futher down? Have you talked with your doctor about heart function and if the mitral valve is working properly? Are you seeing an HCM specialist? I know that you have been corresponding with Lisa and others about other issues, and apologize if I am asking questions you have already answered.

                        Let me know if I can help.

                        Bob
                        Cleveland Myectomy Crew
                        Member since November 2002

                        \"Chance favors the prepared mind!\"

                        Comment


                        • #13
                          With a septal measurement of under 1.6 Ablation is not an option for septal reduction... myectomy is still an option.
                          It is odd but very true that some have smaller septal measurement yet have large gradients... In fact it seems that we have had a run on this over the past few weeks...Jim your not the only one.
                          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)

                          Comment


                          • #14
                            Hi Bob, and thanks! (Lisa too)

                            Yes, it is my septal measurement that is 1.5 cm. However, i've had enough echocardiograms done now that i was looking at the monitor pretty closely when the technician was doing the measuring. I remember seeing numbers like 1.8 and 2.2 as she was measuring different parts of my septum, however the final report hadn't yet been completed when i left the clinic so maybe the official numbers aren't in yet. I do also recall seeing my gradient measured and it was anywhere from 5 to 7 m/sec so i do believe that 100mmHg is correct. This is resting, i have not been tested under stress.

                            I have seen a specialist, spoke with him on the phone last tuesday, and on wednesday emailed a list of questions to him regarding all of this. It's been almost a week and i haven't heard from him, so i may place another call tomorrow.

                            My increased dosage of Toprol-XL does seem to be slowing my heartrate some, however it is still a very 'hard' beat that i feel pretty consistently, and especially when i am trying to sleep

                            Please do not mistake this as meaning i am impatient with the meds or not willing to give them an honest try. That was never the case. Quite frankly, i can't afford anything else anyway so i would like very much for the meds to do the trick. I just wanted to know your personal experience with your meds, and thanks for your post!

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

                            Comment


                            • #15
                              Jim,

                              Glad I could help. I actually was on meds for just over two years. Thoughts of surgery were just too much to handle and I talked myself into continuing the meds too far.

                              Give them a shot. They do help many folks and hopefully they will help you too.

                              Bob
                              Cleveland Myectomy Crew
                              Member since November 2002

                              \"Chance favors the prepared mind!\"

                              Comment

                              Today's Birthdays

                              Collapse

                              Working...
                              X