Most Popular Angioplasty Web Site

Idiopathic Hypertrophic Subaortic Stenosis (IHSS)

Email Bookmark and Share
Comments and experiences with treatment for Idiopathic Hypertrophic Subaortic Stenosis (IHSS)

Add Your Comment           See More Topics

Patients Are Reading...
a stent Top Forum Chat: How Long Will a Stent Last?
Transradial Wrist Approach to Angioplasty Patient Guide: FAQ on Wrist Angioplasty
Activated Patient The Activated Patient Blog:
Our Blog for Patients
candy hearts Twitter: Follow us on Twitter @cardiopatient
Bike Race Patient Empowerment: Take Charge with Action Resources
Doctor and patient PatientCenter: Read and Learn about Heart Health

CT scan of heart
Like your local educational TV or radio station, our Forum relies on help from visitors like you. The grant funding we receive does not fully cover our costs; please consider making a recurring monthly contribution or a one-time donation.
Donate Now!

More from the Forum:
• Browse through existing topics on the Patient Forum
• Create a New Topic on the Patient Forum

Click here for more information about the following ads

Current Postings on This Page (117):

• Hi my name is Kristina, my grandfather had I.H.S.S so di his brother my aunt passed away from it, my dad had heart transplant 11 years ago he had it, more then half my family has this condition, great aunts, great uncles, cousins, their kids, and I myself have it and just last Tuesday my son was told he has it also, he just turned 21 the 14 of this month. I'm not sure exactly how many family members have this condition but it extremely high in my family tree. I'm going to be 40 this year. Prayers and thoughts to you all.
Kristina, I also have I.H.S.S., Michigan, USA, June 19, 2013

• Thank you S McFarland, for taking the time to answer my query. I have joined the forum you recommended. I've never been part of a forum before so it's a bit of a trick to work out for me, but I'm sure I'll manage. I was interested to hear of your experience given that my specialist told me that neither procedure has any guarantee of success.
Narelle, Australia, June 10, 2013

• I have HOCM and had a septal myectomy two weeks ago. I could feel the improvement immediately. The day after my open heart surgery I was up and able to walk without getting out of breath!This is huge. I am alarmed that you think that HOCM is not life threatening. I can assure you that it most definitely is. I am a member of a group that I invite you to join. Everyone in the group has the same disease as us. We have members from around the globe and the person that started the group actually goes around and meets with the doctors educating them. Please come over, you won't regret it. once you join there is a forum where you can speak with others who are walking this same path.
smcfarland, St. James, Missouri, USA, June 9, 2013

• I am 56 and was diagnosed with HOCM about 3 years ago after years of symptoms but my Doctor not believing me. I would like to hear from anyone who has had alcohol septal ablation and what it was actually like, whether it was helpful etc. My specialist says this and even open heart surgery have no guarantees of success. I gave up work a year ago and am slowly getting more tired, probably a lot due to medication, but this condition is not life threatening apparently. I'd love to talk to people in the same condition if possible. Thank you.
Narelle, Australia, June 4, 2013

• I found out that I had IHSS at 26 and had a septal myectomy by 27, since then I've had many pacemakers and an ICD that became infected and had to have the whole thing removed including the leads. Since then they put a new pacemaker but say I need another septal myectomy. I will be having it done in June 2013, I'm terrified! I did not do well with my recovery the first time and fear what will happen this time. Every time I go to the hospital for a procedure I have a team of doctors scratching their heads with how to deal with the complications. My blood pressure always drops dangerously low and that is just with replacing pacemakers. I am concerned with this surgery. How many people have had this surgery twice/ What will carving more of my heart muscle do to my heart functioning? My mother died at 42 with this surgery and I am now 42 myself. Will I follow in her footsteps or will I beat this?
Angel, Walker, Louisiana, USA, May 17, 2013

• I am 62, female, diagnosed IHSS at 18, heart murmur as a child, symptomatic at 40, Mother, brother and one daughter had it. Treated with Toprol/beta blocker and careful to limited strenuous activities. Do gentle yoga daily, also walking and swimming, stop when winded or dizzy. Symptoms worsening of late. Annual echo, chest X-ray (wish this would be curtailed).
ANC, Yakima, Washington, USA, January 20, 2013

Hi Bryan, My father has IHSS. He is 87 years old. Please don't be scared. The doctors told my mother that he was living on borrowed time when he was 55. I have seen my father "stop breathing" a few times. It was scary but he made it through! We have always kept a watchful eye on him and it helps that my mother was a nurse. He also has been diagnosed with Alzheimer's and Parkinson's. He is always tired. My father didn't have surgery for IHSS. He did have surgery for prostate cancer. He stopped breathing during his prostate surgery, but was revived. I am the youngest of six. We have all been tested for IHSS and luckily, none of us have it. Do not be afraid. My dad has lived a wonderful, nice life since his diagnosis. I wish the best for you. Please stay positive and surround yourself with the people you love. I hope this e-mail helps you. I thank God everyday that my dad is still here. I see him every chance I get.
Valerie S., Louisiana, USA, January 21, 2012

• My brother has this and has had 2 open heart surgeries (among many other procedures as well). We know of a couple of other family members to also have this and I'm sure there are many undiagnosed. My cousin died on Thanksgiving of a heart attack at 47 years old. I strongly believe he must have had it but they did not do any tests to confirm. My son has had several abnormal EKGs and at times his heart has been enlarged. He sees a cardiologist every 6 mo. They are not 100% certain that he has this but given the family history the Dr believe it is a very good possibility and that given that it is a progressive disease, it can progress differently in different people. He was on medication but has shown improvement over the last couple of years so the Dr took him off the meds so that we can retest in 6 mo and compare results. The Dr recommends genetic testing but it is very costly and I cannot get the insurance company to pay for it. The Dr has written a letter and they still deny it. Does anyone know how to get them to pay for this or of any grants that will pay for it?
Theresa, Tampa, Florida, USA, December 30, 2011

• I have IHSS and had a septal alcohol ablation in 2001 at Georgetown while I was a patient at NIH. I will be moving to Lacey, Washington (which is close to Olympia). Is there anyone who can recommend a cardiologist in that area (who is really good!) that treats IHSS.
Diana Baker, Mount Dora, Florida, USA , December 7, 2011

• Very physically active person. Two years (age 65) ago I had a heart-stent implanted, then eight months ago -- after many ER visits -- I was diagnosed with IHSS. Taking Plavix, aspirin, Simvastatin, Alprazolam, Metoprolol and Lisinopril. echocardiograms and MRI show modest heart defect, but one cardio guy wants to install a defib unit anyway. I am refusing that on QOL grounds ... the meds already try to turn me into a mental/physical clam. Any comments appreciated.
Rayh, Jacksonville, Florida, USA, December 1, 2011

• I have written to Congressmen, Representatives and Mrs. Obama trying to get someone to initiate echos on all pre athletes, this could save a lot of grief for families, unfortunately, no response from anyone.
Carol Leigh Cuono, Bangor, Pennsylvania, USA, October 13, 2011

• My mom was diagnosed with IHSS about 10 years ago at the age of 79. She was being treated for uncontrollable high blood pressure and was referred to a heart specialist in Chicago, Dr. Joseph Marek. Dr. Marek found that she had the IHSS untreated and put her on Beta Blockers. She sees him every 6 months, but I'm happy to say that she will soon be celebrating her 90th birthday. I was told that if she had been active, she would maybe not be alive today. Her sedate lifestyle has prolonged her life! I wanted to put this out there to show that someone has lived a long life with this disease.
Sandy, Chicago, Illinois, USA, August 23, 2011

• Armando -- if you want to contact Dr. Makkar, we would suggest calling his office at Cedars-Sinai. His web page profile is at
Angioplasty.Org Staff, Angioplasty.Org, August 20, 2011

• My name is armando figueroa age now 72 years i had the first alcohol ablation procedure in march of 1999 done by dr rajendra makkar md at cedars-sinai and i still have the heart of a 50 year old if possible i would like dr makkar to contact me i now live in laredo texas dr if you can e mail me. I would like to thank you again.
armando figueroa, retired pharmacist, Laredo, Texas, USA, August 18, 2011

• Hello my name is Sean Hunt. I was 2 when it was found out that i had IHSS. my little brother and I are the only ones in my whole family to have it {including cousins, aunts, parents, and other siblings} I have actually been told that we are in the medical history books due to that fact that my brother and I are 18 months apart but everything about heart is the same. It was scary at first but I survived, I am now 21 and WOW what a life
Sean. Buckeye, Arizona, USA, July 31, 2011

• I have idiopathic hypertrophic subaortic stenosi. I was just diagnosed the other day and am completely scared. My wife is sure I am going to have open heart soon and is making me more nervous. Please if you have any helpful info, email me [or post to this topic and Bryan will be notified.]
Bryan, Munster, Indiana,USA, May 21, 2011

• For more information about HCM, and a list of Centers of Excellence for the treatment of HCM, visit: The Hypertrophic Cardiomyopathy Association at:
Cynaburst, HCMA, Los Angeles, California, USA, May 13, 2011

• Steve -- check out Carol's post from September 15 -- she mentions a group in New Jersey. Anyone else have any recommendations for Steve in New Jersey?
Angioplasty.Org Staff, Angioplasty.Org, April 23, 2011

• i have IHSS for many years. feel OK. looking for a NJ dr who specializes in treating this condition. Thanks, Steve
Steve, looking for a NJ cardiologist, East Brunswick, New Jersey, USA, April 23, 2011

• I am a 52 year old woman, diagnosed with IHSS in 2001. Three months before I was diagnosed had an echo that didn't show anything but I could barely run quickly across the street without getting winded. Family doc referred me to cardiologist who saw the issue during a cath. Had open heart surgery to remove the excess muscle and they also replaced the mitral valve. As far as I know no one else in my family had this but both my grandfathers died from heart attacks so it could have possibly been undiagnosed. I only take warfarin because of the mechanical valve. Wondering if this problem can reoccur as I have been feeling quite weak and tired all the time. My arms also feel weak.
Jazcat, Florida, USA, April 17, 2011

• Hello. My paternal grandmother died suddenly at age 26, her niece at age 12, and nephew at age 14. My sister was diagnosed with IHSS at age 8, my father at age 33, and my brother at age 26. My father and sister have internal defibrillators. My father has been having problems with fluid on the heart. His doctors have not identified the cause of this. We are just praying that they do. I am the only sibling that has not been diagnosed. My sister had genetic testing last year, and they isolated the gene that causes IHSS. I am waiting to get tested so I can quit getting ECHOs.
Denise, Alabama, USA, April 10, 2011

• My husband is 33 years old and was diagnosed with HCM/IHSS when he was born. He had an ICD placement when he was 27 years old. It seems like the older he gets, the harder it is to control the condition. When he gets stressed or over worked he will grab his chest and he turns all red. I ask him if he is ok and he says "I'm fine". He doesn't like to talk about his heart and that worries me. We now have a 15 month old son and we are worried that he will also have IHSS. He has already been to the doctors and they say all looks good for now. But we have to take him every year for an echo and EKG, just to make sure. IHSS shows up in teenage years most of the time. PLEASE HELP SPREAD CHD AWARENESS!!
Wife 2 Tom and Mommy 2 Randy, Mechanicsville, Maryland, USA, March 8, 2011

• Hello All! My husband, Jacob, was diagnosed in 2006. He did not have many symptoms until November 2010 and since then, oh my... Atrial Fibrillations.. verapamil, toprol and warfarin. He had is first cardioversion in February 2011 which failed... that was a 5% chance of happening... He is scheduled for an alcohol ablation this month... and internal defibrillator to follow... His quality of life is nil..but I guess at this point it is quantity instead of quality right? God bless all of you. I feel for each and every one of you everyday and the people who love you as well. Also keep those young athletes in your prayers... FYI... if you can visit University of Washington... they know what they are doing when it comes to our disease!!!
Amy Jo, Seattle, Washington, USA, March 5, 2011

• My husband was diagnosed with IHSS as an infant and has had a pacemaker since he was a child. Asymptomatic until his early 20's, he has had his first pacemaker replaced with a defibrillator and his medication has had to be switched a few times to accommodate some trouble with PVC's and skipped heart beats. He is visiting his doctor about the PVC's and skipped heart beats this week, as he has been experiencing them for about 5 days now. He is 27 and otherwise very healthy. Over the phone, his doctor told him that he did not believe this current issue to be fatal or dangerous, but he did move his appointment to be sooner. I am scared and working on staying strong for him. Have any of you experienced this type of a problem? What did you do?
Wife of IHSS Patient, Pennsylvania, USA, February 7, 2011

• I have had IHSS for about 7 years, I am getting ready here soon to have a defibrillator put in. I agree with a lot of you that say this disease is scary. I always told my family I wouldn't wish this disease on my worst enemy. If anyone has any information on this disease I am greatly interested.
Sue G, Missouri, USA, January 26, 2011

• I am what I would consider a young 51. My IHSS was dismissed as a simple heart murmur in a physical for high school football back in 1974 and wasn't accurately diagnosed until I was 25. I was did pretty well for many years on 100mg of Atenolol/day up until two years ago when I suddenly went into Atrial Fibrillation (cutting down trees with a chain saw). The first cardioversion lasted 18 months and I felt great. Then seemingly while hiking I slipped back into AF in 11/09. I had a second cardioversion a year ago but it only held until May and again seemed to be triggered by more-than-my-normal physical activity. Now I don't know what to do as I have been in AF for 7 months and the shortness of breath seems to be getting significantly worse. My cardiologist is willing to do another cardioversion but does not think it will last. At 51 and yearning to be more active I can't live like this so need to do something. Does anyone know if the AF can be triggered by excessive physical activity? (Any correlation?) The IHSS seemingly limits the type of drugs I can take so I think I'm stuck with either another cardioversion or something more invasive. Thoughts/advice?????
Roger Crank, Eau Claire, Wisconsin, USA, December 5, 2010

• Hi I was diagnosed a couple days after being born and doctors said I should not have lived to the age of 1. Yet I am proudly living really healthy and have had surgery. Still wishing I could play sports and be like most kids my age. Already know that I will never be in really active sports. Wish there was a cure for everything with my heart.
A. Graetz, Wisconsin, USA, November 4, 2010

• Chris -- Mayo Clinic has locations in Arizona and Florida, besides their home campus in Rochester, Minnesota. Does anyone out there have recommendations for Chris re: centers closer to him. Chris, check out Carol's post from September 15 -- she mentions a group in New Jersey.
Angioplasty.Org Staff, Angioplasty.Org, October 30, 2010

• hi I was diagnosed with Ihss in 2002. the dr put me on verapamil 300mg od and toprol 100mg pm. I have ICD implanted in 2002 and have been changed once. I was managing until recently. Now I am getting tired and short of breath with the slightest movement, syncope, aching, stiffness, and insomnia. I think I need more treatment to be able to live a normal life. what should I do next? pls I need a second opinion with Mayo hospital. Can you give me the address of Mayo hospital closest to New Jersey. I am 58yrs old.
Chris Ward, Hillside, New Jersey, USA, October 28, 2010

• I am a 48 year old female with congenital subaortic membranous stenosis. Had surgery 6 years ago to remove the membrane. Now it seems it is growing back. Gradient was up to 67 6 months ago. Would alcohol ablation be an option for me? Had my surgery at Vanderbilt and did wonderful, no complications. I have really never had a lot of symptoms, mild palpitations, mild shortness of breath after exercise. Still walk on my treadmill @ 4mph regularly. My cardiologist doesn't think this is harmful to me. Any thoughts on this by anyone else? Also, anyone else have experience or thoughts on Vanderbilt Hospital? Thanks.
K. McGuire, patient, LaFollette, Tennessee, USA, October 8, 2010

• I am 75 and was diagnosed with IHSS at 58, my son at 33, cousin in mid 50's, I had an alcohol ablation, now a pacemaker/ICD, cousin had myectomy done at Cleveland, I am on verapamil, metoprolol, zocor, also asthmatic, limited fluids and salt, still working as a secretary, several ambulance trips, weigh myself first thing each morning, adjust diuretics accordingly, belong to the HCM group in Hibernia, NJ, wonderful group, we are from a large family, at this point, only know of the 3 of us, my children and grandchildren are checked regularly, important to watch the stress level, also difficult to control in our lives of today, also in a study group with Dr. Sherrid from St. Luke's Roosevelt Hospital in NY, Dr. Manissi is my main cardiologist at Muhlenberg, Bethlehem, PA.
Carol, Bangor, Pennsylvania, USA, September 15, 2010

• Hi I was diagnosed with IHSS about a year and 1/2 ago, my brother was diagnosed when he was 25 now 66. I am 54 years old, I'm assuming I have always had it, but no one could find it. I have had the gene test done and I do carry it, I am now having my children's gene test done and which ever one has it, then we will have their children tested. I have been seeing my hear dr. in my home town and a specialist in San Antonio. Its really hard to find a dr. that really knows about IHSS, you have to really look. I take the metoprolol 100mg twice a day, my gradient is at 80% during activity. I just wondered if it is inevitable that you will have a stroke with this eventually.
MG, Corpus Christi, Texas, USA, September 15, 2010

• 49-year-old from Kentucky -- as our disclaimer states, we don't/can't give medical advice, but perhaps someone out there can steer you to a center that's IHSS literate that's not too far. But you look to be 3-4 hours drive from the major heart centers.
Angioplasty.Org Staff, Angioplasty.Org, September 8, 2010

• i would like to know my percentage of survival of a new medtronic pacemaker, with ihss and a bjork shiley valve replacement at the age of 21, now I'm married and i feel good, but it s almost time for a replacement pacemaker unit, it s a dual lead medtronic pacer unit and i suffer from severe pain in both shoulders, due to open heart surgery for cardiomyopathy, at the age of 19. i truly wish your professional opinion of my chances of survival at the age of 49, I'm supposed to have it replaced in 2 years if i stay in the same condition, it's constantly firing 24/7 PLEASE let me know
49 year old heart patient, Dwale, Kentucky, USA, September 4, 2010

• Mother from Oklahoma -- our deepest sympathies for your losses. You'll be in the thoughts of our readers.
Angioplasty.Org Staff, Angioplasty.Org, September 2, 2010

• I had 2 lovely children. Both had IHSS. Tyler went to be with the angels in 1996 at age 9. Linda Kay at in 2002 at age 12. I just want them to be remembered. Thank you.
Mother, Wyandotte, Oklahoma, USA, August 31, 2010

• I am 45, I was diagnosed at the age of 33. My maternal aunt had a heart transplant at the age of 46. This Aug/2010 will be 12 years for her new heart. My Mother was diagnosed after me and has serious issues. She has had the Ablation, which did help her for about a year. She now has a defib/pacemaker. She really is not in good health, but will not be put on the transplant list. She is afraid, even though her sister is doing great. I take Verapamil & Toprol. I am checked yearly unless I feel I need to be seen sooner. I don't live a real active life, but I do what I can. Life is to live. My kids are seen by their cardiologist yearly also. Neither of them have developed it yet. MY grandfather is also a carrier, but has very mild symptoms. I did develop Endocarditis (bacteria in the heart) which I had to be hospitalized for & on an IV for 35 days. That is a great concern to the doctors. I watch sicknesses very carefully, but like to live my life as worry free as I can. Good thoughts. Stress is the worst possible thing we can do to our hearts. My last appt in July, did show some of my gradient numbers increasing. Positive thinking to all.
LMS, Michigan, USA, August 10, 2010

• I've had IHSS all my life, but have made it to age 66. I was labeled "sickly" because I was always pale, thin and I tired easily. I've always had very little stamina for exercise. I had the typical murmur which improved after an alcohol ablation 3 years ago. I was hospitalized last week with an A-Fib episode. While being monitored, it was noted that I now have V-Fib too. I got home from the hospital today sporting an ICD. My meds are Verapamil, Metoprolol and Coumadin. I highly recommend alcohol ablation because it greatly diminishes the "pounding" heartbeats. I pray I do well with the ICD, too. Let's face it, it's an uncomfortable disease to have, but there are many worse ones. I thank God for the medical breakthroughs leading to treatments that weren't available when I was a kid.
GloriBee, Ellicott City, Maryland, USA, July 22, 2010

• Hi, my name is Stormy and just a few weeks ago I went for a regular yearly echo, that I have been doing since my mother was diagnosed with IHSS. At age 35 she had open-heart surgery, needless to say she is no longer with me today. My aunt has also died from this disease and her son, my cousin now has apace-maker due to this disease. The cardiologist I seen that just told me that now I have the beginning stages of IHSS, that I have some thickening in my septum, then he goes on to tell me that I should not worry unless I start blacking out and to keep an eye on my pulse and blood-pressure. How ever this Dr DID NOT offer me any info or any kind of treatments offered, instead he tells me I need to be seen in a year unless I start fainting or blacking out then to contact him or the emergency room asap. I am very scared and feel that I need more info and a second opinion, Please I am open to any thoughts or suggestions. like I said I have seen this disease kill more than enough of my family and I am very scared. Thanks for listening
Stormy Dawn Talley, Stay at home mom, mother of 2, Parsons, Kansas, USA, June 11, 2010

• I am a 51 yo female diagnosed with IHSS in my early 20's. Had an alcohol ablation in 2003 and felt great for a time after that. Now I get short of breath when I bend over and my legs/ankles are beginning to swell quite often. I am on metoprolol. I also have heart palpitations periodically. a Holter test showed I was having show irregular beats and the cardiologist retested. The second test wasn't as bad as the first so he didn't feel a pacemaker was necessary yet. Any suggestions?
Gwen, Salt Lake City, Utah, USA, June 10, 2010

• i am a old hand at this game,, i was first diagnosed at age 14 at university of ky hospital,, since then i've had too many surgeries to count, the final being a pacemaker. at my age (49) i feel i've got a long life to live and don't regret any of my decisions, i remember when they couldn't even diagnose idiopathic subaortic stenosis, i feel lucky to have it through all the surgeries and look forward to a long life, see ya!!!! you can e mail if you want -- it's
Ted Stephens, Eastern Kentucky, USA, May 28, 2010

• I am a 47yr old female with HCM. I was diagnosed with it in 1994. I was on tenormin and was switched to Toprol XL a few years ago. My blood pressure started to slowly creep up, and now I have started on Norvasc. My HCM is worsening in that I am getting short of breath when climbing stairs and walking distances and having more palpitations. My cardiologist recommended septal ablation. I will be talking to the cardiologist who will perform the procedure in a few weeks. I would like to talk to someone who had the procedure.
Melissa, San Antonio, Texas, USA, May 22, 2010

• Those in and around New York are welcome to visit the Winthrop University Hospital HCM Treatment Center, one of only two in the State and the only on Long Island.
Srihari S. Naidu, MD (, HCM Treatment Center, Winthrop University Hospital, New York and Long Island, May 15, 2010

• Uni -- perhaps an immunologist might be of some help. An adverse reaction of Verapamil is hives also. Perhaps there's some type of skin test that can be done?? Anyone else have some suggestions.
Angioplasty.Org Staff, Angioplasty.Org, May 3, 2010

• Diagnosed with IHSS 1/28/10. Cannot take atenolol etc. Am being treated with diuretic alone. They want to try verapamil. Have developed hives because of this, and wondered if anyone else has had any similar reaction. Also, how would I know if I am allergic to a drug if I take it, and currently have hives? Should I wait till the hives are over? This is a scary situation.
Uni, Washington State, USA, May 3, 2010

• I am a 37 year old woman that has been diagnosed with IHSS. I found out in 2002 that I had this heart condition. I have had heart cath in 9/05, open heart surgery in 9/05. I had a defibrillator implanted in 8/08 and nothing but trouble since. I am having my 15 year old son tested for this condition this week. I pray that he does not have it.
Alysa, Centreville, Alabama, USA, March 29, 2010

• I am 42 years old man and doctors diagnosed IHSS on my when i was 23 years old. My mother (she is 62 yo) and my grand father suffered form IHSS. I take 40 mgr propanolol per day and i fill OK. I do echograph once every year and my condition is stable. in the past i was doing a lot of exercise (25 - 33 yo)but not so much anymore (only some bicycle. Now the doctor proposed to do the Bruce protocol although i knew that it is dangerous in my case. can anyone advice what i should do
Dimitris Dinos, Athens, Greece, February 9, 2010

• I'm a 47 yr. old female who has had IHSS my whole life. I have has several heart catheterizations, my first was when I was in 4th or 5th grade and my last 8/15/07. I am on Verapamil and Propranolol. I had open heart surgery 1989 and a stroke in 2003. I have several problems, my last resulted in me getting a defibrillator on 1/26/10.
Mary Wehrs, patient, Plano, Illinois, USA, February 4, 2010

• Would like Julie Wilson,California May 08 having an ablation to respond and let me know how it went-----
Carole, New York, USA, February 2, 2010

• I am a 17 year old female, and was born with IHSS... i went into cardiac arrest when i was just 14..and now have a defibrillator.... that's all.. =]
Nichole, Wisconsin, USA, December 21, 2009

• I am 29 years old and I was diagnosed with IHSS 3 years ago. My local cardiologist referred me to the Mayo Clinic in Rochester. I went up there and they did the surgery that cuts out a sliver of your septum. For awhile after I was feeling great. I have since had the same symptoms I had going in. I am having strong palpitations and chest pains. Is there anyone else that has had the surgery and the IHSS came back? I know it will always be there, but just as bad as before the surgery? Any help you could give me would be amazing. Having heart surgery when you are 27 years and then the possibility of it not even helping is hard to swallow. Thanks.
Nic H., Birmingham, Alabama, USA, November 6, 2009

• Hi,My grandson was diagnosed with IHSS at 3 days old. They found his symptoms at birth. The doctor said it was inherited. His maternal grandfather died with the disease suddenly at the age of 35 yrs. It is suspected that his great grandfather died of the same disease at age 53 yrs. His mother was not diagnosed with it until after the birth of her second son. She has a pacemaker (received at age 23). The 2nd child has not shown any symptoms as of yet. It is my understanding that some never become symptomatic while others do a young ages. I was told that stress plays a big factor on symptoms showing up. You never know if you will be symptomatic or not. However, you may still have the disease. Hopes this helps some. Anyway I really didn't realize how rare this really is. He is now 8 yrs old and he is doing fine. He has been on propranolol since 3 days old as well. He has had chest pains 2 times and had to be ran to the hospital. (Medicine was helped.) He has some arrythmia but it seems to calm down. He has also been diagnosed with ADHD. He is so active and it the worst thing for his heart. Medicines will speed heart rate and without he is extremely active. He is becoming very angry at not being able to play sports or go to the amusement parks etc. like other kids. Is there anyone out there who has experienced these types of emotions. Any input would really help.
Shawnee, Florida, USA, October 6, 2009

• Connie -- you should contact Mayo directly. Here's their page on IHSS:
Angioplasty.Org Staff, Angioplasty.Org, August 25, 2009

• My brother-in-law has IHSS. He served in the military. He cannot get benefits because they do not show he had IHSS when he was in. The medical doctors said he had to have had it. My sister has requested his medical records from the service. Could the extreme exercise have made is heart worse? They have no money and are about ready to lose their home. Does the Mayo clinic take cases like this? We are also concerned that he is not getting the best of care through the veterans. He has no other insurance but through the veterans. We are just overwhelmed and do not know where to turn. Could you please let us know if there is anything that the Mayo clinic can do.
Connie Burton, Lewiston, Idaho, USA, August 24, 2009

• I am a black male 28 years old. I was diagnosed with subaortic stenosis since I was a baby. I have had 1 severe episode when I was just 6. I, at times, have flutters and sharp pains put they go away quickly. My main concern now is the clubbing in my fingers and toes. I also have a deformity in my ankles that causes me major pain in my legs and knees. Is there anyone else out there with these same problems.
Justin Dion Bell, Phoenix, Arizona, USA, August 14, 2009

• Hi i have been reading and one person wrote here that they were 16 when diagnosed and that was young and wanted to know the youngest that was ever diagnosed. I am just writing to say that my son was diagnosed at 2 MONTHS old and had surgery at one year old! so no you are not the youngest and my son's doctors were astonished that he had it so young, but my belief is that there are younger and that we just don't know to look for it!! good luck to everyone!!
Stephanie, New York, USA, July 15, 2009

• My dad was 29 when the doctor told him he had IHSS, he lived through 4 heart attacks and a brain stroke. he finally passed away when he was 55 from something unrelated. Every 4 years I go and have an echo done to make sure I don't develop IHSS.
Greg Markham, NPR, Florida, USA, May 16, 2009

• I have IHSS. In my entrance examination in the military service did not show this condition, but after my release from the service this condition showed up. Can the extremely exercise aggravate this condition?
Jose A. Perez, San Jose, California, April 24, 2009

• My husband of 14 years who just turned 41 was diagnosed with HOCM, IHSS, CHF (hypertrophic Obstructive cardiomyopathy, Congestive Heart Failure) when he was 29. He had a pacemaker defibrillator put in immediately. He has been doing good on his 2 pace/defib right now. His muscle has gotten so thick that he doesn't have any air, cant hardly get around... his mother died unexpectedly at 50, also his grandfather, and 2 uncles had the same thing. His doctors said that the alcohol septal ablation wasn't a guarantee that it might not work and would end up having the septal myectomy anyway.. so we decided to have the surgery myectomy, He is due to have it around the end of this feb '09 Keep us in ur prayers. He is on the same meds as most sotalol, metoprolol, lasix, potassium, verapamil, u name it he's on it! the only thing is we have a 18 month old daughter she is just like her father! hopefully this is one thing that she doesn't inherit from him I am having her tested at a pediatric cardiologist in the next 2 months.. my question is has anyone ever taken there child to have the gene testing done and was it accurate? thanks
Mandy J., North Carolina, USA, January 17, 2009

• I am 19 and I was diagnosed with IHSS at the age of seven. I haven't had to have surgery or anything like that. Just had to take a beta blocker. Does anyone know if i would definitely have to some type of surgery in the future or does it depend on the severity. My sister who is 16 was diagnosed with ihss a couple of years ago.
CC, Ktown, Tennessee, USA, December 1, 2008

Aaron Bolin, Winslow, Indiana, USA, November 20, 2008

• to all who have cardiomyopathy this is a very scary disease you must look at the best options or things can get pretty bad i was diagnosed in 2001 i investigated for 6 years i found out all i could my cardiologist in oregon wanted to do a blind cut and replace my valve defib and pacemaker they also wanted to do alcohol sublimation i said no.fired my doctor and called the mayo in rochester minnesota they specialize in cardiomyopathy dr schaff performed a miracle on me i had my valve repaired a myectomy on my septum it was 55 measuring no pacemaker or defib i I'm only on 75 blood pressure meds 1 aspirin a has been a year i now can walk miles no problem before i could barely walk i was so sick of being sick and scared i want to bring awareness many doctors do what they think is right not always the best for you in the long run only get treated by the best and if you have a operation make sure they perform many daily they do better at repairing etc they are so skilled the mayo was my answer from god thanks good luck feel free to email me.
Tammy, Portland, Oregon, USA, November 14, 2008

• My husband has IHSS/HOCM and will be heading to mayo clinic in Rochester soon. We are not sure what procedure the doctors will do either the alcohol ablation or the septal myectomy. We are truly scared, but know it needs to be done.
Tina Blakeman, Belle Fourche, South Dakota, USA, July 26, 2008

• hello my name is tammy there is so many stories on here. i was diagnosed with blocked hypertrophic cardiomyopathy in 2002. i had a dr who was very pushy he wanted a defibrillator pacemaker new valve and alcohol sublimation i said no i researched this till 2007 i found the mayo clinic i scheduled surgery and i came home with no defibrillator no pacemaker no new valve they trimmed my septum i feel great long road there isn't enough drs etc that know about this i want to start a blog for people like us to chat my email is any questions good luck
Tammy, stay home mom, Portland, Oregon, USA, June 9, 2008

• Hi I am 30 years old and I was diagnosed with IHSS at birth. Well as a child I was sickly and thought I would not live. At the age of 24 I was given the defibrillator/pacemaker that has kept me in good health until just recently now I am going to undergo the septic ablation. I am very nervous about this does anyone know how this is sustained and also does it work? thanks.
Julie Wilson, California, USA, May 22, 2008

• I was diagnosed with IHSS in 1983. I went for years just being on Tenormin, then I developed symptoms, had to have medication changed had a Pacemaker placed. In 2001 I was given a choice of having a Myoectomy or Alcohol Septal Ablation. I opted for Alcohol Ablation. Dr. William Spencer III, performed the procedure at Methodist Hospital in Houston, Texas through the Baylor Heart. He is now in Charleston, S.C.. I have done exceptionally well. I would recommend the procedure to anyone. I am very pleased with my life style as now I can walk up hills and up stairs without being short of breath. I had Atrial Fib before having the ablation and still have chronic atrial fib., but my cardiologist in Bartlesville, Ok., Dr. Defehr has changed the settings on the pacemaker and now I do not know when I go in or out of atrial fib. Dr. Defehr does every 6 month check ups and I have yearly checks ups for the Alcohol Septal Ablation with 2D echoes. I would talk with anyone about the procedure and the benefits that I have had.
Rea Madden, Copan, Oklahoma, USA, April 24, 2008

• Good evening, I just had septal myectomy on Dec 3 2007. To the guy that is 22 and gives himself the punch in his chest; I used to be that guy. My HOCM/IHSS was diagnosed when I was 16 at the age of 30 I started beta blockers (corgard) for 10 more years. Now at the age of 40 after doing all of the things that you're not supposed to do Mountain climbing, skiing, scuba diving, you name I've done it. Last echo in September of '07 I had a septum of 33mm thick which was bad. I went to Mayo after Thanksgiving and had a septal myectomy done by Dr. Dearani. Awesome job!! After 2 months of recovery I feel like I'm 20 again ran my heart up to 160bpm for over 45 minutes with no symptoms. Any questions? Post here
Don Anderson, Oce' North America, Louisville, Nebraska, USA, January 24, 2008

• My husband was just recently diagnosed with IHSS. The doctors told him that he shouldn't be alive today as he has led an extremely active life. What is the life expectancy for this disease? We just had our son tested and they say that he is fine. Can he get this disease at any time or is there a certain age that you get it? My husband is scared and I cant seem to sleep anymore. Please help me to find some answers.
Reba, Idaho, USA, January 13, 2008

• My daughter has IHSS, she is 24 years old, she had a myectomy to take some of the gradient, she has recently been cardioconverted at least 15-20 times in the last 3-4 months,she also just had an ablation which was unsuccessful, the muscle is so thick, they couldn't get in, she also has an ICD she is on coumadin, amiodorone, and metoprolol, she just had open heart 2 weeks ago, the mitral valve was replaced and they tried to do a maze procedure, she went in a fib, 2 days after the surgery, she is home now, and day before yesterday, she had to be cardioconverted again, she lost her dad at 40 years old, we were told he had something else, only to find out later, it was IHSS. Has anyone gone through this, as of yet, we don't know if there is anything else they can do, a transplant has been discussed in the future, but not an option right now, she has been denied insurance and social security, but we are going to appeal, but i am really concerned about her future, so any input would be appreciated. she has had excellent care at the University of Michigan in Ann Arbor, Michigan. thanks.
Elaine Bailey, Belleville, Michigan, USA, October 10, 2007

• I am a 54 year old IHSS asymptomatic patient. My father died at 61 and my older brother at 54, possibly due to IHSS. At the time they passed I was not living at home so that is my best guess. At the age of 40 I started doing follow-up on my heart. At that time my septum was 11 mm thick, today it is 24mm. The first years my septum grew at a rate of about 1mm per year. Some 4 years ago, no growth was determined (my prayers?? - I do want to give credit to them). But now, I found out that my septum continues to grow, and I am scared. I love life and am enjoying it more than ever. no sports activities except for walking during my working time. taking only 10 mg/day of nadolol. I have normal blood pressure (120/80), and feel no symptoms at all, except when I bend over (I get dizzy for a short moment and I have to breath deep and hold on to something). My doctor is starting to talk about one alcohol ablation, and I don't want that. Prefer to continue trusting god. How thick is the thickest anybody has ever reported a septum? --- I am worried about the fact that I do not get a "life insurance", and just bought a house. Should I get out of that debt ??? ---how do you handle this issue ??? -- please write to me.
Juan, Georgia, USA, August 25, 2007

• My family just found out that my brother has been diagnosed with IHSS. Does anyone know if this is a disease that you are born with. He has a son. Does anyone have any other information about it.
Gail B., Maryland, USA, August 1, 2007

• I had open heart surgery in April of 2004. Found out I had IHSS about 3 months prior. I was born with VSD and the hole closed by time I was 15. Well when my daughter was 8 mths old I started having breathing problems, shortness of breath. fluid retention, stuff like that. When I found out, I had to have surgery 3 months later. I have not lost any weight since then and am wondering if the problem can come back after surgery if u dont take care of your health? Can someone email me at
Kristina Luking, Imperial, Missouri, USA, March 12, 2007

• Hey I am a 22 year old man that was diagnosed at birth with IHSS and basically I haven't seen a doctor in over 4 year cause of ridiculous health insurance reasons. I don't medicate and I basically give myself a good punch in the chest once in a while to keep the heart going steady. I am hoping that this site can help me to get seen by a doctor at least for a checkup. So if anyone has information where I can find a IHSS cardiologist then let me know. I really don't know what to do anymore about seeing a doctor.
timothy gillis, billerica, massachusetts, usa, January 5, 2007

Tracy, Hartshorne, Oklahoma, USA, July 26, 2006

• My husband is 48 with IHHS, been on Toprol for 4 years. Now talking of a pacemaker. Is there longevity? I am his frightened wife.
M., USA, July 5, 2006

• I will be having surgery to have my septum reduced and a valve replacement in about two months. This surgery will take place in approximately two months in the Heart Centre in Saint John New Brunswick. I have been on Verapamil 120 SR four times a day for 10 1/2 years. I am a bit worried about this surgery, but keep praying that everything will turn out okay. I am 68 years old. My sister has IHSS to a lesser degree, but is very active.
Betty, New Brunswick, Canada, May 28, 2006

• I was diagnosed with IHSS in July 1998. I had an alchohol ablation in May 10, 1999 and did real well for about 2 years and Then the symptoms started returning and now I have terrible angina, am very short of breath, and get very dizzy any time I bend over at all. I have a difibrillator am on 360mg of verapamil twice a day, and 160mg of sotalol twice a day. I take morphine for the angina and also take lasix for water retention. I am no longer able to work and was wondering if anyone else has had symptons like this return after septal ablation.
Glen Shurtz, Safford, Arizona, USA, May 17, 2006

• I was diagnosed with IHSS when I was 59, my son at 33, he is now 44 and on a very large amount of meds, eventually might be going to Cleveland for a myectomy. I had the septal ablation done at the ADventist Hospital in Silver Springs, MD, I had a pacemaker before the ablation. I had the pacemaker replaced with an ICD, all procedures were worth having, we took my son to NIH in Md where they also study the disease, a cousin was diagnosed at 50, had the myectomy done in Md, he is a contractor and doing well. I have tried to track the IHSS in our family, approximately 100 of us from grandparents down to grandchildren and great grandchildren, my grandchildren are checked with a pediatric cardiologist regularly, at this point we feel it stems from my paternal grandfather, John Leigh, even when going to your cardiologist, the patient needs a cardiologist who specializes in IHSS, my cardiologist is Dr. John Manissi, and my son has Dr. Little. The Cleveland Clinic and the MAYO Clinic are the best for the myectomy procedure, I had the option of Texas or Md for my alcohol ablation, the care was excellent at Md.
Carol Leigh Cuono, Bangor, Pennsylvania, April 22, 2006

• i have had ihss for most of my life..i live in canada..i have found the best meds to be on is tenormin...50mg per day..there is a doctor at the toronto general hospital..his name is dr.wigle and he specializes in ihss..people come from all over the worl to train with him..i try to keep busy and go with people that are positive...i also try to live a normal life...i think that if you are on the meds your chances of living a long life are much better...feel free to get hold of me.
Dave R., Canada, April 11, 2006

• Hi I am 17 years old and when I was 8 months old I was diagnosed with Hypertrophic cardiomyopathy. For a few years now I have been looking for a procedure that can help me in the long run.I have had two previouse surgeries that have help with the blockage but I want more. I have came across this procedure called Alcohol Ablation and I would like to know if this would help me.
Jen, Lancaster,Pa, December 06, 2005

DENISE, IL, December 04, 2005

• My husband was recently diagnosed with Diabetes. His brother and mother have IHss. They detected a murmur and will be doing an echo to see if he in fact has IHSS. Any correlation between Diabetes and IHSS? He is 45 years old.
Kirsten Nicholas, November 20, 2005

DENISE, CHICAGO, November 01, 2005

• I am 59, and have been diagnoised with IHSS, and have a consultation tomorrow ( 11-1-2005) at Baylor Colege of Medicine in Houston, TX about having Septal Alcohol Ablation. Would like information on this procedure and sussess ratio,
Martin Dudley, MACO Inc., Houston, Tx , USA, October 31, 2005

• I first posted my info in Dec of 2001. This last April my chest was feeling... fuzzy and heavy, tight, and just plain not right. I asked a Dr. to listen. He had me have an EKG immediatly. I had gone into Atrial Fibrillation. My Cardiologist has taken me off the Norpace and put me on Amiodarone (its only prescribed in life threatening instances) I am not a candidate for an ablation as my form of IHSS does not allow it. I have had 3 Cardio Versions since April, and I also have been on Coumadin this entire time. Every week, I think... Okay this is it... This one will put me back in rhythm... Then my blood is too thick or too thin or my Potassium is too low.. Etc. So, hopefully on 9/14/05 I will hear that I'm good to go and head on over to the hospital to get jumpstarted! I'm sorry, but I have to keep a since of humor. My Father ended up passing away in April 2002 and my Aunt Joyce in Jan 2003. Both of which had IHSS as well. It is scary. I am glad for this web site. I can see that I am not the only one in the world with this pain in the butt heart problem. Thank you all for taking the time to read my rambling.
Tracy L. Copeland-Copper, Durham, CA, USA, August 26, 2005

• my childs father has ihss, what age will we know if she has this condition and what is the life span for this also
vickie, cincinnati ohio, July 21, 2005

• i would like to hear from patients who have had the alcohol ablation and whether or not thy are satisfied that theynhad the procedure . i am scheduled to have septal ablation it is for july 27 but i am considering backing out when i read the list of procedures that will be done and the risks involved. anyone willing to talk about second thoughts after it was done?
myra ellis, lincoln,ma.oi773, July 19, 2005

Dear Layali, this Forum only provides an opportunity for patients and physicians to trade information and doesn't recommend or make referrals. For more information on alcohol ablation, try this website. There are some contacts listed there, although it seems to be a couple years old. Also, Dr. Sigwart is now at the University Hospital in Geneva, Switzerland. You can find direct contact information by searching their hospital directory. Best wishes and luck to you. Please let us know the outcome of your search.
Angioplasty.Org Staff, Angioplasty.Org, June 22, 2005

• My dear my daughter 20 years old had (HOCM) (Hypertrophic Obstructive Cardiomyopathy). The advice is to have septal ablation. I want ask Dr.Ulrich Sigwart the following: 1.Can he do this operation? 2.In which hospital in London? 3.What is the total cost? 4.What is the percentage of success? 5.Can do this operation by surgery, who is the doctor & what is the cost? 6. Are you visit Iraq? I am from Iraq. If you want I can send you reports of my daughter's status. I am waiting your answer. Thank you.
Layali Riyadh, personal, Najaf/Unmaride/H.Wife/Iraq, June 22, 2005

• Hi. I am 18 years old and was diagnosed with IHSS a few weeks ago. I have been experiencing chest pain and shortness of breath for years now, but untill now, nobody believed that it was serious. Now I have to have surgery for it and I'm a bit nervous. I don't know what to expect.
Evan, CA, May 16, 2005

• After being mis-diagnosed for several years, one local doctor finally found the IHSS, even though the symptoms were pretty classic.....murmur that comes and goes....angina type pain that occurs after exertion rather than during, etc. My frustration now is that since this really can't be "cured" there is little interest in this from the medical field. Very few people seem to be interested in working on it, and pharmaceutical companies couldn't care less, it seems. To be honest I'd just like to be able to bend over and pick up something small on the floor without getting so out of breath.
Tommie, Arizona, May 05, 2005

• HI, My mother died of IHSS at 35, she was diagnosed at 8. My uncle, her brother was also diagnosed with IHSS but at 19. I am 21 and although I havent been tested since 8th grade I was pregnant and had a miscarriage at 2 months exactly. The babies heart just stopped beating. I was wondering if there is anyway that a fetus can have IHSS at that early stage of pregnancy?? I know with the severity it runs in my family that either my child or I will have it. Most doctors I talk to about IHSS have no clue what it is, My baby doctor has no idea if I could have lost it to IHSS? Or if I had it and don't know could that help in losing the baby?
Crystal Moralez, Clovis, New Mexico, USA, April 05, 2005

• My husband has IHSS (he has had it for about 25 years) and they want to put a dual pacemaker in. He also has diabetes, diabetic neuropathy, sleep apnea, arthritis, kidney failure, carpal tunnel. Is it worth him getting this surgery for him? Would love to chat to someoneabout IHSS.
Sue Koellner, Akron, Ohio, January 25, 2005

• I am 32 years old and am scheduled for the alcohol ablation procedure to help my HCM with obstruction. I would greatly appreciate any comments and information regarding the septal alcohol ablation procedure and its results. Thank you.
Jef Fearn, Brea, California, USA, 03 May 2004

• I am 34 years old. I was diagnosed with IHSS 13 years ago and have since undergone a septal myectomy at Mayo Clinic. What a wonderful experience... that is an awsome place! I am now thinking about a baby... any thoughts on pregnancy?
Kim Hansen, Grand Rapids, Michigan, USA, 20 Jan 2003

• My husband was diagnosed with IHSS in 1970. He has been very active all these years and has been on Inderal. Our son has it also. He has gone into atrial fibralation these past two months. He had a carioverson (sp?) in July and the heart didn't stay in sync. He had it done again this week. He doesn't feel very well and is having fever and a slight cough. I want to know if there is any other options if it won't get back in sync.
Sue Howard, , Lamesa, TX , 18 Oct 2002

• I am a 55 years old. I was diagnosed about 10 years ago with IHSS. I have been controlled on Tenormina 25mg 2 times a day until this past week. I had my first experience with atrial fibrillation and was hospitalized. I now also take Tambakor 100mg 2 times a day. My Dr.says I need to consider surgery or perhaps the newer procedure, septal ablation with alcohol. I would like to hear from anyone who may have any comments or information about these procedures.
Sue Harry, Largo, Florida, USA, 10 Jul 2002

• I am 48 years old. I had the alcohol ablation procedure done in March 99 and again in November 99. Today I run on a daily basis and have participated in 4 10K road races and finished them all. I raced my 18yr old son up the Eiffel Tower and ran the bulls in Pamplona, Spain last year. 3 years out and doing great !!!
Dave Colunga, Carrollton, Texas, USA, 12 Jun 2002

• I am 29 years old. I was diagnosed with IHSS in 1996. I was 13 weeks pregnant with my second daughter at the time. So, I had to go through the pregancy with no meds. etc. They watched me closely though. I had a Dual Pacer put in in 10/98, and it seems to work okay, but I am still constantly out of breath, and have absoultely NO ENERGY!!! I take Norpace 2 times a day, and Tenormin 100mg once a day at bedtime. I also take lasix (foresumide) and K-dur when needed. My father has the disease as well. His brother passed away at the age of only 50 years old in 1993. My Grandmother also died young from the disease in 1982. My Aunt also has it and also has a Pacer. I to worry about my children showing signs. I just want to feel better and live a better life. We are in financial debt, because I can't barley even get out of bed!!! My doctor says it's all in my head pretty much and just to get some exercise. It hurts to exercise though. I feel trapped. I need some heavy duty advice. My marriage is even affected by it. I am not a happy person any more. Please... somebody help!!!
Tracy L. Copeland-Copper, California, USA, 5 Dec 2001

• I was diagnosed with IHSS several years ago. Have since given birth to a son, but my heart was watched constantly thru the pregnancy. My dr. now talks about possible surgery, or other procedures to get rid of the thickening. Can I learn about your experiences with the procedures?
Debbie Smith, Maryland, USA, 23 Oct 2001

• I am 45 years old. I have had IHSS for 20 years. I would love to chat with anyone that has this condition.
David, 9 Oct 2001

• I am not sure if there is a national database that keeps records with such information. I also have IHSS. I am 26 but my father had it also. He died at age 37.
Chris, Virginia, USA, 30 Jul 2001

• I am 42 years old and I have IHSS with a dual pacemaker and taking Verapamil SR 240mg. twice a day and atenolol a day,aspirin 325mg. every other day and norpace cr 300mg. twice a day. My doctors wants me to go for echo every six months. What do you think?
Richard Edmonds, Naples, Florida, USA, January 26, 2000

I have had IHSS since I was 16 yrs. old. I'm told that this was a very young age for this diagnosis. I'm now 19 yrs. old. My father, grandfather, great-grandmother and two uncles all have IHSS. My grandfather and father used to make a plane trip once a year to N.I.H. in Bethesda, Maryland to be prescribed trial medications. How would I find out the youngest age reported with a diagnosis of IHSS?
Michael Davis, Huntingdon, Tennessee, USA, January 11, 2000

• I am looking for additional information on IHSS. My wife died of this (at 34yrs old) after having this disease ruled out 10 days prior to her attack.
Tom Dolan, Florida, USA, December 9, 1999

• My husband has IHSS and will have surgery early in Dec 1999 at the Cleveland Clinic. He would like to talk to anyone (via e-mail) that has had the surgery.
Jane Rademacher, Longmont, Colorado, USA, November 11, 1999

• Dear Sirs & Madams,
On behalf of a dear friend whose kids have contracted the Marfan Disease. They are taking Tenormin. Could you give your expert advice on helping the children's condition? Thank you. The e-mail address is attached.
Audrey, July 23, 1999

• I am a 28 year old female and was diagnosed with IHSS 7 years ago. In May of 1994 I had a Dual Chamber Pacemaker put in. It did not help, and within 3 months I was seeking a second opinion. Within 3 weeks of that opinion I had open heart surgery. I still have some problems but my quality of life is better, although I am permently disabled now because of the disease.
Brenda, Washington, USA, July 15, 1999

• HOCM (IHSS) can often be treated effectively by non-surgical myocardial reduction. The procedure is also called after the name of the original describer. If patients are symptomatic despite beta-blockers and have a significant outflow tract gradient they may indeed go for this modality.
Ulrich Sigwart, Royal Brompton Hospital, London, UK, May 19, 1999

• I am 17 yrs old and my mother has IHSS. I have been tested and I do not have the disease, but I was wondering if I could develop it later in life. Also, I thought that the heart surgery for IHSS had stopped being performed shortly after my grandfather's surgery for IHSS in 1983 at the Cleveland Clinic.
Brittany Coleman, Ohio, USA, March 25, 1999

• We are interested in finding out as much about this problem as we can. We just found out that my husband's paternal grandfather has this problem, and also just found out that we're expecting our first child - after years of frustration and trying. Needless to say, we want this child to be healthy and happy. therefore, we need to know about this problem so that we can inform my OBGYN so that he can make decisions about in utero testing. If anyone can provide us with more information, it would be greatly appreciated. THANKS !
Mr. and Mrs C. Varner, Pennsylvania, USA, September 16, 1998

• My wife who is 72 years old has IHSS and her blood presure is approximately 190/80. She was placed on Maxide, a water pill, to reduce the hypertension. The IHSS recently made her out of breath and dizzy. Both calcium and beta blockers all has severe side effects. Tenormin appeared to have the least side effects, but her quality of life was poor. I took it on myself to reduce the Tenormin from 50 mgrs to 12.5 mgrms per day with 17.5 mgrs of Maxide. She had the best six months in the past 3 years. We live in Phoenix Arizona and when the temperature reached 120 F she completely fell apart. I determined that her body fluid was depressed due to the temperature and eliminated the Maxide and increased the Tenormin. She appears to be improving. I would like to know should a person with IHSS with a presure gradient of 30mm be on a water pill especially during hot weather.
Seymour Licht P.E., engineer, Arizona, USA, July 17, 1998

• I have Hypertrophic Cardiomyopathy (HCM) another name for IHSS. Most of my family has it (I am a 46-year-old male). We have been not terribly adversely affected but I have had brief runs of v-tach and my brothers have had a fib. For the person taking Tenormin, it did the same for me and I was substituted with Verapamil which got rid of those side effects. My family also has pituitary tumors (3 people) and mild to moderate hand abnormalities in addition to mild hypermobility. Can all of this be related to HCM and how is it?
Tom Scott, patient, Maryland, USA, January 26, 1998

• I have IHSS and would like to know if any research has been done that will help to prevent the heart from getting worse?
Darlene Myers, patient, USA, December 29, 1997

• I am a 54 year old woman with IHSS. I had dual chamber pacemaker implanted July 1996. I take Tenormin 100 mg. in a.m. and 50 mg. in p.m. I am still very fatigued and am becoming depressed. Any suggestions to correct these problems would be appreciated. I'm also looking for a support group. Local Mended Hearts group not able to identify with my condition. Thanks.
Sharon Binder, patient, USA, October 27, 1997

• I agree with Dr. Varela. I'm an interventionalist and if you already have a pacemaker implanted, you are partly protected for some complications of that septal embolization -like heart block-. This technique is getting wide acceptance, begining in the UK. I read a paper from India - Cathet Cardiovasc Diagn; May 1997 issue-. They report a case with good result, and almost abolition of intraventricular gradient. Try septal embolization instead of surgery. Bye M. Kinergy.
Sergio Mejia, M.D., Ph.D., "Santa María" Cardiovascular Center, Medellin, COLOMBIA, July 3, 1997

• There is data from Dr. Sigwart [Dr. Ulrich Sigwart of the Royal Brompton Hospital in London — ed.] about causing an occlusion of the related septal branch using percutaneous approach. That will decrease the outflow tract gradient and relieve the symptoms. Try asking your physician about this instead of surgical treatment. Good luck, Kingery.
Alexandre Manoel Varela, Hospital Universitário Cajuru - PUC, BRAZIL, June 3, 1997

• I have Idiopathic Hypertrophic Subaortic Stenosis. I have a dual chamber pacemaker and am on Norpcace CR. Any comments about my treatment? I am a 39 yr. old female and was diagnosed 2 yrs. ago. Have had pacer since August l995. There was talk of open heart surgery to remove excess muscle tissue.
M. E. Kingery, patient, June 3, 1997

add your response
Please keep your posting concise. For readability we limit responses to 1,200 characters. Also note that The Forum is not an "ask-a-doctor" service; we do not dispense medical
advice about a patient's specific situation. Read our disclaimer and note that no information
on this Forum should be viewed as a substitute for medical advice or as a consultation
with a medical doctor
: characters left

Forum name -- how do you want to be identified on your post (Required) your email address (Required):
email address must be current and valid; if email sent to the address
below is returned, your comments will not be posted; your email address
will not be displayed on the Forum unless you specifically request it: please enter your email address again (for verification)
geographic location (city, state, province and/or country -- Required):
REQUIRED -- Check the box below to let us know you are a "real human being" and not a spambot. You must check this box for your posting to be submitted: I am a real person and not a spambot The following information is optional. your name:

your organization:
Check the box below if you wish Angioplasty.Org to "anonymize" your posting (for example, John Doe, Baltimore, Maryland, USA would become John D., Maryland, USA): please anonymize me To submit your post, please click the button below once and wait for a confirmation.
Clicking more than once will result in multiple submissions.