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Idiopathic Hypertrophic Subaortic Stenosis (IHSS)
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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. • 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. • 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. www.4hcma.org once you join there is a forum where you can speak with others who are walking this same path. • 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. • 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? • 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). • 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. • 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? • 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. • 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. • 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. • 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. • Armando --
if you want to contact Dr. Makkar, we would suggest calling his office
at Cedars-Sinai. His web page profile
is at http://www.cedars-sinai.edu/Bios---Physician/H-O/Rajendra-Raj-Makkar-MD.aspx • 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. • 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 • 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.] • For more information about HCM, and a list
of Centers of Excellence for the treatment of HCM, visit: The Hypertrophic
Cardiomyopathy Association at: www.4hcm.org • 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? • i have IHSS for many years. feel OK. looking for a NJ dr who specializes
in treating this condition. Thanks, Steve • 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. • 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. • 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!! • 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!!! • 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? • 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. • 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????? • 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. • 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. • 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. • 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. • 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. • 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. • 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. • 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 • Mother from Oklahoma -- our deepest sympathies
for your losses. You'll be in the thoughts of our readers. • 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. • 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. • 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. • 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 • 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? • 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 tedstephens@bellsouth.net • 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. • 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. http://www.winthrop.org/departments/clinical/cardiology/hypertrophic • 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. • 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. • 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. • 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 • 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. • Would like Julie Wilson,California May 08 having
an ablation to respond and let me know how it went----- • 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.. =] • 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. • 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 adjusted...it 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. • Connie -- you should contact Mayo directly. Here's
their page on IHSS: http://www.mayoclinic.org/hypertrophic-cardiomyopathy • 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. • 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. • 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!! • 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. • 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? • 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 • 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. • I AM 43 YEARS OLD I WAS DIAGNOSED WITH IHSS ABOUT6
YEARS AGO I WOULD FEEL LIKE I WAS BEING SQEEZED BY PYTHON I AM ON 360
MG OF VERAPAMIL IT HELPS BUT EVERY NOW AND THEN I STILL HAVE ATTACK I
AM A
FIELD MECHANIC I DO A LOT OF CLIMBING ON EQUIPMENT AND SOMETIMES I FEEL
LIKE IM GOING TO PASS OUT WHAT SHOULD I DO
THANKS. • 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 day.it 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. • 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. • 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 tkkbosco@aol.com any
questions good luck • 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. • 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. • 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 • 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. • 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. • 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. • 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. • 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 kristinaluking@msn.com. • 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. • HI. MY NAME IS TRACY. A FEW WEEKS AGO MY FATHER
AT THE AGE OF 45 HAD A HEART ATTACK AND NOW IS DIAGNOSED IHHS. I AM REALLY
CONFUSED ABOUT WHAT IT IS AND WHAT HAPPENS AND IF THEIR IS HOPE. PLEASE
EMAIL ME AND GIVE SOME INFORMATION SO THAT I CAN BETTER UNDERSTAND MY FATHERS
CONDITION. • 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. • 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. • 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. • 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. • 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. • 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. • HI DAVID I WOULD LIKE TO TALK TO YOU E-MAIL ME
IF U LIKE MAMIWITATTITUDEE@AOL.COM • 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. • I WAS DIAGNOSED WITH HOCM BUT I DO NOT HAVE ANY
FAMILY MEMBERS WHO HAS THIS CONDITION AND THE HOSPITAL THAT DIAGNOSED ME
DID NOT RULE OUT ANYTHING ELSE LIKE HYPERTENSION OR THAT I AM EXTREMELY
OVER WEIGHT OR ANY THING LIKE THAT CAN SOMEONE PLEASE GIVE ME ADVICE ON
WHAT TO DO FROM HERE THEY SAID MY VENTRICLE THICKNESS IS 1.8 • 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, • 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. • my childs father has ihss, what age will we know
if she has this condition and what is the life span for this also • 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? • 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. • 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. • 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. • 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. • 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? • 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. snuzysue@neo.rr.com • 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. • 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? • 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. • 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. • 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 !!! • 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!!! • 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? • I am 45 years old. I have had IHSS for 20 years.
I would love to chat with anyone that has this condition. • 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. • I am 42 years old and I have IHSS with a dual
pacemaker and taking Verapamil SR 240mg. twice a day and atenolol 100mg.one
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? 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? • 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. • 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. • Dear Sirs & Madams, • 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. • 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. • 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. • 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 ! • 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. • 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? • I have IHSS and would like to know if any research
has been done that will help to prevent the heart from getting worse? • 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. • 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. • 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. • 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. |
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