IHSS after surgery

[nhagewood]

I am a 29 year old male and I was diagnosed with IHSS three years ago. My gradient was 64mm and they performed the surgery in February of 2008. Now, I am still having the symptoms I did before the surgery (just not as bad). The symptoms have calmed down, but I am still having palpatations, shortness of breathe, and occasional chest pains. Has anyone had the surgery and the disease came back? Is this even possible? I know the symptoms should still be there, but can the heart muscle grow back? That is what it feels like, because it feels like it is getting worse over time. If anyone can help, I wiould be very grateful.
Thanks in advance - Nic

[nhagewood]

I don't know if you can tell Kev, but this is my first support group...lol.

Thanks again.

[kevk]

You are welcome, That`s what a support group is for.

[nhagewood]

I am sorry to hear about your daughter, but it sounds like she is much better now. The doctors here in Birmingham at UAB, wanted me to get a transplant. But, the Mayo Clinic said they would like to try the surgery first. The Mayo Clinic is amazing, by the way. The experience I had there is the best that I have had at any hospital. I will talk to my doctor about changing my meds.

Is your daughter better now?

[nhagewood]

Thank you for that email that you sent. I may take you up on that offer. It would be ncie to talk to someone about this. Nobody in my social circle has ever heard of this disease, much less have any experience dealing with it. Give me some time but I may call you. Thanks again Kev, that was a really nice gesture.

[grendslori]

My daughter had a transplant due to this disease when she was 22. Usually patients with HCM (IHSS) take calcium channel blockers because those drugs can help to relax the heart muscle and makes it easier to fill. Ask your doctors about switching over to those types of drugs. My daughter never had an ICD even though she had several different electric problems with her heart as well (WPW, LBBB, RBBB, SSS, NSVT, A-Fib and a Mahiem Fiber), not all patients get them, my daughter had a duel chamber pacemaker put in when she was 7 for the SSS. You really need to be followed by a place that sees HCM patients; I saw that you were going to Mayo which is good. Most University Hospitals can also take care of patients with this disease as the University Hospitals are usually MAJOR medical facilities who also deal with transplants. Try going there for your care.

[kevk]

I could not have the surgery they said obstruction was to high in my heart so they implanted an ICD/Pacer. I have to pace myself to get through a active day because of my heart. I had to give up sports when I was younger but I went into coaching so it was like I never left.  My friends understand it better now and are very supportive.
Dealing with this disease has had ups and downs, at first lots of anxiety and depression and denial. Depression can play a real negative role and make you think things are worse than they are.
Hey going to send you an email..

[nhagewood]

What is an ICD?

I am going to look around for a new doctor, at least to get a second opinion. I am on Corgard (Beta Blocker) and I am taking 200mg per day. THat is the max dosage you can take of this medicine and it supposed to be the strongest medicine out there. I am not a doctor, so I have to take the doctors word for everything he tells me. They can't up my med's anymore, and it does not feel like they are working. Maybe I am just over dramatizing this entire thing. Maybe I am fine, I am just insecure about it after I found out abotu IHSS? Who knows, but I will look for a second opinion.

You have been living with IHSS for 24 years, have you had the surgery or anything? Have you limited your exertion to comply with the disease? I try not to let it limit me, but my body shuts down after working out a little. How are you dealing with this whole thing?

[kevk]

Everything is fine, Sounds like what my doctors say I know exactly how you feel.  Meds are doing pretty good at controlling my obstruction now that my lv has started to thin. But I still have diastolic dysfunction which mimics CHF  and can make you feel poorly. So they keep uping the beta blockers to get more movement in the left ventricle. Even if the doctors can remove or reduce your obstruction you will probably still have some level of diastolic dysfunction. If you are still having symptoms and the doctor will not listen I think it would be time to look for a new cardio doctor.
Do you have an ICD ?

[nhagewood]

Thank you for commenting, I was unsure if I was going to get any hits. I went to my doctor, but he seems to think everything is fine. I hope everything is fine, but it doesn't feel right. Does that make sense? I know my body, and I know what I feel. Maybe I need to switch doctors? My surgery was done at the Mayo Clinic in MN, and I would continue going there but I live in AL. I have been to the website (frequently) and I have not been able to find an answer for after surgery patients.

[kevk]

Hi,
I think you should call your doctor and have it checked out. I was diagnosed in 1985 with IHSS (Hypertrophic obstructive cardiomyopathy HOCM ) It can be a very tricky disease but it never go`s away. Have you been to the HCMA web site ? It is where I go for information regarding HCM.  

If your symptoms are returning or getting worse I would call the doctor. Let us know how things turn out.