Apical Hypertrophic Cardiomyopathy, Tachy & Myocardial Bridging

Posted by ch665296f @ch665296f, May 2, 2019

I have been through the gamut of tests and studies. I am scheduled for an electrophysiology study the end of this month. I understand that this study does nothing for the other conditions I have. I am curious as to what happens next? I'm on a boat load of meds, and not that interested in adding to that menu. Does anyone else have similar combinations of heart conditions, and how are they being treated. Thanks for any advice.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

@susala

I have all the issues you have and the myocardial bridging causes the thickened heart muscle and therefore v tachycardias. I couldn't/t take meds as I also have bradycardia and stage 1 diastolic disorder now. I have had holter tests and they all show v tachycardias at times but not too high. I am to go back to electrophysiologist cardiologist for review of latest holter. I am too old for apical septical myectomy(remove part of the heart muscle in area concerned). Mayo Clinic does it. supposedly replaces need for a heart transplant. If younger I would try that.

Jump to this post

I’ve just started following this support group and quite a few others on Mayo Connect for help ideas for both my husband’s and my medical conditions. One I wasn’t at all concerned about was my myocardial bridge, discovered when I had a minor heart attack over two years ago(husband had a massive ha a month later). I wasn’t aware that a myocardial bridge caused thickened heart muscle and v-tach. I’m interested in reading about your journey with it.

REPLY

I am going to request an appoint at Mayo Clinic for complete mapping and see if the new laparoscopic septal procedure is for me plus rf ablation. docs here keep doing beta blockers which are horrible for me. I am in Callif and, in Scottsdale AZ they have cardiac.

REPLY
@web28

I’ve just started following this support group and quite a few others on Mayo Connect for help ideas for both my husband’s and my medical conditions. One I wasn’t at all concerned about was my myocardial bridge, discovered when I had a minor heart attack over two years ago(husband had a massive ha a month later). I wasn’t aware that a myocardial bridge caused thickened heart muscle and v-tach. I’m interested in reading about your journey with it.

Jump to this post

Wow, @web28, both of you having a heart attack only a month apart must've been shocking as well as a caregiving challenge. How are you both doing now 2 years later?

REPLY
@susala

I am going to request an appoint at Mayo Clinic for complete mapping and see if the new laparoscopic septal procedure is for me plus rf ablation. docs here keep doing beta blockers which are horrible for me. I am in Callif and, in Scottsdale AZ they have cardiac.

Jump to this post

@susala, in case you need it, here's the link with more information on how to request an appointment http://mayocl.in/1mtmR63

REPLY
@colleenyoung

Wow, @web28, both of you having a heart attack only a month apart must've been shocking as well as a caregiving challenge. How are you both doing now 2 years later?

Jump to this post

We’re doing much better and hoping 2023 is a much better year. My husband was evaluated for a heart and kidney transplant but near the end they found H & N cancer which disqualified him. And during his radiation treatments my cervical spine became a mess resulting in surgery! But we’re both walking and enjoying life again.

REPLY
@web28

We’re doing much better and hoping 2023 is a much better year. My husband was evaluated for a heart and kidney transplant but near the end they found H & N cancer which disqualified him. And during his radiation treatments my cervical spine became a mess resulting in surgery! But we’re both walking and enjoying life again.

Jump to this post

Here's to 2023 being a good year. I believe you know this already, but just in case, there are 2 relevant support groups you may wish to follow and discussions to join here. I'm confident your collective experiences would be beneficial for other members.
- Head & Neck Cancer support group https://connect.mayoclinic.org/group/head-neck-cancer/
- Spine Health support group https://connect.mayoclinic.org/group/spine-health/

REPLY
@danab

Hi, I had one of the problems you mentioned in a prior post of Ventricular Tachycardia. I say this because as I had to look up the condition of apical hypertrophic cardiomyopathy is similar to what caused my problems. My issues were due to thickening of the heart muscle. Which I see is the same issue you have. During that period for me I also had a pacemaker with defibularter and was on antiarrhythmic drugs. But i also can say thru most of the time I had the condition i led a pretty normal life. so, I'm curious as to how you see your life now? are you having symptoms that are bothersome? Prior to my time that finally i had to go to the next step of heart transplant I lived with the pacemaker and medications for about 10 years with a few flair ups but overall, not too bad until finally my heart just was ready to give out and that's when heart transplant became available.

So, i guess I'm saying with the latest with pacemaker development maybe whatever is bothering you may just need some adjustment of the settings of the pacemaker and or medications. I found that once I found the right specialist who was familiar with my type of problem, He was able to make adjustments to help with things that bothered me. i might just add that the heart is so specialized these days and with all the treatment options finding the right doctor is key. as an example for me i started with a regular cardiologist I like to call the plumbing specialist who handles physical problems like stents and bypass type things, Then you have the EP (electro physiologist) cardiologist who handle the electrical issues, and even amongst them they split between the upper heart which is the AFIB issues and the lower part or the problem we deal(t) with the Ventriculus and even when I had the transplant is another specialist who handle just that area. so, I hope that helps. Please let me know if I can help further as I know for me back in those days knowing I wasn't alone was the biggest help. Hang in there and don't give up maybe just a little tweak could make a world of difference.

Jump to this post

May I ask where you found the right doctor and is it the same doctor that did your transplant? Thank you.

REPLY

Hi eedney welcomed to connect, Yes please ask any question you like. I started out with local cardiologist who refed me to a EP cardiologist who specialize in the electrical parts of the heart during my pacemaker days. I went thru 2 different ons and my last one was the one that was concerned we were running out of options and suggested an evaluation to see if I would be a good candidate for transplant. I live in Arizona, and he was familure with Mayo Clinic and had contacts there. So, he set me up to be sent there just for an evaluation, if the need arouse that part would be documented and speed up the process. Well I was transferred to Mayo from a hospital that this EP doctor had just been treating me at. He had just done my 6th ablation and that's when he felt it was probably the next step.
So at Mayo they work as a team of doctors who care for you and at the moment there are 5 in the team. they rotate and typically in a given month you would see a different one each week. Now at first i was concerned about this but actually Mayo does it well. They all work for Mayo and meet every week to discuss cases. and each week one may handle the office visits while another is on the hospital floor and another doing surgical procedures etc. The fact they all work for Mayo is a plus and it's like having a staff of well-trained doctors looking at each patient. The only exception is the actual transplant surgeon is part of the team but only does transplants as he is basically on 24 hour call to be ready whenever a Heart is available. But the whole time Mayo is on top of every aspect. So I'm not sure how other great hospitals do it but my experience is all Mayo Clinic since it was determined I needed a transplant. I still maintain a relationship with a local cardiologist in case of an emergency close to home but most of my care now is thru Mayo for heart related issues. The saying is once a Mayo patient always a Mayo patient. They will always be there to monitor the transplant.
I hope that answered the question. Are you looking at the possibility of a transplant?

REPLY
@danab

Hi eedney welcomed to connect, Yes please ask any question you like. I started out with local cardiologist who refed me to a EP cardiologist who specialize in the electrical parts of the heart during my pacemaker days. I went thru 2 different ons and my last one was the one that was concerned we were running out of options and suggested an evaluation to see if I would be a good candidate for transplant. I live in Arizona, and he was familure with Mayo Clinic and had contacts there. So, he set me up to be sent there just for an evaluation, if the need arouse that part would be documented and speed up the process. Well I was transferred to Mayo from a hospital that this EP doctor had just been treating me at. He had just done my 6th ablation and that's when he felt it was probably the next step.
So at Mayo they work as a team of doctors who care for you and at the moment there are 5 in the team. they rotate and typically in a given month you would see a different one each week. Now at first i was concerned about this but actually Mayo does it well. They all work for Mayo and meet every week to discuss cases. and each week one may handle the office visits while another is on the hospital floor and another doing surgical procedures etc. The fact they all work for Mayo is a plus and it's like having a staff of well-trained doctors looking at each patient. The only exception is the actual transplant surgeon is part of the team but only does transplants as he is basically on 24 hour call to be ready whenever a Heart is available. But the whole time Mayo is on top of every aspect. So I'm not sure how other great hospitals do it but my experience is all Mayo Clinic since it was determined I needed a transplant. I still maintain a relationship with a local cardiologist in case of an emergency close to home but most of my care now is thru Mayo for heart related issues. The saying is once a Mayo patient always a Mayo patient. They will always be there to monitor the transplant.
I hope that answered the question. Are you looking at the possibility of a transplant?

Jump to this post

Thank you so much for this wonderfully detailed answer. I believe the Mayo Clinic is rated the very best. I live in western NC am 61 years and was diagnosed with IHSS now called HCM in 1997. I have a familial history of the same. I continued with raising family and working until now. Just with a few meds. But now things are much worse. I have apical hypertrophy and ablation may or may not work but still have never tried it and on Monday my cardiologist suggested heart transplant which scares me so. Thank you again and I wish you all the best and many days of happy health!!

REPLY
@eedney

Thank you so much for this wonderfully detailed answer. I believe the Mayo Clinic is rated the very best. I live in western NC am 61 years and was diagnosed with IHSS now called HCM in 1997. I have a familial history of the same. I continued with raising family and working until now. Just with a few meds. But now things are much worse. I have apical hypertrophy and ablation may or may not work but still have never tried it and on Monday my cardiologist suggested heart transplant which scares me so. Thank you again and I wish you all the best and many days of happy health!!

Jump to this post

Your more than welcome and I'm now 5 years post-transplant and living a pretty normal life. I enjoy my daily 3-4 mile walks and a playing Golf so If I can help you as you progress in that direction Ill be here.

REPLY
Please sign in or register to post a reply.