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.

@danab

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.

Jump to this post

So you feel better now and are happy that you had transplant obviously?? It just scares me so. Thank you and continued good health to you!

REPLY
@danab

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.

Jump to this post

Thank you so much!! I responded to your other message also. The very best wishes for you!

REPLY

I have been trying with little luck to contact the MD and clinical trials group at MAYO for the SERF treatment. I believe I am a good candidate, as too old for septal myectomy or apical septal myectomy. Anyone heard of this?

REPLY
@susala

I have been trying with little luck to contact the MD and clinical trials group at MAYO for the SERF treatment. I believe I am a good candidate, as too old for septal myectomy or apical septal myectomy. Anyone heard of this?

Jump to this post

Hi, @susala. Here is the contact information for clinical trials at Mayo Clinic:

- Clinical Trials - Mayo Clinic
https://www.mayo.edu/research/clinical-trials/contact

You can also search for the specific clinical trial you are looking for as well. If you've already found one that you think you are a good candidate for, fill out the form for the clinical trial you have found and if you are a candidate they should contact you. I was able to find one study on SERF, but it does not look like it is currently open.

@susala, you mentioned you were too old for myectomy, have you discussed any other options with your provider? Have you explored the SERF treatment elsewhere if there are no options available at Mayo Clinic?

REPLY
@JustinMcClanahan

Hi, @susala. Here is the contact information for clinical trials at Mayo Clinic:

- Clinical Trials - Mayo Clinic
https://www.mayo.edu/research/clinical-trials/contact

You can also search for the specific clinical trial you are looking for as well. If you've already found one that you think you are a good candidate for, fill out the form for the clinical trial you have found and if you are a candidate they should contact you. I was able to find one study on SERF, but it does not look like it is currently open.

@susala, you mentioned you were too old for myectomy, have you discussed any other options with your provider? Have you explored the SERF treatment elsewhere if there are no options available at Mayo Clinic?

Jump to this post

no luck reaching anyone Mayo--so emailed the contact at the company providing this treatment at Thermedical, and he wrote to have MD contact him saying this is the next best step. I also emailed Vanderbilt as they have it but never a reply. Will see what my MD does in Sept. I am here in RANCHO MIRAGE and Eisenhower not doing trial.

REPLY

has anyone been on the SERF clinical trial at Mayo? I was told it is closed now. I am trying to find other cardiology depts that are trying this clinical trial, but no luck. The head of it at Thermedical did say most cardiologists haven't read about this. My new one was not interested in helping me as he never heard of it. has anyone here had an MRI for heart study?

REPLY
Please sign in or register to post a reply.