Hi @holly1275
I am so sorry to hear about your obstruction from HOCM coming back after going through a septal myectomy.
That has to be shocking and frustrating. No wonder you are feeling devastated!
There are a couple of members here on Connect that had the same thing. One of them recently, just last year.
In both cases their septal myectomy was performed in a facility that did not have the experience of the Mayo Clinic Rochester, or Cleveland Clinic, and was not a COE (Center of Excellence) for this precise procedure.
I see that we have communicated a couple of times last year and you were thinking of trying to get an appointment at the Mayo Clinic in Rochester.
Where was your surgery performed?
If you want to read the recent members who had this same scenario, read this: https://connect.mayoclinic.org/comment/1104597/
and this: https://connect.mayoclinic.org/comment/1131128/ @dbrima had the misfortune of having this twice and had a rough road to walk. I hope you can read some of her posts and get some good information from her experience.
Have you considered a second opinion?
Hi @holly1275
I am so sorry to hear about your obstruction from HOCM coming back after going through a septal myectomy.
That has to be shocking and frustrating. No wonder you are feeling devastated!
There are a couple of members here on Connect that had the same thing. One of them recently, just last year.
In both cases their septal myectomy was performed in a facility that did not have the experience of the Mayo Clinic Rochester, or Cleveland Clinic, and was not a COE (Center of Excellence) for this precise procedure.
I see that we have communicated a couple of times last year and you were thinking of trying to get an appointment at the Mayo Clinic in Rochester.
Where was your surgery performed?
If you want to read the recent members who had this same scenario, read this: https://connect.mayoclinic.org/comment/1104597/
and this: https://connect.mayoclinic.org/comment/1131128/ @dbrima had the misfortune of having this twice and had a rough road to walk. I hope you can read some of her posts and get some good information from her experience.
Have you considered a second opinion?
My surgery was on Oct 2 at a hospital in FL.
I spent a total of twelve days in the hospital
I tried to get an appointment at Mayo Clinic here in FL but they didn't
accept my insurance.
It was an experience, that I don't want to do over again.
I had an appointment on April 2nd with my cardiologist and asked her if
she could do another Echo as my health wasn't what it should be.
That's when she called me on Friday and confirmed my suspicion, that it was
back.
It is back up Moderate, with SAM, and hyperdynamic ..
With severa
LVOT is Peak PG Of 46 mm hg at rest and 120 mm hg with Valsva ..
Moderate Mitral regurgitation ..
And pulmonary 40
As far as a second opinion I haven't looked into it as yet .
I thank you for your information you have sent..
God Bless
My surgery was on Oct 2 at a hospital in FL.
I spent a total of twelve days in the hospital
I tried to get an appointment at Mayo Clinic here in FL but they didn't
accept my insurance.
It was an experience, that I don't want to do over again.
I had an appointment on April 2nd with my cardiologist and asked her if
she could do another Echo as my health wasn't what it should be.
That's when she called me on Friday and confirmed my suspicion, that it was
back.
It is back up Moderate, with SAM, and hyperdynamic ..
With severa
LVOT is Peak PG Of 46 mm hg at rest and 120 mm hg with Valsva ..
Moderate Mitral regurgitation ..
And pulmonary 40
As far as a second opinion I haven't looked into it as yet .
I thank you for your information you have sent..
God Bless
I am so sorry that this happened to you, I read about someone from Texas had a similar experience a few months ago, perhaps it was @dbrima. Debra, known as @karukgirl, our mentor, wrote everything that I would say. About the insurance: Florida and Minnesota have different insurance guidelines. Florida apparently does not accept Medicare Advantage Plans, I do not know your insurance circumstances. Please RUN, do not walk, to your phone and find out if Mayo in Rochester will accept your insurance. Check our Cleveland Clinic, too, while you are at it. My nonprofit Advantage Plan paid Mayo in Rochester, no questions asked even though it was out of network, the surgery is not done in any hospitals in my plan area. Mayo in Jacksonville does not do septal myectomies, anyway. Please let us know how things are coming along.
I am so sorry that this happened to you, I read about someone from Texas had a similar experience a few months ago, perhaps it was @dbrima. Debra, known as @karukgirl, our mentor, wrote everything that I would say. About the insurance: Florida and Minnesota have different insurance guidelines. Florida apparently does not accept Medicare Advantage Plans, I do not know your insurance circumstances. Please RUN, do not walk, to your phone and find out if Mayo in Rochester will accept your insurance. Check our Cleveland Clinic, too, while you are at it. My nonprofit Advantage Plan paid Mayo in Rochester, no questions asked even though it was out of network, the surgery is not done in any hospitals in my plan area. Mayo in Jacksonville does not do septal myectomies, anyway. Please let us know how things are coming along.
Thank you for remembering me, Dr. Derani at the Mayo Clinic told me he has to do “re-dos” all the time. In my case, my cardiologist in Texas was afraid to remove too much tissue. Dr. Derani took 10 x the amount. I have recovered but not emotionally. I feel confused, anxious, and sad. I am working out a little and trying to raise my son. Next week I get an echo and will write if this surgery was successful. I had it this past July and although I have had good reports from visits with my local cardiologist, I have not had an echo yet. I am getting blood work done next week as I am worried I am not feeling well. Hopefully, it’s just potassium or water weight. My thoughts and prayers are with you and I understood the magnitude and weight of all of this. What a dreadful disease!
@holly1275, maybe this will be a helpful link: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us
Mayo Rochester (affectionately known as the Mother Ship) is the leading center of excellence for septal myectomy. World wide leader.
I would heed the advice of @walkinggirl and "RUN" to check if your insurance is accepted at Mayo Rochester. I know Medicare is, and many advantage plans as well.
This is not something you want to trust to just any hospital, as you now know.
I encourage you to put yourself first in this case, and be your own best advocate. You need the best surgeons for this surgery. This should not be about location or convenience. It's your life and future.
Please read the response you got from @dbrima. She has been through an emotional war and came through...not without scars for sure. From actually getting worse on Camzyos to a failed septal myectomy in Texas to ending up at Mayo Rochester...she knows for certain how important it is to have this procedure performed by experts. Experts who do many not just a few!
I cannot emphasize enough... you need a COE Center of Excellence for a septal myectomy. Period.
Thank you for remembering me, Dr. Derani at the Mayo Clinic told me he has to do “re-dos” all the time. In my case, my cardiologist in Texas was afraid to remove too much tissue. Dr. Derani took 10 x the amount. I have recovered but not emotionally. I feel confused, anxious, and sad. I am working out a little and trying to raise my son. Next week I get an echo and will write if this surgery was successful. I had it this past July and although I have had good reports from visits with my local cardiologist, I have not had an echo yet. I am getting blood work done next week as I am worried I am not feeling well. Hopefully, it’s just potassium or water weight. My thoughts and prayers are with you and I understood the magnitude and weight of all of this. What a dreadful disease!
Oh @dbrima! I have never forgotten you!
You touched my heart and I prayed for you many times. I often wonder how you are doing.
Thank you for reaching out and offering your experience to someone who is facing what you did and has fear like you did.
I hope your tests and echo come back with only positive results. You certainly have been through the proverbial wringer.
You have a lot on your plate with a little son, which I am sure is a big responsibility, but you have to put your health first...otherwise you can't be the best mom you want to be.
So do take care of you! And please come back share how you are doing.
Your courage to go through this twice and be able to share with others, means more than you know. You never know how your story will impact someone else who needs to hear what you can share.
God bless you too!
@holly1275, maybe this will be a helpful link: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us
Mayo Rochester (affectionately known as the Mother Ship) is the leading center of excellence for septal myectomy. World wide leader.
I would heed the advice of @walkinggirl and "RUN" to check if your insurance is accepted at Mayo Rochester. I know Medicare is, and many advantage plans as well.
This is not something you want to trust to just any hospital, as you now know.
I encourage you to put yourself first in this case, and be your own best advocate. You need the best surgeons for this surgery. This should not be about location or convenience. It's your life and future.
Please read the response you got from @dbrima. She has been through an emotional war and came through...not without scars for sure. From actually getting worse on Camzyos to a failed septal myectomy in Texas to ending up at Mayo Rochester...she knows for certain how important it is to have this procedure performed by experts. Experts who do many not just a few!
I cannot emphasize enough... you need a COE Center of Excellence for a septal myectomy. Period.
Unfortunately I tried, and I have the worse insurance and it covers only a few places here in FL.
With limited insurance I had it done here in Fl at a hospital that has done a number of Septical Myectomy, my First choice would have been Mayo in Rochester, but that was not going to happen they don't cover it there.
I prayed that the out Come was going to be better than this , I tried all medication including camzyos, it didn't work and other medication .
nothing worked ..
My cardiologist recommended Mayo Hospital but again my insurance doesn't cover it
And I am not on Medicare I am not old enough for that yet.
I am devastated to know that it's has come back but sometimes in life we try and things don't turn out the way it should.
I can hope and pray that things get better
Thank you for your response and advise ...
Thank you for remembering me, Dr. Derani at the Mayo Clinic told me he has to do “re-dos” all the time. In my case, my cardiologist in Texas was afraid to remove too much tissue. Dr. Derani took 10 x the amount. I have recovered but not emotionally. I feel confused, anxious, and sad. I am working out a little and trying to raise my son. Next week I get an echo and will write if this surgery was successful. I had it this past July and although I have had good reports from visits with my local cardiologist, I have not had an echo yet. I am getting blood work done next week as I am worried I am not feeling well. Hopefully, it’s just potassium or water weight. My thoughts and prayers are with you and I understood the magnitude and weight of all of this. What a dreadful disease!
Thank you for sharing..
I hope things are well for you and you get good news on your upcoming tests .
I wish I was able to go to Mayo in Rochester to have had my Septical Myectomy but my insurance wouldn't cover it.
I had mine done by a surgeon that has experience here in FL
he was recommended by my cardiologist .
I can't explain how I feel confused angry , sometimes I blame myself it a emotional roller coaster.
But I am trying to stay positive so down and try to find out what to do from here .
Hearing your story broke my heart,
Thank you so much for the kind words, and God Bless
Thank you for sharing..
I hope things are well for you and you get good news on your upcoming tests .
I wish I was able to go to Mayo in Rochester to have had my Septical Myectomy but my insurance wouldn't cover it.
I had mine done by a surgeon that has experience here in FL
he was recommended by my cardiologist .
I can't explain how I feel confused angry , sometimes I blame myself it a emotional roller coaster.
But I am trying to stay positive so down and try to find out what to do from here .
Hearing your story broke my heart,
Thank you so much for the kind words, and God Bless
There is the Samaritan Fund at Mayo Rochester, it's used for various things pertaining to Mayo and patient care. I have been contributing to it yearly since my surgery in 2022. Please look into it, Holly.
Connect
Connect
Like
Helpful
Hug
Hi @holly1275
I am so sorry to hear about your obstruction from HOCM coming back after going through a septal myectomy.
That has to be shocking and frustrating. No wonder you are feeling devastated!
There are a couple of members here on Connect that had the same thing. One of them recently, just last year.
In both cases their septal myectomy was performed in a facility that did not have the experience of the Mayo Clinic Rochester, or Cleveland Clinic, and was not a COE (Center of Excellence) for this precise procedure.
I see that we have communicated a couple of times last year and you were thinking of trying to get an appointment at the Mayo Clinic in Rochester.
Where was your surgery performed?
If you want to read the recent members who had this same scenario, read this:
https://connect.mayoclinic.org/comment/1104597/
and this:
https://connect.mayoclinic.org/comment/1131128/
@dbrima had the misfortune of having this twice and had a rough road to walk. I hope you can read some of her posts and get some good information from her experience.
Have you considered a second opinion?
-
Like -
Helpful -
Hug
1 ReactionMy surgery was on Oct 2 at a hospital in FL.
I spent a total of twelve days in the hospital
I tried to get an appointment at Mayo Clinic here in FL but they didn't
accept my insurance.
It was an experience, that I don't want to do over again.
I had an appointment on April 2nd with my cardiologist and asked her if
she could do another Echo as my health wasn't what it should be.
That's when she called me on Friday and confirmed my suspicion, that it was
back.
It is back up Moderate, with SAM, and hyperdynamic ..
With severa
LVOT is Peak PG Of 46 mm hg at rest and 120 mm hg with Valsva ..
Moderate Mitral regurgitation ..
And pulmonary 40
As far as a second opinion I haven't looked into it as yet .
I thank you for your information you have sent..
God Bless
-
Like -
Helpful -
Hug
2 ReactionsI am so sorry that this happened to you, I read about someone from Texas had a similar experience a few months ago, perhaps it was @dbrima. Debra, known as @karukgirl, our mentor, wrote everything that I would say. About the insurance: Florida and Minnesota have different insurance guidelines. Florida apparently does not accept Medicare Advantage Plans, I do not know your insurance circumstances. Please RUN, do not walk, to your phone and find out if Mayo in Rochester will accept your insurance. Check our Cleveland Clinic, too, while you are at it. My nonprofit Advantage Plan paid Mayo in Rochester, no questions asked even though it was out of network, the surgery is not done in any hospitals in my plan area. Mayo in Jacksonville does not do septal myectomies, anyway. Please let us know how things are coming along.
-
Like -
Helpful -
Hug
2 ReactionsThank you I will check on both..
Thank you for remembering me, Dr. Derani at the Mayo Clinic told me he has to do “re-dos” all the time. In my case, my cardiologist in Texas was afraid to remove too much tissue. Dr. Derani took 10 x the amount. I have recovered but not emotionally. I feel confused, anxious, and sad. I am working out a little and trying to raise my son. Next week I get an echo and will write if this surgery was successful. I had it this past July and although I have had good reports from visits with my local cardiologist, I have not had an echo yet. I am getting blood work done next week as I am worried I am not feeling well. Hopefully, it’s just potassium or water weight. My thoughts and prayers are with you and I understood the magnitude and weight of all of this. What a dreadful disease!
-
Like -
Helpful -
Hug
4 Reactions@holly1275, maybe this will be a helpful link:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us
Mayo Rochester (affectionately known as the Mother Ship) is the leading center of excellence for septal myectomy. World wide leader.
I would heed the advice of @walkinggirl and "RUN" to check if your insurance is accepted at Mayo Rochester. I know Medicare is, and many advantage plans as well.
This is not something you want to trust to just any hospital, as you now know.
I encourage you to put yourself first in this case, and be your own best advocate. You need the best surgeons for this surgery. This should not be about location or convenience. It's your life and future.
Please read the response you got from @dbrima. She has been through an emotional war and came through...not without scars for sure. From actually getting worse on Camzyos to a failed septal myectomy in Texas to ending up at Mayo Rochester...she knows for certain how important it is to have this procedure performed by experts. Experts who do many not just a few!
I cannot emphasize enough... you need a COE Center of Excellence for a septal myectomy. Period.
-
Like -
Helpful -
Hug
2 ReactionsOh @dbrima! I have never forgotten you!
You touched my heart and I prayed for you many times. I often wonder how you are doing.
Thank you for reaching out and offering your experience to someone who is facing what you did and has fear like you did.
I hope your tests and echo come back with only positive results. You certainly have been through the proverbial wringer.
You have a lot on your plate with a little son, which I am sure is a big responsibility, but you have to put your health first...otherwise you can't be the best mom you want to be.
So do take care of you! And please come back share how you are doing.
Your courage to go through this twice and be able to share with others, means more than you know. You never know how your story will impact someone else who needs to hear what you can share.
God bless you too!
-
Like -
Helpful -
Hug
3 ReactionsUnfortunately I tried, and I have the worse insurance and it covers only a few places here in FL.
With limited insurance I had it done here in Fl at a hospital that has done a number of Septical Myectomy, my First choice would have been Mayo in Rochester, but that was not going to happen they don't cover it there.
I prayed that the out Come was going to be better than this , I tried all medication including camzyos, it didn't work and other medication .
nothing worked ..
My cardiologist recommended Mayo Hospital but again my insurance doesn't cover it
And I am not on Medicare I am not old enough for that yet.
I am devastated to know that it's has come back but sometimes in life we try and things don't turn out the way it should.
I can hope and pray that things get better
Thank you for your response and advise ...
-
Like -
Helpful -
Hug
2 ReactionsThank you for sharing..
I hope things are well for you and you get good news on your upcoming tests .
I wish I was able to go to Mayo in Rochester to have had my Septical Myectomy but my insurance wouldn't cover it.
I had mine done by a surgeon that has experience here in FL
he was recommended by my cardiologist .
I can't explain how I feel confused angry , sometimes I blame myself it a emotional roller coaster.
But I am trying to stay positive so down and try to find out what to do from here .
Hearing your story broke my heart,
Thank you so much for the kind words, and God Bless
-
Like -
Helpful -
Hug
2 ReactionsThere is the Samaritan Fund at Mayo Rochester, it's used for various things pertaining to Mayo and patient care. I have been contributing to it yearly since my surgery in 2022. Please look into it, Holly.