Unexpected service from Mount Sinai NY

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sarashreen

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Hello Member.

I had appointment with Dr Hamamsy on 12/2 since my cardiologist recommended to see surgeon. Dr Hamamsy confirmed that I am the candidate for ROSS , he offered me ROSS since it is best for me and advised me to do surgery in February.

I had bunch of follow-up questions for him so I sent email to his office staff. After so many followups with her, she arranged call back from another doctor from Hamamsy’s team. The doctor called me on friday 1/6. He is doing residency at mount sinai. He is not expert. His answers were weird when I asked about my aortic annulus, aortic root, ascending aorta measurements.

First he told my aortic root is thin, why does it matter for you to know the size of aortic root. It doesn’t matter for ROSS. Its thin. Then he told root is 26 mm.

When I asked my aortic annulus size, he told its 23 mm. He told LVOT diameter is aortic annulus diameter which is 23 mm. He told he see it from my echo report. But when I looked at my echo report, nowhere it is mentioned.

I went back notes I had for the appointment with Dr Hamamsy on 12/2, he mentioned aortic annulus size is 26mm.

This is what Dr Hamamsy told us on 12/2 when I asked about tissue valve as backup.

“Your aortic annulus size is bigger than usual. It is 26 mm. So I would put bigger tissue valve either 25 mm or 27 mm. In this case , TAVR may be possible when tissue valve fails. All these we are talking about 1% backup if ROSS is not possible”

I feel like mount sinai is not taking good care of patients. This is high time careless mistakes mentioning about two different size of my aortic annulus. I am very upset.

When patient undergoing OHS for ROSS and have clarifications get answered by residency doctor instead of ROSS expert. I feel like they are playing with my life

I feel generally in USA, the nurses & office assistants are not paying full attention even during this kind of critical situation with patients.

Mount Sinai is claiming No 6 hospital in USA for heart valve surgeries. But their service is not even worth equivalent to local clinic near to my home.
 
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pellicle

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I feel generally in USA, the nurses & office assistants are not paying full attention even during this kind of critical situation with patients
This would make me lean more towards a mechanical valve, less possibility for them to make a mistake that shortens the potential life of the valve (and ruins the another in the case of a Ross)
 

Teapotimus

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Cleveland clinic, Baylor, University of Wisconsin Madison, and University of Washington all have dedicated Ross programs. I'm sure there are others as well. May be worth getting another opinion if Mt. Sinai isn't meeting your expectations.

Also, Mt. Sinai is having quite an issue with staffing at the moment, nursing strike. Might have something to do with the communication problems.
 

tommyboy14

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The success of your heart surgery doesnt depend on one person alone. Although as patients we are led to believe that it really is the surgeon who matters, the reality is that while the surgeon is very important, that person is only one part of a complex process. Did you know that normally there are three surgeons working on you (One head surgeon - the one that you meet and then two assistant surgeons to help open you up and close you again). As patients we also tend to underestimate the role of the Anaesthetist (the person who puts you to sleep). Normally this is the person monitoring your vitals and brain function during surgery. Then there is the cardiac and nursing care after the surgery. (Nurses watch over you to pick up any post surgery complications and adjust your meds accordingly).

All of these are important parts of your surgery. This is why it is really important to have confidence in the overall team that will be handling your surgery. I cant speak of the Cleveland Clinic US, but I had my surgery at the Cleveland Clinic London. Throughout my stay it became clear to me that everybody worked as one large team and all of the doctors that saw me knew my case backwards. The nurses that were at at the Cleveland Clinic London on rotation from the Cleveland Clinic US were all excellent and very caring.

Clearly, Mount Sinai has a very good reputation as a heart hospital (a previous head of the UN and more recently Bono got their surgeries there) . But if you feel that the team handling your case isnt the right one, then perhaps you need another discussion with the head surgeon for reassurance or perhaps you need to find another team that you have confidence in. Having confidence in your heart team/surgeon will mean less anxiety prior to surgery, but also less regret afterwards in the unlikely case if something goes wrong.
 

sarashreen

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May 28, 2015
Messages
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Location
PA, USA
The success of your heart surgery doesnt depend on one person alone. Although as patients we are led to believe that it really is the surgeon who matters, the reality is that while the surgeon is very important, that person is only one part of a complex process. Did you know that normally there are three surgeons working on you (One head surgeon - the one that you meet and then two assistant surgeons to help open you up and close you again). As patients we also tend to underestimate the role of the Anaesthetist (the person who puts you to sleep). Normally this is the person monitoring your vitals and brain function during surgery. Then there is the cardiac and nursing care after the surgery. (Nurses watch over you to pick up any post surgery complications and adjust your meds accordingly).

All of these are important parts of your surgery. This is why it is really important to have confidence in the overall team that will be handling your surgery. I cant speak of the Cleveland Clinic US, but I had my surgery at the Cleveland Clinic London. Throughout my stay it became clear to me that everybody worked as one large team and all of the doctors that saw me knew my case backwards. The nurses that were at at the Cleveland Clinic London on rotation from the Cleveland Clinic US were all excellent and very caring.

Clearly, Mount Sinai has a very good reputation as a heart hospital (a previous head of the UN and more recently Bono got their surgeries there) . But if you feel that the team handling your case isnt the right one, then perhaps you need another discussion with the head surgeon for reassurance or perhaps you need to find another team that you have confidence in. Having confidence in your heart team/surgeon will mean less anxiety prior to surgery, but also less regret afterwards in the unlikely case if something goes wrong.
Yes. Today I called their office and expressed my upset. Still I haven’t heard back from Dr Hamamsy’s office assistant. I have to chase her every time to get the things done. On other side, I personally dont like the way they are having residency doctor answering my questions for critical surgery. I am going to schedule another appointment with Dr Hamamsy to get reassurance
 

tom in MO

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Well 26mm is not that different from 23 mm. Also echos are not black and white, some things are open to interpretation. Plus the cardiac resident is probably more "expert" than you and maybe your notes are flawed.

My surgeon had a nurse practitioner and a physician's assistant available to answer questions. However, I didn't ask them my pre-surgery final questions. I made a second appointment before surgery to discuss things with the surgeon. Sending an email to a cardiac surgeon is like trying to talk to a deaf person facing away, you first have to get their attention. Make an appointment, you've already committed to them, it may not even be an additional cost.
 

sarashreen

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Well 26mm is not that different from 23 mm. Also echos are not black and white, some things are open to interpretation. Plus the cardiac resident is probably more "expert" than you and maybe your notes are flawed.

My surgeon had a nurse practitioner and a physician's assistant available to answer questions. However, I didn't ask them my pre-surgery final questions. I made a second appointment before surgery to discuss things with the surgeon. Sending an email to a cardiac surgeon is like trying to talk to a deaf person facing away, you first have to get their attention. Make an appointment, you've already committed to them, it may not even be an additional cost.
I had noted when surgeon told me it is 26 mm at his office so my notes are not flawed. Dr Hamamsy also has a nurse practitioner but I saw him only once few minutes and he did not share any contact info. I was ready for 2nd appointment with surgeon but the offiice assistant told me I dont have to drive 2 hrs so she would arrange call back. I will make an appointment, Thanks
 

Teapotimus

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When I asked my aortic annulus size, he told its 23 mm. He told LVOT diameter is aortic annulus diameter which is 23 mm. He told he see it from my echo report. But when I looked at my echo report, nowhere it is mentioned.

I went back notes I had for the appointment with Dr Hamamsy on 12/2, he mentioned aortic annulus size is 26mm.
Aortic annulus size is very important for the autologous support technique which has shown impressive results out of Australia. 3mm could be the difference between the need to resize the annulus or not. Not sure if this is the technique Hamamsy uses...

"The strategy for aortic root preparation has been previously described, and aims to achieve an ideal aortic annulus size of 22–24 mm diameter in women and 24–26 mm in men."

Here's a series using this technique, 85% free of reoperation and more than mild AR at 20 years in patients presenting with pure AR.


The technique is described in an impressive series of Ross patients from Dr. Skillington here.


Which claims only a 4% reoperation rate at 18 years, I believe I read a more recent study as well which noted that number remained at 4% at 20 years in this same patient series.

But again

"We always reduce the annulus or STJ if it is larger than 25 mm in male patients and 23 to 24 mm in female patients, regardless of the size of the PA."

These results are interesting, at least from the left side of the heart.

"Freedom from aortic valve reoperation is 96% (95% confidence interval, 92-98) at 18 years."

And

"There have been no reoperations for aortic root dilatation, and of 53 patients with echocardiography data to 15 years and more, only 5 (1.5% of all patients) have developed a maximum aortic root size in excess of 40 mm in diameter, and none exceed 43 mm."

But most importantly

"This study is predominantly a single surgeon experience that may not be generalizable, and the results may not be reproducible by others."
 
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pellicle

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Which claims only a 4% reoperation rate at 18 years, I believe I read a more recent study as well which noted that number remained at 4% at 20 years in this same patient series.
if you're citing this article

then you may have made a mistake in reading: into the second decade of follow-up as being twenty years, while 12 years is "into the second decade"

from the article

Follow-up is 97% complete (10 patients missing), and the mean follow-up period is 9.8 years

I understand that Teapot has me blocked so I'm writing this for the benefit of others.
 

sarashreen

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Joined
May 28, 2015
Messages
34
Location
PA, USA
Aortic annulus size is very important for the autologous support technique which has shown impressive results out of Australia. 3mm could be the difference between the need to resize the annulus or not. Not sure if this is the technique Hamamsy uses...

"The strategy for aortic root preparation has been previously described, and aims to achieve an ideal aortic annulus size of 22–24 mm diameter in women and 24–26 mm in men."

Here's a series using this technique, 85% free of reoperation and more than mild AR at 20 years in patients presenting with pure AR.


The technique is described in an impressive series of Ross patients from Dr. Skillington here.


Which claims only a 4% reoperation rate at 18 years, I believe I read a more recent study as well which noted that number remained at 4% at 20 years in this same patient series.

But again

"We always reduce the annulus or STJ if it is larger than 25 mm in male patients and 23 to 24 mm in female patients, regardless of the size of the PA."

These results are interesting, at least from the left side of the heart.

"Freedom from aortic valve reoperation is 96% (95% confidence interval, 92-98) at 18 years."

And

"There have been no reoperations for aortic root dilatation, and of 53 patients with echocardiography data to 15 years and more, only 5 (1.5% of all patients) have developed a maximum aortic root size in excess of 40 mm in diameter, and none exceed 43 mm."

I have tricuspid AV with severe AR.

As per Dr Hamamsy My Aortic annulus size is 26 mm , Aortic root is 26 mm.

From CT and MRI, my STJ 26 mm, Ascending aorta is 29 mm. Dr Hamamsy told me I am the best candidate for ROSS , they feel it benefits me lot so they offer it.

Dr Hamamsy does the below refined technique.

"In this issue of JTCVS Techniques, Mazine and El-Hamamsy15 present an excellent and comprehensive review. The highlights include a detailed description of their own modified technique: full root replacement with extra-aortic annuloplasty and interposition graft, plus technical refinements such as autologous inclusion technique and Dacron inclusion technique, which minimize late AR and annular dilatation in younger patients with AR."


 

sarashreen

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Joined
May 28, 2015
Messages
34
Location
PA, USA
Cleveland clinic, Baylor, University of Wisconsin Madison, and University of Washington all have dedicated Ross programs. I'm sure there are others as well. May be worth getting another opinion if Mt. Sinai isn't meeting your expectations.

Also, Mt. Sinai is having quite an issue with staffing at the moment, nursing strike. Might have something to do with the communication problems.
You are right. Received below email from Dr Hamamsy’s office staff.

“My apologies, we have been dealing with a nursing strike here at Mount Sinai and I have been involved with that. We will be seeing patients again on Friday, January 20th if you would like to come in then.”

I have scheduled appointment on 1/20 for follow-up questions
 
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