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M
Mary
James,
I've looked back at your old posts trying to find out why the Ross procedure wasn't a go for you. When I was first diagnosed, I thought that I would go with the Ross.
I've backed off a little just because I hate to have to go to a different hospital than the one where my husband works. He's been here for 25 years in critical care, and I wouldn't have to worry about postop recovery. However, the more I read the threads, the more I wonder if I shouldn't at least revisit the consideration of having the Ross Procedure.
I read your link to your doctor, and he appears to be among the very best.
I have nothing wrong with my heart other than the bicuspid aortic valve, and having been very active throughout my adult life, I have no coronary disease that would preclude the Ross.
Do you mind explaining more about your surgery?
Thanks,
Mary
I've looked back at your old posts trying to find out why the Ross procedure wasn't a go for you. When I was first diagnosed, I thought that I would go with the Ross.
I've backed off a little just because I hate to have to go to a different hospital than the one where my husband works. He's been here for 25 years in critical care, and I wouldn't have to worry about postop recovery. However, the more I read the threads, the more I wonder if I shouldn't at least revisit the consideration of having the Ross Procedure.
I read your link to your doctor, and he appears to be among the very best.
I have nothing wrong with my heart other than the bicuspid aortic valve, and having been very active throughout my adult life, I have no coronary disease that would preclude the Ross.
Do you mind explaining more about your surgery?
Thanks,
Mary
hi james/syd!
thanks for that article. great guy and doc, isn't he? joey is his #304 ross.
we can't say enough about him.
we know a cardio/surgeon who had worked with him in the past and when joey was trying to decide on a surgeon, he told us that dr. stelzer is in his prime right now. doing the best work he's ever done.
nice to hear that from another doc, no?
i'll email that article to joey. thanks again,
be well, sylvia
thanks for that article. great guy and doc, isn't he? joey is his #304 ross.
we can't say enough about him.
we know a cardio/surgeon who had worked with him in the past and when joey was trying to decide on a surgeon, he told us that dr. stelzer is in his prime right now. doing the best work he's ever done.
nice to hear that from another doc, no?
i'll email that article to joey. thanks again,
be well, sylvia
S
Shine_on_Syd
Sylvia/Joey.
Yes Dr. Stelzer is one if the most fantastic people I have never met. He is so down to earth you would never believe he is a renowned heart surgeon. He is very skilled and has the utmost repsect from Dr. Ross. He did a great job on me and took such a close personal interest in me I felt like I was his only patient. I visited him last October just to say hi. I told him that he had spoiled me, I have gone through 5 doctors back here in New England since my surgery because none of them can live up to his standards.
His is just a great guy. His patients and his staff all seem to love him. In fact, the exact day one year following my surgery he called me on my cell phone to wish me well.
Yes Dr. Stelzer is one if the most fantastic people I have never met. He is so down to earth you would never believe he is a renowned heart surgeon. He is very skilled and has the utmost repsect from Dr. Ross. He did a great job on me and took such a close personal interest in me I felt like I was his only patient. I visited him last October just to say hi. I told him that he had spoiled me, I have gone through 5 doctors back here in New England since my surgery because none of them can live up to his standards.
His is just a great guy. His patients and his staff all seem to love him. In fact, the exact day one year following my surgery he called me on my cell phone to wish me well.
S
Shine_on_Syd
reply to Mary (Ross Porcedure)
reply to Mary (Ross Porcedure)
Mary,
At the risk of Ross commenting that this is a long winded reply, I can't respond to your question in a few sound bytes The condition of my valves is a bit of an enigma and have stumped all the cardiologists. So here it goes. Looking at your profile, we have bird watching and teaching in common - did you see the Accidental Tourist and the ending about Paris?
I never had a heart murmur or heart problem in my life, I took flight physicals in the Air Force they checked me thoroughly. I am very physically active cardiovascularly, have always run, done century bike rides, 26 mile in-line skate races, triathlons, played ice hockey past age 50 and anything to push my cardio vascular fitness.
At age 52 during a routine physical my primary doctor said I have a pretty significant murmur. I was at a loss as I know they don't pop up like that. He sent me for an echo and called me without saying anything and asked me to come to his office. That was a long scary ride. He said that I had rather severe aortic regurgitation and not have a bicuspid aortic valve. I said how could this happen all of a sudden? They had no idea nor any answer. I had a consult with Boston cardio who said they would watch it via a TEE every 6 mos and be on the look out for shortness of breath, enema, etc. He said I would need a new valve probably before 60 and a mechanical should last for life.
Two years later my echo revealed that my LV had enlarged to an alarming point and the LV walls began to thickened. I still had a good EF, over 50. I have nothing against coumadin and happy to see Tom can run a marathon on coumadin, but I didn't feel it was right for me. I opted for re-surgery down the road. Plus I spend days in the Maine wilderness without cell towers and can't get help in an emergency. I found an article about Jesse Sapolu a pro bowler offensive lineman who played for the SF 49s and had a Ross Procedure in April and was back in the NFL in August and I said that's for me. I am almost his size and very physically active,
My mind became a sponge for the Ross Procedure, I learned all I could and I became very versed in it. I told my main cardio I wanted a RP and he said "we don't do RPs in Boston" I then had two more consults in the Boston area and they tried to convince me that the Ross was a "bad thing". I am now very cynical about cardiologists andmost surgeons. What I came to find out is that there are very few surgeons skilled enough to do an RP and those who can't will tell you it is a very bad idea.
So I said "screw Boston" took the train to NY and spent parts of 2 days talking to Dr. Stelzer. He has a picture in his office of a Ross patient crossing the finish line of the Boston marathon. He said I was a RP candidate and just needed a cath. He spend over an hour reviewing my echo tape pointing out details. The big mystery was that I had a tear in the leaflet of my aortic valve. That was very odd as I looked like it came from trauma and that is VERY rare. While I had not been in a car accident I took a bad blow to the sternum playing hockey.
I insisted on the Ross and Stelzer has done as many as any practicing surgeon. Only Ross and Elkins have done more and they are retired.
Before the surgery we discussed the possibility that I may have a bicuspid pulmonary valve which means they can't do a Ross. This happens on occasion- they cannot detect a bicuspid pulmonic valve in an echo or cath, it's too small. In that case I agreed to a porcine as a back up.
Day of surgery came and when I woke up Dr. Stelzer said we had to give you a porcine and could not use the pulmonic valve as it had a myxomatous (floppy/ soft) texture and would not be suitable as a replacement for an aortic valve. He felt that perhaps I have a congenital issue or I had an infection that caused the softness. He said that my aortic valve was also myxomatous . He further went on to say that Schwarzenegger had the same thing as me and they went ahead with his Ross. But Arnold's Ross failed and he had to be re-operated on a few days later with a porcine aortic valve. Stelzer told me that he had spoken both to the surgeon who did that original surgery and the one who did the porcine operation. So luckily I gained from Arnold's misfortune and Stelzer's connections.
In the end as much as I wanted a Ross, my pulmonic valve was unsuitable. But Dr. Stelzer did a great job of fitting and sewing my Freestyle I am in better condition that before my operation.
I think the Ross is ingenious idea. But it is not for all. If you are considering it you must find a skilled and experienced Ross surgeon.
BTW, I go by the screen name of Syd as when I was in the OR I asked if they had any CD's by my favorite group "Pink Floyd" Sure enough they did and the last song I remember was "See Emily Play', a song by Syd Barret before he left the group as he went mad. Shine on You Crazy Diamond is a Pink Floyd tribute to Syd. I owe my successful surgery in part to hearing Syd play as I went under.
Regards,
James
reply to Mary (Ross Porcedure)
Mary,
At the risk of Ross commenting that this is a long winded reply, I can't respond to your question in a few sound bytes The condition of my valves is a bit of an enigma and have stumped all the cardiologists. So here it goes. Looking at your profile, we have bird watching and teaching in common - did you see the Accidental Tourist and the ending about Paris?
I never had a heart murmur or heart problem in my life, I took flight physicals in the Air Force they checked me thoroughly. I am very physically active cardiovascularly, have always run, done century bike rides, 26 mile in-line skate races, triathlons, played ice hockey past age 50 and anything to push my cardio vascular fitness.
At age 52 during a routine physical my primary doctor said I have a pretty significant murmur. I was at a loss as I know they don't pop up like that. He sent me for an echo and called me without saying anything and asked me to come to his office. That was a long scary ride. He said that I had rather severe aortic regurgitation and not have a bicuspid aortic valve. I said how could this happen all of a sudden? They had no idea nor any answer. I had a consult with Boston cardio who said they would watch it via a TEE every 6 mos and be on the look out for shortness of breath, enema, etc. He said I would need a new valve probably before 60 and a mechanical should last for life.
Two years later my echo revealed that my LV had enlarged to an alarming point and the LV walls began to thickened. I still had a good EF, over 50. I have nothing against coumadin and happy to see Tom can run a marathon on coumadin, but I didn't feel it was right for me. I opted for re-surgery down the road. Plus I spend days in the Maine wilderness without cell towers and can't get help in an emergency. I found an article about Jesse Sapolu a pro bowler offensive lineman who played for the SF 49s and had a Ross Procedure in April and was back in the NFL in August and I said that's for me. I am almost his size and very physically active,
My mind became a sponge for the Ross Procedure, I learned all I could and I became very versed in it. I told my main cardio I wanted a RP and he said "we don't do RPs in Boston" I then had two more consults in the Boston area and they tried to convince me that the Ross was a "bad thing". I am now very cynical about cardiologists andmost surgeons. What I came to find out is that there are very few surgeons skilled enough to do an RP and those who can't will tell you it is a very bad idea.
So I said "screw Boston" took the train to NY and spent parts of 2 days talking to Dr. Stelzer. He has a picture in his office of a Ross patient crossing the finish line of the Boston marathon. He said I was a RP candidate and just needed a cath. He spend over an hour reviewing my echo tape pointing out details. The big mystery was that I had a tear in the leaflet of my aortic valve. That was very odd as I looked like it came from trauma and that is VERY rare. While I had not been in a car accident I took a bad blow to the sternum playing hockey.
I insisted on the Ross and Stelzer has done as many as any practicing surgeon. Only Ross and Elkins have done more and they are retired.
Before the surgery we discussed the possibility that I may have a bicuspid pulmonary valve which means they can't do a Ross. This happens on occasion- they cannot detect a bicuspid pulmonic valve in an echo or cath, it's too small. In that case I agreed to a porcine as a back up.
Day of surgery came and when I woke up Dr. Stelzer said we had to give you a porcine and could not use the pulmonic valve as it had a myxomatous (floppy/ soft) texture and would not be suitable as a replacement for an aortic valve. He felt that perhaps I have a congenital issue or I had an infection that caused the softness. He said that my aortic valve was also myxomatous . He further went on to say that Schwarzenegger had the same thing as me and they went ahead with his Ross. But Arnold's Ross failed and he had to be re-operated on a few days later with a porcine aortic valve. Stelzer told me that he had spoken both to the surgeon who did that original surgery and the one who did the porcine operation. So luckily I gained from Arnold's misfortune and Stelzer's connections.
In the end as much as I wanted a Ross, my pulmonic valve was unsuitable. But Dr. Stelzer did a great job of fitting and sewing my Freestyle I am in better condition that before my operation.
I think the Ross is ingenious idea. But it is not for all. If you are considering it you must find a skilled and experienced Ross surgeon.
BTW, I go by the screen name of Syd as when I was in the OR I asked if they had any CD's by my favorite group "Pink Floyd" Sure enough they did and the last song I remember was "See Emily Play', a song by Syd Barret before he left the group as he went mad. Shine on You Crazy Diamond is a Pink Floyd tribute to Syd. I owe my successful surgery in part to hearing Syd play as I went under.
Regards,
James
M
Mary
Thanks James for the reply.
It gives me more to mull over as I wait my turn. I believe that if I don't opt for surgery in my hometown, then I would be willing to go anywhere in the U.S. for the replacement. Both of the cardiologists I have seen are fine with whatever I chose; they just warn that the surgery would need to be performed by a very skilled surgeon with many procedures behind him.
Yes, much like you and many others, I was stunned when a murmur was first heard in 2001. In a somewhat smug fashion, I believed that my heart would be an organ donation at my death, and how lucky some person would be to receive such a magnificent specimen! I can laugh about it now, but I was pretty PO' d for awhile. I did feel like my body had betrayed me.
Yes, I saw Accidental Tourist, but I'm fuzzy on the ending. "My Paris" in my signature line and avatar refers to the line from Casablanca. It serves as a reminder that I have been lucky enough to experience my own version of " . . . we'll always have Paris." Maybe that's what happened to my heart!
I've been a member of the Audubon Society for 15 years. We go to Wisconsin in the summer to vacation. Trying to locate warblers in those tall pines really does a number on my neck. Do you have the same difficulty when you visit Maine? Speaking of Maine, have you ever been to Booth Bay? A museum there is in a house that my great, great grandfather built.
Thanks again. I'll keep all you've said in mind. I 've had doctors from around the country contact me about the Ross. Until I found VR, it never dawned on me that it might be a no go in some instances.
Ok, I'm getting the Pink Floyd out to listen to.
Mary
It gives me more to mull over as I wait my turn. I believe that if I don't opt for surgery in my hometown, then I would be willing to go anywhere in the U.S. for the replacement. Both of the cardiologists I have seen are fine with whatever I chose; they just warn that the surgery would need to be performed by a very skilled surgeon with many procedures behind him.
Yes, much like you and many others, I was stunned when a murmur was first heard in 2001. In a somewhat smug fashion, I believed that my heart would be an organ donation at my death, and how lucky some person would be to receive such a magnificent specimen! I can laugh about it now, but I was pretty PO' d for awhile. I did feel like my body had betrayed me.
Yes, I saw Accidental Tourist, but I'm fuzzy on the ending. "My Paris" in my signature line and avatar refers to the line from Casablanca. It serves as a reminder that I have been lucky enough to experience my own version of " . . . we'll always have Paris." Maybe that's what happened to my heart!
I've been a member of the Audubon Society for 15 years. We go to Wisconsin in the summer to vacation. Trying to locate warblers in those tall pines really does a number on my neck. Do you have the same difficulty when you visit Maine? Speaking of Maine, have you ever been to Booth Bay? A museum there is in a house that my great, great grandfather built.
Thanks again. I'll keep all you've said in mind. I 've had doctors from around the country contact me about the Ross. Until I found VR, it never dawned on me that it might be a no go in some instances.
Ok, I'm getting the Pink Floyd out to listen to.
Mary
S
Shine_on_Syd
Mary,
Happy to hear you are a fellow bird watcher. We used to live in Wisconsin and went to the Horicon Marsh for the amazing Canadian Goose migration. I had a great visit once to the British Trust for Ornithology in England. I happened to love both cats and birds ad have worked with one of the top BTO researchers on ways to try to keep cats from the wanton killing of birds. They do it for the hunt and not for food. We are fortunate in Maine with a Loon family on our lake.
The Accidental Tourist ends with a romantic rendezvous in Paris.
My sis just got back from Paris and said there are thousands of roller bladers. Since I am an avid in-line skater I would like to participate in that.
I studied the Ross Procedure in great detail and think Dr. Stelzer is probably one of the top Ross surgeons there is. He has actually improved upon the original procedure. One of the ICU nurses told me that Dr. Ross said that the procedure should be re-named the Ross- Stelzer Procedure. But Dr. Stelzer declined saying it was Dr. Ross' honor, that is the type of person he is - as genuine as they come.
I was in the hospital for 4 days, but Beth Israel arranged a free apartment for me and my wife for a week. It was right next to the hospital. It worked out well.
If you consider the Ross I recommend you put Dr. Stelzer on your short list.
(Glad I didn't get busted by Ross for that long post )
James,
Happy to hear you are a fellow bird watcher. We used to live in Wisconsin and went to the Horicon Marsh for the amazing Canadian Goose migration. I had a great visit once to the British Trust for Ornithology in England. I happened to love both cats and birds ad have worked with one of the top BTO researchers on ways to try to keep cats from the wanton killing of birds. They do it for the hunt and not for food. We are fortunate in Maine with a Loon family on our lake.
The Accidental Tourist ends with a romantic rendezvous in Paris.
My sis just got back from Paris and said there are thousands of roller bladers. Since I am an avid in-line skater I would like to participate in that.
I studied the Ross Procedure in great detail and think Dr. Stelzer is probably one of the top Ross surgeons there is. He has actually improved upon the original procedure. One of the ICU nurses told me that Dr. Ross said that the procedure should be re-named the Ross- Stelzer Procedure. But Dr. Stelzer declined saying it was Dr. Ross' honor, that is the type of person he is - as genuine as they come.
I was in the hospital for 4 days, but Beth Israel arranged a free apartment for me and my wife for a week. It was right next to the hospital. It worked out well.
If you consider the Ross I recommend you put Dr. Stelzer on your short list.
(Glad I didn't get busted by Ross for that long post )
James,
M
Mary
James,
Consider it done! Dr.Steltzer is now on my list! I'm going to reopen the discussion of the Ross with my family so we can all brainstorm. Knowing there were accomodations available for your wife is a big plus
Speaking of birds and cats, I read several years ago that an average of 4 million birds were killed by free roaming cats in Wisconsin. Much of it takes place on farms and open areas. It's hard to comprehend those numbers, but as you said, it's instinctive for the cat.
Maybe we should start a new thread in Small Talk for members' hobbies. Or would that be better in Active Lifestyles? Either way, I'd like to discuss more of these areas of interest.
Mary
Consider it done! Dr.Steltzer is now on my list! I'm going to reopen the discussion of the Ross with my family so we can all brainstorm. Knowing there were accomodations available for your wife is a big plus
Speaking of birds and cats, I read several years ago that an average of 4 million birds were killed by free roaming cats in Wisconsin. Much of it takes place on farms and open areas. It's hard to comprehend those numbers, but as you said, it's instinctive for the cat.
Maybe we should start a new thread in Small Talk for members' hobbies. Or would that be better in Active Lifestyles? Either way, I'd like to discuss more of these areas of interest.
Mary
S
Shine_on_Syd
Mary,
Good suggestion, I posted a few articles in Small Talk about birding - your turn.
Jim
Good suggestion, I posted a few articles in Small Talk about birding - your turn.
Jim
