Ross
Well-known member
Sorry but havinig lived through a rupture, I'm very uneasy where your at at the moment. I can't help but to keep prodding.
Surgery Consult Done, Doc says he does 10 a year
- Thread starter harleygirl528
- Start date
Help Support Valve Replacement Forums:
Lorie, I am glad things are looking better for you.
Don't worry about the 25mg of Metoprolol you are taking, that is a really, really low dose.
Don't worry about the 25mg of Metoprolol you are taking, that is a really, really low dose.
Adrienne
Well-known member
I agree about the 25 mg of Metoprolol. At one point before surgery when I had A-Fib I was on 100 mg a day (50 mg twice a day) and I had terrible side effects. Now I am on 25 mg (12½ twice a day) and I have none (other than vivid dreams).
harleygirl528
Well-known member
I have good news (ah, it's so nice to say good news for once)! I went up to the Navy Hospital to the Tricare service center...I figured if I was face to face with them I might get some better answers. anyway, I was actually able to switch my coverage to Tricare Standards effective today which allows me to go to any doctor I want...my maximum liability for a fiscal year is only $1000! I am so relieved...It does mean I need to find a new primary care doctor, cardiologist, orthopedic but that is fine by me. Going to the Navy Hospital has been substandard in some ways...I never seem to be able to get an appt with the same doctor (no continuity of care) and the only cardiologist they have up there signed off on the Echo done in April and didn't bother to make sure I was informed of an aneurysm that showed up on the report. I think it will be a better situation all the way around.
Still waiting to hear back from Univ of Wash for consult.
Ross: I totally understand your concern and I am doing all I can to get in soon...I just don't feel comfortable going with the first doctor I talk to. My goal is to have this thing operated on as soon as possible. I appreciate your ongoing concern...keep prodding me....it keeps me cognizant of the importance of timing in these matters!
Still waiting to hear back from Univ of Wash for consult.
Ross: I totally understand your concern and I am doing all I can to get in soon...I just don't feel comfortable going with the first doctor I talk to. My goal is to have this thing operated on as soon as possible. I appreciate your ongoing concern...keep prodding me....it keeps me cognizant of the importance of timing in these matters!
WayneGM
Well-known member
That is good news!!! It sounds like you'll be much better off. A $1,000 is worth it for better healthcare.
K
Karlynn
Good news Lorie! Sounds like you're on your way!
Marguerite53
Premium Level User
Just wanted to chime in and say that everything I've read on this thread sounded like you are heading in the right direction. A little luck along the way is a great thing, so I'm glad that you are finding better support from your insurance now.
This is daunting for all of us. Our heads have all gone through the emotional distruaght, mental exhaustion, dizzying information. Please remember that keeping yourself as normal as possible (the Halloween part...wonderful moments for you) is so important. Take time to stop and breathe.....exhale....nice and slow.....oxygenate your body properly. Stay on an even keel. Don't do ANY heavy lifting, or pulling or pushing, and don't do anything that might boost your blood pressure significantly. These are all things which will help you through the experience, too. Calm. Stillness.
Keep us posted on your future consults. I'm not sure you have the right guy yet. Glad you are continuing to interview.
Take care.
Wishing you well.
Marguerite
This is daunting for all of us. Our heads have all gone through the emotional distruaght, mental exhaustion, dizzying information. Please remember that keeping yourself as normal as possible (the Halloween part...wonderful moments for you) is so important. Take time to stop and breathe.....exhale....nice and slow.....oxygenate your body properly. Stay on an even keel. Don't do ANY heavy lifting, or pulling or pushing, and don't do anything that might boost your blood pressure significantly. These are all things which will help you through the experience, too. Calm. Stillness.
Keep us posted on your future consults. I'm not sure you have the right guy yet. Glad you are continuing to interview.
Take care.
Wishing you well.
Marguerite
Jim P
Well-known member
Lorie,
My wife and I have used TRICARE Standard for many, many years. Nothing could be easier than going to ANY doc you want to -- pay the deductible and have an annual ceiling on expenses. The TRICARE office tried to talk us into switching to PRIME, but we refused.
As for my OHS earlier this year, it was a breeze with TRICARE. The surgeon's office contacted TRICARE and made all payment arrangements directly. Of the total cost of everything charged by the hospital and numerous doctors (close to $200,000), we paid $3,000. Of course, when you reach the ceiling, everything is free for the remainder of the year -- including medications and any tests or doctor visits.
In my opinion, TRICARE is the absolute best benefit the government offers to compensate me for 26 years of military service.
My wife and I have used TRICARE Standard for many, many years. Nothing could be easier than going to ANY doc you want to -- pay the deductible and have an annual ceiling on expenses. The TRICARE office tried to talk us into switching to PRIME, but we refused.
As for my OHS earlier this year, it was a breeze with TRICARE. The surgeon's office contacted TRICARE and made all payment arrangements directly. Of the total cost of everything charged by the hospital and numerous doctors (close to $200,000), we paid $3,000. Of course, when you reach the ceiling, everything is free for the remainder of the year -- including medications and any tests or doctor visits.
In my opinion, TRICARE is the absolute best benefit the government offers to compensate me for 26 years of military service.
Ross
Well-known member
Just so you know some psycho little man in Ohio cares. 
harleygirl528
Well-known member
Thanks for the continued support...you guys are my life line right now...my inspiration and I thank you all so much!
Jim: My husband has been in the Navy for over 24 years and the struggles I have been in with Tricare were extremely upsetting to him. Of course, being active duty and up until now having a relatively healthy family, we really didn't have any complaints....other than never being able to see the same doctor at the Navy hospital. I am thrilled to discover the option of Tricare Standard....I am just perplexed as to why they didn't suggest it 2 weeks ago when the whole dialogue started...maybe they are trained to steer you toward the tricare Prime option to control costs.
At any rate, I now have an appointment with Dr. Verrier at Univ of Wash (a couple people on this site highly recommend him). I will be seeing him next Thurs, Nov 8. I also have a consult with a local cardiologist to establish myself and have follow up care (as I understand it your surgeon only sees you like one time following surgery..follow up primarily done by cardiologist). In addition, I have selected a new family practice doctor who is right down the street from me....finally some continuity of care!
I am still holding the ace in my hand...the option of going to Cleveland Clinic...I should hear back from them soon. They received my information on Monday.
I am going to take a few days off from all of this hopefully, and just relax with my family. It has seriously felt like a full time job here lately. I did see my pain management guy today...teaches biofeedback, relaxation, etc. and he said that I was doing great and that by taking control of the situation and dealing with it head on is absolutely the best approach and actually reduces stress...rather than just feeling like a victim...so I can honestly say I am much better today than I was two weeks ago...I have accepted that i have to have this surgery and now I just need to find the right doctor and get it behind me.....climb the mountain and get on the other side as you all say!
Jim: My husband has been in the Navy for over 24 years and the struggles I have been in with Tricare were extremely upsetting to him. Of course, being active duty and up until now having a relatively healthy family, we really didn't have any complaints....other than never being able to see the same doctor at the Navy hospital. I am thrilled to discover the option of Tricare Standard....I am just perplexed as to why they didn't suggest it 2 weeks ago when the whole dialogue started...maybe they are trained to steer you toward the tricare Prime option to control costs.
At any rate, I now have an appointment with Dr. Verrier at Univ of Wash (a couple people on this site highly recommend him). I will be seeing him next Thurs, Nov 8. I also have a consult with a local cardiologist to establish myself and have follow up care (as I understand it your surgeon only sees you like one time following surgery..follow up primarily done by cardiologist). In addition, I have selected a new family practice doctor who is right down the street from me....finally some continuity of care!
I am still holding the ace in my hand...the option of going to Cleveland Clinic...I should hear back from them soon. They received my information on Monday.
I am going to take a few days off from all of this hopefully, and just relax with my family. It has seriously felt like a full time job here lately. I did see my pain management guy today...teaches biofeedback, relaxation, etc. and he said that I was doing great and that by taking control of the situation and dealing with it head on is absolutely the best approach and actually reduces stress...rather than just feeling like a victim...so I can honestly say I am much better today than I was two weeks ago...I have accepted that i have to have this surgery and now I just need to find the right doctor and get it behind me.....climb the mountain and get on the other side as you all say!
ALCapshaw2
Well-known member
Lorie -
I'm glad to see everything is coming into focus and the obstacles are falling to the side. Your situation and how you are dealing with it should be an inspiration to others in how to 'take charge' of your own destiny.
CONGRATULATIONS on your Good Work !
'AL Capshaw'
I'm glad to see everything is coming into focus and the obstacles are falling to the side. Your situation and how you are dealing with it should be an inspiration to others in how to 'take charge' of your own destiny.
CONGRATULATIONS on your Good Work !
'AL Capshaw'
swim mom
Well-known member
Try to get a Health Benefits Advisor (HBA) on your side at your local Tricare office. I know that is frequently easier said than done and it frequently takes more patience than I have. I have found the hard way they can make every step a pain or they can make the path much smoother! My daughter was at Childrens Hospital in Seattle when we lived in Everett and the first HBA made every step an issue. When I found a sympathetic person I got a lot further in dealing with doctors, bills and everything. It can be hard to be nice to someone you might want to strangle but sometimes it helps! Good Luck!
. I have found the hard way they can make every step a pain or they can make the path much smoother! My daughter was at Childrens Hospital in Seattle when we lived in Everett and the first HBA made every step an issue. When I found a sympathetic person I got a lot further in dealing with doctors, bills and everything. It can be hard to be nice to someone you might want to strangle but sometimes it helps! Good Luck!Arlyss
Well-known member
From what Lorie is describing from her consult, this is a complex aneurysm situation and there are also some abnormalities of the coronary arteries.
The heart is enlarged - there needs to be more explanation about where and why. Which chambers? What caused it - is it expected to stabilize or return to normal size? Why or why not?
Dealing with the root, the entire ascending aorta, and in this case, at least part of the arch also, requires specialized expertise. The arch has 3 arteries that branch from it (the arch is the curve of the "candy cane" shaped aorta) - and these arteries feed blood to the brain and upper body. So, when it was mentioned that not all 3 arteries are involved, it is describing the arch. The coronary arteries (there are two of them) feed the heart, and branch off the root of the aorta, just above the valve.
If this were myself or my husband, I would seek out the most expert skill possible, no matter how far we had to travel to find them - the root, the ascending aorta, and the arch all require it. With circulatory arrest, my brain would be protected, but it will take expertise to do that.
There are some centers that specialize in this complex aortic surgery, and that is where I would go. My husband's aneurysm surgery also involved remodeling his aortic root and replacing a part of the underside of his arch. It was a complex surgery, but he did extremely well - he was discharged on the 3rd morning after surgery and there were no complications. It is very possible to have an ideal surgery, if the right help is found.
Lorie, this is a very difficult experience - it is shocking to find out something like this - including that it was reported in an echo but you were not told. This happens too often and is why reports of tests should always be requested and read.
I wish you all the best as you move forward and make decisions.
Arlyss
The heart is enlarged - there needs to be more explanation about where and why. Which chambers? What caused it - is it expected to stabilize or return to normal size? Why or why not?
Dealing with the root, the entire ascending aorta, and in this case, at least part of the arch also, requires specialized expertise. The arch has 3 arteries that branch from it (the arch is the curve of the "candy cane" shaped aorta) - and these arteries feed blood to the brain and upper body. So, when it was mentioned that not all 3 arteries are involved, it is describing the arch. The coronary arteries (there are two of them) feed the heart, and branch off the root of the aorta, just above the valve.
If this were myself or my husband, I would seek out the most expert skill possible, no matter how far we had to travel to find them - the root, the ascending aorta, and the arch all require it. With circulatory arrest, my brain would be protected, but it will take expertise to do that.
There are some centers that specialize in this complex aortic surgery, and that is where I would go. My husband's aneurysm surgery also involved remodeling his aortic root and replacing a part of the underside of his arch. It was a complex surgery, but he did extremely well - he was discharged on the 3rd morning after surgery and there were no complications. It is very possible to have an ideal surgery, if the right help is found.
Lorie, this is a very difficult experience - it is shocking to find out something like this - including that it was reported in an echo but you were not told. This happens too often and is why reports of tests should always be requested and read.
I wish you all the best as you move forward and make decisions.
Arlyss
harleygirl528
Well-known member
Thanks again for all the responses. I do understand the complexity of the surgery I am facing, due to the involvement of the arch and the importance of maintaining blood supply to the brain, etc. That is why I was so frustrated with my insurance company and their unwillingness to send me to "the best." I will consult with Dr. Verrier, who everyone says so much about...but honestly I am still leaning toward cleveland Clinic. If I just have the BAV and needed it repaired or replaced, then perhaps I wouldn't be so concerned but the first cardiothoracic surgeon I saw, who happens to be the chief of surgery at Madigan Army Hospital, said that he couldn't do it.
It will be interesting to see what Dr. Verrier at the Univ of Wash has to say next week....honestly it would be great to feel confident enough in his abilities to have it done here locally...but I won't hesitate for a second to go to Cleveland if that is what I feel I should do....you only have this one life....and any inconvenience myself of my family has to go through will be well worth it!
Thanks again, everyone....I can't express enough how much this site has come to mean to me....my poor husband feels a little left out...I spend an inordinate amount of time these days on this site researching, reading other's posts, learning...
By the way, as anyone else out here had the aneurysm that involved the arch....I am concerned about the possibility of being put into hypothermia and long term affects on brain functioning, memory, etc.
It will be interesting to see what Dr. Verrier at the Univ of Wash has to say next week....honestly it would be great to feel confident enough in his abilities to have it done here locally...but I won't hesitate for a second to go to Cleveland if that is what I feel I should do....you only have this one life....and any inconvenience myself of my family has to go through will be well worth it!
Thanks again, everyone....I can't express enough how much this site has come to mean to me....my poor husband feels a little left out...I spend an inordinate amount of time these days on this site researching, reading other's posts, learning...
By the way, as anyone else out here had the aneurysm that involved the arch....I am concerned about the possibility of being put into hypothermia and long term affects on brain functioning, memory, etc.
Tom F.
Well-known member
L - my surgery involved the arch as well. Complex, yes, but the skilled surgeons know how to deal with it.
Ross
Well-known member
Hon like I said, it's just like suspended animation. You may be foggy for a few days after, but it'll mostly be from anesthesia and not from the pump or freezing. It takes like 3 hours to cool your body, 1 to 2 hours to do the surgery and another 3 to 4 hours to slowly warm you again.harleygirl528 said:
harleygirl528
Well-known member
Ross: Thanks for your continued reassurance...I am just so scared about that particular aspect of the procedure..I don't know why....I know that I will be totally unaware and it really won't feel any different to me than if I hadn't been in hypothermia....I guess I have heard the horror stories of brain damage, memory loss, problems regulating your body temperature post-op, etc. Is it always necessary to use this technique when reparing the aortic arch? Why is this?
Ross
Well-known member
I don't think it's the only way, but the safest way. I had no troubles with it. My troubles came as a result of the ruptured aneurysm. I would imagine anyone who is dead and brought back is going to have some issues.
Arlyss
Well-known member
Hypothermia is used for open heart surgery generally. However, especially deep hypothermia while the circulation is stopped may be involved with aortic surgery. When the entire ascending aorta is removed, it requires this, called deep hypothermic circulatory arrest - sometimes also called total circulatory arrest. When the arch requires surgery, it is a must.
Surgery on the aortic arch was one of the last aortic challenges to be addressed - the problem has to do with how to protect the brain while working on the source of its blood supply. In 1975, Dr. Randall Griepp published his results for aortic arch surgery in 4 patients - 3 of them lived, and it was the beginning of hope! He and his group in NY have continued to work on and perfect this, and are recognized through out the world for expertise in this area.
This past week there was an aortic disease symposium held at Yale. The meeting was dedicated to the memory of John Ritter. Dr. Griepp gave the special lecture on hypothermia in aortic surgery. Here is a link to the agenda for the meeting. www.promedicacme.com/pdf/acuteAortic.pdf This kind of information may be helpful in searching out expertise.
My husband had 23 minutes of deep hypothermic circulatory arrest. He had absolutely no problems from it - I personally think it is easier on the brain to be colder, but only if it is done properly. There are only a few, assuming that I have a choice, that I would allow to touch my aorta, and particularly the arch.
When I understood that my husband had had deep hypothermia and circulatory arrest, at first it sounded terrible to me. Now I realize that it was the very best thing for him, because he was very fortunate to have it done by someone expert in it.
Best wishes,
Arlyss
Surgery on the aortic arch was one of the last aortic challenges to be addressed - the problem has to do with how to protect the brain while working on the source of its blood supply. In 1975, Dr. Randall Griepp published his results for aortic arch surgery in 4 patients - 3 of them lived, and it was the beginning of hope! He and his group in NY have continued to work on and perfect this, and are recognized through out the world for expertise in this area.
This past week there was an aortic disease symposium held at Yale. The meeting was dedicated to the memory of John Ritter. Dr. Griepp gave the special lecture on hypothermia in aortic surgery. Here is a link to the agenda for the meeting. www.promedicacme.com/pdf/acuteAortic.pdf This kind of information may be helpful in searching out expertise.
My husband had 23 minutes of deep hypothermic circulatory arrest. He had absolutely no problems from it - I personally think it is easier on the brain to be colder, but only if it is done properly. There are only a few, assuming that I have a choice, that I would allow to touch my aorta, and particularly the arch.
When I understood that my husband had had deep hypothermia and circulatory arrest, at first it sounded terrible to me. Now I realize that it was the very best thing for him, because he was very fortunate to have it done by someone expert in it.
Best wishes,
Arlyss
Arlyss, Does the BAVD site have a list of the leading Aortic specialists?
Harleygirl, I'm not sure if you got the link to the site Arlyss is a part of , but it has alot of really great info http://bicuspidfoundation.com/Index.html
Have you considerred getting an opinon from Cedars? I don't know of they are on your insurance, but I think they are closer than Cleveland, When Justin had a few of his surgeries, (he also has a complex heart) I got opinions from quite a few of the leading surgeons that specalize in hearts like his. When I spoke to the surgeons that we decided to let to his surgeries, I just knew they were right choice and felt "peace" if that makes sense.It's funny, when Justin had his 4th OHS surgery when he was 17, he needed a new surgeon, and i was leaning toward one and he really felt best about a different surgeon/center, since he ultimately had to be the one that had to believe and fight, I agreed. Well his surgery was postponed 3 times,so we decided maybe he should let the other surgeon be the one and I knew he would do well. and he did amazing. So I really believe what ever you decide and fell most at peace with, you will know it is the "right" choice. Thank God we live in a time, when there are so many really great surgeons that specialize in specific heart issues and we have good choices.Lyn
Harleygirl, I'm not sure if you got the link to the site Arlyss is a part of , but it has alot of really great info http://bicuspidfoundation.com/Index.html
Have you considerred getting an opinon from Cedars? I don't know of they are on your insurance, but I think they are closer than Cleveland, When Justin had a few of his surgeries, (he also has a complex heart) I got opinions from quite a few of the leading surgeons that specalize in hearts like his. When I spoke to the surgeons that we decided to let to his surgeries, I just knew they were right choice and felt "peace" if that makes sense.It's funny, when Justin had his 4th OHS surgery when he was 17, he needed a new surgeon, and i was leaning toward one and he really felt best about a different surgeon/center, since he ultimately had to be the one that had to believe and fight, I agreed. Well his surgery was postponed 3 times,so we decided maybe he should let the other surgeon be the one and I knew he would do well. and he did amazing. So I really believe what ever you decide and fell most at peace with, you will know it is the "right" choice. Thank God we live in a time, when there are so many really great surgeons that specialize in specific heart issues and we have good choices.Lyn
