Question? If you were in my shoes where would you go?

[Richard Nelsen]

Hello again, I have a question for you that have already traveled the path.... I ask for your knowlege, experience, tips and your gut feelings.
I am considering having a myectomy done, I'm 53 and have obstuction with a gradiant of over 70 (I'll have better measurments in a week as I'm going to have a new echo, my last was nearly 5 years ago). I have been totaly disabled with HCM since 1997 and of course it isn't getting any better, PANT-PANT... I am to the point that I nearly pass out 5 or 6 times a day but after all this time I have learned where my trouble points are and am able to approch the edge on a regular basis and still get thru the day. But I need to, want to, have to get this fixed! I would have addressed this sooner but as some of you may remember I had a bout with bladder cancer last year. I am over that now and getting ready to make a move on a myectomy, this really hard for me I hate hospitals, doctors, needles...Whaaaa! Like any of you do! Sorry had to get that out..
Anyways I live in Washington State my insurance is self pay with me being retired so I am tring to find out if they will pay for out of state treatment. In a perfect world who would you go to and where? Would it be Cleveland? Do you have phone numbers for them? Would it be the Mayo Clinic? Why would YOU pick one over the other? Are there pitfalls that could be avoided? I have read some personal stories as of late and to tell you the truth some of them kind of scare me . Thank all of you for sharing your personal stories. Richard

[shirleymahoney]

Re: Question? If you were in my shoes where would you go?

Richard

I had a myectomy done 3 weeks ago and am home i'm 46 the doc said i went through this very well, i have COPD also but not real bad, i do feel better though even though my chest is sore, everyone reacts differently to the surgery, if i were you i would call Lisa and talk with her she could help you find the right doc for you, but don't wait if you feel it is time then it probably is, you know your body better than anyone else, but call Lisa, she will help

Shirley

[Richard Nelsen]

Re: Question? If you were in my shoes where would you go?

Richard

I had a myectomy done 3 weeks ago and am home i'm 46 the doc said i went through this very well, i have COPD also but not real bad, i do feel better though even though my chest is sore, everyone reacts differently to the surgery, if i were you i would call Lisa and talk with her she could help you find the right doc for you, but don't wait if you feel it is time then it probably is, you know your body better than anyone else, but call Lisa, she will help

Shirley

Hi Shirley, I'm glad you are feeling better! I do know that it takes a spell to feel better after the surgery(my brother inlaw is recovering from having a hole patched on his heart). He is feeling better but still sore. I just wanted to pool some info on everyones thoughts and feelings after having the surgery.

[Sarah]

Re: Question? If you were in my shoes where would you go?

Dear Richard,

Lisa doesn't like to hand out referrals over the board because matching a person and a doctor for something like this requires a lot of information and a lot of thinking and it isn't just a "hey, go see this guy" kind of thing.

Assuming you are choosing between the cream of the crop (the centers listed on the links page --Cleveland, Mayo, NEMC, etc), then other factors come into play--will insurance pay for one and not the other? (mine will pay for cleveland, for example). Is one close to a relative/friend you could stay with to defray costs? Is one center better at one variety of surgery over another? Do you get along better with that doctor or another? And so on.

I've been to Mayo and they are incredible. I had about as enjoyable experience as you can have in the hospital there. I'm going to Cleveland at the end of the month b/c my HCM has changed and I think they will be a better for my needs right now. However, there is a surgery I plan on having (un-HCM related) next year that I will have done at Mayo.

I hear good things about NEMC but they just haven't been around as long as the others, so they can't give you a pile of statistics like Mayo or Cleveland can (some stats, just not as far back). I mean the HCM clinic itself is new. Some of the doctors have been around for a while, others are younger.

Call the centers, ask about costs and travel, talk to the doctors if you can --see who you like. Talk to Lisa about them too and then make your decision based on what you find out.

Good luck,

Sarah

[Richard Nelsen]

Re: Question? If you were in my shoes where would you go?

Sarah, thanks for your response, I really was not looking for a "referral" first of all. I simply want to learn all I can before I make this decision the same as I would if I were finding a new dentist. I'm just trying to build a pool of some of the most experienced well trained surgeons in these two locations so that I might make a well informed choice somewhere in the near future after I have researched everything that I can about the possible canidates. I by NO MEANS would be one that would simply go for "Hey go see this guy".
With that said I can see that Lisa may not want names thrown around for various reasons but if someone wants to P.M. me with that type of information I'm sure that would not offend anyone? Sarah you did mention that you went to the Mayo was it for a myectomy? If so how are you feeling now? Cleveland or the Mayo would be the closest to me as I mentioned I live in Washington State and we don't have any specialty centers here on the west coast. The University of Washington does-has done some myectomys but that does not make me feel warm and fuzzy(MYECTOMYS ? Yeah I've done a couple of those!).
I am trying to get some information out of my insurance companys as we speak and I am hopeful, my cardioligist has said he would write anything that they need to help with my care. Again Sarah please know that I'm not asking someone to make a desision about my care for me all I was after was knowlege and knowlege is POWER. Thanks Rick

Dear Richard,

Lisa doesn't like to hand out referrals over the board because matching a person and a doctor for something like this requires a lot of information and a lot of thinking and it isn't just a "hey, go see this guy" kind of thing.

Assuming you are choosing between the cream of the crop (the centers listed on the links page --Cleveland, Mayo, NEMC, etc), then other factors come into play--will insurance pay for one and not the other? (mine will pay for cleveland, for example). Is one close to a relative/friend you could stay with to defray costs? Is one center better at one variety of surgery over another? Do you get along better with that doctor or another? And so on.

I've been to Mayo and they are incredible. I had about as enjoyable experience as you can have in the hospital there. I'm going to Cleveland at the end of the month b/c my HCM has changed and I think they will be a better for my needs right now. However, there is a surgery I plan on having (un-HCM related) next year that I will have done at Mayo.

I hear good things about NEMC but they just haven't been around as long as the others, so they can't give you a pile of statistics like Mayo or Cleveland can (some stats, just not as far back). I mean the HCM clinic itself is new. Some of the doctors have been around for a while, others are younger.

Call the centers, ask about costs and travel, talk to the doctors if you can --see who you like. Talk to Lisa about them too and then make your decision based on what you find out.

Good luck,

Sarah

[mtlieb]

Re: Question? If you were in my shoes where would you go?

Oops! Sorry Richard, I misunderstood your post. Forget what I wrote.

[Richard Nelsen]

Re: Question? If you were in my shoes where would you go?

Jim,
I hear you my friend and believe me I have been thinking about this for some time, as I mentioned I have been totally disabled with HCM since 1997 and I'm 53 now. In the New York Heart Class book I would fall into a high #3 or a low #4 and I do see that there are many risks involved. I also have seen that it is not as you say a cure all. I am hopefull however to find some relief as I have noticed an increase of syptoms the past few years.
Am I apprehensive? You bet I am! I also am very tired of being tired, being so very careful everytime I get up so I don't blackout (I'm really good at that now, I just grey out you know get the fuzzy lips and all and still keep concious). Oh the tricks we learn, yes I'm terrified about new symptoms and the risks involved. But I'm terrified of what will be if I don't at this stage. My cardiologist has advised me that when I was ready to let him know (he told me that 4 years ago), I wish there was another route but I have been symptomatic for 30 years and was not diagnosed until 10 years ago and things are just dragging me down. I think its now or never . Rick

Richard,

Please don't make the decision to have a myectomy simply because you think that it may be a cure to all of your problems. At best, a myectomy may relieve some of your symptoms, but it is not a cure, and it may in fact also open up the door to new problems that you may not have even realized.

Regardless of where you decide to have the surgery performed, there are inherent risks. My own doctors have instructed me not to even consider the surgery until every possible drug option has been exhausted, and i believe that this is good advice. In some cases, the risks associated with the surgery itself are even greater than than those imposed by the HCM.

Take good care of yourself, and be sure to weigh all options before jumping into surgery.

Jim

[Burton Borrok]

Re: Question? If you were in my shoes where would you go?

Hi Richard,
I think you may be suffering under a misunderstanding of Lisa’s role. To think of her as a referral service is like saying an encyclopedia will tell you a lot about milkshakes. Does she help you with referrals? Sure, if that’s what you are looking for, just like an encyclopedia will tell you about milkshakes, if that’s all you want to use it for.

I hear you asking for anecdotal advice from people who have had a particular procedure. I’m sure Lisa has information for you about things you have yet to conceive of. She is a great fund of information, just waiting to be tapped. I’m sure she would agree that the decision about which path you take is yours alone – hopefully with input from your family, - but if you want all the information you can gather, I strongly suggest calling her and getting her on your team. She is supposed to be back in the office Monday, March 15th, but I believe she fields most of her calls on Tuesdays. Calling across country may not be so great if you miss your connection, so I would suggest PM’ing her first and setting up a mutually convenient time to talk.

I appreciate both your idea to gather all the information possible before making a decision, and that you want to be the one who makes the final decision. Lisa has a fund of information. Use it. We are each the masters of our own fate. I don’t know if you are into poetry, but you might enjoy this one.
Burt

Invictus
by William Ernest Henley

OUT of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

[felixdacat]

Re: Question? If you were in my shoes where would you go?

on the insurance front:

We have aetna and so far they have had no problems with us going to
NEMC. I dont know who your
insurer is, but they should not have a problem with you going otu of
state. they wont pay for travel related costs though; well aetna told
us that in the precertification if the dr's indicated something to show
that they should pay for travel expenses they would, but that would
be the only way. I was so happy that we only hav ea 300$ deductable
that I did not complain about the 4 Rt airline tickets I had to buy!

here is their poloity for ablations. notice hwo they want a dr who has
done at least 5 of these. they probably feel the same about myectomys,
though I could not find that detailed info.

http://www.aetna.com/cpb/data/CPBA0558.html

Aetna covers percutaneous transluminal septal myocardial ablation (PTSMA) by alcohol-induced septal branch occlusion for hypertrophic obstructive cardiomyopathy (HOCM) in adult patients when ALL of the following criteria are met:

Patient has severe symptoms (e.g., dyspnea, angina pectoris, [pre]syncope, palpitations or heart failure) for at least 6 months despite optimal drug therapy (e.g., beta-blockers, calcium-antagonists), dual chamber pacing (DDD) therapy and/or ineffective previous surgical myotomy/myectomy; AND
Patient is classified as New York Heart Association class III or IV (see below); AND
Patient has a classical, asymmetric subaortic HOCM identified by echocardiography (ECHO), and not a mid-ventricular, a concealed membranous subaortic stenosis, nor supravalvular form; AND
ECHO shows left ventricular wall thickness of > 13 mm in adults in the absence of another cause for left ventricular hypertrophy (LVH); 15 mm in an athlete; AND
Patient has systolic anterior motion of the mitral valve on ECHO; AND
Patient has a resting left ventricular outflow tract (LVOT) gradient of > 30 mmHg or a stressed gradient of > 60 mmHg, or patient has less severe symptoms and LVOT of > 50 mmHg at rest or > 100 mmHg under stress; AND
Patient does not have coronary artery disease (CAD) that would preclude performance of the procedure; AND
The procedure is being performed in a center which has performed at least 5 of these procedures; AND
The patient is enrolled into a registry.


sandy (felix's wife logged in as him right now)

[Sarah]

Re: Question? If you were in my shoes where would you go?

Well, I would suggest using the search function on the board to find all the myectomy posts as there are a ton and many of them talk about where they went --you can search for posts that have cleveland and myectomy in them or mayo and myectomy or myectomy and clinic, etc.

No, thankfully I've not had a myectomy. I don't know where I would go for that. I would talk to Lisa and I would talk to the surgical teams -get their success rates and then go from there. My cardiologist here would refer me to Cleveland and he is the president of the AHA, and that would probably influence me a bit.

good luck,

s

[Richard Nelsen]

Re: Question? If you were in my shoes where would you go?

Sandy, I thank you for your kind reply and I learned a great deal from what you wrote! I know that it may not apply to my insurance but I am learning of what to expect in general. I see that "if" I had your insurance that I would meet their qualifications. I have been staying abreast of felix's procedure and I think that both of you are very strong! You both have been in my thoughts thruout , I am very happy to hear that Felix is feeling better, I will be watching for further updates! Rick

on the insurance front:

We have aetna and so far they have had no problems with us going to
NEMC. I dont know who your
insurer is, but they should not have a problem with you going otu of
state. they wont pay for travel related costs though; well aetna told
us that in the precertification if the dr's indicated something to show
that they should pay for travel expenses they would, but that would
be the only way. I was so happy that we only hav ea 300$ deductable
that I did not complain about the 4 Rt airline tickets I had to buy!

here is their poloity for ablations. notice hwo they want a dr who has
done at least 5 of these. they probably feel the same about myectomys,
though I could not find that detailed info.

http://www.aetna.com/cpb/data/CPBA0558.html

Aetna covers percutaneous transluminal septal myocardial ablation (PTSMA) by alcohol-induced septal branch occlusion for hypertrophic obstructive cardiomyopathy (HOCM) in adult patients when ALL of the following criteria are met:

Patient has severe symptoms (e.g., dyspnea, angina pectoris, [pre]syncope, palpitations or heart failure) for at least 6 months despite optimal drug therapy (e.g., beta-blockers, calcium-antagonists), dual chamber pacing (DDD) therapy and/or ineffective previous surgical myotomy/myectomy; AND
Patient is classified as New York Heart Association class III or IV (see below); AND
Patient has a classical, asymmetric subaortic HOCM identified by echocardiography (ECHO), and not a mid-ventricular, a concealed membranous subaortic stenosis, nor supravalvular form; AND
ECHO shows left ventricular wall thickness of > 13 mm in adults in the absence of another cause for left ventricular hypertrophy (LVH); 15 mm in an athlete; AND
Patient has systolic anterior motion of the mitral valve on ECHO; AND
Patient has a resting left ventricular outflow tract (LVOT) gradient of > 30 mmHg or a stressed gradient of > 60 mmHg, or patient has less severe symptoms and LVOT of > 50 mmHg at rest or > 100 mmHg under stress; AND
Patient does not have coronary artery disease (CAD) that would preclude performance of the procedure; AND
The procedure is being performed in a center which has performed at least 5 of these procedures; AND
The patient is enrolled into a registry.


sandy (felix's wife logged in as him right now)

[Ronnie]

Re: Question? If you were in my shoes where would you go?

My Myectomy was done, this Summer, @ Mayo & I give them a 12+ (on a scale of 1-10). Every single staff member treated me with empathy, caring & with a great degree of knowledge-Ifelt like an individual who mattered (rather than just another Body) I can't say enough Great things about the Facility & Care. My local Cardiologist contacted the Caediologist @ Mayo, who set it all up. You know your Body, better than anyone else, if you feel it's time to entertain thoughts of a Myectomy-it probably is!
I'm very lucky, in that I have Bs/Bc coverage & there were no problems w/payment. My only out of pocket we the TV, Phone & travel expenses.
I've purposely avoided mentioning "names", but would be happy to PM you, if you like
RONNIE

[Richard Nelsen]

Re: Question? If you were in my shoes where would you go?

Hi Ronnie, Thankyou for your kind reply! Thats great and encouraging news about your dealings with the Mayo, I may in the near future PM you if you don't mind? How are you feeling today? I agree about if you think its time it probably is.. I just hope I haven't waited to long. I still am waiting to talk to my ins. company next week after I get updated results from my new echo. Take care, Rick

My Myectomy was done, this Summer, @ Mayo & I give them a 12+ (on a scale of 1-10). Every single staff member treated me with empathy, caring & with a great degree of knowledge-Ifelt like an individual who mattered (rather than just another Body) I can't say enough Great things about the Facility & Care. My local Cardiologist contacted the Caediologist @ Mayo, who set it all up. You know your Body, better than anyone else, if you feel it's time to entertain thoughts of a Myectomy-it probably is!
I'm very lucky, in that I have Bs/Bc coverage & there were no problems w/payment. My only out of pocket we the TV, Phone & travel expenses.
I've purposely avoided mentioning "names", but would be happy to PM you, if you like
RONNIE

[Midge Rollins]

Re: Question? If you were in my shoes where would you go?

Richard, I pm'd you am not sure if it got there if not let me know and I will email. Thanks

[Richard Nelsen]

Re: Question? If you were in my shoes where would you go?

Hi Midge, I have sent you my e-mail address, for some reason I never recieved your PM. Thanks Richard Nelsen

Richard, I pm'd you am not sure if it got there if not let me know and I will email. Thanks