Broke my back and need HELP.....

You are correct that I am a physician- however, there has been a lot of emotion and little in the way of facts being presented here. For example, although there has been a lot of discussion about a spine fracture, needing help for disc replacements or four wheelers, none of this has been indicated. Sometimes, just for the sake of clarity, it takes some pretty plain speaking for someone to understand. The recommendations for surgery need to be based upon objective facts, not unrealistic expecations or unclear understanding.

If someone is being faced with open heart surgery, it seems that this might be a priority over how strong your coffee was in the morning. He is not my patient, but I would be concerned about lack of comprehension (which could also be poor communication from his providers). If a person did not understand the risks of surgery, this alone might be a contraindication, which I suspect has been the case here with some of his back surgeons.

As a surgeon, it is critical to know that the patients have a clear understanding of the risks and benefits of the procedure, yet I get the sense that Tony does not comprehend these risks. This is not personal, but simply an assessment. If so, that alone would make any provider concerned about doing surgery- the results and outcomes would never be good.

Sometimes, no matter how hard we try, or how many ways we try to explain, people don't seem to understand- this is very frustrating as a provider. However, the decision to recommend surgery or not has to be based upon the individual's understanding- unrealistic expectations are never met with good results. This decision cannot be made emotionally, but based upon facts, medical literature, and experience.

You are correct in that I am not Tony's provider, and neither is anyone else on this board. As a provider, when I see his posts it is frustrating to see how little he comprehends his medical conditions. I see this every day with my own patients, who sometimes see themselves as victims and yet are not able to help themselves. They ignore sound advice and choose to make their own priorities.

However, he needs to work this out on his own, and only his physicians can help him. I more than anyone would like to see him as well as all of my own patients do well, but sometimes, as frustrating as it is, we simply cannot help everyone or meet their expectations.
 
But you don't have to insult him at every opportunity.
He made a casual comment about having some morning coffee. I replied to him that coffee may not be the best thing for a weak heart. He replied that he drinks very weak coffee. He didn't go on about coffee. It was idle conversation.

AcroBoy said:
You are correct that I am a physician- however, there has been a lot of emotion and little in the way of facts being presented here. For example, although there has been a lot of discussion about a spine fracture, needing help for disc replacements or four wheelers, none of this has been indicated. Sometimes, just for the sake of clarity, it takes some pretty plain speaking for someone to understand. The recommendations for surgery need to be based upon objective facts, not unrealistic expecations or unclear understanding.

If someone is being faced with open heart surgery, it seems that this might be a priority over how strong your coffee was in the morning. He is not my patient, but I would be concerned about lack of comprehension (which could also be poor communication from his providers). If a person did not understand the risks of surgery, this alone might be a contraindication, which I suspect has been the case here with some of his back surgeons.

As a surgeon, it is critical to know that the patients have a clear understanding of the risks and benefits of the procedure, yet I get the sense that Tony does not comprehend these risks. This is not personal, but simply an assessment. If so, that alone would make any provider concerned about doing surgery- the results and outcomes would never be good.

Sometimes, no matter how hard we try, or how many ways we try to explain, people don't seem to understand- this is very frustrating as a provider. However, the decision to recommend surgery or not has to be based upon the individual's understanding- unrealistic expectations are never met with good results. This decision cannot be made emotionally, but based upon facts, medical literature, and experience.

You are correct in that I am not Tony's provider, and neither is anyone else on this board. As a provider, when I see his posts it is frustrating to see how little he comprehends his medical conditions. I see this every day with my own patients, who sometimes see themselves as victims and yet are not able to help themselves. They ignore sound advice and choose to make their own priorities.

However, he needs to work this out on his own, and only his physicians can help him. I more than anyone would like to see him as well as all of my own patients do well, but sometimes, as frustrating as it is, we simply cannot help everyone or meet their expectations.
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JOhnH said:
But you don't have to insult him at every opportunity.
He made a casual comment about having some morning coffee. I replied to him that coffee may not be the best thing for a weak heart. He replied that he drinks very weak coffee. He didn't go on about coffee. It was idle conversation.
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Hey. If you have a problem, that's the only thing you should be talking about and nothing more. :wink2:
 
First off the doctor never told me I could not drink coffee. Second from what I have been told all the test I am getting ready to go through are to see how this disease has attached my heart. Not once has the doctor told me to be ready for surgery.

If I do not comprehend what this is all about, its because no one has told me. Not once has the doctor told me to get ready for heart surgery. He did tell me there was nothing no one can do. the test I am going in for starting today, from my understanding are not being done for surgery but to see how far along this disease is and how much time I have left. This is what I was told. Nothing about surgery. The doctor told me there is nothing no one can do. Now he did not tell the wife, but he did not tell the wife much anything. I had to pull it out of him.

The only thing the doctor was concerned with, was if I smoke. Not once did he ask, do you drink coffee?

I would like to know where the heart surgery came from. For not once has this been asked or told to me. Not once has the heart doctor said, we might be doing surgery. Not once. What he did say...Nothing no one can do. That says a lot. If I am wrong I will report it here. But as it stands right now, this is not about surgery.

Thanks again guys. I know you all care. That means a lot to me.

I have to get ready for the hospital. Talk with everyone later. I will report what happens today.

Tony
P.S. If they offer heart surgery I will take it. I thought long and hard about that. Do I want to stretch my life out longer. At first I said no way I want to live another year, but... Yes I do.
 
SixPapaCharlie said:
Hey. If you have a problem, that's the only thing you should be talking about and nothing more. :wink2:
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Yeah, you are probably right.

Even though almost everyone says that one of the hardest thing on the heart is stress, and that a good way to deal with stress is to try to take your mind off your troubles as much as possible, and to think about pleasant things,

We should require that Tony only wallow in his own misery and concentrate on his pending death. That will relieve his stress.

And when people have personal problems, that is all we should allow them to discuss. They should not be allowed to make frivolous posts.

I took Tony to task for wanting help buying an ATV. But criticizing him for saying he drinks weak coffee is a little harsh, don't you think?
 
1600vw said:
If I do not comprehend what this is all about, its because no one has told me.
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Google? I have found with health providers that it's best to listen intently to what they tell you, then do one's own research. There have been many times that the information I have been given is incomplete at best and incorrect at worst.

I have been asked many times in various situations by physicians and surgeons if I was an MD, just because I had done my research and was asking good questions.

Nobody cares as much about you, as you. You have to take responsibility for your own health, you can't just turn the keys over to the docs and hope for the best. Well, you can, but then you will get predictably mediocre outcomes.
 
JOhnH said:
Yeah, you are probably right.

Even though almost everyone says that one of the hardest thing on the heart is stress, and that a good way to deal with stress is to try to take your mind off your troubles as much as possible, and to think about pleasant things,

We should require that Tony only wallow in his own misery and concentrate on his pending death. That will relieve his stress.

And when people have personal problems, that is all we should allow them to discuss. They should not be allowed to make frivolous posts.

I took Tony to task for wanting help buying an ATV. But criticizing him for saying he drinks weak coffee is a little harsh, don't you think?
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Maybe not. I mean maybe he could man up a bit and drink some good truck stop coffee instead of that stuff he refers to as "like tea".

Tony, Here forward, you need to drink real coffee.

In fact every breakfast from now on should look like this:

A+real+mans+breakfast_c6f19e_4287319.jpg
 
Your advice to do his own research is good. And it is true that nobody is going to care about him as much as him.

But we often get clients spouting stupid stuff they read on the internet, thinking they know more than our doctors. A couple of times I asked them if they were a doctor. They said NO, and I said "it shows". (Actually, I didn't really say it, I just thought it as loudly as I could).

Not to say that you shouldn't do the research, and discuss it with your doctor, but trying to argue with the doctor because you read something on the internet doesn't usually impress your doctor.

bullwinkle said:
Google? I have found with health providers that it's best to listen intently to what they tell you, then do one's own research. There have been many times that the information I have been given is incomplete at best and incorrect at worst.

I have been asked many times in various situations by physicians and surgeons if I was an MD, just because I had done my research and was asking good questions.

Nobody cares as much about you, as you. You have to take responsibility for your own health, you can't just turn the keys over to the docs and hope for the best. Well, you can, but then you will get predictably mediocre outcomes.
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Bryan, I just reread your post and I see that my old eyes missed your wink in my tiny iPhone screen. Sorry I "yelled" at you.

JOhnH said:
Yeah, you are probably right.

Even though almost everyone says that one of the hardest thing on the heart is stress, and that a good way to deal with stress is to try to take your mind off your troubles as much as possible, and to think about pleasant things,

We should require that Tony only wallow in his own misery and concentrate on his pending death. That will relieve his stress.

And when people have personal problems, that is all we should allow them to discuss. They should not be allowed to make frivolous posts.

I took Tony to task for wanting help buying an ATV. But criticizing him for saying he drinks weak coffee is a little harsh, don't you think?
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1600vw said:
Tony
P.S. If they offer heart surgery I will take it. I thought long and hard about that. Do I want to stretch my life out longer. At first I said no way I want to live another year, but... Yes I do.
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Of course you want to quality life as long as possible! You want to see how badly JJ Abrams f*****s up Star Wars! Will it be as bad as Star Trek? Will he ever learn to minimize Lens Flare, or will every lightsaber battle be overdone? Can Avengers 2 ever be as good as Avengers 1? What about Guardians of the Galaxy 2, in mid-2016? Don't you dare miss that!

Really - these are important and serious issues.

(*snorgle*)
 
JOhnH said:
Not to say that you shouldn't do the research, and discuss it with your doctor, but trying to argue with the doctor because you read something on the internet doesn't usually impress your doctor.
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There are reputable places on the web, many of them the same places the doctors get their info. Case in point - got prescribed meds (FAA approved) about a year ago. Immediately went to the manufacturer's website to get the comprehensive data sheet (much more detail than what you get from the drug store). Next meeting with the doc I pointed out the side-effects that I was exhibiting, and that I read about them on the manufacturer's site.

He pulled out his phone, looked up the info (same place I did) and agreed. Dosage was immediately lowered, and I just had another blood test yesterday to see if that solved the problem.

Yes, there's far too much trash out there, but by using the reputable sources, it's a definite benefit.
 
I agree, and I don't believe anything I said refuted that what you wrote. On the other hand there are web sites that swear that vaccines cause autism. Or that you can lose weight by eating some magic food.

murphey said:
There are reputable places on the web, many of them the same places the doctors get their info. Case in point - got prescribed meds (FAA approved) about a year ago. Immediately went to the manufacturer's website to get the comprehensive data sheet (much more detail than what you get from the drug store). Next meeting with the doc I pointed out the side-effects that I was exhibiting, and that I read about them on the manufacturer's site.

He pulled out his phone, looked up the info (same place I did) and agreed. Dosage was immediately lowered, and I just had another blood test yesterday to see if that solved the problem.

Yes, there's far too much trash out there, but by using the reputable sources, it's a definite benefit.
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Again, this is true. But many people judge a "reputable source" by the fact that they agree with it or it is what they want to hear.

Yes. Do your research on the internet. then DISCUSS it with your doctor. We often prescribe drugs that we know will have side effects. But the judgement has to do with the severity and frequency of the side effects as compared to the potential benefit.
 
AcroBoy said:
A lot of spine surgeons no longer use discograms for the very reason you stated. It's hard to comprehend how you can go on about the type of coffee you drink while contemplating the planning of open heart surgery. As always there seems to be a lack of perspective.
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Seems to me Tony is trying to stay positive and enjoy life as best he can.

David
 
flhrci said:
Seems to me Tony is trying to stay positive and enjoy life as best he can.

David
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:cheers:



Made it through round 1. They stuck some sort of electric thing on my chest for two days. I was dizzy most the day yesterday. I slept almost all day after we got home.

Today doing nothing but laying around. I love to sing and did a little of that. Its so nice out today, but I do not feel like doing anything but going back to bed.

I guess, it is what it is.

Tony
 
Doctor told me they are splitting my chest. He said they would take Duct tape and wrap the aorta valve to keep it from swelling anymore. He said he was calling it ducked tape because its just like duct tape.

I wonder if I will turn into a real hillbilly and start saying things like, yous all and Mom-n-them. I might start hording duct tape....lol

Who would of thought duct taping my heart. He said if they catch this before the aorta splits, I have a 90% chance of living 20 years. If they do this after the aorta fails I have a 70% chance of living 10 years. He also said he was amazed I was still alive today.

This was from the Marfan's doctor. I do indeed have it and my aorta valve is swollen to 4 cm. He said at 5 cm it could tear. He wants this aorta repaired asap.
 
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Good luck Tony,
When are they going to operate?
 
The cardiologist will let me know. I see him in two weeks.
 
I need to sell those airplanes. We have some really hefty medical bills coming up. They want to do a genetics test on me and this cost 1000 bucks. Insurance pays 80% I have to pay the other 20%. With all the copay's and everything, I need to sell those planes or one anyway.

Please pass the word along.

Tony
 
The genetics test is for insurance so they will pay thier 80% for the heart surgery. Something about the surgery has to be life threatening and this test will show this.
 
Wishing you well

I'm not a believer, so this is my version of the "praying for you" message. I am glad to hear that the likely outcomes are good ones.
 
1600vw said:
Doctor told me they are splitting my chest. He said they would take Duct tape and wrap the aorta valve to keep it from swelling anymore. He said he was calling it ducked tape because its just like duct tape.

I wonder if I will turn into a real hillbilly and start saying things like, yous all and Mom-n-them. I might start hording duct tape....lol

Who would of thought duct taping my heart. He said if they catch this before the aorta splits, I have a 90% chance of living 20 years. If they do this after the aorta fails I have a 70% chance of living 10 years. He also said he was amazed I was still alive today.

This was from the Marfan's doctor. I do indeed have it and my aorta valve is swollen to 4 cm. He said at 5 cm it could tear. He wants this aorta repaired asap.
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Good news that they think they can treat it Tony. Funny how perspective can change in a few weeks, from little hope to lotsa hope. Hang in there and be smart, meaning don't do anything stupid like pushing a car, lol.
 
PaulS said:
Good news that they think they can treat it Tony. Funny how perspective can change in a few weeks, from little hope to lotsa hope. Hang in there and be smart, meaning don't do anything stupid like pushing a car, lol.
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Two different doctors. Lets see what the cardiologist has to say. I see him in a couple weeks.

But it is good news so far. What a roller coaster of a ride so far. This doctor did tell me to not have back surgery. I kinda agree with him. I will have to live the rest of my life with the back I have.

Thanks again

Tony
 
Nothing you cant fix with duct tape and baling wire.

Glad to hear you have options.
 
1600vw said:
Two different doctors. Lets see what the cardiologist has to say. I see him in a couple weeks.

But it is good news so far. What a roller coaster of a ride so far. This doctor did tell me to not have back surgery. I kinda agree with him. I will have to live the rest of my life with the back I have.

What he probably meant was that you should not have back surgery until after your open heart surgery, you've reached a healing plateau, and that your heart could withstand the stress of a big operation. This is different from saying you could never undergo spine surgery.
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AcroBoy said:
1600vw said:
Two different doctors. Lets see what the cardiologist has to say. I see him in a couple weeks.

But it is good news so far. What a roller coaster of a ride so far. This doctor did tell me to not have back surgery. I kinda agree with him. I will have to live the rest of my life with the back I have.

What he probably meant was that you should not have back surgery until after your open heart surgery, you've reached a healing plateau, and that your heart could withstand the stress of a big operation. This is different from saying you could never undergo spine surgery.
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What he said was this, Quote: There are three area's of my body I would never let anyone touch. The spinal canal is one of them. The outcome could be far worse then what you are dealing with today.

Tony
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1600vw said:
What he said was this, Quote: There are three area's of my body I would never let anyone touch. The spinal canal is one of them. The outcome could be far worse then what you are dealing with today.
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Did you see Dr Oz ? He comments on a lot of stuff outside of his area of expertise too.
 
If it wasn't for surgery on my spine I wouldn't have been able to play soccer with my 5 year old daughter today, just some thought for you.
 
I had surgery on my neck and am a different person because of it. But I also had a discogram that is also surgery and it tore me up. I am 70% worse today and you can see it on an MRI. I had an MRI a month before this discogram. After the discogram they did another MRI and that Discogram made matters worse.

My Back doctor told me that no one should ever do this surgery on someone in my condition. I am not done with the doctor who order this. but I have to fight one fight at a time. But I am going after this man. He will pay and should pay for what he did to me.

I will think twice before someone touches my back again. This doctor I just saw yesterday believes I should do the same, and I agree with him.


Tony
 
Good luck Tony! I wish I could help you but my thoughts are with you as you go on yet another medical journey. Glad to hear that the Doc's can help you.

How long do they expect you to be out of commission after the aorta surgery?

Enjoy life the best you can!

David
 
flhrci said:
Good luck Tony! I wish I could help you but my thoughts are with you as you go on yet another medical journey. Glad to hear that the Doc's can help you.

How long do they expect you to be out of commission after the aorta surgery?

Enjoy life the best you can!

David
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Thanks for the kind words, and that goes to everyone.

I am not sure of all the details. The cardiologist will let me know more. The Dr. did tell me they will not be stopping my heart, the just need to wrap the aorta in tape.

Now lets see what cardiologist thinks of all this. I do know my heart rate seems to be dropping even more. I am sure the cardiologist will feel me in. Talk about being anxious.

I would not think there should not be much recovery. the worst part is splitting the chest.

Thanks again.

Tony
 
I will sell those two airplanes as a package deal for 10 grand. The bills just keep coming in. They tell me I need 200 bucks for one test. Then in the mail yesterday we get hit with another few hundred dollar bill, not to mention the bills that came in a week ago.

We became homeless in the early 2000's from medical bills, I will not let it happen again. I will go without treatment before that happens.

I need to sell those airplanes.

Tony
 
1600vw said:
I will sell those two airplanes as a package deal for 10 grand. The bills just keep coming in. They tell me I need 200 bucks for one test. Then in the mail yesterday we get hit with another few hundred dollar bill, not to mention the bills that came in a week ago.

We became homeless in the early 2000's from medical bills, I will not let it happen again. I will go without treatment before that happens.

I need to sell those airplanes.

Tony
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Care to post some details about the airplanes?
 
The Avenger V has a 40hp 1/2 vw built by Scott Casler of Hummel engine. Burns a little over 1 gallon an hour. Flies 65-70. with an 8 gallon fuel tank. She also has TAS and a GPS.

Sonerai II I have not flown her,but she is close to being flown. I hope within the next month she will be flown. Not by me but by a friend of mine. She is power by an a-65, she has a 14 gallon fuel tank. New prop, asi,vsi,.

I hate to sell either one. The day they leave will be a really sad day for me.

Tony
 

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Have you spoken with a financial counselor at the hospital and discussed your eligibility for Title 19 (Medicaid) or other assistance program? If you're already 100% disabled, on SSI, and on Medicare then the co-pays you're describing seem exceedingly high unless your family income exceeds your eligibility for T-19. Even then the financial counselor can work out payment plans.
The question of owning two airplanes while living on government subsidies raises its own moral and ethical questions, if this is the case.
 
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