Broke my back and need HELP.....



It's really crazy how I got in contact with this family who's father passed from a bone disease. They told me all he wanted was to get out on his property and watch as others did the work he would be doing if health had not been a factor. Not one person claimed he wanted to play, or was out to have a good ol-time. They understood his condition and tried to make what was left of his life a good one.

This is all I am searching for myself. But between bill collectors and everything else. Life sucks, but I enjoy it the best I can. I believe our Lord has lot to do with that. People make my life hell he tries and change that. I am a lucky man for I do have him in my life, I feel it.

I am done posting my daily trials and tribes.

This is a long thread and been around a while. But this thread gives a little insight into some of the members of this forum. Eye opening. Some very caring some not so much.

Tony

P.S. MRI today and I see the heart doctor later this week.
 
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Tony,
You said you wanted an ATV so you could get out to your plane and maybe even fly.
You have a broken back for God's sake! You shouldn't even be thinking about your airplanes, except to sell them to pay for your medical expenses. You shouldn't be going out into the ice and snow. You should be resting up for your Surgery. Leave the dreams of flying for when you can walk again.

There are a lot of very caring people on this board, but when any of them give you advice that hurts your feelings, you rail against them and call them names.

Get your MRI. See your Heart doctor. Let us know how that goes. But don't tell us that your wife wakes you up because you are screaming from pain in your sleep and then tell us you want an ATV so you can get out in the ice and snow to go fly your airplane. If you want us to care about you, you have to show us that you care about your self.
 
Tony,
You said you wanted an ATV so you could get out to your plane and maybe even fly.
You have a broken back for God's sake! You shouldn't even be thinking about your airplanes, except to sell them to pay for your medical expenses. You shouldn't be going out into the ice and snow. You should be resting up for your Surgery. Leave the dreams of flying for when you can walk again.

There are a lot of very caring people on this board, but when any of them give you advice that hurts your feelings, you rail against them and call them names.

Get your MRI. See your Heart doctor. Let us know how that goes. But don't tell us that your wife wakes you up because you are screaming from pain in your sleep and then tell us you want an ATV so you can get out in the ice and snow to go fly your airplane. If you want us to care about you, you have to show us that you care about your self.

John I have had a broken back 3/4 of my life. This is nothing new. Just getting a lot worse. I will slow down but will not roll over and die. I can modify what I do as I have been doing all my life. The day I can no longer walk I will give up. I am not done yet.

I had that MRI today. I am very grateful for the facility that did this for me. BUT.

This MRI machine was so loud, they did put a set of head phones on me and pumped music in at such a high pitch or full of treble that my ears are ring worse then they ever had. I had ringing in the ears but this is really bad now. Between the MRI machine and the music i thought I would be deaf by the time it was over.

One of those techs need to get in that machine and hear the torture they put those through who go into this machine.

This MRI machine also was not a full length tube. It was open on each end like a CAT scan. When I saw it I said, I am having a CAT scan? They lady said no its an MRI machine.

I hope this ringing lessons some, its driving me nuts its so loud. I can not hear the tv over it.

But John I have been living like this for years. I hurt my lower back when I was 24, its never been correct after that. This spot has always hurt, its just now the doctors are starting to understand what is going on and are finding the problems. That Discogram took a lot out of me. It made me worse. The MRI I just went through will tell us how bad I am or what injury if any it did and how bad. We will see in a week. I go back to have this read in a week.

Thanks for the comments guys and gals. I say Gals, but I am not sure any woman have commented. But just in case I do not want to leave anyone out.

Thank you everyone.

To be continued.........

Tony
 
Oh that is terrrible! :sad:

Would it help if we get you a high end pair of noise cancelling headphones?
 
Oh that is terrrible! :sad:

Would it help if we get you a high end pair of noise cancelling headphones?


I have no idea what those are for. Not everyone uses a radio. But I get your drift.....:yes:

I have a word for people like you..But my Mother told me if I have nothing nice to say... say nothing.......

Thanks for the comment.

Now you have a nice day.

Tony
 
Like I said this thread is eye opening. Teaches one about the members of this forum.

Tony
 
I am sorry you found the MRI so disconcerting. Mrs. Steingar has had several and had no complaints about noise, and I've never heard one get that loud from the outside. I suspect the noise in your ears will calm down after a bit.
 
I am sorry you found the MRI so disconcerting. Mrs. Steingar has had several and had no complaints about noise, and I've never heard one get that loud from the outside. I suspect the noise in your ears will calm down after a bit.


This is not my first time around the block either. I have had maybe twenty MRI's to date. I have a stack of MRI's that are over a foot tall. If they were all not put away I would dig them out and take a pic of these. After 30 years I have had my share. I am surprised I do not glow in the dark. I have never had an MRI machine this loud either. I mean this was loud. The music made it worse.

Tony
P.S. This was my first half tube MRI machine or open at both ends. My head almost stuck out the other end. I never felt like I was in a tube.
 
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I was in one MRI machine and it had a mirror in it. I could see the techs running the machine and we talked back and forth the complete time, even while the machine was running. This was in Dr. Peters office.

That setup made it so much more comfortable. I could keep my eyes open and not feel trapped in a tube. It was a very nice experience for having an MRI.

Tony
 
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My sincerest apologies if I have offended you. This story truly has been an eye-opening, no more than that, an eye-WATERING saga of true suffering and mistreatment. How low can it go that even the MRI machine is conspiring to make your life miserable? A broken back and ringing ears now. Just too awful. I have to go now. I'm going to tear up again.

:sad:
 
My sincerest apologies if I have offended you. This story truly has been an eye-opening, no more than that, an eye-WATERING saga of true suffering and mistreatment. How low can it go that even the MRI machine is conspiring to make your life miserable? A broken back and ringing ears now. Just too awful. I have to go now. I'm going to tear up again.

:sad:

Karma is a bitc#.

Now you have a nice day.

Tony
 
MRI magnets have gotten shorter in recent years as the manufacturers have figured out how to create a homogenous field with a shorter bore. Some imaging sequences are louder than others, the noise is created by the magnetic coils that change the magnetic field to create the images. With the high magnetic field and RF signal inside the bore, building an ANR headset is challenging. I have spent hours in MRI scanners doing research work, a set of orange 3M earplugs was usually all we used.
 
MRI magnets have gotten shorter in recent years as the manufacturers have figured out how to create a homogenous field with a shorter bore. Some imaging sequences are louder than others, the noise is created by the magnetic coils that change the magnetic field to create the images. With the high magnetic field and RF signal inside the bore, building an ANR headset is challenging. I have spent hours in MRI scanners doing research work, a set of orange 3M earplugs was usually all we used.


The next time I will wear ear plugs. I learned something. If I would have had this experience before I would have wore ear plugs. But never has one been that loud. My ears are still ringing really bad.

I understand the working of an MRI machine and why they make the noise they do. This one was just louder then the rest. Not good hurting one ears trying to fix other things. I value my earring, even if others believe I am being a baby. Screw them, let them got through this and see what they say about it.

Being able to ear without this loud ringing is important to me. I care less what others say about it.

Tony
 
I went to see the heart doctor. They did an ultrasound. It was cool watching the valves open and close.
Then she went to color or the color screen, showing red pressure side and the low blue pressure side. It was cool watching how red flowed from one area to the next and how it then went to blue.
When its blue one should not see red, we saw red. The lady doing the ultrasound did not seem to think it was anything, just a small leak is what she said.
I talk to the doctor Tuesday about the results.

Tony
 
Marfans sucks.

This is my last post. I have found life is very short. God Bless everyone. I received some bad news from the doctor just 5 mins ago.

Don't feel sorry for me or pitty. It is what it is. I fought a long hard fight most my life. But I guess its just that time.

Its what Marfans does to the aorta valve, and it has done it to mine.

There will be a couple airplanes going up for sale. I hope maybe to fly once or twice more but it looks like its over for me.

Not much more to say. If those who gave to my fund want a refund I will send it. I never did cash that check that was sent, I will burn it.

Goodbye.

Tony
 
Very sorry to hear the news Tony. I really am.
But don't burn the check. Give it to your wife or your mother. If you burn the check then the funding site will keep the money.

Marfans sucks.

This is my last post. I have found life is very short. God Bless everyone. I received some bad news from the doctor just 5 mins ago.

Don't feel sorry for me or pitty. It is what it is. I fought a long hard fight most my life. But I guess its just that time.

Its what Marfans does to the aorta valve, and it has done it to mine.

There will be a couple airplanes going up for sale. I hope maybe to fly once or twice more but it looks like its over for me.

Not much more to say. If those who gave to my fund want a refund I will send it. I never did cash that check that was sent, I will burn it.

Goodbye.

Tony
 
Very sorry to hear the news Tony. I really am.
But don't burn the check. Give it to your wife or your mother. If you burn the check then the funding site will keep the money b


John thanks. But I had someone send me a check. It that check I will burn. That money in the fund. I can send it back to the people who gave it to me. I know who they are. All I need to do is cash out that gofund account and send them the money back.

I found my aorta is falling apart. Marfans attacks the aorta valve and it has attacked mine. I speak with the doctor more thursday. He made it very clear he wants my wife with me. He did not like it I was speaking to him today alone.

I need to sell those airplanes and not leave them for her to deal with like most people do. Maybe someone on here wants them.

When I said goodbye its because I am going to try and speand my time doing something besides sitting on the computer. But then I set back and ask myself, just what are you going to do? I Guess this is what I will do. Seems like a waste but if I could do anything else, I would not be here now.

The back doctor wants to operate on my back in the next week or so. I have pics that everyone should see. My back is tore up. But do I go through that or just live the little time I have left like I am and not laid up in bed.

This really took some strange turns. I can tell its all coming to an end. I feel it. Everyday I fell worse. I dream of the day I will fly again. That day might not ever come. But I will dream.

I do thank everyone for taking the time and commenting.

God Bless

Tony
 
My wishes for you have not changed in the past three weeks:

I hope that you find the help you need, though you may need to consider that the help might not be in the form you currently seek.

So far, you have a 100% success rate on making it through each day alive. Though I understand your current disappointment, don't let these circumstances affect your perfect record.

Godspeed.
 
I'm not sure what you meant by that. This was probably th calmest post Tony has made. He seems very accepting of this.

What I meant is for Tony to slow down and not jump to conclusions. The doctor wants to talk to him and his wife, but you should always have someone with you when you are dealing with heavy stuff.

Get the whole story first. You got some bad news, give yourself some time to process, don't be rash. Doctors can't predict the future. See what he has to say on Thursday and bring your wife to help with what you may or may not miss.
 
Marfans does indeed suck, and I hope it wasn't passed onto your offspring (if you have any). I can only give best wishes in an obviously painful situation.
 
I love the positive thinking. But the doctor made it clear what was happening. He can not treat for this because my blood pressure is so low. It has to do with that valve. It's swollen, he never even mentioned the leak, but I am sure he will on the next talk and He wants me to see this Marfans doctor asap.

I have been a very lucky man. Most never get to do what I have done. Did I set the world on fire, no. But I had a good life.

I am sad for my family. They know nothing of this yet. I just found all this out when I posted. I almost did not post this. But we all have come this far together, might as well finish it.

I do have hopes for a good outcome. But I also understand what is happening and why.

Tony
 
I wish you all the best. As mentioned before, it is a disease complex enough that the big centers have entire clinics dedicated to it. My opinion remains that you should seek the services of a connective tissue disorders or Marfans clinic.
 
I wish you all the best. As mentioned before, it is a disease complex enough that the big centers have entire clinics dedicated to it. My opinion remains that you should seek the services of a connective tissue disorders or Marfans clinic.

The heart doctor is already doing this. I have to drive a few hours to get to this place. He wants me there in the next couple days. He would not say much else for I was alone. He made it very clear he wants my wife with me the next time we talk.

Thanks for this advice though.

Tony
 
What I meant is for Tony to slow down and not jump to conclusions. The doctor wants to talk to him and his wife, but you should always have someone with you when you are dealing with heavy stuff.

Get the whole story first. You got some bad news, give yourself some time to process, don't be rash. Doctors can't predict the future. See what he has to say on Thursday and bring your wife to help with what you may or may not miss.
OK, that's good advice. I'm sorry I misunderstood your meaning.
 
The doctor told me there was nothing he could do. It has to do with the meds they use lowers blood pressure and my blood pressure is already to low.
I know from what research I have done on Marfans, I am lucky to have lived this long. I say I am not done yet. I refuse to quit.

Tony
 
And why weren't you referred to a cardiac surgeon to discuss aortic root and/or valve replacement?
 
I was in one MRI machine and it had a mirror in it. I could see the techs running the machine and we talked back and forth the complete time, even while the machine was running. This was in Dr. Peters office.

That setup made it so much more comfortable. I could keep my eyes open and not feel trapped in a tube. It was a very nice experience for having an MRI.

Tony

I've had a few (knee, shoulder, etc). Place I go has those little foam earplugs. I've been known to fall asleep as long as the earplugs are in.
 
And why weren't you referred to a cardiac surgeon to discuss aortic root and/or valve replacement?


That was a cardiac surgeon that told me this. He will discuss more of this Thursday when my wife will be with me.

He made it clear there is nothing he can do.
 
Ask him for suggestions for a second opinion and a referral to a major university teaching center like Rush, Wash U in STL, Mayo, or Cleveland Clinic.
 
Ask him for suggestions for a second opinion and a referral to a major university teaching center like Rush, Wash U in STL, Mayo, or Cleveland Clinic.

He is on this. I have to go to a clinic that deals with Marfans. Its a few hours away. Nothing anyone else can deal with. Marfans is a very tough disease. I am lucky to have lived this long.
 
He is on this. I have to go to a clinic that deals with Marfans. Its a few hours away. Nothing anyone else can deal with. Marfans is a very tough disease. I am lucky to have lived this long.

Hang in there Tony, the fat lady hasn't sung yet.......
 
"This is my last post."

Dammit man . . . you wrote that only yesterday and already you've posted six more times. Your credibility is in tatters.
 
"This is my last post."

Dammit man . . . you wrote that only yesterday and already you've posted six more times. Your credibility is in tatters.

Read post 419 and I explain this.

I careless what you think.

Tony
 
The wife and I spoke with the doctor. He told us what he told me. Nothing more. They are setting up a bunch more test. But you know what, I am not worrying about this. I look forward to a good summer.

Tony
 
"This is my last post."

Dammit man . . . you wrote that only yesterday and already you've posted six more times. Your credibility is in tatters.
Jeez man,you're cruel!
There are a ton of people that said they would not be posting again, for a whole lot less reason than Tony. They almost all come back sooner or later.

What do you want Tony to do?

But you are new here so maybe you can have this one nasty post ignored.

Tony, I hope you enjoy the summer, and keep us posted.
 
The wife and I spoke with the doctor. He told us what he told me. Nothing more. They are setting up a bunch more test. But you know what, I am not worrying about this. I look forward to a good summer.

Tony

Good for you Tony, hang in there, does this stop the back operation?
 
Good for you Tony, hang in there, does this stop the back operation?


I am not sure. I have not heard anything from the back doctor. I do know the two doctors are talking with each other.

Here is one of the pics from the MRI they just did.
 

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