Written off by Dr.'s

cindy · 03-03-2002, 04:51 AM

Spinal cord injury at C4-5-6, T7-8. Been surgically treated both levels with instrumentation in cervical level. They were central disc herniations that were misdiagnosed for a couple of years. I do walk with assistance. They were not able to fully decompress cervical cord (9mm)and nor were they able to get the calcified fragments in my thoracic cord but I was told I would not worsen.

I have become increasing weaker and breathless. Can no longer ride exercise bicycle for more than 3 minutes before extremely breathless. I still walk, but boy is it slowing down even further.

I fianlly went to new cardio and he did an echo and told me it was normal. Then he told me I had mitral regurgitation. He said my problems were from weakened muscles and that I need to get the other muscles to take over for the ones which were gone.

Four years ago, another cardio did a cath because of areas of ischemia which showed up on persantium/cardolite stress test. When he did the cath, he told us that all my arteries were normal.

Do spinal injuries cause mitral regurgitation? Are valves passive and need the muscles to work correctly? I did get a copy of the echo and all the measurements are high normal limits and one is low normal. This report also said something about concentric hypertrophy and mild wall motion abnormality.

Anyway, does my weakness cause valve problems? The cardio did no blood work, no x-ray. He did check pulses in my feet, which were barely discernabe, and took my blood pressure in right arm and asked me if that were correct (it wasn't, left and right arms have over 50 point difference).

I think I have been written off because of the spinal injuries.

I don't understand about the valve being weakened and wondered if all of them will be going because I know pressure difference between arms relates to the aorta, and pulse differences in feet and arms also means aorta.

Anyone know?

//

cindy · 03-03-2002, 08:17 AM

Or does the fact that the myelomalacia is in the center of my cord have anything to do with the visceral problems?

Thanks!

//

Wise Young · 03-03-2002, 10:59 AM

Cindy, you must not allow your doctors to blame all problems on spinal cord injury. While spinal cord injury does cause a lot of problems, people with spinal cord injury have other problems that may not be related. But, let me comment first on your spinal cord injury.

1. Continued compression of your cord and stenosis (narrowing) of the spinal canal. If I were you, I would get another opinion on the compression of your spinal cord and see if your spinal cord can be completely decompressed. The fact that you are getting weaker and more breathless should be sufficient reason to decompress. The fact that you have myelomalacia (loss of spinal tract and white matter) is another reason for decompression. I think that it is not appropriate for doctors to sllow progressive loss of your spinal cord. This should be taken care of. If your current doctors are unwilling to do so, you need to find others.

2. Mitral regurgitation. Problems with cardiac valves frequently result from having had rheumatic fever (strep infection that infected your cardiac valves) when you were younger. It is not normal to have mitral regurgitation and so the fact that your doctor is saying that you have a normal echogram and mitral regurgitation is contradictory. I don't understand what he is talking about when he says that your problems are from weakened muscles. People with spinal cord injury do not normally get mitral regurgitation (this is the valve between the left atrium and left ventricle of the heart) and the regurgitation means that the valve is incompetent and leaking blood. Your heart has to work much harder to get the same amount of blood through. If this is true, you need to get a definitive opinion concerning fixing it or not.

So, I would strongly urge you to get a doctor who will put your whole health picture together and make sure that these issues are not put on the backburner. You need to find a doctor who has primary care responsibility for you. It doesn't sound good, the way that you are being bounced from specialist to specialist without a primary care doctor to explain the consequences and to make sure that these problems are taken care of. Both problems are serious but fixable.

Wise.

cindy · 03-05-2002, 06:40 AM

Thank you Dr. Wise. I'm going to try again.
I am presently under the University of Penn System. I did try the other health system, called Jefferson but when they did new MRI's the reports did not mention the fragments left in my thoracic spine, nor did they mention the 9mm Cervical Cord. They just said "post surgical" and "no new changes". No other treatments or suggestions were suggested except upping my baclofen from 80 mg. to 100 mg.

I sure hope that I can be helped and maybe going out of our area will do it. I was told (University of Penn, Dr. Brown) that my spinal problems were spinal cord injuries and that they wouldn't progress and that I had to live with them.

It is also really strange about the mitral regurgitation. If it is because of valve disease you would think I would be told to take those antibiotics before dental procedures and the cardiologist did not recommend them.....just exercise to strengthen other muscles to take over the ones that are weakened. Maybe its secondary to that thoracic surgery I had.

My foot reflexes no longer do anything, I thought this might be the reason other doctors couldn't help me.

//

03-03-2002, 04:51 AM	#1
cindy Senior Member Join Date: Sep 2001 Location: // Posts: 106	Written off by Dr.'s Spinal cord injury at C4-5-6, T7-8. Been surgically treated both levels with instrumentation in cervical level. They were central disc herniations that were misdiagnosed for a couple of years. I do walk with assistance. They were not able to fully decompress cervical cord (9mm)and nor were they able to get the calcified fragments in my thoracic cord but I was told I would not worsen. I have become increasing weaker and breathless. Can no longer ride exercise bicycle for more than 3 minutes before extremely breathless. I still walk, but boy is it slowing down even further. I fianlly went to new cardio and he did an echo and told me it was normal. Then he told me I had mitral regurgitation. He said my problems were from weakened muscles and that I need to get the other muscles to take over for the ones which were gone. Four years ago, another cardio did a cath because of areas of ischemia which showed up on persantium/cardolite stress test. When he did the cath, he told us that all my arteries were normal. Do spinal injuries cause mitral regurgitation? Are valves passive and need the muscles to work correctly? I did get a copy of the echo and all the measurements are high normal limits and one is low normal. This report also said something about concentric hypertrophy and mild wall motion abnormality. Anyway, does my weakness cause valve problems? The cardio did no blood work, no x-ray. He did check pulses in my feet, which were barely discernabe, and took my blood pressure in right arm and asked me if that were correct (it wasn't, left and right arms have over 50 point difference). I think I have been written off because of the spinal injuries. I don't understand about the valve being weakened and wondered if all of them will be going because I know pressure difference between arms relates to the aorta, and pulse differences in feet and arms also means aorta. Anyone know? //

03-03-2002, 08:17 AM	#2
cindy Senior Member Join Date: Sep 2001 Location: // Posts: 106	forgot-myelomalacia Or does the fact that the myelomalacia is in the center of my cord have anything to do with the visceral problems? Thanks! //

03-05-2002, 06:40 AM	#4
cindy Senior Member Join Date: Sep 2001 Location: // Posts: 106	Thank you Thank you Dr. Wise. I'm going to try again. I am presently under the University of Penn System. I did try the other health system, called Jefferson but when they did new MRI's the reports did not mention the fragments left in my thoracic spine, nor did they mention the 9mm Cervical Cord. They just said "post surgical" and "no new changes". No other treatments or suggestions were suggested except upping my baclofen from 80 mg. to 100 mg. I sure hope that I can be helped and maybe going out of our area will do it. I was told (University of Penn, Dr. Brown) that my spinal problems were spinal cord injuries and that they wouldn't progress and that I had to live with them. It is also really strange about the mitral regurgitation. If it is because of valve disease you would think I would be told to take those antibiotics before dental procedures and the cardiologist did not recommend them.....just exercise to strengthen other muscles to take over the ones that are weakened. Maybe its secondary to that thoracic surgery I had. My foot reflexes no longer do anything, I thought this might be the reason other doctors couldn't help me. //

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03-03-2002, 10:59 AM	#3
Wise Young Administrator Join Date: Jul 2001 Location: New Brunswick, NJ, USA Posts: 37,975	Cindy, you must not allow your doctors to blame all problems on spinal cord injury. While spinal cord injury does cause a lot of problems, people with spinal cord injury have other problems that may not be related. But, let me comment first on your spinal cord injury. 1. Continued compression of your cord and stenosis (narrowing) of the spinal canal. If I were you, I would get another opinion on the compression of your spinal cord and see if your spinal cord can be completely decompressed. The fact that you are getting weaker and more breathless should be sufficient reason to decompress. The fact that you have myelomalacia (loss of spinal tract and white matter) is another reason for decompression. I think that it is not appropriate for doctors to sllow progressive loss of your spinal cord. This should be taken care of. If your current doctors are unwilling to do so, you need to find others. 2. Mitral regurgitation. Problems with cardiac valves frequently result from having had rheumatic fever (strep infection that infected your cardiac valves) when you were younger. It is not normal to have mitral regurgitation and so the fact that your doctor is saying that you have a normal echogram and mitral regurgitation is contradictory. I don't understand what he is talking about when he says that your problems are from weakened muscles. People with spinal cord injury do not normally get mitral regurgitation (this is the valve between the left atrium and left ventricle of the heart) and the regurgitation means that the valve is incompetent and leaking blood. Your heart has to work much harder to get the same amount of blood through. If this is true, you need to get a definitive opinion concerning fixing it or not. So, I would strongly urge you to get a doctor who will put your whole health picture together and make sure that these issues are not put on the backburner. You need to find a doctor who has primary care responsibility for you. It doesn't sound good, the way that you are being bounced from specialist to specialist without a primary care doctor to explain the consequences and to make sure that these problems are taken care of. Both problems are serious but fixable. Wise.