Inspired Spinal Cord Injury Support Forum

Knight
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Finally, A Real Diagnosis! Dec 22, 2014 20:08:16 GMT -8 via Inspired Mobile

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Post by Knight on Dec 22, 2014 20:08:16 GMT -8

I went to see a physiatrist doctor today for a re-evaluation and a re-diagnosis. I did not get an MRI, but he evaluated and diagnosed my damage judging by the function and feeling I have.
According to him, I am a T10 incomplete paraparetic with both Cauda Equina and Conus Medullaris Syndromes. My initial injury (L1 burst fracture) only caused those two syndromes, but the damage done in the past 2 years has caused more damage than the accident did.

We also talked about medications for nerve pain, and he gave me a list to cross-reference with my psychiatrist, as the most effective medications for nerve pain affect the way the brain works; some of them are anti-depressants, and some are anti-seizure meds. Some include Cymbalta, Depakote, and Amytriptyline.

I hope to return to physical therapy soon in order to retain my remaining muscle tone, strength, and function, and perhaps, if my nerve pain & hypersensitivity are ever well-controlled, I will take another shot at "walking".

REFERENCES FOR YOU:

"What is the Conus Medullaris?"
m.laserspineinstitute.com/mobile/back_problems/spinal_anatomy/spinal_cord/conus_medullaris/

About Cauda Equina and Conus Medullaris Syndromes:
emedicine.medscape.com/article/1148690-overview

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wavewolf
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Finally, A Real Diagnosis! Dec 23, 2014 23:05:05 GMT -8

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Post by wavewolf on Dec 23, 2014 23:05:05 GMT -8

It is good to finally be understood and validated! I, too, waited for a functional diagnosis until I saw a physiatrist. He has helped me find ways of coping more than any other kind of doctor. The drugs you list are used for nerve pain associated with neurosarcoidosis, the disease that caused my SCI. They are likely to give you more relief without requiring ever higher doses. It takes a while to find the right balance for your situation, but this is very hopeful for you.

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Knight
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Finally, A Real Diagnosis! Dec 24, 2014 12:13:40 GMT -8 via Inspired Mobile

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Post by Knight on Dec 24, 2014 12:13:40 GMT -8

Dec 23, 2014 23:05:05 GMT -8 wavewolf said:

It is good to finally be understood and validated! I, too, waited for a functional diagnosis until I saw a physiatrist. He has helped me find ways of coping more than any other kind of doctor. The drugs you list are used for nerve pain associated with neurosarcoidosis, the disease that caused my SCI. They are likely to give you more relief without requiring ever higher doses. It takes a while to find the right balance for your situation, but this is very hopeful for you.

I definitely agree. It is a weight off my shoulders to explain to people that I am paraparetic (a.k.a. incomplete paraplegic or partial paraplegic). This word, unlike "incomplete paraplegic", seems to click on their unknowledgable brain and make a distinction between me and somebody who has a complete SCI, and they then understand why I can move my legs still. It's amazing what difference one little word can make.

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DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	Finally, A Real Diagnosis! Dec 24, 2014 14:37:00 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Dec 24, 2014 14:37:00 GMT -8 That's good to hear Knight. It's useful and reassuring to have someone who knows what they're doing! I hope the pain problems get resolved and you get back to excersizing and recovering. Walking would definitely be nice!
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Knight
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Finally, A Real Diagnosis! Dec 24, 2014 20:30:31 GMT -8 via Inspired Mobile

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Post by Knight on Dec 24, 2014 20:30:31 GMT -8

Dec 24, 2014 14:37:00 GMT -8 DJ said:

That's good to hear Knight. It's useful and reassuring to have someone who knows what they're doing! I hope the pain problems get resolved and you get back to excersizing and recovering. Walking would definitely be nice!

I got overly frustrated when he told me I "need to start walking" again. It felt like, regardless of how much pain and hypersensitivity I have, I'm going to be FORCED to walk. I feel like once I start down that path, I'm going to feel like I am not allowed to use my wheelchair anymore, which is totally not the case. To clarify: I think once people see me using a walker and braces, they will look at me like a failure when I use my wheelchair. I'm also nervous and a bit scared to start exercising in case I am not able to get my left leg to function again? That's going to hit me so hard if it happens.

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truwrecks
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Finally, A Real Diagnosis! Dec 25, 2014 0:45:38 GMT -8

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Post by truwrecks on Dec 25, 2014 0:45:38 GMT -8

Good the see you have a doctor that gives a damn enough to actually diagnose you instead of the arrogant neurologist that I had that is responsible for my worsening mobility.

Even if you progress enough to not use the wheelchair when using braces and walker/crutches you will still be using the wheelchair when not wearing the braces. Braces are not the end-all to mobility with any level of paraplegia.

Most people that are hard core driven to walk at any cost will find as they age and their body starts wearing out that they will be back in the wheelchair at some point. At 44 my shoulders hurt constantly and my elbows pop and ache. My right shoulder has arthritis and the left crunches with every move. Walking with braces and crutches causes me far more back pain than anything else. Pushing the wheelchair is murder on my shoulders. There are days when pain is so bad that getting out of bed takes everything I have.

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Treat others how you want to be treated.

DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	Finally, A Real Diagnosis! Dec 25, 2014 6:31:33 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Dec 25, 2014 6:31:33 GMT -8 Knight don't worry about what others think, do what you think is best for you and do what works best for you!
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wavewolf
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Finally, A Real Diagnosis! Dec 26, 2014 0:29:34 GMT -8

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Post by wavewolf on Dec 26, 2014 0:29:34 GMT -8

Dec 24, 2014 20:30:31 GMT -8 Knight said:

Dec 24, 2014 14:37:00 GMT -8 DJ said:

That's good to hear Knight. It's useful and reassuring to have someone who knows what they're doing! I hope the pain problems get resolved and you get back to excersizing and recovering. Walking would definitely be nice!

I got overly frustrated when he told me I "need to start walking" again. It felt like, regardless of how much pain and hypersensitivity I have, I'm going to be FORCED to walk. I feel like once I start down that path, I'm going to feel like I am not allowed to use my wheelchair anymore, which is totally not the case. To clarify: I think once people see me using a walker and braces, they will look at me like a failure when I use my wheelchair. I'm also nervous and a bit scared to start exercising in case I am not able to get my left leg to function again? That's going to hit me so hard if it happens.

He is likely trying to help you maintain and build what strength and control you have, but not at the cost of over-exertion or a fall. Using the right tool for the right time and task is key. You owe no one an explanation of why you are using one or the other! You are smart enough to decide what will work when, and you alone know your body best. Having a view to many more years ahead of viable mobility, whether walking or in chair, will help you make wise decisions--we must manage our bodies, conserving energy and preserving joints and tendons especially. In planning exercise/physical therapy, include upper body workout and stretching. Your physiatrist can help you design a program, or refer you to someone who is able to.

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Knight
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Finally, A Real Diagnosis! Dec 27, 2014 15:32:41 GMT -8 via Inspired Mobile

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Post by Knight on Dec 27, 2014 15:32:41 GMT -8

Dec 26, 2014 0:29:34 GMT -8 wavewolf said:

Dec 24, 2014 20:30:31 GMT -8 Knight said:

I got overly frustrated when he told me I "need to start walking" again. It felt like, regardless of how much pain and hypersensitivity I have, I'm going to be FORCED to walk. I feel like once I start down that path, I'm going to feel like I am not allowed to use my wheelchair anymore, which is totally not the case. To clarify: I think once people see me using a walker and braces, they will look at me like a failure when I use my wheelchair. I'm also nervous and a bit scared to start exercising in case I am not able to get my left leg to function again? That's going to hit me so hard if it happens.

He is likely trying to help you maintain and build what strength and control you have, but not at the cost of over-exertion or a fall. Using the right tool for the right time and task is key. You owe no one an explanation of why you are using one or the other! You are smart enough to decide what will work when, and you alone know your body best. Having a view to many more years ahead of viable mobility, whether walking or in chair, will help you make wise decisions--we must manage our bodies, conserving energy and preserving joints and tendons especially. In planning exercise/physical therapy, include upper body workout and stretching. Your physiatrist can help you design a program, or refer you to someone who is able to.

I am trying to get back in with my physical therapist, but I'm sure that won't happen until the new year. My problem is that I know I will have to use my AFOs if I am supposed to walk more, and my hypersensitivity is WAY too bad to even think about putting hunks of plastic over my most bony areas. I touch my ankle and it feels like I broke it! I'm not sure where I am supposed to go from here.

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wavewolf
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Finally, A Real Diagnosis! Dec 27, 2014 22:58:36 GMT -8

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Post by wavewolf on Dec 27, 2014 22:58:36 GMT -8

Dec 27, 2014 15:32:41 GMT -8 Knight said:

Dec 26, 2014 0:29:34 GMT -8 wavewolf said:

He is likely trying to help you maintain and build what strength and control you have, but not at the cost of over-exertion or a fall. Using the right tool for the right time and task is key. You owe no one an explanation of why you are using one or the other! You are smart enough to decide what will work when, and you alone know your body best. Having a view to many more years ahead of viable mobility, whether walking or in chair, will help you make wise decisions--we must manage our bodies, conserving energy and preserving joints and tendons especially. In planning exercise/physical therapy, include upper body workout and stretching. Your physiatrist can help you design a program, or refer you to someone who is able to.

I am trying to get back in with my physical therapist, but I'm sure that won't happen until the new year. My problem is that I know I will have to use my AFOs if I am supposed to walk more, and my hypersensitivity is WAY too bad to even think about putting hunks of plastic over my most bony areas. I touch my ankle and it feels like I broke it! I'm not sure where I am supposed to go from here.

I also have that hypersensitivity, so I can appreciate what you are saying. Not all AFOs touch you in ways that hurt. This is what I wear, and I have not had issues with hypersensitivity. My shin area is very sensitive to light touch, feels as if hot iron is running over leg, but I hardly notice I am wearing these AFOs. trulife.com/all-products/orthotics/ankle-foot-orthoses/carbon-composite-afo/matrix-supermax

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kilg0retr0ut Advanced Member Posts: 2,507 Post Likes Received: 1,862 Date Joined: July 2013 Injury: L4/5 Cauda Equina Date Injured: 7-15-10 Member is: Offline Send PM	Finally, A Real Diagnosis! Dec 28, 2014 10:41:48 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by kilg0retr0ut on Dec 28, 2014 10:41:48 GMT -8 Wavewolf's post was on the money Knight. You have to keep any muscle you have strong, it's what keeping you together and will relieve pain. You have a lot of determination knight, give it a try. The chair will always be there.
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DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	Finally, A Real Diagnosis! Dec 28, 2014 19:42:38 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Dec 28, 2014 19:42:38 GMT -8 Well said wavewolf & kilg0retr0ut! Knight, once you figure something out that works for you and is comfortable, you won't regret it.
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Knight
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Finally, A Real Diagnosis! Jan 1, 2015 4:29:23 GMT -8

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Post by Knight on Jan 1, 2015 4:29:23 GMT -8

Dec 28, 2014 19:42:38 GMT -8 DJ said:

Well said wavewolf & kilg0retr0ut! Knight, once you figure something out that works for you and is comfortable, you won't regret it.

I hope to figure something out soon. I will be glad when the darn holidays are finally over and I can get stuff done again!

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Finally, A Real Diagnosis!

Post by Knight on Dec 22, 2014 20:08:16 GMT -8

Post by wavewolf on Dec 23, 2014 23:05:05 GMT -8

Post by Knight on Dec 24, 2014 12:13:40 GMT -8

Post by DJ on Dec 24, 2014 14:37:00 GMT -8

Post by Knight on Dec 24, 2014 20:30:31 GMT -8

Post by truwrecks on Dec 25, 2014 0:45:38 GMT -8

Post by DJ on Dec 25, 2014 6:31:33 GMT -8

Post by wavewolf on Dec 26, 2014 0:29:34 GMT -8

Post by Knight on Dec 27, 2014 15:32:41 GMT -8

Post by wavewolf on Dec 27, 2014 22:58:36 GMT -8

Post by kilg0retr0ut on Dec 28, 2014 10:41:48 GMT -8

Post by DJ on Dec 28, 2014 19:42:38 GMT -8

Post by Knight on Jan 1, 2015 4:29:23 GMT -8

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