Inspired Spinal Cord Injury Support Forum

jackstraw
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C6 incomplete - losing feeling in feet 12mths after injury Nov 6, 2020 9:37:57 GMT -8

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Post by jackstraw on Nov 6, 2020 9:37:57 GMT -8

I was involved in a motorcycle accident in Mar 19 and suffered a C5/C6 fracture with spondylolisthesis and an SCI (C6 incomplete)

I initially had very little use of my hands but with a lot of physio and support I am now up to about 80% use of my hands.

For the first 12 months I had complete feeling in both feet but it is changing. I first noticed a loss of sensation in the toes of both feet about 6 months ago (Accident +12 months) and it is gradually getting worse. It has now spread to my upper feet, soles and I am starting to lose sensation in my ankles. The loss is not absolute, I still have feeling in them but there is definitely something not right. It almost feels as if I have something in my shoes that I am walking on. It is not painful at all. I can still pass a sharp dull test but not a proprioception test

The neurosurgeon seems unconcerned - essentially saying as it is not my hands then it is not due to C6 SCI and therefore not a problem. I am on the routine list for an MRI but due to COVID there is quite a wait

My questions which I am hoping someone can help me with are - has anyone else with an incomplete SCI experienced changing symptoms 12 months after their injury and has anyone with C6 incomplete lost feeling in their feet?

Many thanks
Jack

airohs Member Posts: 152 Post Likes Received: 136 Date Joined: August 2013 Injury: C4 / 5 Incomplete Tetraplegic Date Injured: May 23 1999 Member is: Offline Send PM	C6 incomplete - losing feeling in feet 12mths after injury Nov 7, 2020 11:51:50 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by airohs on Nov 7, 2020 11:51:50 GMT -8 to answer your Q yes. And i suggest get a new nuerosurgeon.
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vintage Advanced Member Posts: 2,576 Post Likes Received: 1,757 Date Joined: November 2016 Injury: T9 incomplete Date Injured: March 15, 2014 Member is: Offline Send PM	C6 incomplete - losing feeling in feet 12mths after injury Nov 7, 2020 21:17:38 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by vintage on Nov 7, 2020 21:17:38 GMT -8 I agree with airohs. So sorry, jackstraw.

jackstraw New Member Posts: 7 Post Likes Received: 3 Date Joined: June 2020 Injury: C6 Incomplete (ASIA D - Walking) Member is: Offline Send PM	C6 incomplete - losing feeling in feet 12mths after injury Nov 9, 2020 4:17:34 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by jackstraw on Nov 9, 2020 4:17:34 GMT -8 Thanks for your replies. You've confirmed what I thought, I'll get on the phone and make myself a PIA until the MRI/EMG scans happen All the best Jack
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tetra
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C6 incomplete - losing feeling in feet 12mths after injury Nov 9, 2020 11:06:42 GMT -8

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Post by tetra on Nov 9, 2020 11:06:42 GMT -8

While it is probably not useful to call your neurosurgeon an idiot to his face, that is what he is. Of course the loss is due to your SCI, uses something late in your spine has slipped, which he should be concerned about.

I step in the water, but the water has moved on...

jackstraw New Member Posts: 7 Post Likes Received: 3 Date Joined: June 2020 Injury: C6 Incomplete (ASIA D - Walking) Member is: Offline Send PM	C6 incomplete - losing feeling in feet 12mths after injury Nov 11, 2020 8:55:56 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by jackstraw on Nov 11, 2020 8:55:56 GMT -8 Good news, I had an outpatients appt with my orthopaedic surgeon who has booked me in for an MRI and a EMG.
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jackstraw New Member Posts: 7 Post Likes Received: 3 Date Joined: June 2020 Injury: C6 Incomplete (ASIA D - Walking) Member is: Offline Send PM	C6 incomplete - losing feeling in feet 12mths after injury May 27, 2021 5:08:25 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by jackstraw on May 27, 2021 5:08:25 GMT -8 MRI full spine proved negative - which is good news. EMG showed some issues so referred to see Neurologist, fully booked so appt not until August. Symptoms continuing. Be glad to get this resolved

tetra
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C6 incomplete - losing feeling in feet 12mths after injury May 28, 2021 21:01:48 GMT -8

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Post by tetra on May 28, 2021 21:01:48 GMT -8

May 27, 2021 5:08:25 GMT -8 jackstraw said:

MRI full spine proved negative - which is good news. EMG showed some issues so referred to see Neurologist, fully booked so appt not until August. Symptoms continuing. Be glad to get this resolved

i'm glad to hear things are moving. for you.

I step in the water, but the water has moved on...

wavewolf
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C6 incomplete - losing feeling in feet 12mths after injury Sept 8, 2021 21:04:50 GMT -8

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Post by wavewolf on Sept 8, 2021 21:04:50 GMT -8

When I first had my paralysis from acute disease event, I had no feeling from the waist down. No feeling in feet by pin prick or any other stimulation. After much PT and continued effort at improving function by figuring out new options to try with safety first in mind, one day I awakened and lowered my feet to the floor and thought, "Something is different, in a good way!" I did not regain true sensation, but could tell when my feet landed rather than feeling like a floating torso. This occurred about 4 years after sudden onset of initial incomplete paralysis, functionally T9. Now I am 12 years past and I am losing this bit of sensory input, and it is affecting my mobility negatively. Throughout those intervening 8 years there has been some variability of sensation and function. Moral of the story: neuro things are really hard to figure out because of all the variables, but having doctors that care and will utilize what tools are available to give you best outcome is certainly a priority you can choose! I wish you well as you go forward.

Hoea ra!

ray
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C6 incomplete - losing feeling in feet 12mths after injury Sept 10, 2021 19:05:52 GMT -8

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Post by ray on Sept 10, 2021 19:05:52 GMT -8

Yes, variability is the only constant.

My injury is C5 incomplete, and I am a walker. When I start having foot issues, I try to determine first if it is a foot issue or a neck issue.

If I notice more fluid build up in the feet, this is an indication that I need to return to the pressure socks (which I hate, mostly because I feel like i'm cooking in them). When fluid build up is not an issue, my feet are at their best.

If no issues are going on in the feet, time to go high. I found that (and especially the first 5 years post injury) sleeping position had a huge huge impact. In the worse case, I'd wake up in the middle of the night with complete loss of function in my lower arms. Changing position always resolved this within 5 to 10 minutes so that was a clue that I was doing something wrong. That sent me down a path of shopping for a good mattress and pillow combination, which was a big help in reducing (and eventually eliminating) that particular issue. I don't see as dramatic a result in changing sleeping position relative to foot issues in that they don't resolve so dramatically or rapidly, but the foot episodes are less frequent and have a lower amplitude with the change in bed and pillow.

wavewolf
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C6 incomplete - losing feeling in feet 12mths after injury Sept 10, 2021 21:13:48 GMT -8

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Post by wavewolf on Sept 10, 2021 21:13:48 GMT -8

Sept 10, 2021 19:05:52 GMT -8 ray said:

Yes, variability is the only constant.

My injury is C5 incomplete, and I am a walker. When I start having foot issues, I try to determine first if it is a foot issue or a neck issue.

If I notice more fluid build up in the feet, this is an indication that I need to return to the pressure socks (which I hate, mostly because I feel like i'm cooking in them). When fluid build up is not an issue, my feet are at their best.

If no issues are going on in the feet, time to go high. I found that (and especially the first 5 years post injury) sleeping position had a huge huge impact. In the worse case, I'd wake up in the middle of the night with complete loss of function in my lower arms. Changing position always resolved this within 5 to 10 minutes so that was a clue that I was doing something wrong. That sent me down a path of shopping for a good mattress and pillow combination, which was a big help in reducing (and eventually eliminating) that particular issue. I don't see as dramatic a result in changing sleeping position relative to foot issues in that they don't resolve so dramatically or rapidly, but the foot episodes are less frequent and have a lower amplitude with the change in bed and pillow.

What you write makes good sense! Fluid build-up in feet is probably lymphedema, and is quite treatable although usually an ongoing issue. If you can raise legs for a bit, it helps, even as you sleep. I have found excellent products at ameswalker.com. One is the Lounge Doctor--weird name, but most effective leg-raising solution I have found, worth the expense. Their brand of compression hose and socks are more comfortable to me than any other, good value, and wear like iron. Because cooking in compression garments was also a troubling issue for me, I wear the sheer hose and then sweat absorbing sport socks over them. Sheer hose is cool in summer and warm enough in winter with socks. The customer service is great at this company, and they really help you choose from a huge selection of products what will work best for your situation. Hope this is helpful info for you.

BTW, lol at your German motto!

Hoea ra!

ray
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C6 incomplete - losing feeling in feet 12mths after injury Sept 11, 2021 18:36:07 GMT -8

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Post by ray on Sept 11, 2021 18:36:07 GMT -8

Sept 10, 2021 21:13:48 GMT -8 wavewolf said:

Sept 10, 2021 19:05:52 GMT -8 ray said:

Yes, variability is the only constant.

My injury is C5 incomplete, and I am a walker. When I start having foot issues, I try to determine first if it is a foot issue or a neck issue.

If I notice more fluid build up in the feet, this is an indication that I need to return to the pressure socks (which I hate, mostly because I feel like i'm cooking in them). When fluid build up is not an issue, my feet are at their best.

If no issues are going on in the feet, time to go high. I found that (and especially the first 5 years post injury) sleeping position had a huge huge impact. In the worse case, I'd wake up in the middle of the night with complete loss of function in my lower arms. Changing position always resolved this within 5 to 10 minutes so that was a clue that I was doing something wrong. That sent me down a path of shopping for a good mattress and pillow combination, which was a big help in reducing (and eventually eliminating) that particular issue. I don't see as dramatic a result in changing sleeping position relative to foot issues in that they don't resolve so dramatically or rapidly, but the foot episodes are less frequent and have a lower amplitude with the change in bed and pillow.

What you write makes good sense! Fluid build-up in feet is probably lymphedema, and is quite treatable although usually an ongoing issue. If you can raise legs for a bit, it helps, even as you sleep. I have found excellent products at ameswalker.com. One is the Lounge Doctor--weird name, but most effective leg-raising solution I have found, worth the expense. Their brand of compression hose and socks are more comfortable to me than any other, good value, and wear like iron. Because cooking in compression garments was also a troubling issue for me, I wear the sheer hose and then sweat absorbing sport socks over them. Sheer hose is cool in summer and warm enough in winter with socks. The customer service is great at this company, and they really help you choose from a huge selection of products what will work best for your situation. Hope this is helpful info for you.

BTW, lol at your German motto!

Thanks for the leg raising tip. I have tried that on particularly bad nights with a pillow but usually don't get good sleep with it. I'll check out the ameswalker.com. Thanks!

Glad you enjoyed the German!!!! It was a very important milestone in recovery and needed to be celebrated!!!

UPDATED: That Lounge Doctor looks GREAT!!! Thanks again!

Ray

wavewolf
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C6 incomplete - losing feeling in feet 12mths after injury Sept 11, 2021 20:30:01 GMT -8

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Post by wavewolf on Sept 11, 2021 20:30:01 GMT -8

Sept 11, 2021 18:36:07 GMT -8 ray said:

Thanks for the leg raising tip. I have tried that on particularly bad nights with a pillow but usually don't get good sleep with it. I'll check out the ameswalker.com. Thanks!

Glad you enjoyed the German!!!! It was a very important milestone in recovery and needed to be celebrated!!!
ray , A friend of mine actually does sleep through the night using the Lounge Doctor--the angle is perfect compared to any pillow combination I have concocted over the years. I use mine during a half hour break to rest my skin because of using wheelchair, and find that even this short stretch really makes a difference in foot comfort. Seems to work best on flat surface with head slightly raised on a small pillow, or support just under neck at least. I know guys don't normally wear sheer compression hose, but if you are wearing long pants and socks, who would know?! Ames-Walker customer service people can advise well on sizing or alternatives.

Yes, a milestone to celebrate...mit einem Bierkrug, für wiederholte Feiern!

Hoea ra!

ray
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C6 incomplete - losing feeling in feet 12mths after injury Sept 12, 2021 9:05:43 GMT -8

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Post by ray on Sept 12, 2021 9:05:43 GMT -8

Sept 11, 2021 20:30:01 GMT -8 wavewolf said:

Sept 11, 2021 18:36:07 GMT -8 ray said:

Thanks for the leg raising tip. I have tried that on particularly bad nights with a pillow but usually don't get good sleep with it. I'll check out the ameswalker.com. Thanks!

Glad you enjoyed the German!!!! It was a very important milestone in recovery and needed to be celebrated!!!
ray , A friend of mine actually does sleep through the night using the Lounge Doctor--the angle is perfect compared to any pillow combination I have concocted over the years. I use mine during a half hour break to rest my skin because of using wheelchair, and find that even this short stretch really makes a difference in foot comfort. Seems to work best on flat surface with head slightly raised on a small pillow, or support just under neck at least. I know guys don't normally wear sheer compression hose, but if you are wearing long pants and socks, who would know?! Ames-Walker customer service people can advise well on sizing or alternatives.

Yes, a milestone to celebrate...mit einem Bierkrug, für wiederholte Feiern!

Just placed an order!

Still laughing about getting busted on the motto...

Thanks!

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ray
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C6 incomplete - losing feeling in feet 12mths after injury Sept 20, 2021 19:08:09 GMT -8

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Post by ray on Sept 20, 2021 19:08:09 GMT -8

Sept 11, 2021 20:30:01 GMT -8 wavewolf said:

Sept 11, 2021 18:36:07 GMT -8 ray said:

Thanks for the leg raising tip. I have tried that on particularly bad nights with a pillow but usually don't get good sleep with it. I'll check out the ameswalker.com. Thanks!

Glad you enjoyed the German!!!! It was a very important milestone in recovery and needed to be celebrated!!!
ray , A friend of mine actually does sleep through the night using the Lounge Doctor--the angle is perfect compared to any pillow combination I have concocted over the years. I use mine during a half hour break to rest my skin because of using wheelchair, and find that even this short stretch really makes a difference in foot comfort. Seems to work best on flat surface with head slightly raised on a small pillow, or support just under neck at least. I know guys don't normally wear sheer compression hose, but if you are wearing long pants and socks, who would know?! Ames-Walker customer service people can advise well on sizing or alternatives.

Yes, a milestone to celebrate...mit einem Bierkrug, für wiederholte Feiern!

The Lounge Doctor arrived today, and all I can say is WOW! I tried it out this evening and the rate of loss of fluid build up in my left foot (my less recovered side that has more symptoms) is nothing short of astounding! Thanks much!!!!!

wavewolf likes this

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C6 incomplete - losing feeling in feet 12mths after injury

Post by jackstraw on Nov 6, 2020 9:37:57 GMT -8

Post by airohs on Nov 7, 2020 11:51:50 GMT -8

Post by vintage on Nov 7, 2020 21:17:38 GMT -8

Post by jackstraw on Nov 9, 2020 4:17:34 GMT -8

Post by tetra on Nov 9, 2020 11:06:42 GMT -8

Post by jackstraw on Nov 11, 2020 8:55:56 GMT -8

Post by jackstraw on May 27, 2021 5:08:25 GMT -8

Post by tetra on May 28, 2021 21:01:48 GMT -8

Post by wavewolf on Sept 8, 2021 21:04:50 GMT -8

Post by ray on Sept 10, 2021 19:05:52 GMT -8

Post by wavewolf on Sept 10, 2021 21:13:48 GMT -8

Post by ray on Sept 11, 2021 18:36:07 GMT -8

Post by wavewolf on Sept 11, 2021 20:30:01 GMT -8

Post by ray on Sept 12, 2021 9:05:43 GMT -8

Post by ray on Sept 20, 2021 19:08:09 GMT -8

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