"overuse injury" in SCI?, Wise, others?

[fuentejps]

work your ass off, stay big, stay strong.

im inc c4/5, 21 years post. im ind and always have pushed a manual and always will.

im a firm believer in chemical help to stay strong as we age w/ sci.

[Eileen]

Tiger, you're right, it wasn't you........oops.

fuentejps, I hope you are right, but I did mention that I had pushed a chair for over thirty years. In another ten you might have a different opinion, or be forced into one. I hope not, but never say never.....

[Lynne]

I'm still hoping to hear from Dr. Young concerning the "overuse injury" aspect of this. Is there that effect in long term SCI's, as in post-polio where the neurons (if that's correct) are somehow damaged or "used up" with hard pushing therapy particularly after a decline in function? Can you help us to understand if we should be concerned about overusing, thus losing function? I don't mean injured shoulders from pushing. I'm asking about a neuro thing happening. Dr Young? Thank you in advance for any light you can shed here! Lynne

[woman from Europe]

I'm still hoping to hear from Dr. Young concerning the "overuse injury" aspect of this. Is there that effect in long term SCI's, as in post-polio where the neurons (if that's correct) are somehow damaged or "used up" with hard pushing therapy particularly after a decline in function? Can you help us to understand if we should be concerned about overusing, thus losing function? I don't mean injured shoulders from pushing. I'm asking about a neuro thing happening. Dr Young? Thank you in advance for any light you can shed here! Lynne

I don't think dr Young are going to answer this. But I have taken tests, I don't know the English names, but I know my neurons and my fibrons are damaged. If you know that test were you put needles inside your muscles to see the way the neurons are working. My fibres is 12 time bigger from the knees and down and 6 times bigger than normal in the tights. And no neurons left. So I lost my ability to walk a year ago and only a few weeks ago I lost my ability to stand and the lasts week I can't move my left leg in the morning and some hours early in the day. Eileen and I have discussed it and I have discussed it with some others, more than 30 years post, that have lost the ability of walking.

I am a low para so I don't know anything of the upper body neurons except what Eileen has told me and a man I met at rehab here in Norway.

Tiger - I am going to take a new MRI because the two last ones I have taken show something in the lower spine. They only forgot to tell me. Since my injury is atraumatic, they have never seen anything wrong in my spine before but they had got a new MRI machine the last two times and after I have taken the new one, a neurosurgion is going to look at the pictures. Maybe it is something old or maybe a syrinx, I do not know.

[canuck]

This is a trend they are starting to see with people who have been injured long term be it from SCI, Spina Bifida, CP or what have you, people losing function & energy. I'll post links later tonight.

[Eileen]

WFE, Sorry to hear of your continued loss of function, and I hope this new test you are going to take might show something that can be treated. I don't think Dr. Young is going to get involved in this discussion either, but we both know our own experiences after so many decades. I don't know if this expression means anything to you in Norway, so I will explain it instead of just writing it out. A long time ago in this country they use to bring canaries into coal mines to know if the air quality was OK for the miners. If the canarie blacked out or died they knew the miners had to get out of the mine quickly or risk the same fate. I feel like those of us who have such long standing disabilities are a little like the canary in the mine. We are telling people our experience and no one wants to fully believe it will ever happen to them, either because of denial, fear, or a belief that they are somehow stronger and more determined. I find this a little sad, and also a little insulting, but also understandable. But we know what we know, and while I wish it wasn't true, I have watched my function decline quickly over the last two years or so. Wishing you well.

[betheny]

Great post Eileen, I'm a C5/6 thirty years post and still have shoulders like a bull elephant but they are becoming a little rounded and my head is starting to hang forward.

My other problem is that my lower jaw is receding (my dentist puts it down to the position of my head) chewing is not a problem but it's bloody annoying to bite through the bread of a bacon sandwich but leaving the bacon rasher intact and if you're not careful in your lap!

Has anybody else developed the undershot bottom jaw syndrome?

Holy crap, I just tested my bite in my usual bad posture, then again with all held straight and high...and they're different! My jaw is back further in the bad posture! (I have the posture of someone whose head was hung over a book since age 4. Mom claims I was around, I learned to read, she saw me occasionally thereafter.)

[woman from Europe]

I know the story of the canary birds in the mines.

One of the reasons I want to tell the people here about the post 30 years, is because I don't want anybody else to experience it. It is importent to know. Instead I feel that the people want to be ignorent about it. They don't want to listen and I understand that they are getting afraid. But they have to understand that we have not done anything wrong or been lazy. We have just done too much. I want the others coming after to take care and not overuse.

I am very curious about my new mri pictures, Even beeing 38 years post, I want to know what happened. Since we do not use the TM diagnosis here, I am in reallity without a diagnosis. The only reason I have one is because I am a typical t11/12, I am spastic, bad sensation under that level and I have a positive Babinski test.
I am sure it is as important for you to have a diagnosis than for us because without you don't get any help at all. The first 30 years I did not get any help at all, because they had lost my journal and did not believe me when I told them it was something from the spinal cord.

[Tiger Racing]

We are telling people our experience and no one wants to fully believe it will ever happen to them, either because of denial, fear, or a belief that they are somehow stronger and more determined. I find this a little sad, and also a little insulting, but also understandable.

I find this conclusion to be a bit insulting. Your experience, while valid, is merely anecdotal. It doesn't prove that everyone with a similar injury is going to experience the same thing. Five or ten other people on these boards offering similar data won't prove it either. I'm not exactly sure how large a group would need to be polled, but it would need to be broader than just those who post to a single website.

You may very well be at the forefront of a new diagnosis and I encourage you to share your experience with researchers and clinicians, but you need to remember that just because it's raining where you are doesn't mean it's raining everywhere. Out of curiosity, have you ever had surgery for a syrinx or a pressure sore?

C.

[Eileen]

Tiger, I would like to think that my life, and the life of other's I know with long term injuries is slightly more than "anecdotal," although I get what you mean in terms of a statistical n. I also never said or implied that everyone would have problems, as there is no way anyone could know that. All I have said is to exercise some caution, which seems like good advice no matter what the subject matter might be. To use your analogy, if the clouds get really dark, it might not be such a bad idea to take an umbrella with you......

[Wise Young]

A few years ago after a rather sudden decrease in strength with no discernable cause , a physiatrist at Mayo Clinic, Jacksonville cautioned my PT's to use a more "measured approach" to my therapy. I was trying KAFO's, using weights, etc. at that time. He felt I was pushing too hard. Some of the docs there at the time used the phrase post-polio syndrome type thing in patients many yrs. post SCI injury. Anybody heard about anything like this in SCI? Dr Wise? I'm again working hard with another therapist. I was told at Mayo to "save my arms", but this PT has me out in the grass "fighting along" to hopefully get stronger. Am I hurting myself by doing this? I'm still in a manual chair after 24 yrs. and hope to continue, but don't want to "use up" what I have. I'd forgotten the advice from Mayo until yesterday when I was really fatigued after PT. I haven't talked to this PT about the Mayo recommendations because I want to work hard. Thanks for any insight. I'll hope to hear from Dr Wise.

Lynne, sorry that I didn't see this earlier. Mike C. just prompted me.

There has been much speculation that there may be a "post-injury" loss of function in spinal cord injury that would be similar to post-polio syndrome. One of my most respected colleagues, Dr. John Ditunno, at Jefferson Medical School mentioned to me that some patients may lose function as they age but he did not think that there is strong evidence for a post-polio-like syndrome in spinal cord injury.

Post-polio syndrome has been attributed to overuse. There is indeed some evidence that suggest that motoneurons may be more likely to die if they have been injured and then are overstimulated by glutamate. So, the cardinal features of a post-polio-like syndrome should be:

• It should involve a part of your spinal cord where motoneurons may have been damaged, i.e. if you have spinal cord injury at C4/5 and then recovered by now you are losing function at C6 or C7.
• It is associated with motoneuronal loss which should be manifested by the presence of muscle atrophy. If possible, it would be good to document muscle atrophy with needle electromyography. Muscles undergoing atrophy tend to become hyperexitable and this can be seen with an EMG.
• It should be motor and not sensory.

The possibility of a spinal root or peripheral nerve injury should be ruled out. Several studies suggest that a peripheral nerve problem is the most frequent cause of functional loss of patients with spinal cord injury, particularly in the arms. In general, if it is a peripheral nerve problem, it should show up as both motor and sensory loss, with the sensory loss distributed according to the nerve. It it is a root problem, it should also show up a both motor and sensory loss, with the sensory loss distributed accordig to the dermatome of the root.

A careful neurological examination, supplemented possibly by EMG and confirmed by MRI evidence of either root or nerve compression, should give you the answer. One of the reasons why you want to find out is in case there is something that can be done to decompress and restore the function.

Finally, I don't know whether there is an "overuse" syndrome in spinal cord injury. So, I decided to do a literature search. Many papers reported pain as the most common symptom of shoulder "overuse" by wheelchair users. We know that that overuse of the shoulders will result in bone, tendon, and joint problems with associated pain. An exhaustive search of the medical literature did not reveal any study indicating loss of neurological function associated with "overuse". This doesn't mean that it doesn't exist, only that it is not recognized as a problem.

Wise.

[canuck]

Aging with disability papers & links are as follows:

Klingbeil H, et al. "Aging With Disability" Archives of Physical Medicine Rehab: 85(suppl 3) S68-73

Kraus JS & Croker JL. "Aging after spinal cord injury: a 30 year longitudal study." J. Spinal Cord Med. 2006; 29(4): 371-6

Amsters Delena I, et al "Long duration spinal cord injury: perceptions of functional changes over time". Dis and Rehabil, 2005 27(9): 489-97

Charlifue S. "Aging with Spinal Cord Injury: factors associated with the need for more help with activities of daily living". Arch Phys Med Rehabil. 85(2004) pps 1848-1853

Aging with disability website agingwithdisability.org

Sorry it took a couple days to get this info up

[Lynne]

Thank you, Dr. Young, for sharing your insight and for doing this research for us! I really appreciate the time you took to respond. I'm sure all of the factors you mention were not, and have not been considered in evaluating my problems. Perhaps, in time, more study will be done in this area. Having said that, I've not yet read the articles canuck has referenced. The titles alone are very interesting. Thanks, canuck! I'm also grateful to woman from Europe and Eileen for sharing their first hand accounts of living with this puzzling complication. Thanks to all, Lynne