7 replies to this topic

[juli]

my husband was injured in a car accident in june, c4 c5 . I am suffering from information overload. never did I think that sci involved so many different areas of the body. needless to say its been the most difficult thing this family has been through. I feel the need to know everything but then it scares the hell out of me when i find out. scott has already come farther than the doctors told me at first. he has movement in both arms( no fingers or wrists) and regaining strength every day. my question is , why is he still in severe pain at least 3 or 4 days a week. his pain is in his neck and shoulders and it causes spasms in his face and neck as a reaction to the pain. he is still on some very heavy narc. he has the doctors stumped. anyone else dealing with this? i cant stand to see him hurt.

[javaftper]

unfortunately long-term chronic pain is not uncommon following SCI.
i am a similar level and have chronic neuropathic pain. I'm 3 years post injury and although my pain has not subsided i have found new ways of dealing/reducing it.
firstly keep talking to the doctors/consultants and if possible get referred to a pain specialist. there are lots of different pain killers and combinations of pain killers that work differently. i would suggest keeping a pain diary.
if shoulders and neck are particularly bad you could try wheat bag warmers which you heat in the microwave-they help me.
hot showers and baths.
massage with warming massage oils or joint warming creams.
keep as active and busy as possible.
use this forum and others like it.
remain positive- there will be good days and bad. Longterm there is lots of research going on that may help. i've found that it gets easier to handle with time.
good luck

[juli]

javaftper, on 26 February 2011 - 03:00 PM, said:

unfortunately long-term chronic pain is not uncommon following SCI.
i am a similar level and have chronic neuropathic pain. I'm 3 years post injury and although my pain has not subsided i have found new ways of dealing/reducing it.
firstly keep talking to the doctors/consultants and if possible get referred to a pain specialist. there are lots of different pain killers and combinations of pain killers that work differently. i would suggest keeping a pain diary.
if shoulders and neck are particularly bad you could try wheat bag warmers which you heat in the microwave-they help me.
hot showers and baths.
massage with warming massage oils or joint warming creams.
keep as active and busy as possible.
use this forum and others like it.
remain positive- there will be good days and bad. Longterm there is lots of research going on that may help. i've found that it gets easier to handle with time.
good luck

thanks, all this is so new to us.

[Snakeye]

javaftper, on 26 February 2011 - 03:00 PM, said:

unfortunately long-term chronic pain is not uncommon following SCI.
i am a similar level and have chronic neuropathic pain. I'm 3 years post injury and although my pain has not subsided i have found new ways of dealing/reducing it.
firstly keep talking to the doctors/consultants and if possible get referred to a pain specialist. there are lots of different pain killers and combinations of pain killers that work differently. i would suggest keeping a pain diary.
if shoulders and neck are particularly bad you could try wheat bag warmers which you heat in the microwave-they help me.
hot showers and baths.
massage with warming massage oils or joint warming creams.
keep as active and busy as possible.
use this forum and others like it.
remain positive- there will be good days and bad. Longterm there is lots of research going on that may help. i've found that it gets easier to handle with time.
good luck

Excellent advice...You hit the nail on the head there.....

[Scott_C4-5]

I had my first pain in my left inner elbow 2 weeks into my injury and everyone thought it was positive news. The pain is now in the whole left arm and sometimes all the way down my sciatic nerve. Its a daily pain that can be caused by light touch on my head, neck, shoulder or arm and when I lay on my left side for any length of time. I've tried all types of medications and had cat-scans, mri's, and myelogram with no concrete reason for the pain. It is bad enough sometimes that it takes my breath away and feel faint, which oddly helps when my brain gets all tingly. It has been 20 years and change now and all I can say he may have to get use to "not getting use to it." That is, unless they come out with something new for chronic nerve pain. Anyways, good luck and I hope it subsides.

Oh, one thing that helps is constantly keeping the mind active. If I keep changing the channels in my brain, I sometimes tune it out. Luckily I'm A.D.D. so my channels rarely stay on one channel for more than 10 minutes.

[tarryn]

Hi Juli
I agree with all previous posts about a contacting a pain clinic, fiddling with pain meds etc.
I have noticed with my patients with a high level of injury, especially when they are incomplete, they tend to use every muscle they can to perform movements. This usually involves mostly the muscles of the neck as these tend to work better than others. Overuse of the neck muscles can cause muscle spasm that may lead to pain, especially over along period. Watch your hubby for this. He may need to refocus his movements and muscles that he uses or muscle relaxing methods (such as using the heat pack and massages) may help.
Best wishes
T

[Jeanette]

My injury started oct 2007 in a car accident when I was rear ended the disc atc6/7 was touching the spinal cord. But stupid doctors said nothing was wrong MRI also showed nerve impingement at c6/7
Fast forward to march 2010 I was able to do 45 min exercise on Wii sports
Fast forward to May 5 2010 stupid uninsured driver put his car into reverse and rammed us . I immediately knew something was wrong in my neck I could not move I had immediate tingling in both hands. Hospital doctor took c spine xray but did not check out m neck or the rest of me and I was sent home
Fastforward to rehab doctor on lawyer lean ordered MRI
My spinal cord at c6-7 was flattened severely it looked like a flat heart. My neurologist said I had a moderate incomplete SCI and if I fell wrong I would end up like Christopher Reeves.

It took until September to get the operation to take the compression of my spinal cord. So for 5 months I had the compression on m spine.

I understand I have an incomplete injury. The problem I am having is that the doctors I have seen tell me my c spine injury has nothing to so with.
Y mid back going numb or the spasticity in my legs. Evener in with the c5-7 fusion surgery I still have the injury.
I currently dealing with spacistity, nerve pain all over, numbness and m hands are having bouts of paralysis with severe pain coming down m arm to the inside of m wrist
This happened 8 times in last two weeks
My left leg gives out on me it starts with a horrible stabbing pain in m thigh this is the same pain I had before the surgery but it has gotten 100 times worse.
I am now in a wheelchair any time I go anywhere. I can't even walk out to the car without the wheelchair with someone pushing me. I can't use my arms because my left arm is vey weak and my shoulders are both injured.
On march 25 my leg completely gave out and I ended up in the ER all they did was give me two pain shots and told me he the doctor thought I had nerve pinched but it was hard to get an MRI in the middle of the night,
M leg is giving out on regular basis now
Y primary doctor said well some people have their nerves tell them they are In more pain. The best we can do is control the pain with medication physical therapy and such
I had first epidural In lower back a week ago. It didn't help

The neurologist said I'm nnot having radiating pain in my arms or legs so I am fine
The doctors have really forgotten that my spinal cord was severely compressed for five months with myeleopathy which is another way of saying spinal cord injury.
How do I get the doctors to see the whole me with everything together rather than bits and pieces or me?


Who is considered a SCI specialist
How do I get m doctors send me to a specialist?
I know it's lots of questions but there has to be something I can do to stop y leg from giving out. And keeping y hands from curling up and paralized for up to 40 minutes.

Help me please
I am in Los Angeles. If you know specialist around me please help
Jeanette

[Tetracyclone]

You have to confidently demand an SCI specialist. All your symptoms are classic, so just trust yourself. It may help to take a friend or family member with you to act as a support person.