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Recent Complete C4 SCI

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    Recent Complete C4 SCI

    My name is Susan and my husband Les suffered a C4 complete SCI on July 16/08. He was just released from Rehab on Feb. 26th.
    He still has a lot of pain which his doctor refuses to help with. Whenever he complains, her response is to cut his pain meds yet again. He also has chronic UTI and doesn't go more than a week between infections. He feels "unwell" most of the time. They released him from Rehab without having a family doctor and told him not to come back to see the "spinal cord doctor" until his scheduled follow-up appointment at the end of May.
    He is unable to come home because of the space he requires. We rent and cannot modify the house to accomodate his needs. His injury was due to a fall from a bicycle and there is no insurance coverage of any kind. We had to "separate" so that he could qualify for social assistance as there is no way to afford all the things he needs. I work full time and have 2 kids at home (who I almost never see as I am always taking care of Les). His (our) friends are non existant and even his so called best frient has only seen him 4 times since his accident. The only people who visit are me and his mom and it's getting really stressful! We have had no support of any kind and have no one to talk to. I spend a lot of time crying. At least when he was in the hospital (rehab) there were other patients, nurses, attendants (who spoke english) for him to talk to. Now he is in an assisted living apartment and does nothing all day but sit in the same spot alone in front of the TV. There are attendants that are in and out every 3 or 4 hours but most have very limited english and it is hard enough making them understand how to adjust him in his chair properly, let alone try to carry on any kind of conversation. I'm sorry, I have a lot of venting to do. I have never used one of these boards before, or chat room of any kind for that matter, and am not exactly sure how it works. Lets consider this a test.

    Sorry you have to deal with this. Where do you and Les live? Maybe there is a support group nearby.


      So sorry that you are having to go through all this, but this site is a wealth of information and support, so keep writing. Is it possible to eventually move into an accessible apartment. Some of them are subsidized for elderly or handicapped. Some fair market apartments are accessible. I live in a condo I bought that is accessible. Think about agencies like Visiting Nurse, Meals on Wheels, and paid attendant care if he is able to leave the assisted living place. If you give us an idea of where you live (even just the state) people might be able to come up with suggestions for you. Is he a veteran?


        Welcome to our forums. I believe you are in Manitoba, Canada, correct?

        I am hoping that some of our Canadian members can help since I am not very familiar with resources there. I hope you have been in touch with the Canadian Paraplegia Association as they can be a valuable resource for peer support and advocacy.

        In the USA you would be able to be paid to be his caregiver, or to hire private caregivers (if you had the resources) or have them paid by state programs (for low income). People with long term care insurance often have in-home caregivers paid.

        You need to find a different doctor. His pain is real, and it needs real treatment. Please tell us more about his pain (quality, location, duration, etc.). What meds is he on now (not just narcotics)? Has TENS been tried? Did they give you the name of a good pain management specialist or physiatrist to see prior to going back to the rehab center for his check-up?? Was this a CARF accredited SCI rehab program?

        Can you get him on-line? He should be able to use voice recognition software like Dragon Dictate (check out our Computer forum for more info on this). Does he have an ECU? Are his attendants live-in or is he alone at night?

        Do you have a digital camera? Taking photos of his proper wheelchair positioning, chair set up, bed positioning, splint application, etc. can be invaluable in instructing any personal care attendant (PCA) but especially those who have limited English skills.

        I hope you are actively looking for new housing so you can rent something more appropriate. Are their agencies that can help you narrow your search?

        Please complete your profile. This will help all of us know better how to help both of you.

        Keep asking questions. You may also want to post on our Caregiver's forum for yourself.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


          Thanks for the ideas

          I'm not sure where to start. As far as housing goes, we rent, need at least 4 bedrooms and we have pets. He had no insurance of any kind and was alone when he had his accident so there is no compensation there.
          I am the sole supporter now so it is really hard to find something affordable. Les is in a "Learning Through Living" program which is supposed to help him learn to live with is new abilities as normally and independently as possible. The attendants and nurses are provided through our Provincially funded health care system but only for the number of hours that the doctor says he requires. So, they come in to get him up in the morning, do personal care, give meds, cook, feed him and clean up (the cleaning part is a bit of a joke) and then he sits by himself watching TV until they come back for lunch. Cycle is repeated for dinner and bed time then they are in to turn him every 3 hours through the night. Actually he only lets them turn him once as he is not getting any sleep because he has to wake up to let them in everytime. He has a nurse in for a few minutes every morning to irrigate his indwelling foley as it gets clogged and he has chronic infections. He is also prone to AD mainly due to the foley being plugged or infection or sometime due to pain. As far as a new doctor goes, there are only two to choose from and we already switched from the first one, who is head of the Spinal Cord Injury department at the Health Sciences Centre in Winnipeg (supposedly the leading facility of it's kind in Canada). He is currently on a 100mg Fentanol patch which is changed every 3 days as well as 30mg of morphine every 3 hours as needed (not to exceed 100 mg per day) what a joke. He takes Gabapentin, Cyclogenzaprine, Baclofen, Celebrex, Omnoprazole, & Acetaminophine for spasm's & pain along with Colace, Senekot, Multi vitamin, Cranberry pills and Zopiclone. He has a great deal of neck and shoulder pain. He has a little use of his left arm (enough to operate his wheelchair with his arm resting in a saddle) but a lot of time he is too sore to be able to do even that. He is not a little guy and needs to be transfered using a hoyer or over head lift and it takes at least 2 people to do it properly (and with minimum pain) but they insist on doing it with only one so it takes a long time and causes a great deal of discomfort not to mention frustration every time he needs to be moved from his bed to his chair or vice versa.
          I could go on and on. As I said before, much venting to do.

          Oh yeah, as for CPA, they have been completely useless up until now. He has a new councellor coming to meet with him today, hopefully he has some ideas. We have not been given any information with regards to support groups or social networks even though I have been asking anyone and everyone since the first day after the accident.

          I am grateful for any advice you have.


            I can be of no help, as i live in the uS. There will be some Canadians thatwill ,I'm sure, come in here and be able to help with some suggestions.
            I'm absolutely amazed you have made it this far with as little help as you've had. You must be one strong woman.You really do need some support. SCI takes a heavy toll on loved ones trying to cope with the lifechanges. I hope you and your family get some much needed help asap. My prayers are with you and the rest of your family


              I only have a few minutes right now as I am just heading out my door but will come back to this thread later this afternoon. When it comes to the CPA I am sure they do some good things but they were of no real help to me or my family. I mention this only because if you are frustrated from dealing with them, it seems to be a pattern based from my own experience and from others I know who have sought help as well. You may need to be very assertive with the new counsellor about getting help with the most pressing needs such as housing or getting connected with a support group.

              I don't know but this might be a place to start for housing

              Edit to add: the above link was passed on to me by a friend who used to live in Winnipeg. He suggested the housing registry as the best place to begin:

              The person in charge of the housing registry is the Housing Development Coordinator, Don Ament. You can reach him at our office by phoning (204)339-9268 ext.226 or e-mail at
              Last edited by orangejello; 7 Apr 2009, 1:00 PM.


                How much Gabapentin is he on? he can take up to 3600 mg per day.Cymbalta is also an antidepressant but can help neuropathic pain.
                neuropathic pain is different and Fentanyl is not the way to go. He should try the meds for neuropathic pain and wean off the Fentanyl slowly because it really does not help neuropathic pain.

                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                  Thanks for the suggestion Orangejello.TenTen is where he is living now. The wheelchair accessible housing out there is definately not geared for families.

                  As far as the Gabapentin, he is taking 900mg tid and the problem is that he can't find a doctor and the SCI doctor refuses to change anything. They would not take the pain seriously when he was in the hospital and now that he is out they won't even talk to him.

                  He's not the type that would use street drugs so that's not even an option.

                  The other thing we are having a huge amount of trouble with is transportation. As he has no upper body support of his own, he gets thrown around in his chair when travelling in a vehicle and with the amount of pain he has in general, sometimes he is in bed for 2 days after an outing due all the bouncing around.

                  So far, there have been 3 different vehicles tried. The side loading minivan is the best as far as the ride goes but the problem is his chair is too big to turn and sit facing the front so he can only travel in that vehicle if he is sideways which is illegal under out highway traffic act. Some taxi companies do it anyway but HandiTransit can't. Rear loading vans are the next best but as he is right in line with the rear wheels, if the vehicle is not new and the suspension is a little worn it is also really hard on him. Busses (multi passenger vans) are the worst.


                    I have to agree about the fentanyl. in the long run anyway. and about the way friends dissapear. it is a sad side affect of sci. I have a couple close peeps, who dont scare easily, but for the most part friends are scarce. my life long friend, I once cared for. maybe the angels put us together so that I would know how to behave after my day came. this place is infested with giants.


                      He can take up to 3600 mg of Gabapentin. Cymbalta also helps iwth neuropathic pain and he can take it with Gabapentin.
                      Available Rehab doctor?? Pain specialist?

                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.



                        Sue, it is frustrating dealing with all this "new Stuff". Talk to someone in your area about
                        support,CPA should have been of some help. I hope things start to go better. I only know about waht things go on here in Alberta. I have found that province to province is quite different. So in that respect i don't want to steer you wrong.
                        It sounds like you do have a system in place. I know it can be hard dealing with workers who do not understand your instructions. Don't give up, keep at them until they get it right. They are basically being paid by you, so don't be afraid to step up and keep trying.
                        Your ot helpless, it just feels that way for now. I hope and pray everything will work out for you and Les.


                          I am sorry you had to join the sci club. I am surprised to hear about your experience with Man. CPA. I know CPA ONT. was a God-send to my family and I...

                          The only words of advice i can offer are:
                          - Les should drink 3 litres of WATER / day - every day
                          - The less meds he can get by with, the better
                          - Take care of / watch out for bum and feet. (presure sores)


                            Hi sue, i'm a recovering C5C6 incomplete injury, I can tell you everything your husband les is going through I went through too

                            -the insurance
                            -the doctors never listening
                            -chronic uti (s)
                            -so much neck & shoulder main
                            -nurses that could barely lift me or understand what i'm saying
                            -emotionally feeling hopeless/alone
                            -and all the doctors presribing too much medicine making you feel so sleepy & out of it

                            I can tell you as bad as it's normal for a sci neck injury.

                            My advice for les..

                            -drink lots of WATER no fruity or sugary drinks that can cause UTI S
                            -try to stretch his legs and arms that WILL help with spacity
                            -try to ween him off meds seriously he will feel alot better quicker
                            -Make sure to check his skin for redness/possible pressure sores
                            -NO antideppresants it will only make him sleepy and out of it
                            -also if he is having nerve pain no neurontin it's a heavy narcotic used to treat nerve pain, but it is shown to make people feel suicidal

                            *when he gets out of rehab/hospital you should check out it's a rehab for only sci victims using exercised based therapy to help heal

                            hope this helps.


                              Sorry to hear you haven't had much luck with the CPA in Manitoba. CPA in British Columbia and Alberta are very active. All branches of the CPA across Canada have seen funding stresses, as have many others nonprofits. The competition for donations from the public has increased with government getting out of helping nonprofits. Unfortunately for the many groups helping with SCI, they don't have a figurehead that has wheeled around the world. RHF Hoovers up a lot of the dollars available for SCI.

                              I was at a conference in Winnipeg last March and they have a very active SCI community. The Centre for Disability Studies have some very good resources in their office. Check them out.