Page 1 of 2 12 LastLast
Results 1 to 10 of 18

Thread: Recent Complete C4 SCI

  1. #1
    Junior Member
    Join Date
    Apr 2009
    Location
    Manitoba, Canada
    Posts
    3

    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.

  2. #2
    Senior Member
    Join Date
    Aug 2001
    Location
    Pennsylvania
    Posts
    401
    Sorry you have to deal with this. Where do you and Les live? Maybe there is a support group nearby.

  3. #3
    Senior Member
    Join Date
    Aug 2007
    Location
    last house on the left
    Posts
    9,791
    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?

  4. #4
    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.

    (KLD)

  5. #5
    Junior Member
    Join Date
    Apr 2009
    Location
    Manitoba, Canada
    Posts
    3

    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.

  6. #6
    Senior Member fishin'guy's Avatar
    Join Date
    Jun 2008
    Location
    Seattle area Wash state
    Posts
    2,382
    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

  7. #7
    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 http://www.tenten.mb.ca/

    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 DGAment@tenten.mb.ca
    Last edited by orangejello; 04-07-2009 at 01:00 PM.

  8. #8
    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.

    CWO

  9. #9
    Junior Member
    Join Date
    Apr 2009
    Location
    Manitoba, Canada
    Posts
    3
    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.

  10. #10
    Moderator jody's Avatar
    Join Date
    Jan 2004
    Location
    east o the southern warren
    Posts
    8,530
    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.

Similar Threads

  1. Dr. Young - question on bone care...
    By jayday9 in forum Care
    Replies: 24
    Last Post: 05-01-2008, 10:33 PM
  2. Replies: 1
    Last Post: 08-31-2005, 04:36 AM
  3. HGH & testosterone
    By Varian in forum Cure
    Replies: 2
    Last Post: 06-04-2004, 11:42 PM
  4. relationship re:SCI & thyroid
    By franroty in forum Care
    Replies: 4
    Last Post: 12-02-2001, 08:04 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •