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  • Dh Vent and need help

    Well I really do not know where to start. Dh is a Quad C5 C6. I am able body. We have been married for almost 9 yrs and curretly pregnant. Well DH is in alot of pain. He has his good days and bad. How do ya;ll deaal with the bad days. It seems lately they are all the time. It was not this bad tell the last 2 yrs. I do not know what to do to help him are make him feel better anymore. I am trying my best. I love him so much. He is my world.
    Here are my questions?

    What can you do for his pain?
    What can be done for him feeling like his body is turning?
    The sparms are worst. What can we do about that?
    He does not want to go to the Dr.
    His leg want to cross at night. What can we do about that?

    I am trying. I do range of motion everyday. I had stopped for a little while but I am doing it again. I just feel bad because I can't help him. Any help will be nice. Thanks for looking at my post. I just really want to help him. He is the love of my life.

    Laura
    Laura wife to Geno (Van Damn) & mother to Topanga Elizabeth born 2-11-07 after years of fertiliy problems and a few .

  • #2
    Morning Laura, Morning to VanDam too! I'm sure you will get mucho
    responses once everyone wakes up in here.

    I will say tho, him not wanting to go to the "doc" is a genetic defect we women find in all our "males". But thankfully, most are becoming aware now....how being pro-active about their health makes living just a tad bit easier. Having annual exams say for prostrate is nothing to sneeze at
    anymore and while men hate it...it's a must. Being SCI, with all it's gifts
    should have him wanting a physcist(sp) can't spell it, but they are "SCI
    specialists" they can help him in sooooo many ways with pain, spasms,
    that turning feeling he has.

    Hang in there L, you are a sweet, devoted and supportive wife and I know DH in his moments is so very proud and has so much love for you.

    Take care,

    Queen
    Your life is what you make it, and only you have that choice!

    Comment


    • #3
      Are you his only caregiver?
      Were you married before his injury or afterwards?
      How long has he been injured?
      Is the pain new, or has he had it for a long time?
      What does he do when he gets a UTI?

      His refusal to see a physician is problematic, as it can reflect depression (is this something new) as well as a general disregard for this own health. There are a lot of things that can go wrong with someone with SCI that early screening can catch and take care of before it gets bad. First and foremost are regular checks of his kidney function and bladder status. Routine neurologic checks also can catch problems such as a syrinx or nerve impingement syndromes early. Problems such as scoliosis also should be screened for and caught early. Pressure ulcers need the immediate attention of a physician who knows SCI and wound care.

      His spasticity could be helped with medication. Does he stand on a regular basis? This can help spasticity too. The daily ROM will help some, but often that is not sufficient. His leg scissoring at night is part of spasticity, and could lead to skin problems as well as chronic hip dislocation if not managed correctly. Medications can help, but they would need to be prescribed and managed by a physician.

      His neuropathic pain could just be part of the "joy" of SCI, but if new or suddenly increased, could be a symptom of a syrinx. There are measures that can be taken for neuropathic pain. This includes things like TENS or acupuncture, but most often people use medications such as tricyclic antidepressants, or anti-seizure medications such as Neuroton, Lyrica, or Tegretol. Narcotics are required for some, but not all people with neuropathic pain. All of this must be managed by an experienced SCI physician, and the drugs are only available by prescription.

      The sense of constant turning is not something generally seen in SCI. He could have an inner ear dysfunction, which would also need to be evaluated by a physician (generally a neurologist or ENT).

      As you can see, he really does need to see a physician (ideally a physiatrist experienced in SCI care). You may need to give him an ultimatum. With a baby on the way, he needs to take some responsibility for himself by taking care of himself and taking some of this burden of care and stress off of you. The baby needs a daddy who will be there for him/her as they grow up. He can do this by seeking consultation with an experienced SCI physician and taking measures to improve and maintain his health.

      (KLD)
      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.

      Comment


      • #4
        I am his only caregiver. We got married after the injured. He has been injured for 9 1/2 yrs. The pain has come in the last yr or 2. they give him meds for UTI. We go to the wound clinic every week. We go to the Urolory every 4 wks. they are always doing test on him. he just will not go to a Dr for the pain and other things going on. We went a yr agoto a neurologist and Dh felt they were not helping him and stop going. We did acupuncture 3 times a week for a month. We stop going because they would not take him out of his chair and he did not like that. Not going to the Dr has always been. He said he has seen enought Dr's in his life.He does not stand.
        Laura wife to Geno (Van Damn) & mother to Topanga Elizabeth born 2-11-07 after years of fertiliy problems and a few .

        Comment


        • #5
          First, you need to look at getting help so you are not his only caregiver. It is the rare marriage that can survive having a spouse as a full time caregiver. This is even more critical with the baby, as you need to be able to take care of yourself and the baby, both now and after the baby is born, and being his only caregiver will leave you exhausted and perhaps even put your health and the baby's health at risk.

          He needs to see a physiatrist. Did the neurologist do an MRI to look for a syrinx? Why is he seeing a urologist so often? If he has a pressure ulcer, what is being done for it, where is it, and is he on bedrest? Why doesn't he stand?

          (KLD)
          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.

          Comment


          • #6
            He his a Sp cath. So he his to go to Dr to get it changed. No they did not do a MRI when we went. Wound care is being done daily by a RN. They want him to be in bed as much as possible. His wounds are on his low butt. We do have a aid that comes 2 times a week to give him a bath. So I get a little break. We do not have a standing table.
            Laura wife to Geno (Van Damn) & mother to Topanga Elizabeth born 2-11-07 after years of fertiliy problems and a few .

            Comment


            • #7
              With ischial pressure ulcers he should NEVER sit, either in bed, commode, shower or wheelchair. Is he on a special pressure reducing mattress? What is being done for the wounds? How deep are they?

              Can you get more hours of help so someone else is doing his bowel care too? Just getting his SP changed is not seeing a urologist...I suspect a MA or nurse does this. Many people learn to do this in the home setting...you could learn if you want to, or the RN from the home care agency could do it.

              Has he tried to get a standing frame through his insurance?

              (KLD)
              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.

              Comment


              • #8
                Yes he on a special pressure reducing mattress. His wounds are not bad at all. They just have the skin to grow over the wounds. The Dr is amazed with how good they are doing. We do see a urologist to have his SP changed. The Dr does not let anyone but him change it. We have been going to him since Dh injure. They do test on him every so many month and some test are every yr. We have Medicare I donot know if they would get him a standing fame.
                Laura wife to Geno (Van Damn) & mother to Topanga Elizabeth born 2-11-07 after years of fertiliy problems and a few .

                Comment


                • #9
                  thanks
                  Laura wife to Geno (Van Damn) & mother to Topanga Elizabeth born 2-11-07 after years of fertiliy problems and a few .

                  Comment


                  • #10
                    for spasms sitting up smoking pot rules, for bed spasms laying prone helps
                    There's
                    No
                    Place
                    Like
                    127.0.0.1

                    Comment


                    • #11
                      Carebeartrying,
                      Unfortunately I can't be of much help to you but I just wanted to say congratulations on your pregnancy and I wish both you and DH all the best,the arrival of a new bub will definately bring a smile to DH's face for sure.
                      SCI nurse I find the question" Were you married before or after Dh's injury"
                      irrelevant and totally disrepectfull.
                      Why on earth would you want to know that when she is talking about her husband's pain.
                      In the 12yrs since my injury I don't mind people asking me just about anything but the one question I HATE is "so were you two together before your accident".
                      I personally find it a really personal question to be asked and I don't even know carebeartrying but I can say one thing SHE IS TRYING so cut her so slack..
                      I know you do a fantastic job here but some things are better left unsaid

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