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Thread: Was your rehab experience lacking?

  1. #31
    thanks Nurse. I know there have got to be good things going on somewhere. If they are going on at my old hospital though, it's for someone besides me. I went there for my check-ups until 4 years ago, when I saw I just wasn't getting any help and never would. My doctor even refused to treat my pain which had gotten progressively worse over the years. There is a pain clinic there, but he would not give me a referral. He said he didn't want me to become a "twitching addict". (his words, not mine) I'm not the kind of person to take a bunch of pills, but I don't want to hurt all the time either. I have unbearable pain that can leave me unable to function. I just wanted to be able to function. It really made me upset that he would not even give me a referal, and when I asked him what else could I do, he said surgery or a back-brace...which I can't wear a brace, I've tried to before, my spine is too crooked and I can't be mobile in it, or breath, and I'm not having surgery without trying something less invasive and drastic first. I thought well, maybe it's just me, maybe I just have to hurt like hell and live with it. Then I come here and see so many people discussing what they take and do for pain as if it's just common. I know AB folks in better shape than I am who are prescribed more pain meds than I'd dream of taking. He made me feel like I was asking for something fantastic and bizarre. well, and that really did seem to be his attitude...your are in a wheelchair..this is just how it's going to be..your'e not as young as you used to be...I was only 29 at the time, 4 years ago. Anyway, I also quit going there because the urologist I was seeing refused to remove my kidney stones. I saw him repeatedly for months. By the time I decided I had to see another urologist or die from the UTI that I never could get rid of, the stones were lodged in my ureter and my kidney was completely blocked. my new neurologist at another hospital was stunned to say the least that I'd been let to get in that kind of shape. He had me in for surgery the next week. It all sounds like a made up story it's so ridiculous. and my wife even says--If she had not lived through it with me, and someone else had told her all this, she would not have believed it.

    Even more disheartening after all that is that now, 4 years later, I decide to maybe just TRY another doctor there. Call me a glutton for punishment. But, I thought different doctor, different experience maybe. Well, I get a name, I call to make an appointment, was told yes, she is taking new patients, but since I'm transferring from one doctor (even though I've not been there in 4 years) to this one, they will have to have someone call me back to make the appointment as they lady I was speaking with did not schedule new patient appointments, only annual check-ups. Well, they never called back. So, I figure if someone drops the ball this early in the game, that's not the place for me, new doctor or not. I had the same type problems there 4 years ago. Appointments being lost, the wrong tests being scheduled, etc. etc. So, I guess I will just continue going to my GP and hope he can figure things out the best he can.

    you are right, I have learned the hard way that you really just have to keep on until you find help. it has seemed like looking for a needle in a haystack for me though. I really wanted to go to a doctor that knew more about SCI, but at this point I'm just aggravated and I think I'll just stick with my GP for a while. And I still have my good urologist and get my kidneys checked once a year...every 6 months when I've had stones.

    thanks again, and I really do appreciate all that help that you and all the nurses here have given me. it means a lot.

    [This message was edited by Blundy on 02-10-04 at 09:59 AM.]

  2. #32
    Blundy - I wish I could say your story is made up as much as you wish it were not so. In my work in the Resource Center for the NSCIA, I hear daily the stories from people that match yours. As a SCI professional and as a nurse, it really makes me so angry, as this is not what good health care, for anyone, is about. My advice to you is to "hang in there", be persistent, consistent and insistent in your goal to get the right kind of health care. The sad thing, is that in my experience, I know that there are truly dedicated, compassionate and excellent SCI physicians, such as we all know from our experiences with Dr. Young. The challenge is finding those physicians.

    The following resources may offer some insights and help to you:

    Craig Hospital educational brochures: Scroll through the topics to the ones on 'changing, choosing, interacting with your doctor'

    To find a physiatrist, go to: This website will ask for your zipcode, then pull up a list of physiatrists in your region. You will then need to screen them and find someone with SCI expertise. Generally, you should be looking for someone with a subspecialty in SCI. A physiatrist, or doctor of physical medicine, is considered the specialist most prepared to provide primary care for the person with SCI. However, it is important to be certain that s/he practices more than sports medicine, etc.

    University of Alabama, Spain Rehab Center: Pain following SCI. Let me know if you would like more pain resources. Hope that this helps!! CRF

  3. #33
    thank you so very, very much Nurse CRF. you are absolutely priceless :-)

  4. #34
    I agree with parajudy's statement that just because you are in a top rehab facility doesn't mean you will have a great experience. We sent my father to a model SCI rehab 3 hours away from our family because we wanted him to have the best care and the best chance to recover some abilities. I used my vacation time and family medical leave time to stay with him from the time of the accident until he transferred to the rehab because we live in a very rural area and I was afraid to leave him in a place that wasn't familiar with spinal cord injuries by himself since he was paralyzed and couldn't use the call bell etc. I had felt like once he got to the rehab where they were used to taking care of patients with his particular challenges, I would feel comfortable that he was being cared for & could relax but that wasn't really the case. The communication wasn't very good, it would sometimes take 20 minutes to get someone on the phone to give us an update, and several days for therapists and people to call us back. He wasn't showing any improvements in terms of movements and his spasms were getting worse. We were only able to visit on weekends and it just seemed cold & unfriendly, often I would ask about something I noticed different and be dismissed- I noticed a rash that was new & when I asked the nurse she said she didn't know it was her first day having him, but no offer to investigate, no reassurances about what it was or that she would let the doctor know, etc. It was very hard having that expectation that he would be in a better place and then the reality of it not being what we had hoped & then not being able to be there to keep on top of things as we previously had been.

  5. #35
    This thread is over 10 years old; predating the existance of our New SCI forum, where I am moving it.


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