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Thread: Dr. Young, SCI Nurse and Others, what to get checked out with new SCI doctor

  1. #1

    Dr. Young, SCI Nurse and Others, what to get checked out with new SCI doctor

    i'm going to see a new SCI doctor soon. i have not seen one in 3 years. the last one never did anything but talk to me for about 5 minutes so I quit going.

    this may sound like a stupid question from someone who has been injured almost 15 years, but what do I want checked out?

    I'd like to know the general "health" of my spine and spinal cord. How do I phrase that? I'd like to know if i have any intact cord. i'd like to know if i have a compression. I want to know if there is anything I need to do to prepare my spine for the cure when it gets here. what else do i need to ask be checked for and how to phrase the questions? I've learned some, but am not up on all the terminology.

    i'm not necessarily going to have my pain treated. my gp does that the best that can be done i think. i'm going to hurt no matter what. but i do think some things would help me in the way of therapy, a standing frame, fes, something, anything? my old doctor never suggested anything except to suggest surgery, but it was just an off-hand remark and i wasn't too keen on that.

    i don't need kub or renal scan. i have a urologist already for that and keep current with that. I told the office that. I just want to see if my spine has any problems and get some suggestions. with the way my spine was torn up when injured i'm thinking it's probably deteriorated some after 15 years. my old doctor never ordered an MRI or anything to compare my current (then) condition to my condition after injury.

    i guess basically i need a list. after my last experience with the other sci doctor, i'm thinking i need to be really up on what i need and not depend on the doctor to know what's best.

    can you give me some suggestions as to what I actually need at this point in life? what do I need to request, if not offered? thank you for your time and assistance.

  2. #2

    The SCI doctor is presumably a physiatrist and you should ask him/her questions that he/she can answer. Physiatrists are experienced in dealing with problems such as spasticity, skin care, bladder problems, exercise, FES, and complications of spinal cord injury, such as autonomic dysreflexia and urinary tract infections. Some are experts on hormonal levels and most should have an enlightened attitude about neuropathic pain. They are generally not experts on orthopedic and neurosurgical procedures to handle problems like spinal cord compression and syringomyelia. Most are not up on the latest spinal cord injury research, particularly curative therapies. So, perhaps, you need to lower your expectations a bit and get the info in areas that the doctor is expert on. Wise.

  3. #3
    thank you very much. i appreciate your reply. if I want answers more specific to my spine and cord would i be correct to see an orthepedist or a neurosurgeon then? would it be a good idea to see the sci doctor first and then go from there? i've got all the things you mentioned under control except exercise. I'm working on that. the only other problem i'm having lately that isn't being treated elsewhere is unexplained sweating at night. my previous sci doctor didn't address any of the things you mentioned, even though i'd ask for help with some of them. his attitude was pretty much that I was just going to have to deal with it as it was a part of paralysis. he didn't believe in prescribing meds and never suggested any kind of therapy or prevention. i didn't even know i should get an mri every now and then just to keep watch on my spinal health. it's hard to tell if i'm worse or not because i hurt so badly anyway. i know i hurt worse than i did after my injury and the few years after it. i don't know if that's a sign of getting worse though necessarily. I know my injury site hurts a lot worse and my hump in my back is worse though. i felt i needed an sci doc, but it sounds like my other doctors really have those things under control, as much as they can be. does a neurosurgeon take on a patient who just wants an evaluation? thanks so much

    just wanted to add that i'm sorry i sound so ignorant about what these doctors do. i probably should know this. i have honestly never known what the sci doc was for because i only had that one, so i appreciate the explaination of what the sci doc function should be.

    [This message was edited by Blundy on 01-27-04 at 04:54 PM.]

  4. #4
    Blundy, what about your chair or other adaptive equipment - ie, shower chair, etc. THe physiatrist can arrange for you to have a seating evaluation for chair and/or cushion if needed, and can also write a 'script' for 'durable medical equipment'.

    Tough times don't last - tough people do.

  5. #5
    Unfortunately, the clinical practice guideline on SCI annual exams that was in development by the Consortium for Spinal Cord Medicine was put on hold 2 years ago. It would be nice if this could be resurrected.

    The Department of Veterans Affairs has regulations (Manual 1176.1) regarding the care of veterans with SCI. This includes very specific requirements for what should be a part of the annual evaluation. This is a good guide for everyone with a SCI (as an ideal):

    Lab studies
    <UL TYPE=SQUARE><LI>CBC (complete blood count)
    <LI>Chemistry panel to include creatinine and BUN
    <LI>Lipid panel
    <LI>Screening for hepatitis C if indicated[/list]

    For the urinary system:
    <UL TYPE=SQUARE><LI>24 hour urine for creatinine clearance
    <LI>PSA (for men over 40)
    <LI>Prostate manual exam (for all men)
    <LI>Urinalysis and urine culture and sensitivity
    <LI>KUB (kidneys, ureters, bladder) Xray
    <LI>Abdominal, kidney and ureter ultrasound (to include gall bladder)
    <LI>Urodynamics (at least every 2 years for those without indwelling catheters or urostomies)
    <LI>Urine cytology X3 (for those with indwelling catheter over 5 years)
    <LI>Cystoscopy with bladder biopsy (for those with indwelling catheter over 10 years)[/list]

    <UL TYPE=SQUARE><LI>annual neurologic exam to determine any changes
    <LI>screening for any spinal deformity/instability
    <LI>screening for shoulder injuries
    <LI>equipment re-evaluation
    <LI>screening for depression
    <LI>screening for alcohol or drug abuse
    <LI>screening for abuse or neglect
    <LI>screening for sexuality counseling needs
    <LI>screening for diabetes and hypertension
    <LI>screening for glaucoma if you are taking any anticholergic meds
    <LI>screening for skin breakdown
    <LI>screening for educational needs related to AD, etc.
    <LI>screening for sleep apnea
    <LI>annual immunizations to include flu, & screening for need for tetanus and Pneumovax[/list]

    Women should also have an annual breast exam, mammogram (after age 40) and pelvic exam with a Pap smear.

    Some physiatrists (and other specialists) have a second board certification in Spinal Cord Medicine. This is fairly recent, and this board has much more emphasis on life-long care and health maintenance than does the PM&R boards. I would personally seek out a physiatrist who has obtained this additional board certification if I were looking for a SCI physician.


    [This message was edited by SCI-Nurse on 01-27-04 at 08:21 PM.]

  6. #6
    Thank you so much for your replies. Thanks for the guide Nurse KLD. This is very, very helpful. This will make things so much easier. And thank you Marmalady for the reminder about the need for script for equipment. voc rehab bought my last chair/cushion 4 years ago and so i'd forgotten about even needing a script for a chair. and as hard as i am on a chair it's about time for a new one. thanks so much again to you both.

  7. #7
    I think if I gave my doc that list he would have a heart attack.

    Too bad there is no such thing as a physiatrist here in Germany. Most people with SCI have to go to the SCI hospital where they recovered in to get competent help. Local neurologists and general doctors know little to nothing about SCI. I pretty much have to fight for any major screening work and haven´t had an MRI done since 1997. No pain, no problem, is so much the standard line..syringomyleia and other risks are pretty much unknowns. Guess it´s time to start faking some problems!

    It´s a good list though!

    "So I have stayed as I am, without regret, seperated from the normal human condition." Guy Sajer

  8. #8
    Mike C, I can relate. i have not had an MRI since I was in the hospital in 1989 when I was injured. It's never been suggested even though I have complained to my former sci doctor of extreme pain. good luck. i hope you get what you need.

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