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Thread: how long to wait to call dr about test results?

  1. #1
    Senior Member skippy13's Avatar
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    how long to wait to call dr about test results?

    I have been in horrible pain since september. Morphine doesnt help. I knew it was from the C-7. I gave it all of the usual opportunities to cool down on its own, rest, heat ice, PT, and even some traction. I am uncomfortable with traction since it is below my C-5/6 fusion. Trouble is, this thing is just getting worse by the day.

    I went to portland for the ecv/emg tests and even the neurologist was saying how much new nerve damage is being done from my neck muscles on down to my hand which is already compromised. My right tricep is nearly gone as is the muscle on the outer side of my lower arm. I was right about it being the C-7. I need those muscles to be able to transfer and all of that stuff.

    I frankly cant deal with this pain anymore. Really. Is there a protocol about how long you should wait for the Doctor to call you back about test results that are transmitted electronically? I know that there is only one option (surgery) left to me now, and I need to know that there will be a light at the end of this tunnel. I really cant wait anymore. Really.

    Example of wait times:
    I could have died from a severe impaction that was no big deal to them last month. It went on for weeks until I checked myself into the ER.

    I had to call the doc three times about getting a refill extension on my Baclofen this month. I can then refill online, so its not like its that much trouble for them to pull up my e-chart and check a box. The nurse finally called me back with a very nasty tone after my third call telling me that it is not on their schedule of emergency drugs and that would be handled when there was time to do so! (huh?) Well it is an emergency to me. I gave them three weeks to get this done before I was to run out because mailing times have to be accounted for as well. It is an emergency drug to me especially when I run out. I cant even be an hour late in dosing or I have a whole day of problems and a night of no sleep ahead of me with hand and feet and arm, leg and trunk spasms that knock the wind out of me.

    The point is, they just seem to take their sweet time to get around to doing things. I realize that they are busy, but how long is long enough to wait to get something done? I really cant wait another eight months to resolve this. I will have no arm function left at all, and I cannot take the pain ANY longer. I have done it long enough. Really.
    Anything worth doing, is worth doing to excess

  2. #2
    Senior Member CurvySAT05's Avatar
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    I would say that if it has been a couple weeks and you haven't heard back from the doctor with the results you should give them a friendly call (not that you would be unfriendly, LOL). Sometimes it takes a few days (lets call it 1 business week) for the specialist or testing center to finish the dictation/reading of the results and then it can take a few days (lets call it another business week) for your doctor to receive the results, go over them and eventually call you back.
    In a perfect world doctors would receive results in a day or two, look over them and then prioritize the patients they need to call based on importance of test results (hopefully they would call the person with cancer before they called a person with a sprained ankle, etc.).
    I say you are probably okay to give them a call...
    ~Mandy~
    SCI as a result of spinal surgery
    TiLite Aero Z!!!

  3. #3
    Did your doctor do the EMG or was it done by another doctor? If so, your doctor may be waiting for the report from the first doctor. They should have told you how long it would take to get the reports when scheduling the tests.

    I am not clear what you are being tested for. Peripheral neuropathy? Root compression? Have you had an MRI to rule out root compression or a syrinx as the cause of your deterioration? Is this physician a neurologist?

    If you have a pattern of having your physician's office not be responsive to your needs, you should change physicians, and tell this one why you are leaving. If you are in an HMO, you can request a change in physicians, and should report this one for being non-responsive.

    (KLD)

  4. #4
    Senior Member skippy13's Avatar
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    The emg/ncv was finally done by a subcontractor at OHSU that is associated with the Portland VAMC when months on Morphine didn't work. (I live in Eugene 100 miles away.) All of my care is done through the Eugene VA clinic. I have no choice there unless I want to pay private sector and have indeed had to resort to this.

    I have severe stenosis and an osteophyte causing root compression coming from C-7 and have had since september of last year, I knew it by the symptoms like b &b problems and muscle loss, they knew it (from and MRI) and I have had to just suck it up and deal with it and stuff down 21 different meds each day.

    If you ask politely for attention you get nowhere, or worse they forget to return calls, cancel appointments and just generally get nasty on the phone like you are bugging them or something. I often have to go to the private sector just to get minimum care, and then have to pay hundreds for things like getting my bowel cleaned out after complaining and begging for help for nearly a month until I was throwing up and sicker than a dog.

    I don't have a doctor at this clinic, just a nurse practitioner. Can't get past that, no how no way. I have been given pain meds up the ying yang that havent worked at all, leaving me at the point of insanity and unable to get any relief and very very nearly suicidal. (that's a lie, completely suicidal)

    I know you are going to blast me for complaining about care I get at the VA, but you have to realize that not all are as good as your VAMC. I'm 100% service connected and just feel that I havent gotten very good care here at all and because of circumstances have no other options.

    I'm sorry if the tone of this is nasty, but I can't take this anymore. I am in terrible pain tonite.
    Anything worth doing, is worth doing to excess

  5. #5
    Have you asked your PVA NSO to advocate for you with the VA? This is their job and you should be asking them to do this. Your VA SCI Center in Seattle should also be your resource for care, not just your support (Spoke) clinic. NPs often give better care than physicians, although that is not always the case.

    (KLD)

  6. #6
    Senior Member skippy13's Avatar
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    Yes I have. I got no reply from the SCI coordinator that I was finally abe to contact even though no one I spoke to knew what the hell I was talking about and it took days just to figure out who she was. I am not able to get any help from the VSO (county paid officials) who have no idea what I was talking about even though I printed out a copy of VA handbook 1176.1 and showed it to him. I have also given a copy to my NP and got nowhere there either. The patient advocate doen't return phone calls either.

    I know that seattle is where I should be getting some of my cae, but the people I have to see at the local clinic are not going to get me there. Ever.
    Anything worth doing, is worth doing to excess

  7. #7
    I am not sure what you mean by "VSO (county paid officials)" Your PVA NSO is paid by the national PVA office, not by the VA or any other local agency. This is the contact information for your closest PVA NSO:

    Ken Fink, N.S.O.
    Federal Building
    1220 SW 3rd Ave., Suite 1610
    Telephone: 503-412-4762
    Toll Free: 1-800-795-3627

    If you are going to a CBOC for VA without a SCI Support Clinic for care, you really need to start going to your support clinic in Portland. I can get you their specific names. The VA SCI Chief Consultant (also the Chief at Seattle) says you should not be getting your primary care at a CBOC as they have not had the required training that a designated Spoke SCI Support Clinic staff has been required to have. It may be further to travel, but this is the team you should be working with.

    You can also directly contact the SCI Center in Seattle about getting services there, including paid travel to their center by your local VA if you require SCI Center services (including your annual evaluation).

    (KLD)

  8. #8
    Senior Member skippy13's Avatar
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    Thanks anyway. They are sending me to a pain clinic for injections so that I will no longer be able to feel my arm die. Just what I need, huh? I Quit. I'm not taking any more of this shit.
    Anything worth doing, is worth doing to excess

  9. #9
    Do not do anything until you have talked to the person above, and also talked to the people at Seattle (your designated VA SCI Center). They should NOT be doing any type of ablative treatments locally. This is restricted to your VA SCI Center. Have you done any of this???

    (KLD)

  10. #10
    skippy, I (and more than a few other folks) left a note for you in the Suicide thread (in the Life forum). I'm willing to help get things moving in the right direction for you -- you don't have to deal with all of this on your own. We're here for you.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


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