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I'm in too much pain to see the pain doctor

Just wondering --
Has anyone here been in too much pain to see a doctor for pain? It may sound a little ironic or even crazy, but there have been quite a few times that I've had to call my surgeon's office or pain management doctor at short notice saying I'm just in too much pain to sit in an hour or more of traffic to get to an appointment.
Of course the whole point of having the appointment is to address the pain that's now stopped me from seeing the doctor.

Last year I even got a warning letter from my surgeon's office saying I had cancelled too often at short notice. Most practices have a late cancellation or no-show fee, but my surgeon's office has no such policy. They just waited until they felt I had cancelled too often (three times in one year) and then sent me a letter threatening to discharge me. Never mind that I had had no fewer than four major spine surgeries there in the past five years. Never mind that I wouldn't be in so much pain had I never had surgery (at least that's my opinion).

Do you feel that your doctors or their staff are empathetic when you have to cancel due to pain? Or are they bureaucratic and unbending, unsympathetic and uncaring?
I understand fully that doctors can't run practices with patients cancelling at the last minute. And it's unfair to other patients who have been waiting for appointments. But sometimes those of us in unrelenting, chronic pain just can't get to our appointments because the pain is so overwhelming.
Have others been through this? Am I selfish to have to cancel on occasion when I can barely get off the couch due to pain? What advice do you have? I would like to think that doctors who deal with a patient population that is by definition in pain might show some sympathy. I don't expect my doctors to like it or tolerate it unconditionally, but after all pain is their business.


  • dilaurodilauro ConnecticutPosts: 9,856
    from everything I have experienced in the past 30 years, from all the doctors and other medical personnel I know, IF a patient needs help in regards to pain management, it is the patients responsibility to see the doctor. If the patient fails to do so and misses appointments, they may be charged for the missed visits or even dismissed.

    In terms of being in that much pain. Again, not to be harsh, but there are ways to get this done. 911 calls to rush you to the ER if you are in that much pain. I know of ER stories where patients with broken legs get themselves to help. When the pain is that severe, you will find ways.

    I understand that since you find yourself in that much pain from time to time, you can not get yourself to a doctor's appointment. Perhaps you should make arrangements in advance to have someone drive you to the doctor's office.

    Most doctors will tolerate an infrequent last minute cancellation. Most offices today have posted signs that clearly state if you cancel within 24 hours, you will be responsible.

    If I was in your shoes, I would contact your doctor's office, explain the situation and ask if they would rather have you go to the ER on this situations via 911 or will they accept a last minute cancellation.

    Its not about caring or not caring.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • terror8396tterror8396 Posts: 1,832
    edited 06/27/2014 - 11:14 AM
    if a person gets pain meds from a doctor and then misses appointments, the doctor can only surmise that he is just trying to get pain meds. i have never missed an appointment without notification, never. yes they can drop you and it is really irresponsible to the office because they have to make time for you. some patients have to wait to get in to see their doctor and if you will miss an appointment, then it is your responsibility to call and to make room for another patient who is waiting. with cell phones, there is no excuse for missing appontments.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I've been in excruciating pain some weeks ,but there was no way I would miss a Doc appointment...I think you find a way to get yourself there,I've got a friend to drive or took a taxi if I've been to unwell to drive...I just dose myself up as much as I can so I can do the journey.....My appointments with my Spinal doc are very important ,if I don't turn up then how am I ever going to get the help I need ?
    There is always a way of getting there..even if the journey brings me to tears with the pain,I still make that journey...
    Facet joint Arthritis L3,L4,L5,DDD.
  • I wanted to thank you for your thoughts about cancellations.
    All of you who responded gave me the "reality check" that I needed. They also made me think more clearly about why it is that I have not tried harder to get through the pain to make it to doctor's appointments.
    Ultimately it comes down to trust. I long ago lost the trust I once had in my surgeon. He recommended a two-level, 360-degree fusion six years ago for what I now know was basically garden-variety back pain; i.e. I had very little leg pain and my back pain was due to degenerative changes typical of a man my age.
    Perhaps my pathology was a bit more advanced than for most people, but I fell for it. I will never forgive myself for what I consider the biggest mistake of my life. From that moment on I have been in much worse pain than before my first surgery, and a promising and successful career came to a halt.
    So is it any surprise that after that huge mistake I ended up postponing surgeries and cancelling at late notice for office visits when I was in too much pain?
    It's not a justification, to be sure. It's not an excuse. After I got a warning letter from my surgeon's office last year about my cancellations, I decided to be the perfect patient. I met all of their demands, never again missed an appointment and went through with a huge, eight-level T10-to-the-pelvis fusion, my fifth major spine surgery in five years.
    Now, I wish I had never gone back to my surgeon. I wish I had been a total "flake" and been fired by his staff. But I kept my appointments and I had the surgery, more out of fear of being discharged by his office than out of a true conviction that this major surgery was the right thing for me.
    It turned out to be a disaster. I had a major complications, a large, painful seroma (a collection of fluid) that did not resolve until after a second operation, multiple drain insertions, leaks, ER visits, CT scans, and worst, a callous lack of interest by my surgeon, who handed me off to a wound specialist and did not want anything more to do with me. Even the wound specialist threw up his hands in despair and said, "I cant understand how a surgeon would just leave his patients high and dry."
    Three months after the surgery, I developed excruciating pain from T10 to my abdomen due to a fracture at T10 that my surgeon earlier had dismissed as probably "just a vein" on the CT scan, even though the radiologist called it a fracture.
    In short, I've been burned. I distrust the spine-medical establishment. I won't be going back to my surgeon, of course.
    But with very few exceptions, I have almost never missed an appointment with my pain specialist. Why? Because over the past five years he has helped me cope with a terrible situation. He is a rock. His staff are responsive and helpful and understanding.
    I return the favor. I manage to keep appointments regardless of pain.
    All of you are correct that keeping appointments should be the highest priority. I agree. But something went very wrong when I decided to keep appointments with the wrong person.
    Thanks again.
  • er visits for chronic pain is another matter. you should never go to the er for pain. you will definitely get the reputation as a drug seeke if you do. er means er, for emergencies and pain is never and i mean never considered a medical emergency. if you have pain then see your doctor and if you do not like him, get another one.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • surgeon since you had an obvious mistrust of your surgeon after the first surgery? We always tell patients that it is their responsiblity if they are unsure or not confident in the treatment options offered by their surgeon to at least consult with at least one other surgeon, preferably two, one ortho and one neuro to see if the recommendations are in line with one another.
    Mistrust of your doctor, not feeling that they are advocating for your best options, best treatment options are huge red flags that all patients should avoid like the plague.
    Not feeling like your surgeon is listening or is blowing off a finding on report is another huge red flag.
  • PinkellaPPinkella Posts: 211
    edited 06/29/2014 - 4:54 AM
    Post edited to remove an inappropriate post to another member. There are 2 different health systems being discussed and one does not relate to the other. The original poster is not in UK

    5.18 Spine-health.com reserves the right to edit, monitor and/or delete comments at our discretion without notice.

    LIz spine-health moderator
    Facet joint Arthritis L3,L4,L5,DDD.
  • Watchyurback -there many Spinal surgeons out there to choose from ..do some research.. I can assure you there are better surgeons out there than uv already had....
    Facet joint Arthritis L3,L4,L5,DDD.
  • terror8396tterror8396 Posts: 1,832
    edited 10/25/2014 - 5:40 PM
    they should to see there doctor EDIT. er means that emergency and pain is not an emergency.

    5.18 Spine-health.com reserves the right to edit, monitor and/or delete comments at our discretion without notice.

    Post edited by Liz spine-health moderator
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • JulijacJJulijac Posts: 170
    edited 06/29/2014 - 4:53 AM
    EDIT Pain can be an emergency in many situations. I'm alive today because I went to an emergency room with pain. I needed emergency surgery that saved my life because I was bleeding internally. No outward signs something was wrong, just pain. If you're not a doctor, you cannot make a blanket statement like that.

    Watchyurback - I'm sorry you are in that much pain. I agree with Helen122, try to medicate yourself enough to get there even if you need to get someone else's assistance in doing so. I hate being in pain, so I will make any appointment to get me out it. Four days post op I was heading to the urologist because I was unable to go to the bathroom by myself. That trip was NOT the most pleasant because of every bump and wide turn to get there was killing my back, but I just had to take two pain meds instead of one for the rest of the day after I got home to calm the pain down. You're lucky you weren't charged for missed appointments! My son missed a dental cleaning appointment because his car broke down on the way and they charged him $45 for missing the appointment even after I called to explain. That would get extremely pricey after awhile. A hit to the wallet can sometimes be just as painful, so it's best to make the appointment. Prayers that you find another doctor that can help you deal with all your pain issues! God bless!

    5.18 Spine-health.com reserves the right to edit, monitor and/or delete comments at our discretion without notice.
    Post edited by Liz spine-health moderator
    Julie K
    L4/L5 fusion TLIF for spondylolisthesis on 5/12/14
  • PinkellaPPinkella Posts: 211
    edited 06/29/2014 - 5:28 AM
    I have to give advice to patients on discharging them from Physio on the wards to return home..and it is my duty to tell them to come back to A&E if they get any worrying symptoms that are not the norm in recovery...Ignoring severe spinal pain can have devastating consequences .
    Emergency gp doc appointments are not always available but A&E is!!

    5.18 Spine-health.com reserves the right to edit, monitor and/or delete comments at our discretion without notice.

    Liz spine-health moderator
    Facet joint Arthritis L3,L4,L5,DDD.
  • I have to disagree some with you Jon about ER visits and pain. I understand where you're coming from about it and agree that if you present to the ER with pain only AND have a PM doc, you are toast. However, there are times where pain can manifest other conditions such as pain induced Super Ventricular Tachycardia (SVT). Essentially, a patients heart rate goes above 150 and stays there. It sometimes requires the use of a medication called Adenosine to "reset" the heart.

    Another case - Kidney Stones. Anyone who has ever suffered from acute kidney stones will typically tell you it's the worse pain they've felt in their lives. I have to admit, I've had them before and I thought death would have felt better!

    Again, I see your point about strictly pain that can be managed other than at the ER, but there are times an ER visit is warranted. Thanks!

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • sandisandi Posts: 6,343
    edited 06/29/2014 - 6:27 AM
    I think that what Jon is trying to say is that, when you have a chronic spine condition, and you have a flare up of that condition, it is not a medical emergency.....therefore going to the ER for a flare up of your chronic back pain isn't warranted in most situations.
    THAT being said, pain, unrelated to your chronic spine condition , or in another area of the body, or pain accompanied with other symptoms needs to be evaluated and treated, whether that be at an ER or your primary. During the day, it may be best to be seen at your primary, and he can make the call to send you/refer you the ER if necessary, and at night, sudden pain, accompanied by other symptoms or not related to a flare up of your chronic pain needs to be evaluated and the ER is the option.
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