You might also like

Wednesday, December 10, 2014

Pain – A rant

   
For seven years I have lived with progressively worsening pain in my back.  I owe every bit of it to my life time of cigarettes and less than optimal eating, but I like to blame it on the carton of copy paper I swung into a shopping cart. My back exploded; the end of life as I knew it.

I took out L1 in that escapade, and over the years other vertebrae have settled and settled. Two inches worth, so far. There is a back pain protocol and I can recite it verbatim. I've been marched through it all, almost in lockstep, with a few balks along the way. I am very familiar with every inch of my spine and if some doctor’s explanation of his proposed treatment didn't stand up to questioning, it didn't happen.

There have been two surgeries on my spine, both completely successful. I am very fond of the C2/C3 fusion with a cadaver bone. It saved me from a surprise broken neck and the complication of paralysis—or worse. The other surgery freed nerves and eliminated leg pain. But the pain that seizes my back has not been controlled, worse luck. It truly limits my life; I hate it.

My back pain got me assigned to a competent arthritis doctor who has prescribed drugs that used to work better than they do now. NSAID’s and, two years ago, Lyrica. Heavy duty stuff. Expensive to the extreme. The latter is being used “off-label” I believe it’s called; it stops pain in the brain, not the back. I appreciate what they do, but not what they do to me. And, the effectiveness is diminishing. And, the cost is killing me.

One piece of protocol suggested was an “injection,” one of several nerve blocks available. I could not bear the thought, and declined. However, I did allow a cortisone injection into each knee, to block the pain of pseudo arthritis. That was eleven months ago. The pain went away and has not returned yet. That is an interesting thing about pain. It really is all in the brain, and once the connection is broken I think it takes time to reconnect. It can take forever, as far as I’m concerned.

So, I reconsidered the nerve block. There’s a protocol, I’m on the yellow brick road. But, here is the rant. My arthritis doctor did his bit with the recommendation and referred me to the pain specialist who would inject. In setting up the appointment I was asked if I had seen a pain specialist before and the answer is yes, in the very beginning.

The new specialist will not give me an appointment without the records of the previous specialist. I explained the previous specialist is in prison for sexual assault. I saw him twice and his behavior was unprofessional. Creepy. Aside from the pain drugs leaving me completely non-functional he gave me little notes as I left. I never went back. Imagine my surprise several years later finding him on the front page. I never wanted him near me again, and I don’t want his diagnostic notes, either.

But, no notes, no new appointment. I went to the office this morning so I could look people in the eye and make my request. I wanted the papers in my hand, but the charge for that is twenty dollars. They will be faxed for free. I enjoyed saying the doctor’s name to the receptionist, hearing the reception area go quiet. Small revenge for twenty dollars I will not spend.

The new scheduler is following her protocol—no notes, no appointment. I had to wait two months for the appointment with my rheumatologist to get the referral to the pain doctor. He applauded my decision to pursue this; I was so pumped up. And now another person with protocol power has to have the notes of a doctor I consider a complete fraud in order to proceed. 

I would reach through the phone and smack her, but she is not returning my phone calls about setting the appointment date prior to the new doctor reviewing the old notes.  The initial appointment, before her discovery of the other doctor was several weeks out. "I cancelled it," her only reply to my request for a provisional date.

So, that is my rant, and I do feel entitled to it.

Although I have not smoked for six and a half years, the protocol gods were not appeased.





30 comments:

  1. You are talking my language
    I was a spinal injury nurse for 19 years

    ReplyDelete
  2. A rant you are well entitled to! I hope a competent doctor can alleviate that pain.

    I had a C6 fusion 25 years ago...that neck pain is not fun.

    ReplyDelete
  3. Thank you for putting my absolutely petty obsessions entirely into perspective, and thereby making me feel so much better, Joanne. I mean that. X

    ReplyDelete
    Replies
    1. Pain is not petty,Tom. It is consuming. If it can be kicked in the butt, I say over the goal post. Do look into it. I mean that.

      Delete
  4. I can't imagine how you manage that enormous loom with your back issues!
    I vote that you send this post verbatim to this new anal scheduler - and I'm referring to her attitude, not her specialty.

    ReplyDelete
    Replies
    1. Twenty minutes at a time, Marty. But with my back fixed, watch out!

      Delete
    2. I went with my husband to his pain doctor today. Husband had back surgery a couple of months before he turned 80. Story too long & complicated to tell. Six weeks later another surgery followed by unmitigated pain. Finally I had had it with the neurosurgeon who kept insisting the pain would go away in time. Don't think the old man would live long enough to see that happen. Our primary care doc had his staff call & get an appt. with the pain doc. Injections in his back gave him the most relief he'd had in months. Now the pain doc requires that he go every two months, just to see how he's doing. So far, he is getting injections every other trip. I think it stinks that rules matter more than people do. Your rant is understandable. Can you put it online somewhere that would make a difference? Like the new pain doc's web site? There are sites that allow people to evaluate their experiences.

      Delete
  5. Too bad you didn't know ahead so you could have just lied about a previous consult. What a crock!

    ReplyDelete
    Replies
    1. I know. As the conversation progressed I tried to formulate a convincing lie of making a mistake. However, she knew the doctor's name. The jig was up.

      Delete
  6. Nothing worse than back pain it strikes without warning or mine does.
    But all medical red tape is very hard to understand.
    Merle..................

    ReplyDelete
  7. Hari Om
    This arthritic back is just going to have to make do... I don't 'do' doctors full stop... for all the sorts of reasons you are facing now. I do hope you get that appt soonest - there's weaving to be done!!! YAM xx

    ReplyDelete
  8. The red tape & paper of current medical stuff astounds me. Here's to hope in the future.

    ReplyDelete
  9. I have RA, so I understand pain. And I have dealt with back and sciatica pain for years. The ONLY thing that brought me any relief were the yearly spinal injections that I get. I was AMAZED at how effective they are. And yes, doesn't it just KILL you to think of your brain dealing out that pain? I have tried all sorts of hypnotizing, etc. Nothing has worked. But the injections. GET THEM!!!!

    ReplyDelete
  10. I do wish these people obsessed by protocols could experience the pain for themselves....just for a little while, until they took on board thagt pain relief is more important than paperwork which covers their backside/

    ReplyDelete
  11. Is there a different pain specialist you could be referred to? She doesn't sound all that empathetic, I'm thinking with dismay. I know a number of people with chronic pain and they would hate that treatment by a doctor who is supposed to be helping them.

    ReplyDelete
  12. I hope this gets worked out for you soon Joanne, I don't like the thought of you suffering... not one little bit.

    ReplyDelete
  13. Sorry to hear you are suffering.....hope everything works out for you.

    ReplyDelete
  14. So sorry about your pain. So if the records got destroyed like in a fire or something else like that, you wouldn't be able to make an appointment? Doesn't seem right. While I understand the reasons behind wanting to see old records, I certainly think you are competent enough to give a thorough history of your condition. Ridiculous the hoops you have to jump through to get a little relief!

    betty

    ReplyDelete
  15. Good luck. I was taking Lyrica for my neuropathic pain and did get some relief. Then it faded. And disappeared. My bank balance improved immediately - but that was the only thing that did. We haven't found a substitute yet, and since my pain is a moveable feast - back/arms/legs, a nerve block isn't an option.
    I will cross everything for you. Pain is a soul sucker. And tiring. And turns me at least into the psycho bitch from hell at intervals.

    ReplyDelete
  16. You certainly deserve to rant about the medical doc's. When they are bad they are very, very bad and when they are good they are very, very good. The stories I could tell as I am sure so many of your readers could tell. -- barbara P.S. Has your doc's ever heard of fax machines?

    ReplyDelete
  17. Very sorry to hear of your back pain. Pain, where ever it is makes us want to rant and smack someone. I hope you do get some kind of relief for it. Even a little back and neck pain is too much. xx

    ReplyDelete
  18. I've no idea how the US medical system works, but can you get a referral to a different specialist and get it stated *in the referral* that your previous notes aren't available? There must be a more flexible specialist who is interested in people in pain, not rules, and has their administrators chosen for the same qualities. Here's hoping.

    ReplyDelete
  19. It would have been better, in hindsight, to say no when asked had you seen a pain specialist before.
    I'm so sorry to hear you have this much pain and hope something is done very soon to relieve it.
    My own back pain is mostly muscular with a little arthritis thrown in at each end of the spine, easily managed with rest and hot water bottles. As long as I stay away from work.
    I don't know how you've kept working all this time with pain such as you have, you're a much stronger woman than I am for sure. And raising the grand children, and weaving! I take my hat off to you Joanne. You're a five star woman*****

    ReplyDelete
  20. Oh dear Joanne - I have a friend with very similar problems - he is in agony and because he smokes they will not do anything until he stops - he is trying hard.

    ReplyDelete
  21. Dear Joanne,
    this is very hard for you to endure that much pain! Your country's health care seems to be a very strange system, and to have to pay for all these medications from your own purse can be very hard indeed. You are right about pain-memory: it engraves itself into the brain - and one has to un-learn, I wish that your new doctor is more able than the last one!! And that you get soon as painfree as possible.

    ReplyDelete
  22. That is so sad. I wish I could make you feel better, Joanne.
    My husband had back surgery in 1978 on his herniated disc and felt much better.
    But he does have arthritis in his knees and hips and it is just a matter of time before he has surgery on those, too.

    ReplyDelete
  23. I didn't know of your pain. Hope things get better.

    ReplyDelete
  24. I'm sorry you're in so much pain. My mom also had a spinal fusion, so I have some idea of what you've been going through. How awful about your abusive pain specialist. I hope the new doctor is able to find the right combination that works well for you. Feel better, Joanne.

    Julie

    ReplyDelete
  25. an object lesson in how fucked up our health care system is. I hope you get it resolved soon. back pain is the worst.

    ReplyDelete