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PUT OFF

stockbrokersstockbroker Posts: 464
edited 06/11/2012 - 8:24 AM in Pain Management
LET ME BEGIN BY SAYING THAT I HAD A TOTALLY HORRIBLE PAIN DAY YESTERDAY. I HADN'T DONE ANYTHING STRENUOUS OR UNUSUAL THE DAY BEFORE; THE WEATHER WAS NICE. I HAD A HORRIBLE, HORRIIBLE DAY. SEVERAL TIMES, I WENT INTO ONE OF THE STALLS OF THE LADIES ROOM AND CRIED. I WENT HOME SHORTLY AFTER 1PM. I TOOK MY USUAL PAIN MEDICATION AND IT DIDN'T EVEN HAVE ANY EFFECT AT ALL. I'M SURE YOU ALL HAVE HAD DAYS JUST LIKE THIS ONE AND KNOW WHAT I'M TALKING ABOUT. ON MY DRIVE HOME, I THOUGHTI WOULD CALL THE NEUROSURGEON'S OFFICE AGAIN. THEY ARE SUPPOSEDLY RUNNING THE SHOW, BUT A DIFFERENT PM DOC IS GOING TO DO THE TRIAL (I'M REFERRING TO MY MUCH ANTICIPATED SCS.)I HAD MY PSYCH EVAL THREE WEEKS AGO AND SO FAR THAT'S WHERE I STAND. THE NS HAD NOT FAXXED THE PSYCH REPORT TO THE PM SO THEY CAN CALL MY INSURANCE CO. AND THE NEUROSURGEON'S OFFICE NOW TELLS ME THAT THEY'VE GOTTEN A LOT OF CALLS RECENTLY SO THE DOCTOR IS NOW SCHEDULING SURGERIES OUT INTO FEBRUARY. I KINDA LOST IT. I REMINDED HER HOW I WANTED TO HAVE THIS ALL DONE THIS YEAR AND WAS TOLD THAT WOULDN'T BE A PROBLEM. (REMEMBER I'M HAVEING A HORRIBLE PAIN DAY AND ALL I CAN THINK OF IS HAVING EVERY DAY EXACTLY LIKE THIS ONE ALL THE WAY UNTIL FEBRUARY.) THE PM ALSO DOES THE PERMANENT IMPLANT BUT I HAD ALWAYS THOUGHT, FROM DAY 1, THAT I WANTED TO HAVE A SURGEON DO THE ACTUAL SURGERY. I AM SO PUT OFF BY BEING PUT OFF. IF I TRY TO FIND A DIFFERENT DOC NOW, I MAY END UP HAVING TO WAIT UNTIL APRIL. DO I LET THE PM DO IT? SHOULD I JUST WAIT? AND SINCE NOTHING IS HAPPENING, FEBRUARY MIGHT BE OPTIMISTIC? JUST TO ADD TO MY MISERY, TODAY ISN'T FEELING ANY BETTER THAN YESTERDAY.
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Comments

  • I am so sorry to hear that you are feeling so bad. When you are feeling so much pain it is very hard to be a patient patient. I had to wait over six months to get my trial going (for the scs). We were having insurance issues. I just kept thinking about how great it was going to be when I got that scs... We finally got the green light and got the ball rolling in March and I'm now the proud recipient of a scs! My PAIN DOCTOR did the surgeries for me, from trial to permanent implant and follow up since then. These doctors are trained to do this procedure (well I guess maybe not all of them are). Maybe to give yourself peace of mind, ask him how many of these procedures he has done, what the success rate has been and maybe if there is a patient that would be willing to talk to you about the procedure. I told my doctor that if he ever needed to give my name to a patient to talk about my experience, that I wouldn't mind. I am very pleased with my implant and I;m so glad I got it when I did. If there is a way for you to get it now, I would GO FOR IT!!!
    Hope this helps a bit. Have a better day!
  • I'm really sorry that you had such a horrible day. Those are "reality days", where we realize just exactly the reality of our lives with our conditions left untreated.

    Can you call back tomorrow when you feel better and talk to them and get a clearer picture on things?

    My PM doc did the surgery and I never doubted his ability for an instance!

    Terrie is right, why not ask questions about how many the doc has done and what success stories and what not so wonderful stories.

    I hope that you don't have to wait until next year before you can have a trial.

    Hang in there,

    "C"
  • Stockbroker,

    Your post has me in tears. I had my trial before Labor Day. Had 50% reduction in pain. The doctor who did the trial didn't want to do the permanent unless I had 80%. I was suppose to be referred to a surgeon who specializes in cervical implants. I am still waiting. I used to call every week. I got so frustrated with the entire process...I gave up. When I started this process I was so optimistic. My insurance had approved everything. So much time has past that I would probably have to do everything all over again. At this point in my life, I wouldn't pass the psych evaluation because I am so depressed. I have also allowed "fear" into my thoughts. I have read good and bad stories. I certainly don't want to be worse off than I am. Maybe next year I will try this process again.
  • I'm bummed. I was wondering what the latest status was for you. Don't give up! Hey 50% reduction is a blessing to someone in pain! Why doesn't that doc understand that? Did you tell him you'd take 50% any day?

    Bummer ... hang in there and stay focused!

    "C"
  • An SCS trial is considered successful if it reduces pain 50 to 60% and up. If it's lower, then they won't proceed with surgery. That's what I've been told. And they hope to reduce or eliminate a need for oral medications. It's not uncommon to have someone with an SCS who still has to take something for breakthru pain.
    Success is measured differently when it comes to back surgery. I read online that the procedure is technically successful, and elimination of pain is a consideration, and is not expected to completely go away in all patients. Everyone is different. My surgeon told me last year that back surgery is to relieve pressure on a nerve, not to eliminate the back pain. And also that I will always have back pain. They hope that it would be in the 1-3 range. But a lot of us are in the 7-10 range with or without medications. The hope is that the meds will bring it down to 0 to 4 range. This is solely my observation and opinion.

    I think it worth 75,000 dollars for a 50% reduction in pain. No amount of money is too much when seeking to improve quality of life.
  • KCROC: YOUR STORY WAS SO TRAGIC IT MADE ME FEEL LIKE A LITTLE BABY FOR WHINING. HERE'S WHERE THINGS STAND NOW. YESTERDAY, I CALLED THE PMS OFFICE AND ASKED ME TO SEND ME A RELEASE FORM WHICH FILLED OUT TODAY AND FAXXED TO THE NEURO'S OFFICE. I MADE A LITTLE NOTE ABOUT GETTING THE BALL ROLLING AND THAT SURELY THERE WOULD BE THE CHANCE OF A CANCELLATION BEFORE FEB. I KNOW IF I WERE TO TRY TO FIND ANOTHER SURGEON IT COULD TAKE FOREVER. PLUS, THERE REALLY IS THE CHANCE OF A CANCELLATION. I ALSO PLAN TO TALK TO THE PM ABOUT HIS DOING THE SURGERY BUT THIS WOULD BE AWKWARD. I SENT THE REQUEST OF INFORMATION TODAY. THEY HAVE TO SEND THAT INFO OVER THERE. I HAD ALWAYS HAD A GOOD RELATIONSHIP WITH THE PEOPLE IN THE OFFICE AND I HAD TOLD THEM THAT I WAS HAVING A BAD PAIN DAY. PEOPLE OFTEN END THEIR POSTS WITH QUOTATIONS. I'D LIKE TO FINISH MINE WITH A QUOTE FROM A WONDERFUL OLD FRIEND. I'VE RELIED ON THIS ADVICE MANY TIMES. READY? HERE IS COMES---"Y'KNOW, SUE, SOME TIMES YA JUST GOTTA DO IT DONJA"? THANK YOU, SUSAN.
  • stockbroker. Stay in their face and call every other day if you must. You know the saying " the squeaky wheel gets oiled first".
  • Hello Stockbroker,
    Many have the life of pain you describe and although we all understand your angst it is never easy dealing with this and trying to be rational at the same time, pain does that to us. Even experienced pain patients cry, inside, and we have mastered not to let it all out, we have all, as I have done say things in the heat of the moment through the pain that we should have not, even to our nearest and dearest.

    It is frustrating and nobody would say it was not and as you said, saying one thing and doing another can differ, pain heightens those episode of disappointment, be they real or just in our heads and managing them more effectively helps us and those around us trying to help. I waited 18 months for my fusion and it was not easy waiting my life and career go down the pan, I am now stronger in what I have experienced. This is pain time which goes a lot slower that real time, day and night in most cases.

    Many techniques are help for you to help yourself and we are all supporting each other with similar history to you and ongoing tribulations. Be kind to yourself and take care.

    John.
  • JOHN, YOU MENTION THE WORK THING AND FOR ME THAT'S HUGE. IT WAS IN THE FOREFRONT OF MY MIND WHEN I HEARD THE "FEBRUARY". I AM CERTAINLY NOT KEEPING UP AT THE OFFICE. I MISS AT LEAST ONE DAY A WEEK. TWO NIGHTS A WEEK I CAN'T SLEEP AND I DO A LOUSY JOB THE NEXT DAY. MY COMPANY HAS BEEN BOUGHT-OUT TWICE THIS YEAR AND I WAS HOPING THIS STIMULATOR WOULD GET ME TO A PLACE WHERE MY WORK HABITS WOULD BE MORE CONSISTENT. BEHIND THE PAIN, THERE'S A LOT OF FEAR. WITH ALL THE PROBLEMS IN THE WORLD, HOW ARE WE SUPPOSED TO MUSTER UP THE SKILLS TO COPE AND SUCCEED WHEN WE CAN'T SLEEP? WHAT DO I SAY TO MY NEW MANAGERS? MY HUSBAND IS KIND AND SWEET AND CARING BUT I KNOW HE'S SICK OF WAITING ON ME AND I THINK HE SOMETIMES JUST THINKS I'M BEING LAZY. THE DIFFERENCE BETWEEN GETTING HELP NOW AND GETTING HELP IN SIX MONTHS SEEMS HUGE.
  • I know where you're coming from; I always feel like a burden to my husband and he has to do things I can't. You're not lazy, you certainly did not ask for this to happen to you. Unfortunately this is the card we were dealt with, and we, and our family and friends, just have to adjust. It's not easy for anyone, but don't blame yourself. I get down on myself a lot and feel like a loser with no life.
    Hang in there >:D< >:D<
  • Hello Sockbroker,
    It is inevitable that you will have some control over certain element and one of you symptoms leads to another problem, I have not slept well for three months and waking at 4am which makes my days even longer and problematic. That natural constriction of the pain is not you fault and we all know you are trying your best, in the most part it is not easy for an outsider looking in to envisage how that inner pain feels to us and we have some control of the messages we send. We try every day and our performance is up and down and we can do things one days and very little the next with some inconsistency.

    Rather than looking at the whole, perhaps you as you said could isolate your problem into the most important, in reality non of us can do what we would like to do and that continual ongoing restriction hard to adapt or accept. We should not feel guilty for the things we cannot do, as that is the reality of the situation and progress in the things that we can do and have some control.

    In England we have employment laws that protect individuals from discrimination, are you a union member, have you told your employer what the situation is and do they know why you think your performance has suffered. It is unreasonable for you to expect to continue as normal when you plight is so difficult and that admission is sometime to yourself and hard to understand and express to another.

    My wife has waited on me for 15 years and she knows if I could do more I would, I am that type of person, it is degrading to accept help from another when you think you should be able to do it for yourself, no shame in acknowledging your limitation even to yourself and I am sure deep down your husband does not think of you in these terms, it is hard for him to do and say the right things and chronic pain if nothing else, is always inconsistent. I lost my job and had three young children and did not work for many many years. I understand what you are going through and the innate fear of the imminent future, we will all try to help as much as possible.

    You may have had this condition for some time and kept the true gravity of its implication to yourself, if you need help seek it out and find those who can help you, stay positive and away from depression at all costs, as best you can. Try not to worry, if you can manage no sleep and constant pain, noting is out of your reach.

    Take care and be kind to yourself, it is a long journey.

    John
  • Stockbroker-
    Prisoner of your own body? That is the only explanation I could give my wife after being completely consumed by my back pain after the car accident. I never understood what it was like to be constantly in pain. I have a few friends and relatives with back issues and thought they were just complaining all the time or being whimps. Well was I ever wrong. I got to the dark place where a lot of us have been to where the next day is just not foreseeable. After going through the initial routine of physical therapy, then dumping that for chiropractic, then having him fracture a vertebrae during treatment, then back to therapy, aquatic therapy then paying through the roof for body massages. Man, it would never end. I did eventually get a really good pain management Dr and things did improve, but strong meds just masked the issue and I made my injuries worse. I was highly encouraged to receive all types of injections to remain a long-term patient with the pain management Dr., but for me the injections didn’t last long enough. I was letting my work down. By 9:00 in the morning I was in soo much pain I couldn’t concentrate on the simple stuff. Come lunchtime I wanted to leave and go home to bed to hide, but I realized I was a prisoner of my own body and it didn’t matter where I was, It was in me. I felt violated that this happened to me, some question my pain levels or others just joked about it. I felt like I let my 3 girls down by not going to the park, soccer games or that bike ride. I got to the point where I couldn’t even mow the yard or maintain the house. This monster that was consuming me was taking my ability away from being a father, husband and the provider. I am so fortunate that my wife has known me since we were just kids and she truly understands what I have been going through and has never made any judgments against me. It did get to the point were the meds and therapy were not enough. I did qualify for the Medtronic’s Spine Stimulator permanent implant just 4 weeks after the trial. I think I was very fortunate for the short time frame from wanting to try it to it actually becoming a reality. I talked to everybody I knew, and everybody they knew to try to find that right neurosurgeon. I listened to everyone’s complaints and testimonies and pretty much decided who I was going to let do my surgery. I have had my implant in since August 6th; first month was really great despite the 2 weeks of post-op pain. The 2nd month I got the programmer adjusted and was getting some inconsistant results. I will say I am not at all happy with my implant incision area, which is right along my belt line. I have had a lot of new pain this past month and have become somewhat freaked out. I went to my pain management Dr. today to discuss my wounds and concerns and they went over my chart with me over the last 4 years and I was very surprised on how far I have come. So what happened just recently is I got comfortable with my new level of pain and started focusing on the new pain. Becoming consumed by this is something that I believe is natural, and if it's regarding pain, depression, or anything negative it seems so magnified. My boss told me before my surgery I was like a wounded animal. He didn’t explain until a few days later when I asked him about it. He said a wounded animal is an unhappy animal. I then had a vision of a wolf with a broken leg and imagining the pain, anger and frustration. I am not one for fancy words or advise but I can only hope you find a pain management Dr. right NOW that will work with you and get you to a certain level of comfort, help relive the pain, any muscle spasms or nerve pain, help get a whole night of sleep and let your body recharge itself and just basically give you a break. I can say that the SCS doesn’t take the pain completely away but it does effectively distract your brain from getting all of those messages of pain and after a while of having it, the sensation becomes somewhat unconscious and then you remember, Oh its on. I know this is corny but try not to let the timing of your plan overcome you, because it will. Don’t set the expectations too high because you will be let down. Just try to make it through today and hopefully tomorrow brings less pain. I hope you find some comfort in what I am trying to explain.
    Sincerely, Bobby

  • Bobby,

    Reading your post reminded me of something I was told many moons ago ...

    Life doesn't necessarily get better, it just gets different

    So for pain

    Pain doesn't necessarily go away, it just gets different

    Just a thought anyway.

    "C"
  • You have just articulated in one post how everyone here feels, I couldn't have put it better myself. It was really touching and candidly thoughtful and I sincerely appreciate it. I understand how our lives revolve around pain, and how we go thru leaps and bounds, subjecting ourselves to painful procedures, and having no guarantees, in order to find substantial relief. Our quest is just to regain some of the old life we lost due to pain. We get tired of living life on the sidelines, outside looking in. Being envious of the healthy and vivacious, and feeling very old before our time. And having our hearts heavy with guilt, because we feel like we are a burden, and not doing our share.
    We have to remember this is not our fault, no one asks for this. I struggle to maintain hope each day, praying for a better tomorrow.
  • Two nights ago, I wrote you a long "thank-you" post because, as you could tell, I really needed some encouragement. Your words were beautiful and wise, I had been living with a three week pain flare and finally took some Lyrica. This quickly made me very sleepy and I fell asleep writing my thank-you post. In fact, when I turned my computer on the next day, there was my reply. I don't know why I erased it rather than sending it, since your comments moved me deeply. It was morning, I was late and I would have wanted to review what I said before I sent it. I had sent a PM that same night and felt the need to double check that I hadn't said anything stupid (as one can do under severe pain and frustration), Here's what I figured out was so frustrating. I have been in pain for 10 years. By all the science, my pain ought to be dramatically improved by a neurostimulator. I have all the pieces in place, I just can't have the stimulator. This is hard. It is especially hard for a self-confessed "control-freak". Its like being very thirsty and someone is holding a glass of ice cold water but telling you that you can't have it until tomorrow. So, I think I've figured out my frustration. Here is this medical equipment that should help me but I may have to wait months to get it and, it seems, things are moving v-e-r-y v-e-r-y s-l-o-w-l-y. In the meantime, I am so incredibly focused on my pain which, under the circumstances just seems worse (plus it really has been worse). And, my work life is so busy right now. If those doctors think I can just drop everything, I can't. So, I broke down and took yesterday off. I took some Lyrica which always puts me to sleep. I slept all day and all night and felt (and feel) really okay today. I'm going to try not to obsess over the SCS and just live my life as if this is it, I have many business obligations. I have no control over when I will be told the trial is ready or the permanent is ready, This is very difficult for me. I do a regular weekly television show. I have so many other obligations. My industry is in turmoil. So, I've decided to put the SCS out of my mind (as best as I can) and go on with my life. The rest I can't control (which I hate). If I have lived through everything I've lived through, then I can live through this. If I don'y know when this all may happen and it, therefore, may take longer, then I can live through that. The reason I can live through that, in no small part, is because of you all. THANK YOU, SO MUCH. EVERYONE. Susan.
  • I saw my PM on Thursday. I really, really like him. He's from Nigeria and he writes notes to himself on his hands and on his "pants" (as he called them. The nurse corrected him that he writes on his scrubs not his pants.) I found that funny. He always makes me laugh and puts me in a happy mood. That being said, I am retracting my previous post that I can live with all this uncertainty. For those of you who have gone through the process, does it seems as though the insurance process for a SCS is much more complicated and takes a much longer amount of time than, say, a laminectomy with a fusion? The PM gave me the insurance codes so that I could call the insurance co and see if I could move things along. Had the doctor's office sent in the request for a predetermination marked "urgent", an answer would have been had within 48 hours and the letter mailed out within 10 business days. "Could you mark it urgent now?" I asked. "No, because the process has already been started. "Well", I asked, "what if the doctor resubmits the paperwork and marks its urgent". You can do that but this paperwork is in progress already. "But you told me you have 15 business days to make a decision and then 30 business days to mail out the letter.""Is there any other information you need, is there anything I can do to speed this up? "No." And then my frustration level soars and I think my pain does too because I have never had such bad pain for so long. So I was wrong, I can't just live with this uncertainty. And now we're coming up to a really busy time for my business. Plus, my office is combining with the office of the acquiring company at which time, I'm moving to an office much closer to where I live. I can't just drop everything when the insurance is approved (I actually typed "improved" Ya Dr. Freud.) And then there's Christmas. Its making me crazy. I called the PM and suggested we just postpone the trial until after Jan.1. Then, I can schedule business appointments, etc. without worrying when this all is going to happen. The NS who's supposed to do the permanent implant has a psychologist working with him. Do you think this psychologist would be able to offer up some suggestions on how to live with all this uncertainty? I am clearly a very impatient, controlling person. (But I do have some good qualities.)
  • You dared. You succeeded.






  • is just an extra hassel we don't need.

    You do need to plan your life and I think the Gods - sorry doctors (lol!) forget that sometimes.

    So I hope you find some relief. Happy days.

  • StockBroker - I apologise for any offense, I mos certainly did not mean to upset you.

    Sorry.
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