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The waiting game

meydey321mmeydey321 Posts: 2,435
edited 06/11/2012 - 8:24 AM in Chronic Pain
Hi everybody, this is an update from when I posted here in "Dumped", where I was dismissed from PT.

I saw pain mgt first and they believe it is the S1 nerve giving me problems in the opposite leg. I was usually having problems on one leg, then it went over to the next. I have had muscle spasms, numbness, and heel pain.
I saw NS last week. I was told if I continued to have the same pain ( I'm 17 weeks out of a TLIF/Laminectomy, and have yet to get relief) that I would have the stim trial or morphine pump option. I reminded him of the spinal headace I had the ruined the stim trial, and he might lean to try the pump.
I won't see him in 6 months, so anything can happen between now and then. I know it takes time, and I already have nerve damage in one leg from last year, despite a microdiscectomy.
I want to hear your take on two questions please
1. Is it true it can be between 1 year to 1 year and 8 months to determine permanent damage? Or does it depend on the person?

2. I would appreciate any pump experiences; the good, bad,and ugly.

Thank you all very much. I still hold on to hope, even if I still have constant back and nerve pain. My surgery failed last year, and I'm afraid it may happen again.
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Comments

  • Meydey321
    Your timing for perceived improvement may be correct on the basis that this is about the time span for total recovery and as you say different for every individual and on a case by case basis.

    My failed fusion in 90 took some time to determine the total impact and evidence here would suggest that collective surgery does take us away from our initial goal of seeking less pain as a consequence of continuing surgery. Although some deterioration is always possible with future intervention that should not put you off and as has been said before we only hear of the cases that have failed and statistically based on the total operations performed a positive outcome is possible.

    We would enter the next surgery with the same hope of improvement and so we should, we do and should expect the doctor to be positive and this is the case, any intervention is about you and the improvement you will glean as a consequence based on you specific diagnosis and collaboration with your surgeon.

    Waiting is never easy and each treatment need subsequent time to see the overall effect and improvement, we all want that time to be shorter and get on with our lives. The interim time is up to you to seek an improvement for you, if you resist you are only resisting change in yourself; it is you that will go home with the pain and your life it will impact on. Change and acceptance is never easy and the preferable notion of PM is to use an array of simultaneous treatments to have the best effect, Sternbach et al.

    I will not be a victim and not let the pain win or beat me, many here use every nuance of energy and guile to manage it more effectively, this is about me and my quality of life, as you I am always in some pain and PT is never easy, I have no sensation in my left foot and omission of any ankle jerks, it is not easy, every day and most nights. I work and have three children, they need me, good or bad.

    Take a beep breath and find out now what you need to do for you, use everyone’s expertise to help you and stay positive.

    Take care and be kind to yourself.

    John


  • meydey

    i am an RN and i can answer your pump question. i have worked with many pumps in the community since i am a visiting community nurse.

    i must say that they are a pretty good. the only downfall is that u have to carry it 24-7 and u may need ISI site changes frequently. generally the med is infused subq otherwise it can run IV. docs will run a basal rate- continous flow and they will also order a bolus- for break through pain. it may take a few days to get a good basal rate but u use your bolus as needed.

    re failed surgery . . .i had posterior fusion c1 c2 twice. first time it failed. i stuck with the same surgeon because i figured he could not mess it up twice. lol. besides he was highly recommended by my friends who work in the OR with him.

    don't stress over it. u gotta do what u gotta do. u will get through it. email me if u have more questions. hopefully this helps.

    ps when u transition from po meds to pump be careful not to OD. your doc should give specific instructions to the nurse on how to switch u over.

  • Jon, I always appreciate your eloquent responses and thoughtful insight on how everyone's pain here affects them. I always get hopeful about the latest technology that may improve our quality of life. I thought at one point I'd get an artificial disc, but I learn since I have DDD in all levels of my spine, that it wouldn't be prudent. Keep fighting the good fight, and also keeping us in touch with our true feelings and encouragement. I hope that you will have the treatment and expediency of your needs met. I have read from you and Jen, and others, of their experiences in the UK. No system is perfect; I have to deal with a mountain of debt; I know that the neurostimulator can run us here across the pond 75,000. Has your consultant ever considered you for one, or a pump? I wonder if it is cheaper there.

    Hi Roxy, thank you for that info. What exactly is an ISI site? I'm sorry you had to go thru a failed surgery, and the level is high. Correct me if I'm wrong, that's close to the atlas isn't it? What do you do if you have to turn your head when you drive. It must be so difficult, I'm so sorry. Yes you're right, we have to do what we have to. This current quality of life is not enough to settle with. And we both realize that all the pain won't be knocked out. When pain mgt wanted me to see a surgeon again, I decided to go with a NS for a different perspective. My last surgeon last year was a spine orthopedic. He too is highly respected and conservative. The only issue I had with him was that I was not told all that was wrong with my back post surgically. I went around feeling that I somehow failed everybody, until I saw my reports when enroute to NS. I was shocked.
    I do have another question- I read there are 2 stages you go thru to be selected for a pump. What do they do after the 1st injection. Thanks a bunch, and I pray your recovery goes well. Hang in there >:D<
  • hey meydey . . . .isi is a small needle that is put subcutaneously. it it covered with a clear adhesive dressing. the pump has a tube that is attached to a bag of narcotics and it will infuse med via needle 24-7.

    from my experience with pain management for clients the doc will always try meds by mouth first, then patches then pump. but again this is my experience from working as a community nurse with various clients with all kinds of diagnosis.

    when it comes to nuuro and spinal issues . . .not my field but i am familiar with pumps. re: stages that your doc refers to i am not really sure.

    i have not yet gone through PT. i have been in this collar since May. lol ...long haul for me. i was told that i will loose minimal rotation of my head. doesn't bother me. just want to loose collar and get my head turning.

    chat soon . . .hopefully above helps
  • How are you and your son today? I know all about the not stopping moving with your son, mine has ADHD. We're both pretty busy :)

    I was doing some more reading, and it was mentioned that they detox you prior to the SCS surgery, but didn't say if they do the same for the pump. Is it done for both?
  • not from my experience. u will want to transition from current meds to pump properly. remember to ask for direction from your doc. we set up lots of pumps in the community. not sure of your neurosurgeons protocol but here in in Ontario visiting community nurses admin and set up pumps as per doctors orders. we do lots of teaching and troubleshooting too.

    i am actually great today. son is excited for halloween. me too. i am going to be INJURED thanks to neck brace attire.

    went to NS today. c1 c2 continues to fuse. losing neck brace on dec04. he is being careful and he is scared to let me out of the brace since the last bone graft slipped out.

    so far so good. CT scan dec2.
  • meydey
    how old is your son?? u must be busy with him. i think my first fusion failed because i was chasing him around to much. lol. i told my ex that after this second surgery i was not to leave couch for a month. was hard but i got through it.

    i literally was confined to the couch 24 7 for the first month post op. saw very little of my son but i did it.

    now i need to get through 4 more weeks of brace business.
  • He's 14 and all over the place. He talks a mile a minute without meds; he is making up time for not speaking until 3. He went to special ed at school, and then the flood gates opened :) He's a wonderful son; very loving and sensitive. If it wasn't for him and his sister (11.5), I don't know how I would have survived this summer with the fusion. They helped out so much, and still do.

    I'm glad to hear the brace is coming off, and hope things look good on the ct. I'm not doing anything tomorrow; just staying in and watch basketball.

    If I went out, I'd be the hunchback of Notre Dame :)
  • hey
    lol re hunch back

    i went out as injured. just added a crutch to go along witht the brace.

    counting down to losing the brace. 4 weeks two days.
  • I hope you all had fun. I'm glad you were able to spend a good time with your son. Did you eat some candy? My vice is chocolate.
    My husband's sciatica was acting up this weekend, so me and him were down together. His back bothers him from time to time, but he doesn't take anything on a regular basis, and he is functional. He works so hard, and I don't mind rubbing his aching back at night.
    I'm still the same. I couldn't get out of bed til noon, despite taking Naproxen early in the morning. With the weather cooling off and all, I think it's the DDD wreaking havoc. Also I have arthritis everywhere else.
    How have you been? What do you do to ease the pain and stiffness that fall and winter bring- any ideas are greatly appreciated.

    PS Is it 2 more weeks before the brace comes off? When it does, you need to celebrate. I know you'll be so happy <:P
  • AT 18MOS POST-OP MY SPINAL SURGEON BLEW ME OFF. HE SENT ME SOME GOOFY LETTER HOW HE WASN'T GIVING UP ON ME AND HE WASN'T ABANDONING ME BUT HE WOULDN'T SEE ME ANYMORE. I SURE TOOK THIS TO MEAN THAT HE VIEWED THE SURGERY AS A FAILURE. AT MY LAST APPOINTMENT, HE DID RECOMMEND I SEE A PM FOR A SCS. SO YES, I WOULD SAY, 18 MOS--IF YOU'RE NOT BETTER--YOUR CHANCES OF GETTING BETTER ARE REMOTE-- NOT IMPOSSIBLE BUT REMOTE.
  • meydey

    i lose the brace dec 04. counting down the days.

    re pain. i have been using tylenol. i find hot baths work too. activity does me well too. i always feel better after a walk or stationary bike ride.

    ps i ate about 15 chocolate aero bars on halloween. i know the feeling.

  • roxy54321 said:

    .....

    ps i ate about 15 chocolate aero bars on halloween. i know the feeling.

    YIKES!!! I'd be running around the house bouncing off the walls!!!

    Chocolate ... YUM!
  • I've had a few; it's comfort food for me, so I have to be real careful @)

    Stockbroker, what you wrote gave me chills. That is such a cold and cowardly copout. Now I'm worrying too.
    Doctors don't like to admit failures. Sometimes mistakes are done, but others is the state of the patient. Some of us have pre existing conditions that might lower our chance of success. And I read that 40% of back patients don't get better, despite a successful surgery. Then they do more surgeries to fix anything overlooked or that may have developed right after. The spine is a strong, yet delicate body part, and once it's invaded, it's not the same anymore. I'm happy for those who have had a good outcome, and I know that back surgeons know that there are people who fair poorly. We shouldn't be left hanging, or be shoved under the rug. There is no 100% guarantee our pain will be gone. I am glad that both my surgeons were upfront with me on this matter, and I, with family support, decided to take the gamble.
    Maybe it won't hurt to talk to a pain specialist. You decide how you want to proceed. Ask questions and keep researching. And there is a wealth of experiences here at SH. Have you ever been to a pain clinic before?

    PS I'm 5 months post op and still struggling. I hope things work out for you >:D<
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