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Thread: Long term pain management - HELP

  1. #136
    Join Date
    Mar 2008
    New Bern, NC
    Susan, I wasn't allowed to ride a bike until I was fused either. Now I am waiting for my right leg to get strong enough to get back to bike riding. At the gym, make sure you are sitting upright on a stationary bike. Don't use the recumbent bike.
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F.

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  2. #137
    Join Date
    Jan 2012
    Yacolt, WA
    Re: MD at health center at University of Texas: back in the 1960s the medical community did not know about prostaglandins and dysmenorrhea. There was a contingency of MDs who genuinely thought that cramps were caused by psychological problems. That was also a time when most MDs were men.

    Sally: thanks for the information. Right now, I am afraid of falling until I am fused. Maybe then, I will look into a Townie. I'll try a stationary bike in the gym. I will sit up straight....Thanks for the info. My right leg is also weak postop, Dr. Hu repaired a stenotic right L4 which is great now, but left my R leg weak.

    Last edited by susancook; 08-08-2013 at 11:59 AM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  3. #138
    Join Date
    Jun 2004
    Suffolk, UK

    Pain medication

    I was interested a while ago to see that a member takes klonopin for pain. I am on pain patches and have to take nurofen and paracetmol as required too. I think its awful when Drs think you have a drug problem, I sometimes have to take a lot of painkillers especialy if I overdo things. I do wonder if the pain management clinic at Stanmore is covering up for a specialist there who wouldn't do any more surgery a few years ago. He removed the rod about 15 years ago as it was infected but has never replaced it with anything, he said it wasn't worth the risk, I use oxygen and have a ventilator. My partner went to see him a while later and he first told him that he could perform surgery then when he realised he was my partner said he couldn't as it wouldn't be worth the risk either, he had a harrington rod fitted about 30 years ago there, he isn't in as much pain as I am, he does use a ventilator at night. I only had an MRI scan with the pain clinic. I don't think Drs realise how much pain can reduce the quality of life, I'm stil quite cross that I am now using oxygen due to lung capacity, I was told my back wouldn't get worse if the rodwas removed and my breathing would get worse with another operation, how can oxygen be any worse!!!

    I look forward to your comments.

  4. #139
    Join Date
    Mar 2010
    While I'm not familiar with the brand names of the meds from the UK, I know that some of them are the same thing as over here in the USA but called something different. I take Klonopin for muscle spasm. That's how it helps pain. It's not a pain medication.

    It sounds to me like you need to find a different doctor, especially when he won't help your partner because he's with you! Honestly, for us "lifers", the decision should be up to us whether or not we shorten our life span due to pain meds. We should be able to choose quality over quantity. Honestly, for me I'd rather live a quality life that is shorter than a long miserable life. I don't really understand all the hoopla about worrying about addiction in a life time pain patient. Who cares? Now, I do understand the worry IF a person truly is NOT in pain and just wants the drugs. There's a whole different world between the two kinds of people. I do know someone who is a lifer but also has AODA (alcohol and other drug addictions). These people are the toughest to treat because they have real pain but also want to get high.

    I used to be on pain patches. I've had a few instances of being on them for a year or two at a time. I really don't like them because they seem to lower my pain tolerance and I end up taking the oral meds anyway. Coming off of those patches is a real bear, too!!! The skin burns all over like a huge sun burn, along with cold sweats and diarrhea and severe muscle pain for me. It's just awful, so I try to avoid them if I can. I hope they are helping you.

    Your lung capacity could be why you can't have more surgery. I'm not going to be dogmatic about that since I'm not a doctor. My doctor told me that lung capacity actually decreases with scoliosis surgery. If you are already on oxygen it just might worsen things. By ventilator, I'm assuming that you have some sort of pressure assist breathing device. A ventilator over here is a machine that actually breathes for you and you have a tube inserted down your throat or through a stoma in your neck. I certainly hope that's not the case with you. You might try talking to a doctor about the breathing issues with another surgery.

    I certainly wish you all the best.
    Take Care
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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