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15 years, 5 surgeries, injections, ablations, and still severe pain!

Hi. I have gone from an active, athletic, happy person to a life of barely hanging on each day.

Every lumbar and sacral area is fused or herniated, arthritic SI joints, partial foot drop seems permanent after 2 major neurological episodes from closing off of foremans from arthritis or something. The surgeries gave me some feeling back and some mobility but not total. The pain eased up a couple months, then returned.

The pain is unbearable from under the ribs in the back to the hips and butt and down the leg into the foot.

There is a problem with the cervical discs...3 of them,resulting in pinched nerves, however they only flare up several times a year for a week or two so that is bearable, I know when it comes it will go again, all I have to do is cut out my sewing and crafting and reading and other irritants, but it will resolve.

At this point in time I am begging the doctors for something more for relief from the pain, but I think the laws are putting fear in their decisions. I am allowed 120 10 mg oxycodone per month and 2 10 mg baclofin a day. That is it! They seem to be more and more reluctant to prescribe that. I have no history of abuse or medication seeking,.

I've tried PT twice in the past year, the first time the therapist was trying to build up the lost strength in the leg too soon after surgery (the nerve needed to heal) and ended up causing 2 weeks of painful spasms that took me back to bed.

This time the therapist keep pushing on my back and trying to "loosen it up" in the fused area, saying it was too stiff. I stopped going, but not soon enough, I am in so much pain I literally don't know what to do right now. I have had 2 toradol shots this month but they didn't help. Will have MRI Friday to see if she damaged fusion or hardware with the pressure on the area.

I'm sorry this is so long. My pain management doc doesn't seem to care, ice and heat and tens and meditation are not helping. Any ideas? Am I on an appropriate dose of medicine? How do I live another 20 years like this?



  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • EnglishGirlEEnglishGirl Posts: 1,825
    edited 09/04/2014 - 11:28 AM
    I'm so sorry to hear what you're going through. Living with unrelenting pain is so incredibly hard, in so many ways. Somedays just getting out of bed in the morning takes more than I think I have left in me. It takes more strength than many can even start to imagine. Have you been with the same doc for a while? Have you considered getting a second opinion?

    How long have you been on 4 Oxycodone a day for? You say you've been on this roller-coaster for 15 years so I assume you're not new to narcotic therapy. Most PMs like patients to be on an Extended Release (ER) med & reserve Instant Release meds like Oxycodone for breakthrough pain. I take Baclofen & thought that 3x 10mg pills was standard (I was taking Tizanidine before & took that 3x a day too). Is some of your pain nerve related? Have you tried all of the nerve meds (Lyrica, Savella, Gabapentin, Cymbalta etc) they are better for nerve pain than narcotics...which are better for mechanical pain.

    Liz posted a link to The Blend above. I think it's important, particularly staying active. I do lots of different things but I find all of them (even meditating & hobbies) incredibly difficult to do if the medication part of the blend is lacking. Exercise & PT is impossible for me without adequate pain control.

    Welcome to spine-health. ;-)
    Osteoarthritis & DDD.
  • It sounds like your surgery was fairly recently. Surgery is not done for pain relief, despite people thinking that it is going to cure their pain......that is not the intent of the surgery. The intent of the surgery is to correct an anatomical or neurological problem.
    Nerves take weeks and months to heal. Peripheral nerves only recover at a rate of about 1-2 mm per MONTh, so it can take up to two years for the nerves to completely recover.
    Muscles , especially with fusion surgery tend to stay tight, and physical therapy is necessary to help ease the muscle tension, strengthen the spine musculature around the spine, and regain and maintain tone. Over time, the stretches and excercises given, must be done every day for the best benefit. Yes, physical therapy hurts, at times, but it is important that you continue the therapy to get the best outcome from your surgery.
    Pain medications and muscle relaxants can only do so much........they are not the end all, be all of pain treatment, they are but one small part of it. The rest, is regular excercise, stretching, ice, heat, massage, TENS, injections, aqua therapy, swimming, meditation and yoga, pilates. The most important thing that you can do is keep moving, and each tool that you use on a regular basis, leads to better overall pain control/management.

  • LindasworldLLindasworld Posts: 5
    edited 09/05/2014 - 1:16 PM
    Thank you so much for the comments. This is the first time I have been so overwhelmed by the pain in all these years. I am not looking for pain meds to fix every thing, and not surgery. The most recent surgery was to remove pressure from the nerve so the foot drop would resolve, hopefully.
    I guess what is really taking me down right now is that I have arthritis in spine and SI joints, pinched nerves, scar tissue, a bound down incision, etc. etc.
    After the last surgery I was diligent in the PT as able, use heat and ice and TENS and stretching. I regained some muscle back. Then something happened, who knows what, and I am losing strength in leg again. The MRI was scheduled for today, their machine broke and had to be rescheduled for next week.

    With each level of the spine that is affected the area of pain increases. I have been instructed to not hyper-extend or flex,
    to not lift more than 10 pounds, to not twist or bend.

    Yes, I have been on cymbalta, it used to help but isn't right now. neurontin made me suicidal. I used to be on extended release opana and it helped but the ordering doctor closed his practice because he was afraid to be arrested for ordering narcotics.
    The next pain management docs ordered PT and multiple epidurals, opana ER was unavailable for a bit so they just
    changed me to the Oxycodone 10mg every 6 hrs and tizanidine three times a day. Once I had the SI ablation and the surgery to remove the arthritic bone from compressing the nerves they changed me to Vicodin and wanted me to cut down to PRN, like the pain magically went away. The surgeon was very specific that the goal was to resolve the function not the pain, but I just started feeling like its my fault that the pain is still there.

    I have managed this for so many years and I do what I can do, but right now it is so overwhelming. I turned to another pain management doctor and he put me back on the oxycodone every 6 hours and changed my three times a day tizanidine to the twice a day baclofen.

    I have been trying to express to them that something is wrong,I won't let the PT touch me until I have it checked out because I really do not believe trying to make movement and open the space in fused discs is a good idea.. the pain doc gave me a torodol injection and ordered the MRI.

    I'm so sorry to be so negative here, usually I'm the one encouraging others around me, but after close to 8 weeks of emergency room level pain with no relief I am at the end of my strength and when you tell me to try all the alternates to medicine and I have been doing them, right now it feels like you are blaming me for not responding too. Thats how messed up my thinking is right now.

  • I just had ACDF on May 16th. I too have had recurring pain, numbness, weakness, and tingling in all my extremities after PT. I'm so sorry you are going through all of this. I have found some relief using a tennis ball in a sock. I stand or sit in a chair and lean against the ball to roll it over all my trigger points. This helps me slow my breathing and pulse, as well as, relieving some of the other symptoms. I have also ordered a Theracane which basic works the same way. I don't know if this will help you, but I pray you find relief soon. By the way, I totally understand your frustration. You have been through a lot!
  • No one is blaming you for your pain.........I'm sorry that you feel that way. Is there anywhere else you can go for the MRI? Instead of having to wait for next week? If you have the preauthorization number, that's all you should need, along with the prescription to go somewhere else to get it done.
    Living with ongoing pain, and not knowing the cause is difficult, for anyone. Not being able to ger around and function , which looks so easy to others becomes overwhelming for us.
    I would suggest that you might want to find a physical medicine and rehab physiatrist. I have found them to be at the top of the list when it comes to managing both my pain, and getting answers for when things aren't going well.......
    Once you know what is occurring in your spine, and the reasons for it, you can start getting and working on a plan to get you feeling better.
    Hang in there,
  • I'm in a similar situation too. I wish there was a magic pill to make us all feel better. I agree with Englishgirl, try your best to stay active, whether that means walking from your bedroom to your bathroom once or twice every couple hours or if that means walking around the block once, or walk a mile. I thought the advice was cruel when other's with back pain and doctors said "keep moving!" But it is the key to feeling better. It can be so difficult to even walk to the bathroom but the more you do it the better you feel, even if there is some pain. I'm here if you want to talk or just vent about the pain.
  • Thanks all. was able to get the MRI rescheduled at a different facility for Monday (machine broke at the place I was scheduled). Quite frankly I would not have bothered if not for the encouragement.

    Also, went to the park with my husband and the puppies today. Did not get far, but it really was good to get out for a bit and push myself. I am in more pain tonight, but it was good to move!

    Ordered the theracane after the tennis balls did seem to relieve a little tightness over the SI joints.

    It is time to really seek out a doctor willing to help me, not one that makes me feel guilty for not responding the way they think I should.

  • Oh Linda it's so incredibly hard. I always say that chronic pain is a journey... I'm like you & I've reached the stage that I know there will never be a pain free destination. I can go for months thinking 'I've really got a handle on this!'. I advise others, I talk about my blend & my attitude. I know the answers for me. Then it all comes crashing down again! I don't even know why it happens anymore, sometimes it's a pain flare, stress, the weather...I don't know. If I think too much about my future I can become paralyzed by fear. I have 2 young kids & I can't guarantee I'll be able to get the eldest to school tomorrow without a bag to throw-up in & tears cascading down my cheeks...but we might be singing & laughing all the way!!

    All I know for sure is attitude is half the battle for me. Things are better when I'm excited about my life, my hobbies & interests. I need to be chipping away at my pain. I constantly have a plan. The next thing to try....
    Everything is easier when I have a compassionate doctor who I feel is dedicated to helping me & supporting my latest plan. Everything is a little easier when i have a good mix of meds that help me to be active & stick with my physical routine.
    I'm always tweaking something meds, therapy, alternative things. I've tried most things you can think of, from diet too experimental stem cell therapy consults. I don't go through with a lot of the experimental stuff but while I'm researching & discussing it I have something to think about.

    I guess I'm just saying, "I know!". Just because someone sounds like they're strong & have found a way to live with this doesn't mean they won't be crying them-self to sleep tonight! It's a roller-coaster...well it is for me!

    Do the best you can & if today is horrible find a way to convince yourself that tomorrow will be better. Don't feel bad about the way you handled this yesterday, it will only make tomorrow worse!
    Osteoarthritis & DDD.
  • Linda,
    I haven't received my TheraCane yet. It should arrive any day. I'm still using the tennis ball and sock until I get it. I'm glad you're feeling a little stronger.
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