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Opinions Needed: What do you think is causing my pain?

RasettRRasett Posts: 9
edited 06/11/2012 - 8:49 AM in Chronic Pain
Hello Fellow Pain Sufferers,

I have not posted in a while, but I do check in regularly. I pray for all of you, that you may find relief from your pain.

I would like to see what opinions I could get, on what may be causing my pain. I would greatly appreciate any input.

I will try to make it as brief as possible.
Jan, 2008...Spinal Fusion...PLIF L5/S1. Had a quick healing process....Successful Fusion...Dr. said I was way ahead of normal. Down to one hydrocodone 10 mg per day.

Three months later...started back to work...doing great untill I lifted/moved several very heavy items.

Pain came back in my lower back, and left buttock. Had MRI'S...Nerve Test...Dr. could find nothing.

Sent to Pain Center...Had a series of four Transforaminal Selective Nerve Root Blocks....First two helped quite a bit....third had to be aborted....pain came back...had a fourth Nerve Root Block....did not help. Once the pain restarted after the aborted injection...the pain has never stopped since.

PM Dr. said the Radiologist report said I had abundant Scar Tissue. Nuerosurgeon did not think that was the problem.

PM DR. said that at three months...the Scar Tissue has formed at it's maximum....and that is what is causing my pain. I asked about the fact my Nuerosurgeon could not see anything on the MRI that was causing my pain. He said that happens a lot...He said some of the nerves are so small, they can't be seen on the MRI films.

During this time I had a Piriformis Muscle Injection...to eliminate that...No relief...That was eliminated...It was my request...PM Dr. said it would not help...he was right.

I also just recently had an Ischial Bursa Injection..with no relief...so that is eliminated.

I have had a small amount of relief from Massage Therapy. No relief from Physical Therapy. Tried Accunpuncture...No relief. Have not tried Chiropractic yet.

I am a 55 y/o male in good health otherwise. I am 6'2" tall, and weigh 225 lbs. I had never been to a Hospital in my life...till I had this surgery...so I am not a Hypocondriac. This pain is real...and it is about to ruin my life.

95% of my pain now...is in my left Buttock. I can push as hard as I can over the entire Buttock area, and cannot cause the pain to amplify.

My current Meds are: 300 mg Lyrica...800 mg Tramadol...40 mg Fluoxetine. I have tried Voltaren Gel on the area, and it does not seem to help. Prior to October 30th of 2010, I was taking up to 240mg Oxycontin. My Prescription benefits for the year ran out...so I had to go generic Oxycodone.

My PM DR. could only allow me 120mg IR Oxycodone...so I basically went from 240mg per day...which was providing enough relief that I was able to keep working..down to 120mg. For three days I felt like I was Three Doors Down from the gates of hell.

I was able to continue to work...but many less hours on the 120mg Oxycodone. My PM Dr. had requested that I reduce my intake of Oxycodone, in case I had Hyperalgesia, and also to let my body reset itself, so I would not have to have high doses of Oxycodone.

I went from 240mg to 0mg in six weeks time. The worst time was when I stopped the Oxycontin, and went to Oxycodone, as far as the withdrawal symptoms go. The PAIN...now that's a different story. I really don't think Hyperalgesia was my problem. I never was overly sensitive to pain in other parts of my body.

I had tried in the past to wean off Lyrica, and both times the pain level would sky-rocket. My pain has also sky-rocketed since stopping Oxycodone, so whatever is causing my pain, both meds are needed to help control it.

Sitting, and standing hurt the most. ( having a hard time finishing this!) 50% relief when laying down.

The last day I worked, was the last day I took Oxycodone.
I may have to take it, or some form of narcotic pain medication for the rest of my life, if I can't find something to relieve the pain. I am fortunate that I could still work while taking a high dose of Oxycodone. Morphine made me so sleepy, I probably would not wake up if my house was on fire.

My thoughts on what is causing my pain: I feel that at the three month period when I went back to work...the scar tissue had just finished growing to It's maximum, and while I was lifting/moving several heavy objects....the scar tissue moved onto the nerve at L5/S1...and has been there to this day. The pain came on immediately after that...it was not gradual...it was immediate.....so the moving absolutely had to have had something to do with my pain.

I am sorry for going on so long, I just feel all the factors need to be exspressed. I also have a Spinal Cord Stimulator. It helps some, but not nearly as much as it did during the Trial.

Any thoughts, and opinions would be greatly appreciated.

Thanks so very much, May we all someday, find relief, and peace. Robert in NC



  • Do you still have your hardware from the fusion surgery? If so, has anyone done a block around the hardware? Buttock area may also be the SI Joint, which is the next joint below L5/S1. A good sports physical therapist should be able to determine if that's a problem. During my recovery from my 2 level, L4-S1, PLIF 3 years ago, my SI Joints locked up and it took my therapist about a month to get them freed. I was miserable until that was completely rectified. Has anyone suspected Adhesive Arachnoiditis? It doesn't sound like it because of the sudden onset, but who knows. Those are my initial thoughts that you can bring up with your doctor.

  • Thank you, Dave

    I still have my hardware. I will ask my PM about that, next time.

    I also thought about an issue with th SI Joint. That could very well be my problem, since the pain came on immediately after my moving of some very heavy objects. I will definitely ask my PM about an SI Injection. I will also consult with a Sports Physical Therapist.

    Was your pain in the buttock area also? I do get an occasional nerve pain im my left foot.

    I will also ask his opinion of having the hardware removed, and have the Surgeon try to find the problem. From what I have read, there are only a few Surgeons in the country that do that type of surgery.

    I have also been considering going to a Nuerologist, to try and pinpoint the cause of the pain.

    I don't know if others have had this experience when going to their Pain Center, but where I go, they have so many patients, they are always in a rush to see you, and go on to the next patient. I have written notes about my condition, and what I have had done, and what helps, and what doesn't, and I don't think anyone has ever read the entire note...

    They just glance at it...pick something out of the note, and come to their conclusion. I feel they don't even listen to me sometimes.

    I thought maybe a Nuerologist might be more thourough. I have never been to one, so I don't know.

    I do know I have to take another route, because the one I am on, is a dead end.

    Thank you for your help!

    Robert :)
  • Although the memory of my SI Joint problem is distant, I remember it was like my legs were just plain stuck. The pain originated just below my fusion site around the belt line to the left and right of center. Sometimes the pain, would actually refer down the back of my hamstrings, similar to sciatic type pain but not as severe. I wasn't offered an SI injection at that time. My therapist felt confident that he could help me work through the problem. I do have SI Joint Dysfunction and have had the injections before with mixed results.

    Hardware removal is pretty common if its determined that it is the problem. I had mine taken out at 10 months and I was only partially fused. The procedure was done on an outpatient basis and the recovery was so much easier than when it was put in. My hardware would catch on the muscles and give shooting pains in my lower back. The pain usually only lasted but a few minutes but it would always make think twice before I did any type of movement. I had other issues that needed to be addressed with the hardware removal but it did help a little.

    I've never been to a Neurologist either but hey it can't hurt to talk to someone else and get a fresh set of eyes on the problem.

  • You have really helped me a lot. I thank you for that.

    The pain I have, is in the lower buttock area. It feels like a knife is sticking in it. I actually have very little pain in my lower back. My lower back pain was gone after my surgery, thankfully.

    This pain I have now, is more debilitating, because it never goes away.

    I am glad to hear that if I have to have my hardware removed, it wont be a major operation. I had fears that it would require months of recovery.

    Again, thank you so much for your help. I hope you have a great day.

    Robert :)
  • Don't get me wrong, hardware removal is still major surgery. The difference from the first surgery is they're just backing everything out. I'm glad I was able to throw some new ideas over the fence. Hopefully something sticks and if not you have at least eliminated another cause.

  • Hardware removal is still major surgery, but it is much easier to recover from definately! I had mine out after a year, the docs felt my body was rejecting the metal, but I don't know for sure. It did feel a lot better for about another year, then things started going downhill.
    I know it is hard sometimes to pinpoint the problems and unfortunately they are not always fixable. Sometimes it boils down the pain meds and that's about it. Some people find relief with other things, but I really haven't. That nerve pain does ruin your life. I don't think you ever get used to that shocking bite that never goes away, and it definately affects your life severely. I hope you find some answers that will work for you.
    Best wishes - Marion
  • Robert- I am surprised that there has been a recommendation to remove your fusion hardware, as the new bone growth around it causes the "fusion" and to remove it would seem counterproductive to fusion. As far as the meds go, have you tried Fentanyl Patches? I absolutely LOVE them after having been on OxyIR and MScontin. I am also a nurse and have seen great relief and also a reduction in prn med usage when Fentanyl patches are used. You most likely have a high tolerance to opiates so you could probably try 100mic patches and change them every 48-72 hours. I am now on 125 micrograms that I change every other day. I also just upped my oxycodone 15mg from 12 per day to up to 15 per day. I have been very successful at my job and am able to function completely w/out drowsiness and I even work the night shift. Don't have an answer for what might be causing your pain but, I wonder why your Pain md wants you to go down, then off your meds and back on etc (if I read that right). Occasionally I like to taper down and live through a couple of months of 6/10 constant pain just to remind myself that I need this stuff to live, and that buys me a lower dose for a short while. Unfortunately, I have and extremely HIGH tolerance for all medications. Sorry this is long. Good luck to you.
  • No offense intended, but no where did I recommend he have his hardware removed. I merely suggested that it could be a pain generator, which is a possibility. The hardware becomes superfluous once the fusion is complete. Depending on what type of fusion is performed will determine how much bone growth is around the hardware. In my case, my surgeon only laid down one bone bridge between the vertebrae.

  • Thanks for the thoughts. I have never tried Fentynal Patches. I did ask my first PM Dr. about it. He said with my occupation, and activity level, he did not think the patch would stay in place. I have not asked my new PM Dr. about it, though.

    No one has said for me to have my hardware removed. That was just a thought of mine, after doing some reading. My Neurosurgeon, and PC Dr. both said they did not think the hardware was a problem. I quess I am just trying find anything that may help.

    The reason my PM Dr. wanted me to wean off, and eventually stop Oxycodone, was to make sure I did not have Hyperalgesia, and also to let my pain receptors reset, so I would not have to keep going to a higher dose. I sure hope I do not have to go through this again, any time soon. This has been the most horrible time period of my life. My PM Dr. did not really give me a set time to wean off. I did it in six weeks, on my own.

    Even though this is a living hell, as most people on this site can attest, I do still have some hope left, even if it is a small ray of hope. My first PM Dr. who has since retired, says that some people with the pain I have, just have it go away after 3 to 5 years. Key word is some. I am at the three year mark, so maybe I will be one of the fortunate ones.

    Thanks to all, and may a Miracle happen for all of you!

    Robert :)

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