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A similar thread to "Flex"

j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
I'm sort of a mirror image. But in 10 years I've had every radiology test done that's known to man. Including the stand up MRI with flex and extension. Over 10 or more years I've had 8 surgeries, but 1 was just to replace the battery in my worthless SCS. My last surgery was a 2 level fusion, at L-1, L-2, and L-1, T12. Then a open laminectomy at previous work on 3 levels L5, through S1. And at 11 mo. post op. I'm in more pain than ever. That drugs wont control. It's getting worse and worse. They can find nothing remarkable.
So I believe I'm going crazy. And about ready for that bullet.
Click my name to see my Medical history
You get what you get, not what you deserve......I stole that from Susan (rip)
Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!


  • what has your post-surgery treatment been like? Have you been in physical therapy? I know that when I had my fusion, I really didn't like the idea of going to physical therapy afterwards. I thought, "man, they've finally put me back together, and I'm not keen on moving any of it around." I found, however, that just trying to deal with muscles used to a range of motion now being locked around metal rods, I had more pain and stiffness building up than I could stand. My physical therapist not only gave me ways of doing things that were more comfortable for my limitations, but he also uses Graston Technique, which uses metal tools to get the knots and lumps out of muscles. I cannot tell you how much it hurts (but hurts good) to have it done, but I love having the knots squeegeed out -- I can move with so much less pain!

    I hope things get better for you.
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • ouch2oouch2 Posts: 1,270
    edited 11/07/2012 - 2:21 AM
    I have been wondering how you are doing, and sorry to hear that things have not improved. I had my adr about 2 months after you, and I have not improved either, am also feeling worse.

    Are you in pain management? Have they tried any injections, physio, since surgery?Are you able to go to a pool/hottub? I see my surgeon next week (he has been away, and I have not seen him since 3 months post op) and will be seeking out ideas to help (besides all my meds)

    Please get on here any time to talk, vent, we are here for you !
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • Hi... I am following this thread carefully! I just left a posting for Jim..in the flex forum. and wish I could copy n' paste it here too!
    I do admire you Jim- you are a wonderful person who will find your answers for your pain! You have great people on here who truly care about you- always remember that:)
    ouch.. I am seeing a specialist this month regarding ADR-- not sure how I feel about it all yet.. digesting it all still I guess.
    I am tired of getting my hopes up, then crushed by yet another professional who doesn't understand life with my back, and limited mobility.
    I have worked very hard on cognitive behaviour therapy-- may sound corny to some, as I thought at first... but it does help me daily. It's like any tool in our box... gotta use it to see if it works! :)
    Thinking of you both, and like Linda, I truly hope things get better soon for you~!
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    I'm unable to stand or walk more that 10 min. I get pain around the L,5-S1 area that meds can't control. I do have pain management great guy I've been going to for over 12 yr. I had land p.t. but they just hurt me more. My surgeon for some reason didn't start p.t. till I was about 6 or 7 mo. post op. I did 12 sessions with them and got approved for 8 more. But I quit them and looked for water therapy. I did the 8 sessions and when they put the request in for more. Some one dropped the ball. And I was sedentary for about 1 1/2 mo. And it was like starting from scratch again for the third time. The last time I had a appoint. to see the surgeon. I took the x rays and went back to the room to wait. And in comes a knew P.A. that I had never seen before. I voiced my complaints. But she said I looked good and said we'll see you in 8 wk. I fused fast so I don't know what the holdup was getting me into P.T.
    They couldn't control the pain in the hosp. or the rehab center, or even now. My P.T. Dr. said the insurance wanted a urine test, and I gave one. The first he ever asked for. But I think something was wrong cause I only got a 15 day supply of the break through med. and when I called to see if a mistake was made. I didn't get anywhere.
    My feet feel like I'm walking on hot glass and it radiates up my calf. But the worst pain comes from the open laminectomy they did on previous work at L,5-S,1. The P.T. doesn't seem to be helping. I see the surgeon, or who ever, on the 15th of this month.
    I've just been depressed over how this was surgery no. 8 and I just seem worse after all of these years. I expected to be better and maybe helping others by now. Not this!
    Sorry for the Bitch fest.

    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • Sally711SSally711 Posts: 156
    edited 11/08/2012 - 1:56 PM
    Hey j.howie.. and Linda and Karen...
    j.howie.... gotta tell ya a little secret.... relating to your last line of post.... You do help people! now! You help me... and I just know others on here too. I have been a lurker for ages.. and sometimes have it 'in me' to post... and share.
    I especially follow L5-S1 "people"... and you are that. I have learned from you.. felt comfort that I am not alone when I sure feel like it... and have made me laugh at 3AM when I can't sleep.
    Now, I don't want to sound like a life coach... lol... but.. You can do it! When I get really down... I either put on a disk of great tunes I made up... or look at pics of family babies.... or pick up a Calvin and Hobbs book... and I try to find a laugh in me... somewhere it is... and I usually do find it.
    You are a strong, positive and wonderful person. You support others on here... and I get the 'warm fuzzies" when I read some of your posts.. cause you truly care.. and do share... and it helps others!
    So... we are all on a really lame rollercoaster ride... the ups and downs, the extreme highs and lows... and sometimes can't get off the darn thing!! gotta ride it out....
    Though I have not had surgery- on my back.. I have on my eyes 5 times. Each time I had to re-learn seeing... and colours... and such. It is all a Sllllooowww Prrroooggresss ride.
    I like to say.... though I am a patient, I lack patience. Still seeking it.! Then, I make up a really bad joke, or try to rap a reaaaaly bad song... and I laugh at myself.
    thinking of you.... and sending you cyber-soft-hugs of comfort... and some humour!
    And.. bitch away anytime.. that's the genius of this forum!!!
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,732
    Well I saw both the surgeon and P.M. Doc. I've got the process started for a C.T. scan, and then the pain pump trial. The insurance is work comp. So it will be a long process to get it going with them and then the approval. My P.M. Doc doesn't do them, (bummer) I've been with him for 12 yrs. But he said he would refer me to a trusted colleague. And the surgeon said he also knows a good one. The surgeon wants to do the install. So he can do some more clean up of scar tissue. (YIKES!)
    But I suppose more importantly I got my pain to come down. It's been spiking continuously between a 5 and 8. And all of the meds I take wouldn't touch it. A few nights ago my pain was at a constant 8. And I was desperate. The E.R. is something I just don't want to do.
    I remembered that a couple of years ago, Doc. had me try Lyrica, (that was the only nerve drug I hadn't tried.) I just couldn't stand the side effects. I had given it three good tries and gave up on it. But for some reason I didn't dispose of them. So I remembered I had them. At a 8 (which has never happened to me) except in the hospital, after surgery.
    Anyway I found them and took one. Immediately, the pain started dropping. And that may have saved my life. The side effects were still there. But not as intense???.... so I've been taking 50 mg. 2, twice daily. And my pain has stayed down at a reasonable 4 to 6. But mostly 4-5. So I'll just have to get used to the side effects.
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • As your body gets used to it. Note: operative word is MAY. The unsteadiness on the feet did with me (reduce).

    Really glad that you may have found a medication that helps with your pain.

    Do the docs really know what the root cause is? Or are they just addressing the symptoms because they don't know?
  • john 40jjohn 40 Posts: 190
    edited 11/20/2012 - 6:30 PM
    hang in there jim. i have been following your ride since i have started mine. i have been on and off and back on the lyrica a few times trying to find something with less side effects with no luck its the only thing that keeps the level down to wear the oxy or hydro or flex can control the spikes
    i know the last couple months with the weather has not helped ether. up there wear you are the cold has to be a little harder to deal with. i am crossing my fingers for you to come out a lot better after your fusion i know i am not to far behind you. the surgeons one in el dorado hills other in Tahoe are ready to go. but the Nero i went to say its a long way back from that surgery and i may want to wait till i can not walk or move before doing it. and on the lyrica for me the side effects seem to drop down after 4 or 5 weeks but i still have the CRS and feel like i got all timers and cant spell.
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