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Pain is escalating! Could use a boost from someone who has been there!

ellencalieellencali Posts: 162
edited 09/28/2012 - 3:00 PM in Pain Medications
I try and try to stay positive in my posts but I'm fading! I freaking hurt! 9 weeks out of 3 level fusion. Was doing great, now Im heading down that dark pain tunnel. I cant get ahead of it. I posted prior about my PM issues...to be blunt, my PM kind of hung me out to dry. I have my ER but no IR and Im about to lose it! Did PT yesterday, cancelled today, I can barely walk...hospital bed isnt helping much...cant sit, walking helps a little. Dont really know what to do, ride it out...could use one of those "I;ve been there speeches...shit I cant even type....tell me I will get to the other side of this pain eventually
3 level fusion L3-S1 July 23, 2012


  • dilaurodilauro ConnecticutPosts: 9,839
    I know right now all that is on your mind and the pain and discomfort, but as George Harrison said "All things must pass"
    9 weeks out of surgery, and you are still a babe in arms. It all takes time. Remember, you had problems, some severe before surgery, so you decided to go ahead and have the surgery. Spinal surgery is never a walk in the park, no matter what area ow who does it.

    You need time to properly heal and recovery. Right now is a tough time for you, I wish I had a way to take away some of the pain so you could move on, but the only thing I can offer is that it will get better, It WILL
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I agree with Dilauro, He is right, the pain will subside. How about using some ice or take an old sock and fill it with instant rice.....heat it in the microwave for no more than 2 minutes.....sew up the end and use it in the area that is hurting. Do you have any motrin or aleve? Those helped me after my back surgeries to ease some of the flare ups...
    I remember physical therapy and how much it sent my pain levels through the roof, and I'm sorry that you are feeling that way. Hang in there.
  • I needed to hear that from you guys that have been there and back.....Im trying so hard to keep my head on straight tonight! I have the ice in place...dirty old sock filled with rice has been my best friend for years! Just hearing from you guys that I am doing the right things to try and combat it, helps. Sometimes its the fear that Im not going to be able to get ahead of it...I panic, if I can keep the panic away, it helps with my pain. I thank god for this sight so many nights! Again, thanks for the reply...sometimes that desperate feeling gets the best of you! You guys have made things just a little better! Peace E
    3 level fusion L3-S1 July 23, 2012
  • Heat from the packs draw more blood and nutrients to where its needed for healing. Heat also helps loosen the spasmed muscles.

    My PT instructed hot packs only to be applied 4 times a day for the first 12 weeks after fusion.

    What's your GP / specialist say about authorising medication for your pain?

    Hope your pain is reducing...
  • Just read your recent post about the difficulty with your PM, which answers my question.

    My GP has lots of spine patients and is very switched onto PM, so I have been real fortunate regarding medication.
  • I'm sorry that you are hurting so much. Sometimes it helps to put on one of those relaxation tapes/cd's.
    When my neck was so bad, I would listen to the "ocean waves", put a hot pad on my neck and pretend I was sitting on the beach, with the hot sun warming my back & neck. Sometimes our imagination can take us away from it all.
    I have Ankolysing Spondylits, Ulcerative Colitis, DDD and a bit of OA to make things fun. Most of my problems are due to inflation of many joints, tendons and ligaments. I see a GP, a Rheumatologest, an orthopedic Dr and a wonderful PM.
  • Ellencali, I hope your feeling a bit better today. I don't really have much advice other than when i get in a flare and i can't take my pill for whatever reason, my husband will give me a massage with Ben-Gay cold therapy. Its a bit expensive but works great. Take care.
  • Hi EllenCali


    I had my L5S1 done in June 2011 Tlif. I went ~14 months arguing with so called certified spine doctors, until last spring I switched. He showed me in 5min on my last round of CT and MRIs I was unfused. Anyhow then discogram before he would operate. Disco showed two more levels. So surgeon 1 made it worse by lack of proper diag workup and transfered the load onto then with the single level. Fast Forward to 7/25/2013 2 part surgery begins. Two new cages via XLIF. 8/23 unzipped out back and all knew bone grafts were done, everything scrapped except original cage, and new screws (8 ) and rods were put in. Welcome to TripleVille party of fewer.


    So I gave the history to pain where I am as I think we may be in the same boat. Maybe different spots in the boat, but same boat nonetheless. I am not at a place to do PT yet. Have not been released. I know we are all different but given our time frames being in the same ballpark, that you were caught my eye. When I was released the first time post single level after about 12 weeks, the same thing happened, and it got worse and fast. Everybody did the old 'this is tough work' routine. I said it then and firmly believe it now, even though I had to go on an expensive crusade for humane treatment. I had two doctors (same practice) say was fused. I was not, it was re-confirmed by new neuro team last Aug. so anyhow my advice...

    Only you know your own body. I would be the firs to admit I got scared more than once in the ’moment' and when in it the pain does the talking, it's like a panic attack, it only scream "need safety now!!!” as it does, but after we learn from it and try to panic less the next time, it happens, I I have been at this at this level for 3 years now, your human, don't beat yourself up, but also do your best to take into account when a line has been crossed and the pain is distorting your rational thoughts. With that said, again, only you know your body, even in pain, though its cleared when not. If your doing something that is wiping you out after days at a time, stop doing it, or better yet as often till you get a hand on why its doing this too you. Yes we must at times battle through to make progress, but constant extended pain and pain flaring is a biological result of the body protecting itself, it's doing this for a reason, it should not be ignored.

    So anyhow, it's hard to tell anybody 'what -they- need to do' in general let alone online in an Internet forum, but I offer the above as I am also a recent trip,e level fusion, and a revision with new levels hardware do over as well. I am not back to PT yet. That and the now cold/rainy fall of New England is setting in and that makes it harder. Watch the temp, humidity, and pressure. Some say its crazy, my spine does not. Those changes matter, but even more so when they happen fast (storm coming fast)... Then it really aches!!!

    Anyhow, pain is the body telling the brain it's in trouble. If its really too much, take stock when you have had time to get past it a bit, and its quiet, and then if you still there, consider frequency of what your doing, and what it is your doing (PT)

    ...and be kind to yourself as this triple level do over is not even in PT yet. Being a do over stinks, and the last year+ was hell, but I learned how to really listen when my body started talking or raising its voice. Listen carefully, and do what is needed.

    Again, same place, and there is no shame in doing it right vs fast and on somebody else's timetable. Only you know 'you' truly know your body. When its not yelling "Pain!!!!!” ...it will cooperate and tell you what it needs and at what pace.

    Keep fighting & pushing, but only after listening to yourself :-)

    Hope this helped on some level...


    PS: I am also on nerve meds for my leg, typos are an expected part of my life for now ;-)
    Jun 2011 -TLIF @L5-S1
    Mar 2012 -NonUnion @L5S1
    May 2012 -Multi Level Discography
    July 2012 -XLIF 2Cages @L3L4/L4L5
    Aug 2012 -All New Hardware @L34L45/L4L5/L5S1
    Mar 2013 -FBSS = Pain Management until they figure it out.
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    edited 10/10/2012 - 4:12 AM
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Hi Ellencali, it's been a few days since you posted and I was wondering how are you doing? I know it is tough when you don't have your IR meds or what you have doesn't work well. Hopefully, you have worked that out with your docs. Re: PT, after my refusion of L5/S1 last year I went to PT twice or 3 times and I hurt like the dickens after each session so I saw my pain mgmt doc and told him the NS had me in PT and how much I hurt and the pain doc pulled the plug on me doing anymore PT. Have you talked to your team about how much you hurt? No reason to make your pain worse so please, stand up for yourself because probably no one else understands how you feel like you do. Take care and let us know how you are doing. Jerome
  • ellencalieellencali Posts: 162
    edited 10/10/2012 - 6:00 AM
    I have gone up and down like the rest of us. I finally have my PM appointment tomorrow and to be honsest I am petrified of what Im going in thre for. I still needs meds but I have gone through horrible withdrawals from the IR opiates and am so afraid to get back on that train. I have suffered (needlessly) in my oppinion and because I do not trust that PM has my best interest at this point, I am not sure what to do. I have been really afraid to share on here about withdrawal...seems like so many you have had an easier time wiht thier docotors or just pain control in general are quick to judge. I am a responsible woman, I take care of a family, have litttle kids and this past 2 weeks, life has been hell....my kids have to watch me hurt and sick...cant really explain it to them. My 8 year old said to me...Mom, that doctor has to give you your medicine, he must must not know how much you cry and hurt. Call him and tell him or I will. She said, I cant feel your pain mommy, but I see it! He will have to see it! Sad, huh? So, thanks for checking in. I am surviving. I would like to live! Again, I am afraid of what tomorrow holds....opiates scare me now. I still take ER and to be honest...the meds are out of my system like 5=6 hours later....supposed to be 12 hours. So the horrid cycle starts again. I am lost...thanks for the reply. I wish you well, Jerome, I read your posts often! Peace Ellen
    3 level fusion L3-S1 July 23, 2012
  • Elli,
    Sorry to hear this. Is there any way you could get some acupuncture ? I have an acupuncturist who has told me to be sure to see her as soon as I can get there after surgery. My other suggestion is to forget about how long it's been and make today day one. Anxiety can cause so many issues and if you are thinking you should be further along than you are. Baby steps... I am talking to myself as we'll as you and I need to remember this when I am out of surgery. Hugs to you Elli. Let your kids love on you and give you hugs!!
    So the hospital bed wasn't much help? I am planning on getting one. My bed is going to be no help to me at all because of the pillow top and " moulding " . I hate it now and sleeping is a huge issue for me. I have a jacuzzi tub and have joked about sleeping on a mesh float in it once the incisions are healed!

    I am anxious to hear what your Pm is going to say. please continue to post and stay in touch! Thinking about you and sending you healing thoughts xo
  • I know many of us here are waiting and hoping that something is done to help you with the pain. Depending on how the PM's office is set up, it might help to talk to the office manager if you are not getting good care. Write up a pain journal detailing everything that is going on. How bad he pain is, what time of day and what makes it worse or better. Be sure to put down how often you are having withdrawal problems. Give your GP, surgeon and PM a copy of the pain journal. You need to insist on better care. There is no excuse for allowing any patient to suffer like you are.

    Praying for you,
    I have Ankolysing Spondylits, Ulcerative Colitis, DDD and a bit of OA to make things fun. Most of my problems are due to inflation of many joints, tendons and ligaments. I see a GP, a Rheumatologest, an orthopedic Dr and a wonderful PM.
  • So I gear up for my appointment. Of course no sleep so I;m a piece of work! I get there...wave at the receptionist....she says come up and sign here...you are getting an injection today! Woohoo...I wasnt informed of any such injection but boy will I take it. So I get in the room...say hello to doc, climb up gingerly on the table....he pulls my clothing back and gasps! "when was your surgery? Who did it, what did thy do, where at, were the nurses nice? OMG...the guy Im seeing almost a year now, had no clue or didnt remember I had an 8 hour surgery less than 3 months ago. Needless to say, he gave me the injection, was so nice and concerned, changed my meds a bit...gave me some IR to get through and asked me to come back tomorrow for a trial on a IFC unit....I looked it up and it seems to be a Tens machine on steroids.
    So while I was geared up for the fight of my life, ready to demand proper care, things went the complete other direction, guess when he saw the 8 inch scar on my back and I begged him to go ahead and injecct, not to worry about the incision, he changed his tune with me. Guess I wasnt asking too much...maybe if I was just calling and hitting him up for meds without having the extent of surgery I had...who knows, it was a positive outcome and I will take it Thank you to all of you that thought about me and care. This place (spine health) is the best thing that has happened to me in this journey and I give thanks to you all every day. I wish all of you one day of things going your way, just working out....its been years since its happened to me....and ya know what? It feels nice! Peace Ellen
    3 level fusion L3-S1 July 23, 2012
  • Trish323TTrish323 Posts: 55
    edited 10/11/2012 - 1:56 PM
    ... To hear this Ellen! I guess caring Docs are out there after all ! I wish you a restful pain- less night sleep!
  • Wooooo hooooooo! Glad to hear that we BOTH had good visits with the PM this week. It sure does make a HUGE difference in our stress and anxiety levels when we know somebody is listening AND actually hearing what we are saying.
    L5-S1 Fusion, Discectomy on 7/10/12
    Herniated Discs at L3-L4-L5-S1, Spondylosis, Spondylolethesis at L5, DDD, Partial CES, Lumbar Facet Arthropathy
    Chronic back pain since 12/2010 (slip and fall on ice)
  • All the best that the injection helps and follow up treatment also adds to your recovery.

    You deserve to have good pain management dr that works co-operatively with you to get your pain managed and root cause identified.
  • Keep it up demanding adequate relief from your pain and diagnosis of its source. Pain can just about make you lose your mind, especially when ignored and not properly treated by drs that lack compassion or expertise. It is very hard to fight through the exhaustion, discouragement and disability after repeated failed requests for help. Now that you might be feeling a little bit better, try not to over do it with your activity. Use this recent boost to ensure continued treatment with the dr., what's next after the injection, etc.
  • He sure sound like a good one. Getting along with your doctor can make such a difference. Be sure to take it easy for a while. I felt so much better after y first injection that I went out in the garden and over did things a bit. I was so sore and achy for several days.
    I have Ankolysing Spondylits, Ulcerative Colitis, DDD and a bit of OA to make things fun. Most of my problems are due to inflation of many joints, tendons and ligaments. I see a GP, a Rheumatologest, an orthopedic Dr and a wonderful PM.
  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 118
    Way to go Ellen! Some good luck or positives for a change! Nice! Sometimes everything clicks and someone responds. You mentioned something in your earlier response to me about people on the these boards some being quick to judge - I totally agree with you too! You would think on these boards of all places, you would receive a bit of compassion and understanding but there are a couple of folks who love to act like they are all that - but, forget about them! The majority of us are here to support you like you support us. Hope you luck and circumstances continue to improve. Best, Jerome

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