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Surgery question - pain

I don't know whether to start a new discussion or what, but wanted to find out from WLlady and Robynx (and any others) what there pain level was bf surgery and after surgery.  Also, if you have connected with others that have had surgery and reported back to you.   I just read that surgery can help for pain that is radiating to your legs, but probably won't if it is entirely in the back area. (mine is totally in the back) .  Where was the site of most of your pain?  I didn't think surgery was an option until I got on this site. 

 I can only stand about 5 min bf pain level 8 and walking around the block gives me pain level 8.   I can't work in the yard anymore at all.  I'm trying PT and pilates from professionals who specialize in scoliosis, but I don't think I'm seeing any pain relief.  Today I did some pilates and PT and it started hurting worse.  It's so frustrating.  

I feel like a "cry baby", but I also feel desperate.  I'm also depressed bc my husband is so active and I feel like "debbie downer".  I wish his life didn't have to be so affected bc of my pain.  

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1

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  • hi scoliogirl,

    before my surgey had had pain lv's that shot up to a 10 and would bring tear's now and then when it shot too much with no relief, but my pain was nerve pain and it would shoot across my but, some times I got a groin pain that was so intense I would not be able to put any weight on that leg for a spell, if I would sit down and let it easy up before I tried walking again, I all so had pain that went down my leg, that would start as a heavey ack and grow to pain. if it was a lv3 two after 4 to 6 hrs of a acking pain it would start to feel like more. so I had pain in a lot of places. also in low back. if they took one pain away with injection then I would start to feel other pains. pain came and went depending on what my activiety lv was. I could not do pilates and I am not a fan of it for it stresses the back. but you are going to someone who specilazes in it for scoli so that should be diff, if it is hurting you, back off ask to modify that move, my yoga instructor did that for me.

    now lets talk about pain after surgrey. I won't lie, when I woke up the pain was off the charts. I was so drugged all I could say was wow I hurt all over. the groin pain I felt now and then that hurt so bad I could not put weight on my leg was back and off the pain chat but constian. pain down leg was constantant and that was back, my hips hurt, my back and every muscle in it hurt. I was on 2 forms of reg pain meds, two forms of nerve pain meds and two form of muscle relaxants, all at the same time. I only have a few hrs of menories for 11 days in the hospital because of the meds, which folks keep saying is a good thing.  my aunt said she would be sitting with me and I would moun and grone while I was sleeping so loud the rn would come into my room and hit the pain med pump while I was asleep.

    I was told before surg, if you have leg pain before you will have after , and more intencse, but for a short time after the surg. there deffintion of short and mine are diff...lol I still had an uncomfitale nagging ack in my groin from time to time. with a little pain on and off in that hip aera, and I still feel that line down my leg but not as a pain, it is some what numb so some times iches and other times feels cold. so many of thos nerves were all pinched before and need to heal now. for the most part I do not have the same pain I did before surg. some of it but back ground if that makes sence.

    my heavery pain now that makes me sigh of cry out is diff. its around my ribs, its feels like muscle pain rather then nerve pain, I have what feels like someone zapping me and at times a bee sting. that electrical feeling pain is nerves, WLLady was told thos aeras are waking up, I was told in my case its because of nerve damage from the surgery. I had a grate surgon but hes not good at all in talking or explaining things. the va would only give me pt for short time, I was not even out of my back brace or fussed when they rellesed me.

    so some of my pain now may be is of my own doing as I try to rehab my body myself with no guildance. I was left with my left leg numb from center of back rapped around left hip, groin area all the way down left leg to and including my big toe. I also have a numb patch on my right leg from knee down to ankle but only on the front and inside. the surgon thinks the foot is price of the surgrey but still thinks some of the leg will come back, just can't say.. also I have a muscle from groin on inside of left leg down about 8 inches that I CAN NOT MOVE at all. it is paraylized. I have had to teach all the other muscles in my leg to do its job.

    streght leg raise with mu left left took like 6 months to be able to do, I can just now do them but no more then 10. but I can walk 3 miles and even walk some backwards. I do still have drop foot too, not uncommon with this surg.

    so let me say this, right after surgrey I could only drag my left leg while using a walker, when they sent me home 30th of dec from rehab I was using a walker, I tossed that walker when I got home and taught myself the cain. this june 14 2017 I tossed the cain. I do have a strenge gate and slight limp. and now I am trying to work on other parts of my body, I have not given up yet. I have issues on my entire left side to uinclude pain in my neck on the left, but my curve was to the left and I have so much damage.

    to end this let me say it is a big surgrey, there will be pain. but there will also be inprovements. you will have to work hard for recovery. yes I have ups and down, step forwards fall back again. I do belive in being honest so you need to know its not all up hill. while I was in the hospital I said to my aunt one day I don't think I am going to make it cause the pain was so high, but then the next day I told her it was good I did this when I did so that I was strong enough to fight through it. at 58, I ran on tred mill only cuse it gave, could still swim a mile, and did adv yoga. that was all getthing worst each month. I was getting weaker each month, that's why I did the surgrey,

    also I was at 60 degrees on the bottom and 22 on top and it was still growing. I was afrade if I waited too long I would be in a wheel chair and I really did not want that. I knew the surg itself could do that to me, but I had fate in my surgon and in god. just reamber no surgery is the same, this is just my journey, WLLady's is same surgrey, but different journey, follow me. I will say hard work good attuited is key, and you have to have a GOOD support system, I did this alone basecle not even my little brother came to hospital to see me. this site has helped me so much and I hope it helps you. those were all good questions I hope I was able to help.

    this is getting too long so done for now, asked the next question or ask for explaination of something I just said

  • o I see one question I missed yes I talk to a friend of mines husband who had the same surgrey same surgon 1 befre and 1 week before mine. he did very well but he had the surgrey for a diff reason ant the sclio like I had. i should ask him to join in on this forums. also i am to meet a lady a few block from me who had the surg yrs ago but it put her in a wheel chair. so many folks out there and out come vary grately. becare not to compare. each body is unquily diffrant and we each respond diffirantly.

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  • Thanks ladies,

    I know the pain and recovery process takes a long time, but if I could have less pain for the rest of my life, it would be worth it. I am just afraid that the pain may get worse or like Robyn said, the lady was put in a wheelchair.  Robyn - the fact that you can walk 3 miles is incredible - I can't do over .5 mile now without considerable pain.  I have heard there is a 50/50 percent chance you could have more pain or less. Its like a gamble (although I don't) and the roll of the dice is what you get (everyone gets a different #)  If you talk to the lady in the wheelchair, could you ask her more specifics - like when it was done and how bad her scoliosis was, etc.

    Meg- thanks for your comments as well.  Researching the best surgeons with the main questions being "how many of these surgeries have you done" and what is your complication rate?  And then another caveat - insurance- ugh. 

    Thanks again.  I will resume a conversation regarding my scroth therapy and pilates after a longer time period to help those who may not be able to have surgery or want to try before surgery.  

    Until then, I know I can post any question and someone will answer - that is most comforting.


  • I was never given the 50/50 odds.  I had a huge surgery and "how many of these have you done" was my most important question.  btw, I was 60yrs old when I had my surgery and I'd had scoliosis since I was a kid.  I was very active and at the gym several times a week for as long as I can remember.  I found that if I continued to research the best surgeons the same few kept popping up.  In the long run I was referred to one of those.  Insurance...well, we worked it out.  Good luck!

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  • WLLadyWLLady Ontario CanadaPosts: 1,486

    Sorry i am a little late to the conversation here....been a busy couple of days.  

    My pain started as a mild backache when walking about 500 yards. Ocver 2 years this turned i to 9 on my pain scale radiating down both legs and would make me throw up is i tried to walk any more than about 30 yards. That drove me to the dr.  A year later i would have pain and nausea  (9) standing at the counter for 10 minutes to make dinner.  The pain would go from my low back down my legs and after a few minutes my left leg would go totally numb. I also had numb patches in my left leg for at least 5 years along the L5 nerve root. My entire left leg ended up numb while waiting on seeing the surgeon.  My back pain started radiating up my spine about 2 years before i went to the dr, about a 5 on the pain scale.  If i leaned against a counter or a tree or something and pressed on my spine the pain would rocket to 8 instantly.  My surgeon gave me slim chances of avoiding a wheelchair and i ended up walking with a cane always in pain at least a 7 with the tramadol i was taking in the last year prior to surgery.  I had drop foot on the keft, and muscle wasting and atrophy of my calf muscles and pretty much everything down L5 nerve root.  I had no feeling from half way down my thigh to the end of my toes on the left. I could not wiggle my toes or raise my toes.  I could not stand on my toes. Or on my heels.  

    Immediately after surgery i had a 10 in my ribs.....it was awful waking up after surgery. We managed to get that to a 5 with pain drugs....heavy duy.  I still have rib pain-likely from nerve roots at T9 and T10 and T11 where the topd on my bars are....my surgeon thinks they will heal and it will eventually feel better. I live with rib pain riht now between 3 and 7 depending on the day and how much i have done in the days before.  I also had a walker after surgery. My left leg would give out on me for the first 3 weeks post surgery.  I could not get up the stairs with my left foot first....so i practiced for hours, left foot up one step, and back down, and up and down.  I could wiggle my toes after surgery immediately...i could move my ankle too. But i still couldnt feel anything to the end of my toes.  That woke up all at once about 2 months post surgery. Wham....it hurt like a 7....but was short lived, ached for about 2 weeks and now its perfect (almost).  The msucles are coming back....slowly.  i dont limp any more. I do not use a cane anymore.  Somehow the surgeons kept me out of a wheelchair.  I am so thankful for that!!!!  My daily pain before surgery was easily averaging 7-8....sometimes 10....someimes 9. Never under 7.  After surgery now i am mostly off painkillers, i take some regular tylenol and while my rib pain can hit 7 most of the time i am 5 or less.  When the weather changes i can hit a 6 again....rarely a 7-this is usually rib pain combined with physio and weather change pain....and tramadol knocks it back to a 2.  I do not have that horrid make me throw up radiating pain to my legs any more. I can walk a km without problems in my back or leg-now its my ribs....but thats a 5....tolerable.  i do have sciatica in my left leg, but that poor nerve gotmstretched almost 2 inches when they pulled my spine straighter....so i expected it. That pain is at worst a 5 when we are working on frreeing it up at physio and its usually the next day.  But given how long i had much worse pain the sciatica is nothing....incan deal with it.  Right now sitting here i am happily at a 2....some naggy ribs....and pins and needles in my back where its waking up still. I am 10 months out as of friday!  My surgeon tells me 2 years for nerve healing....so i am giving it time patiently.  I will likely never be pain free, but i just remind myself of throwing up from pain before surgery and this is nothing.   I had 10 nerves being crushed, 2 discs replaced, spinal stenosis and laminectomies to reliev the pressure on my cord. I also had 2 fractured vertebrae.....life is way better today that for easily the last 8 years. I do not think i will ever be pain free-a 0 day in and day out.....but i am okay with anything less than 5. After all this is major surgery....but i do wish the rib pain will quit sometime. Soon.

    Kathy
    Veritas-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • esteveneesteven WashingtonPosts: 12

    Encouragement for Scoliogirl

    I too had scoliosis surgery about 15 months ago. (Facetectomies & Laminectomies T-12 to S-1/cages L1-2, 2-3, 3-4, 4-5 and instrumentation T-9 to Pelvis) I am pretty well locked down. I am pain free, but occasionally if I overdo I take acetaminopen. I stopped pain meds three months after surgery and just kept moving. I use treking poles to walk any distance which I find annoying. (My surgeon was adamant about no cane, he didn't want me bent over again.)   I have numbness in my right leg and foot and sometimes have trouble knowing exactly where they are; but manage the grocery store, around home and  short walks with no assistance. I had to learned to walk again, a slow process and I am still making progress. I did rehab in the hospital because I had wounds on my side from an xlif, on my back from the surgery and front with deep tissue blisters. 

    I now appreciate how well my pain was managed in hospital and with the meds I took for the first two months at home. I never really had a time that the pain was not managed after surgery--except a short time in ICU I can't remember. 

    Before surgery I needed pain meds to walk any distance and noticed that my breathing was difficult. Of course when I found out my rib cage was touching my pelvis it explained lots of things. I wish I had done the surgery earlier, but the risks are real. My surgeon emphasized that there was a 50% likely chance of complication, I suspect that is true for all such surgeries. More likely when they are as complex and long as scoliosis surgery tends to be. My first surgery was 7 hours and the second a day later was 14 hours. They had not anticipated the length, but once the doctors entered my body they were able to accomplish more than anticipated.

    If you are able to focus most days on what you can do and not focus on limitations, are patient with yourself and yet can push past barriers it finally becomes worthwhile and something in the past. Don't feel like a crybaby, your pain is real. See if you can formulate a plan to get well and move forward.

  • i love to hear that, esteven, " it finally becomes worth while".  i keep second guessing my decssion thinking i did the surg too soon. there are so many article that say, they don't know when to tell paitens to have the surg., because there is just not the reacher and feed back after surgey to say. that's what i hope all of us can do here, put in our thoughts, fears, set back, triumphs and so forth to help other make that hard desion, is this surgrey right for them. when is it time? a question that might never have a set answer. thank for your input i found comfrant in it plus i went back and read your story, thanks for sharing and renewing my hopes.

  • scoliogirlsscoliogirl Augusta Posts: 36

    Thanks for the encouragement and what I may before and after surgery.  You guys have given me hope that perhaps one day I will be able to walk around the block, stand for longer periods without so much pain, and perhaps be able to shop a little with my daughter.  You guys are the best!!!!!

  • WLLadyWLLady Ontario CanadaPosts: 1,486

    Hey scoliogirl!  how are you doing? 

    Kathy
    Veritas-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

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