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my scolosis and surgry

hi, on dec 14 2016 I had scoliosis surgry, I was fussed from T9 to S1. my spine was some what straighten and untwisted..i had a 60 degree cruve in the lumbar region  with a 22 degree recurve in the thorasic aera. after surgry I lose some function to left leg. plus foot drop left foot. small lump under right knee exrem numbness from right knee to ankle..and lots of numbness left side of body back, hip and most of left leg..both knees now have issues I didn't have before..just looking for what other have tried that helped them with recovery. and to share what all I have been trying. i still have a 20 degree cruve in lumbar.
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Comments

  • WLLadyWLLady Ontario CanadaPosts: 1,433
    Hi xrobynx!

    sorry you are having these issues after surgery.  You need to call your surgeon and get some imaging done and make sure that there's nothing impinged.  These surgeries are brutal, nerves get stretched and pulled and pushed, and get angry!  it can take up to a year or more for the nerves to heal because they heal extremely slowly.  you and i had surgery within a week of each other!  i'm fused T10 to S2 and pelvis.....large 110 degree lumbar curve, and i still have angry angry nerves that will ache and hurt and the feeling of bugs crawling around in my skin....
    when in doubt, talk to your surgeon.  it sounds like L1-5 on the left are angry-was the inside of your curve to the left or the right?  my surgeon told me that all the nerves on the OUTSIDE of the curve for me had to get pulled and lengthened, so they will be angry for a while, and he's right, that would be my right side, and my thigh and knee ached for weeks after surgery, and one spot of my thigh and back of my leg just woke up a couple weeks ago (almost 5 months) having been numb since surgery.  and i had lots of impingements on the left side, so i went into surgery with foot drop and left leg numbness and loss of function-the main reason i did the surgery, and it's taken a long time for those nerves to settle down too.  the impingements are gone on the imaging, but all the function and strength isn't back yet by any means. 
    for the nerves sometimes lyrica or neurontin can help if they are painful, and my physiotherapist has told me that moving actually helps the nerves and muscles to talk to each other and help the nerves heal.  i just started physio about 4 weeks ago, maybe something to ask your surgeon, if you can do some physio-even if it's just getting them to move your foot for you, or show you how to move effectively to help the muscles and nerves resume talking.  my knees and hips are taking a beating too because everything was out of alignment for so long.  my right hip is partially frozen, and now forcing it into a new position means bursitis and some pain there too. sigh.  but we need to get everything back in line from walking and standing crooked for so long!  it's a brutal surgery.  hang in there and as my surgeon and PT keep telling me "be patient!"  it's going to take a LONG time to heal from this.....one day at a time and one step at a time. 
    Please let us know how you are doing, what your surgeon says. we're here to listen and help if we can!
    Kathy
    Spine-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. 

  • ty WLLady, I see the surgeon again on june 14th I am putting all my question together now. because the VA veteran administration is paying for all of this.i had to do there program..they had me in pt but was releasted from that before I ever got out of the back brace..i joined this thing called well fit..its done in a civilian pt place but I have a trainer. it's $50 /4 weeks for 30 mins 2 times a week. I feel I need so much more...I was in good shape before surgry..one of the reason I chose to do it now..each month pain grew..there was less I could do..my out side of curve would be the left side..i have so much more damage on that side and I had more pain in left groin and down left leg then right..i am 58 yr's old..i thought that was why I am healing so slowly..but after reading up I see this is more normal..i am going to a therapeutic massage center..she spent an hour on just my left leg..then we worked both legs for a month..she was able to give me more range of motion with my legs. we are now working on the back..i go 2 time a week.. so far on the back has helped with some of the right side back pain..and increased range of motion with left shoulder..i have sevral muscle. on the left that are still upset with all the straingning and stretching..like you said..i so need tp learn to be patient!! this is going to be a long recovery..i so over did it cleaning house and washing carpets getting ready for dad to come home..i am his caregiver..i pulled a muscles in my chest..so now I have to slow down a bit..i still have trouble  sleeping..thats when I take meds I use melatonin to help fall asleep and the muscel relaxers to help keep me there..i was on the nerve pain meds but stoped them..they have so may bad side effects..anytime I got hot of over worked..i would start to pass out..ended up in ER cuz I could not keep head up just keep wanting to pass out. so I don't want thos drugs..need to find another way..looking at foods that help with inflammation and pain..wow theres so much to say..feels like I am rambling now..i read your story and yes your surgry is so close to mine..thought maybe we could help each other..i can walk 3 miles..and even do some lapps without the cane..working.  trying to get stronger so I don't need it at all..i have two stalizing muscles in left leg that just hang there..the nerves are not talking to them at all..so I keep doing exr.. to try and build strength in the ones around it..no one seems to know if I will get that back or not..they all say the same thing..it takes time..at least a year to know..wow..there it is again..Patients..i feel this is a leason God wants me to learn. lol..i am trying so hard..and just maybe I am pushing myself to hard too fast..right after surgry I could onlu drag left leg..so I have made a lot of progress..and so I keep pushing myseft to make more..again ty for all your words..and your story..its the reason I joined here..was hopeing to share ups and downs with someone who walks in my shoes. PS I am also dyslexic and spelling is very hard for me.. hope you can understand all this
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  • today I went to market..i can't carry as much with the cane so I make lots of trips to the car. one of the ladys was so nice as to carry the watermelon for me so I could buy a whole one instead of a half. learning to pace myself. sure wish the rain would end and it could dry up, talk about weather pain..rain and cold is bad combo..i tried to use the tens unit on my back and found another dead spot. just could not feel anything there..the massage therapist said she see's a diffrencane since I started to stretch left side of back..another baby step..but i'll take it. and my aunt stoped by..she said my walking looks grate to her..she reminded me how I just drug the left leg in the beginning..the strength training for legs has paid off..i want to start planting for landscaping around the pool..no garden this year..but I do plan on it next year..outside work today, at lease till it starts to rain again..i am so behine on spring clean and yard work..just take 3 times as long to do stuff now..i feel like a turtle lol


  • RangerRRanger on da rangePosts: 1,014
    hi xrobynx,

    I totally understand your frustration but I totally agree with WLLady, she has been of great support going into my latest adventure.
    Patience is key, I've learned that over my past surgeries, but I still have to constantly remind myself.

    I have a some acreage that I spend much of my time working it. This year is going to be minimal, but there will be next year when I'm back up to speed. I feel much the same you do xrobynx, sometimes it's three steps forward and two steps back. But we still will go forward in the end.

    Be safe and stay in touch,
    Ranger
  • hi Ranger

    yes patients is my biggest battle. and very soon I will resume caregiver duties for my father where I will needs lots of it.

    if I could just get a good nights sleep. I take over the counter melatoin plus either pain of muscle relaxer..last two night I tried with out reg drugs..just not ready yet..5.5 months out..seems like a long time, but I relize its not

    also this rain is doing me in. all of my numb spots were radianting such intence numbness last night that it ached..left foot down right started hurting..some days I wonder if I will ever be out of pain.

    I relize I need to spend my time thinking how far I came rather then where I am at..but some days that's hard to do. when I look in the mirror and see how deformed I am it just brings me down..i should take all the mirrors out of the house lol

    if I was talking to someone about to have this surgery I would recommend that they have a good support system in place to help them throught..recovery is as much mental as it is physical. I am on my own. no real help..so many folks that said they would, did not so all those let downs on top of a hard recovery has added to the difficulty. I wish I would of known about this site from the get go.

    as a mater of fact I will be telling my surgon about it and asking him to share it with all his other patients..then at least they have the option to seek out support


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  • WLLadyWLLady Ontario CanadaPosts: 1,433
    i too talked with my surgeon about making sure people going into this have a mental support system!  it's so important!  really honestly the hardest thing for me is the patience and the remembering that it's going to take time, and that it's OK if you cannot do something you used to, but to remember to keep trying gently until you can and maybe changing how you do something.....the boredom is awful!  the having to move every 20 minutes to stay somewhat comfortable....but yes, really one has to think-after surgery you could NOT get up.  look how far we all have come!  and then also to remember not to push too hard.  i was sure yesterday i had done something really wrong, because by dinner time i could not stand up straight, i could barely walk, and even walking was painful-but then we had huge thunderstorms roll through....i took my painkillers and melatonin (it gets me TO sleep but doesn't keep me asleep very well) and woke up at 3am feeling like i could dance around the house because the storms had rolled through and were gone!  gah!  guess this is how it's going to be now.  but that's okay, as long as i know it, i can prepare for it, and just know that i need to retired to somewhere without wild weather ;-P
    everyone keep your head up!  and just remember how far you HAVE come, and strive to get where you want to get, but be patient with yourself and don't beat yourself up for not being able to do something.  it'll come.  eventually.  and come back here often and let us know how you are doing!  we've all been through similar things, and can help prop each other up when needed. 
    Kathy
    Spine-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. 

  • ok tried swimming yesterday..but base on what I saw folks saying here only did a few laps..then walked in between each also as to really go so..craw stroke hurts to turn and take in air, so I used a snorkel after a few failed attempes..breaststroke felt strang..it all felt strange..and I was a good swimmer..was doing a mile..so a little disappointed..but not giving up yet..i'll try again in another day or so. I have so much outside work and everything is harder to do now..and slower..
  • WLLadyWLLady Ontario CanadaPosts: 1,433
    well, now you make me want to try it.  did you feel "heavy"?  i was sinking back first the one time i floated around in the pool for a while....i exhaled and whoa!!!! down i went back first!  it was funny.....maybe i'll try again, i've been a little hesitant because i really overdid the walking in the pool the first time.  and PT has been beating me up for a few weeks, so maybe i'll be stronger!  took me 3 weeks to get my garden in, and yesterday i went out and it was full of cucumber beetles.  if they eat it all i give up and will garden again next year.
    hang in there!  i can't believe you and me are only 5 days apart in our surgeries!
    Kathy
    Spine-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. 

  • WLLady it is so nice having someone so like my surgery and about the same time..you have helped me a lot..i planted all around the pool to finnsh up last yrs landscaping project..about 80 plants..it all but did me in..i had to planr doggy style..and was most amazed that my butt hurt the most..my therapeutic massage therapist worked my gluts and made a world of diff..it even took my back pain down a nouch or two..in order for me to swim craw stroke I need to use the snorkel, I also have a bilevl fussion in my neck..lost 16% movement there..between neck and back truning to drive is next to inposible..so I drive with mirrors..the more I work my back muscles the better I feel..yes it dose hurt at first..there all learning to work in a diff way..they don't have ability to move the same..still the credit goes to maddsge therapist..my biggest concern now is the pain in my arm..its looking like I my have a pinched nerve in my neck..the trainer at well fit wants me to talk about that with the surgon..now I am scard to death...no way do I want any more fussions..I am done..i will learn to live with it..as of right now I am scarde and depressed..also dad returns this Friday and caregiver role starts up again..
  • WLLadyWLLady Ontario CanadaPosts: 1,433
    hey
    so you inspired me to get into the pool.  i am excited to report that i didn't drown, but i am a touch disappointed, but happy at the same time.  i did not try to do the freestyle crawl.  just moving my right arm in the water was very very sore at the top of my right bar.  i had a lot of scar tissue let loose there a couple weeks ago, and now that seems to be plaguing me a bit with some pain.  but i did try breast stroke.  the arms work quite well.  the legs, not so much (the disappointing part).  i can frog kick with my right semi-okay.  the left, not a hope.  it just kinda jerks my knee and foot....oh well.  i had a lot of nerve damage in that leg, particularly between L2 and L5, so most of the muscles of that leg are "learning".  so i tried to flutter kick LOL.  um.  better to just drag my legs or try to kick VERY gently every few strokes.  I also had problems staying horizontal-like on the top of the water.....but that will come.  so i am getting back in the pool i decided i will swim at least 3-4 times a week, and do some water walking and stuff. i only did about 5 minutes, and didn't have any increase in pain the next day or that night sleeping.  found it a little weird getting out as gravity took over again, but nothing "bad".  so.  i sooooo desperately want to start massage, i'm going to talk to my PT about it.  my gluts are so tight too from trying to stand properly, and all the PT exercises, and i get a wee bit of sciatica down my right from the piriformis thing....thankfully it's not too bad, and usually if i spend too much time at ground level. 

    YES!!!! i "walked" around the garden on all fours to plant LOL.  and yes, my butt hurt too when i was done.  and my knees from the kneeling in the dirt  ha ha.  but it is so nice to have dirt under my fingernails again.  funny-it doesn't hurt to run a shovel....like digging a hole except i have to be very careful in lifting the dirt out, but i can push the shovel with my foot with no problem.  and i try to use both arms equally when planting with the trowel...trying to get my back muscles balanced......congrats on getting the planting done!  that's a lot!  i did 20 pepper plants yesterday and between baking in the sun and fearing the thunder coming in the distance, and the deerflies and being on my hands and knees i was done. 

    i sure hope that the pain in your arm is a muscle pinch as opposed to disc/spine!!!!!  glad you will talk to the surgeon about it.  hopefully it isn't, i will cross every finger and toe that i have!!!!  let us know what your surgeon says.....i honestly would have to think REALLY long and hard about another one of these surgeries too.  it's a tough recovery....i 100% hope it is not needed for you!!!!! hang in there.....and know that you inspired me too!!!!!


    Kathy
    Spine-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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