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my scolosis and surgry

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Comments

  • ok here it is the 3rd of oct, I saw my surgeon today, just short of 2 yrs post. (dec 14 will be two yrs) ok he is done with me..he will see me again only if I request it for some reason. he feels there is no need for follow ups. I did get to ask a few question. the two places in my back , top two screws, they stick out and bother me a lot. he felt them and even for the first time looked at then under my shirt. then he looked at last x-ray which was about a year ago and compaired it to the xray pri to my second surgery, bottom line..its the top too screws and he feels it is because I am tine..learn to live with it! the pain in my foot with some movements is not a pinched nerve but due to lose of range of mostion from the surgery. I need to learn to live with it!

    stabbing pain in my back top middle and butt..all due to the muscel being against the rods and not able to move again I need to learn to live with it. asking about pelvic fixastion , I have to have it, said the sacral bone is hollow and would crumble with the weight of the surgery. said that's why they invented the pelvi screw, to advoid that..so that also I need to learn to live with it.

    so my biggest complaint, conserd..why do these doctors not explain all this pri to this big surgery..why not tell me up front what life will be like after. yes his one yr recovery , then at one yr he said well you have another yr to go cuz its really towo yrears,, now today was told well its actualy 3 yrs to recovey..said I should still see inprovments and healing over another yr., then over the rest of my life if I keep in the gym I should get stronger each yr and start to adjust to new ways of doing stuff because of all the new limitation..had I of known all of this I surely would have waited to do this surgery..my mission in life, anyone whi wants to know before surgery..just ask..i will be happy to fill them in. it feels as if my hip are out of place..feels like one side is higher tilted forwards and I walk like one side stick out.

    well, that's my story. I sure hope it has helped someone. my best advise, don't let them get away with out explaining what will happen after surgrey..make the doctors talk to you..and if they don't talk..think about another doctor.

  • WLLadyWLLady Ontario CanadaPosts: 1,433

    oh i totally second those comments xrobynx!  i look at how much i had to learn on my own, and my surgeon was really great in explaining things!  as was my PT!  but still, on retrospect so much we had to find out for ourselves! 

    i have my 2 year followup in january.  2 years would be december 19 for me....so i'm there early in january - the 10th or something.  and i'm starting to think of my list of questions now.  like how to stop the blasted rib pain.  and how come i feel the top two screws too (and i'm not that thin LOL).  and will i ever be able to take a longer step without "crouching" on my knees a bit and leaning forward?  yeah, my surgeon told me about needing the pelvic screws at my last appointment and that if they come out it ALL comes out, and they don't do that unless there's a huge problem (like infection or rejection of the hardware....).  so.  i'm stuck with it for life....but i do need to ask about the lean to the left-if it's leg length or hip or what.  so.....

    i guess we keep working out best we can, and keep trying to be optimistic and then try somehow to come to terms with "this is the new me".....hm.....that i think will be the toughest for me.  it feels like "settling" to not be improving any more. 

    but yeah, this is a life changer in so many ways!!!!! 

    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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  • Hi ladies; this has freaked me out a little. The 'learn to live with it' comment is baloney and very irritating. Why would a muscle be rubbing over hardware? isn't that why the bone is added? I really wonder if some of the pain is just tight muscle. Have you been doing any massage? That really helped my pain in the left butt area. And both of you seem to have been told the pelvic hardware needs to stay in. Well, my surgeon just removed the right pelvic screw et al!! His reasoning was that it was healed and the sacroiliac joint doesn't fuse so for some reason it wouldn't matter. I had been feeling a tug in the right pelvic area and because of the way the spine hadn't fused and the two broken rods, he decided to pull out the pelvic hardware (on that side) so that nothing would tug.

    I'm hoping that these surgeons just have very different opinions and that they are correct depending on the patient!!!

    It is interesting how much we've learned on our own and I wish we'd known more earlier. I am making absolutely sure that I do not bend even a little for three months. And I'm wearing my Lara Croft Tomb Raider brace which is super attractive....

    I'm trying to be optimistic too. We can't go back. No choice in the matter. All I can do is accept and keep moving.

    Take care,

    Noreen

  • ok yesterday was my turn to sit on the pitty pot for a few hours..i just felt like I did not get good care nor was I told the truth of what to expect. I talked to my sister in law who remined me how I lived from one striod injection to the next and the pain..just how I was..then she told me how she see's me now..not the deformed part but out of all the extrem pain, cuz I still have some pain..but she spoke of my more relaxed nature now, the fact that I laugh again, yes it is hard for me as I was sooooo active to be how I am now..i need to come to grips with that..this recovery is not just physical..it the hardest head game I have ever played...lol and so today I sit back and ecept the fact that it was time for the surgrey and trying to be happy with what I got..thats the hardest part, yes I want to be so much more, so I will keep trying to get better and pray that along the way I accept what I have. thanks all for putting up with my back and forth over this.so now I am ready to work towards the future and pass the pitty pot to the next person...lol I am done with it for now..but sure I will taske another turn at some point..after all I am only human..

  • RangerRRanger on da rangePosts: 1,014

    totally understand xrobynx, sometimes we all just have to vent our emotions. Not only our journeys are physical, but also an emotional roller coaster. I remember saying after my first spine surgeries 10 or so years ago, "never again", "I can't do this", "I shoulda, coulda, woulda." Sometime between now and then I vowed to never look back or second guess my decisions. I think back to all the pain, sleepless nights, and frustrations I experienced. I know I won't be as flexible and agile as I was in my younger years, that is a given even with aging. But I promise myself I will still remain active and productive to be the best I can be in what little is left in this short life.

    You xrobynx, WLLady, Noreen, and many others that frequent this site are warrior's. Be the best you can be and never look back. We are not perfect and "after all, we're only human."

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  • well said

  • And i needed a cry...

  • ok just made it through another surgery, but this one was not for my scoliosis, it was for a tumor in my chest. after it was out doctor had a good look at it and feels it is not canser. yea, so now just the healing part. I have been here before and I know the drill,  biggest obstical to over come is the balance of pain meds. I hate them but will need a few till I am over the hump. maybe now that this is all past me. the mental part of healing for my scolosis surgery will be better now cus I have no stress over the tumor anymore. 3 surgreys in less then two yrs, I sure hope I am done...lol well time for my miralax...lol my new best friend for next few day, I hate this part of recovery too...lol hope all are doing well and making good steps forwards on there recoverys.

  • WLLadyWLLady Ontario CanadaPosts: 1,433

    I'm so so so glad it went well!  now to heal again, oh i don't envy you 3 surgeries in 2 years.  hang in there!  i hope they will type that thing and let you know exactly what it was.  and i hope that someday they figure out an anesthetic that doesn't also work on the GI tract-that constipation is the worst after surgery!  gentle hugs and i'm glad that tumor is gone.


    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. 

  • Oh Robyn!! I'm so sorry...lets hope we are not competing for number of surgeries in the last two years...I want to lose! Wow. That is a terrible thing to happen now. Do you find you are comparing the pain to that of the previous surgeries? How are you feeling? I am glad you have pain meds because the medical world is trying to tell everyone that tylenol works just as well as opioids!! I'm thinking of you!!

    Noreen

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