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My scoliosis -part 4

245

Comments

  • Brad,

    I too was denied the first time around. I received disability on my reconsideration appeal. What worked for me was I got a SS disability attorney. She had told ne that I wasn't approved bc of lack of medical evidence. The records I had were over 6mos old. She advised me well. Make sure that your medical evidence is current and within the last six mos. MRI records and a doctor writing you're disabled will help immensely. Make sure that you give SS all of the doctors you've seen. Believe it or not, the more the better. 

    I just recieved disability in August. If you have any questions please feel free to ask.

    Teresa

  • Kathy,

    Thanks for posting about the rib pain. I thought I was losing it. If I stand or walk a lot, the rib pain is horrible. Only thing that gets rid ofoit is lying on a heating pad. Geez, I'd be willing to let them remove my ribs if they weren't needed structurally lol. I learned a hard lessen last night. I picked up 4 party pizzas and I couldn't set them back down quick enough .I guess they are over my weight limit. The hard headed nurse has got to learn to be a patient.

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  • WLLadyWLLady Ontario CanadaPosts: 1,484

    i've noticed just in the last 3 weeks quite an improvement in my rib pain-that has been a LONG haul....i'll be 2 years in december.  so 22 months i guess?  i have actually had 4 days in a row without any rib pain!  actually stopped me and made me wonder what i've done differently. couldn't think of anything.  although i must say my posture is still horrible....or at least i think it is.  oh well.  and sleeping.  gah!  i don't think i'll ever sleep through the night again. 

    4 pizzas!!!!  yikes!  i had issues lifting one....lol.  i do think that us stubborn folks are the worst patients....and worst at being patient! 

    went to visit a good friend of mine on saturday (thankfully saturday, because on sunday she had snow at her place! we don't...yet....it's coming...and i'm dreading it....).  had a heart to heart with her, she is a fellow farmer and livestock person, and has the same hobbies as i do and i think she is right on when she said that i just cannot do what i used to, and time to figure out how to do what i used to and that means cutting back on work.  so i'm going to look into dropping to 4 days a week at work sometime in the near future.  the weekends are no longer long enough to recharge my batteries from the week. 

    i am an outdoors person, and spent a lot of time this weekend in the woods.  wow.  twice i went out and didn't think i was going to make the walk home.  another thing to watch.  i think i'm doing great, and then ZAP all my energy is gone.  and then it's honestly everything i can do to put one foot in front of the other to get home again.  the last time i was out (yesterday afternoon) it was just pouring, otherwise i would have laid down in the field for a while until i'd got some energy back....but cold cold pelting rain, so.....i made it home, but....yeah.....stubborn.  given that 3 months ago i couldn't even walk in the woods, i think i'm doing great, but i want it all and i want it now!!!!  ha ha.  i still have a few holiday days that i can take, so i'm looking at taking them....in the next week.  too bad i need to use my vacation days to recover from living life, but it is what it is.  just look how far we have come!  i have to keep that in mind.  2 years ago i could barely walk.  and yesterday i spent 4 hours in the woods.....so....

    hope everyone else is doing okay.  finding the weather slipping into winter is hard on the body....but at least it's just aching now and not leaving me laying in bed....so that's a bit better too.  i hope when the rain and snow quits and we finally get some sunny stable weather it will be better!

    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. 

  • wow, that's grate, I am so happy you were able to walk in the woods and have a relaxing day, yes I too take off on an adventure, just to find out I over did it and feel so tired and hard to make it back to the car or back home again. and I hate when someone says well you are old..face it you should have trobble doing that, but if I could do it before surgery I feel I should be able to di it again...lol..but the hardest lessin if finding out that practice just will not give me back the ablitly to move in some ways, that pelvic fictation dose put more limits on us then they tell us..so must of us learn the hard way...lol

    well this past week I was back to napping, partly cuz sleeping at night is so bad and partly cuz this last surgery zapped my energy. so back to baby steps witch is just frustrating for me. I am still having trobble breathing deeply and I get so short of breath just doing nothing. can not wait for this recovery to get a little farther along. I see the surgeon for last surgery on nov 7th and I hope to get cleared to start working out again..i think I need back in the pool swimming to work on getting my air back. I do not remember being this short of breath with my frist two surgerys. I do have a new goal in life..new goal..to make 1..that ONR full year with no surgerys. dang I hate recoverys..again so happy for you, yes I would be there with ya on that walk in the woods if I could.

  • WLLadyWLLady Ontario CanadaPosts: 1,484

    just remember xrobynx, they were in your chest on this last surgery, and that's got to bother your lungs!  hope everything goes well on nov 7!  take it easy....heal....geez, and that's coming from me, my patience for being patient is worn out!  yesterday was a bad bad day for my left leg.  nerve pain, tingling foot, leg felt like it was swelled up all day, and it wasn't....i'm sure just from over doing the walking in the woods.  so yesterday i got my reacher out and took the atv to pick up spilled corn in the field.  harvest is coming off and there's always cobs left behind, and i pick them up and shell them for the horses and turkeys.  nice easy day....after working all day.  so feeling a bit better this morning.  leg is still a bit weak and sore, but i do think that's muscular now as opposed to nerve pain.  what really sucks is i still have to watch how i put that left foot down, and if i stand on a branch under the leaves it really throws me still.  so frustrating.  and i don't think i've been in the pool for a month now.  hope my bathing suit still fits....my body just wants to hibernate and true to form its putting on the extra poundage like every fall.  sigh.  even if i stop eating half of my normal!  but i have so many fall cleanup things to get doing.  once the snow flies it will be easier to swim....yep, biggest complaint about the surgery is the pelvic fixation.  definitely.  followed closely by rib pain. but on the whole....way better than before surgery for me.....still incredible how fast my body decided to fall apart.....hm. 

    hope you are feeling more energetic soon xrobynx.  hang in there everyone, we'll get there someday!

    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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  • Reading the pelvic fixation comments has been interesting.  I have always been a walker and of course that is what they want you to do after these surgeries so I got right on that.  But when I started getting to a couple miles at a time and putting a little speed into it I could tell my gait was very different than pre-fusion.  I felt like it was more of an effort and always felt like I was moving so slow.  In actuality my pace is an 18 minute mile which I consider pretty good.  On one of my follow up visits with my surgeon I commented on how I felt my stride was clumsy feeling and kind of a chore.  I asked him directly if it was because my spine was fixed to my pelvis now.  He said it wasn't and that in all the studies they have done on pelvic fixation, including robotics, that it doesn't show that it significantly alters gait.  I told him I definitely walk different now and he smiled and said well that's because your spine has 10 levels fused together but it is not the pelvic fixation.  I do kind of find that hard to believe but...........oh well.  I am actually okay with the pelvic fixation.  I think the more I am locked down the less chance of things starting to move again.  My scoli was idiopathic so it seems to be in my DNA for my spine to want to curve.  I want to make sure it doesn't happen again.

    10 level fusion T9 - S1 with pelvic fixation. Two titanium rods, 24 screws, 4 cages.

    Firm believer in PMA

  • WLLadyWLLady Ontario CanadaPosts: 1,484

    okay.  who else has these horrible back spasms hit them out of the blue??!  i've been laid up for the last 24 hours....just nasty spasms that started when i got up from laying down.....erector spinae i'm certain.  back on muscle relaxants-they give me the most relief....this is the second time in 4 months....and it's always at the top of my bars.  last time it finally setlled and i could feel a whole lot more of the left side of my back, temperature and touch in the skin and the muscles.  this time i still can't tell....but wow was it angry for a while.  i'm really worried when that happens about breaking something or pulling screws.....much much better today-but i can tell those muscles are still spasmed and tight....sigh.

    urbmshr-i asked my surgeon the same thing and he said it's because you are fused to your pelvis and it doesn't rock and tip as you walk like it would normally between S1 and L5, and your hips because now your pelvis and L5 and up are all stuck together like a board....so.....get used to it. LOL.  it's quite possible that they don't actually know..?

    okay.....first on my list of questions for my 2 year follow up....spasms.....and funny, when they happen i lean worse to the left (even though i do lean a bit normally).  had someone comment on it this morning....didn't exactly make my day, but hey, i'm not in a wheelchair!  i don't even need my cane....so.....um.....yeah......deep breath and carry on.....argh.

    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. 

  • hmm..Urbmshr I agree that I don't buy that the fussion it self changes the gate but the pelic  thing dose not. I know folks who have the big fustion but not the pelvic fixstion and they walk normal. I also think in putting the bars to my pelvic bones they shifted my hips a little bit, feels like my hips are tilted so left is a bit higher plus it is now tilted forwards both but the left and at an angle tilted forwards..so like in 3 dimentions. I can bring my right angle up and lay it on my left leg to put a sock on..but I can not bring up left angle to do the same for left sock..my leg its bone in the sucket of the hips and just can not move. if I lay on my back I can lay my right leg out to the side..but not my left leg..and the pain where it sticks at if you try to force it gently..nope  the pelvic fication dose indeed mess up gate and all sorts of movements in my book. and I have no doctors or even a pt person to work with me to try and figure it out..i was labled with a readjustment disorder and told I need to see a shrink to over come it..talk about mad..the VA made it clear to me.,.just live with it, and don't ask any question or I will get another lable. dealing with all of this surgery I hard enough but having to fight none stop for treatment, and for it to e so bad has made this a hard journey for me. somedays I wonder why I even bother. but I will keep doing reasher and finding a way to mitagate as much of this as I can. I will not give up and just sit at home and stop living..i just won't..thats not who I am.

    so goal number one...ONE whole yr with no surgerys..then goal number two is to be able to hike a few trails and get back out into nature..no WLLady I don't hunt..just walk and maybe hunt critter with a camra...lol. I would love to try body surfing again..love to swim and play in the ocean..and just so tired of folks telling me I am getting older and I should not be doing this kind of stuff..old is a state of mine...not a state of years you been walking this earth..i can show you folks older then me doing tons more then I ever did..and I can show you folks younger then me not able to do what I am doing now, after this surgery..so please never let them convise you ..that you are old and so you except where you are..keep working to get better.

  • urbmshruurbmshr Posts: 231
    edited 11/01/2018 - 3:59 PM

    Yes WLLady, I think they just don't know.  Those of us living it know how are bodies move now vs. how they moved before.  I can't, or really don't want to, use the elliptical because that definitely rocks my hips more than they are able to rock.  I can't lean out to pull the car door closed if I leave it too far open when I get in and I think that is related to spine/pelvis fixation.  Oh and xrobynx you sound just like me with your sock story.  My right leg moves different than my left and I can reach closer to my right toes than my left toes.  On that one though I pretty much just say 'screw it' I'm using my trusty sock aid.  I even packed that in my suitcase when I traveled. Wonder what TSA thought of that <lol>.  I also think my surgeon put in a lumbar curve (the one you are supposed to have) that changed the position of my pelvis.  Never really had a butt before, now I do.  Still not used to seeing that when seeing my profile in full length mirrors or store front windows.  I think you are doing great xrobynx (BTW, is your name Robyn?) considering how much you had to figure out on your own.  You keep a pretty upbeat attitude when it seems your medical support is just lacking at times.  Your outlook that you won't give up and just sit home is inspirational to me and I'm sure many others here that are reading your story.  Gotta keep plugging along.  Thanks for sharing.

    10 level fusion T9 - S1 with pelvic fixation. Two titanium rods, 24 screws, 4 cages.

    Firm believer in PMA

  • WLLadyWLLady Ontario CanadaPosts: 1,484

    hey-i can get my right sock on no problem!  the left......what a pain !!!!  i just can't seem to reach it quite properly, and even if i try to pull my foot up on top of my right knee its not the same with the left..even shaving is easier with my right than the left...and you have no idea how many times i have left the door open too far and had to get out again and half close it while i got into the car.  i went into surgery with a "flat back" from the facet joint disintegration and now i have the rebuilt lumbar curve too and i know my pelvis is definitely tipped compared to before....ah, so glad to know i'm not alone!  (thank you!!!!)

    yep, you guys definitely keep me going-that's for sure. keep it up! :-)


    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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