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Thread: Hip pain caused by scoliosis...????

  1. #241
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    One statement in this encouraging thread stood out to me: You will surprise yourself and find you're a lot stronger than you ever thought you could be.

    This is so true. You have more strength and courage than you imagine. And you will come out of it the other side with a renewed confidence in yourself.

    We're with you all the way, Jess.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  2. #242
    Join Date
    May 2009
    Posts
    3,745
    Jen the more i read the forum the less i am interested
    in having fusion to sacrum, which is what i require...

    today i read someone's post about never wearing anything
    post surgery for the rest of her life except for stretchy clothing...
    sounds horrible.....that is not a reason that would stop me
    from having surgery.....just one more on a long list...

    the need for fusion to sacrum is what has kept me away
    from surgeons...
    too bad there is no way to fuse the top and then fuse the
    bottom and not fuse them as one...

    i still do not see myself fused....it is not in my head
    as my future....it discourages and terrifies and saddens
    me beyond words...

    i am happy for any and all who are glad they had surgery to sacrum.

    jess....and Sparky
    (who requires his owner bend down constantly)

  3. #243
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    I'm sorry to hear that Jess. I'll never stop encouraging you towards surgery because I believe it will help you enormously. But I also respect your choice. When the time comes, if it comes, you'll have lots of us here, barracking for you.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  4. #244
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    And I've never heard of anyone not wearing anything but stretchy clothing. Maybe that is just one person's preference. Not mine, and I'm sure not others...
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  5. #245
    Join Date
    May 2009
    Posts
    3,745
    thanks, Jen and Susie Bee
    i am truly touched by your concern for me and by your
    encouragement..
    i know one person's experience does not speak for everyone...
    i think sometimes the fear takes over...
    also, where i am living now is not conducive to physical recovery...
    eventually i will get around to inquiring if anyone in southern CA
    takes my current insurance...which i plan to change in January.
    i also expect to be in southern CA in January.
    past winter was the last winter in northeast for me.

    thanks again...you guys are so kind.
    jess...and Sparky

  6. #246
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,927
    Jess

    On the mobility question as far as being fused to the pelvis, the very best way to know what its like is to wear a full hard brace. Regardless on if they work or not, this was worth a fortune and prepared me for my surgeries. I knew what I was getting into.

    I have an idea.....I have my “post surgical” brace, which is a split clamshell setup with a front and a back attached with velco straps on the side. I could UPS this to you, and you could try it on and feel what its like to be fused to the pelvis. Its in brand new condition and I hardly wore it.....If it doesn’t fit, you can simply use a hack saw and make it fit. This is easy. Throw it out when you are done with it, or use it as a little dog house for Sparky. Its lined with foam. (smiley face)

    My Copes brace is a relic....and a part of my “turbulent” scoliosis history and I wouldn’t want to part with that brace....That one was a custom fit, and is tight as a drum. Regardless of what Art Copes did, I will give him credit on his brace design....I have no regrets on the purchase of his brace.

    I understand wanting to move to Southern California due to your situation. I will have to come down for a visit...

    Let me know

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #247
    Join Date
    May 2009
    Posts
    3,745
    you are so kind, Ed...
    i will let you know...
    thank you...so much.

    jess...and Sparky

  8. #248
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,927
    I wonder if there is a market for a scoliosis brace cat house?

    I could mount it on a pole and tiger can sharpen his claws on it. (Entertainment value for prior brace wearers)

    Do you think our nations Orthoist’s would find that depressing?

    Ed
    Last edited by titaniumed; 06-14-2014 at 01:28 PM.
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #249
    Join Date
    May 2009
    Posts
    3,745
    i do not know about braces....
    never seen one...
    i do not think kitties need houses...
    although the tiger i used to help out with in CA,
    near Moorpark, had a den....he slept in there, took
    naps there after he ate....


    20140606_083035_resized.jpgJessica_06_0011a.jpg

  10. #250
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Jess,
    I have been away for my grandson's graduation up in Providence, RI. If I can give you any kind of encouragement, I would say that if you don't think you have the strength or courage to go for a fusion to the pelvis, think about this. Our strength and courage comes not from us, but from the One who made us. Most of us have been absolutely terrified prior to our surgeries, but when the time comes, peace comes to us and the power of God takes over. (Linda, you can delete this post if you must, but it is the truth.) You have told me you are a believer, so now it is time to trust in Him. I wish you all the Peace in the world. How could you possible want to live the rest of your life as an invalid in serious pain?
    Blessings to you, Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  11. #251
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,572
    Quote Originally Posted by jrnyc View Post
    Jen the more i read the forum the less i am interested
    in having fusion to sacrum, which is what i require...

    today i read someone's post about never wearing anything
    post surgery for the rest of her life except for stretchy clothing...
    sounds horrible.....that is not a reason that would stop me
    from having surgery.....just one more on a long list...

    the need for fusion to sacrum is what has kept me away
    from surgeons...
    too bad there is no way to fuse the top and then fuse the
    bottom and not fuse them as one...

    i still do not see myself fused....it is not in my head
    as my future....it discourages and terrifies and saddens
    me beyond words...

    i am happy for any and all who are glad they had surgery to sacrum.

    jess....and Sparky
    (who requires his owner bend down constantly)
    I think that we see what we want to see in the thread. Irina wears cute form fitting, non-stretchy clothes as did another woman in that thread. She is also slim and tall. I wear mostly stretchy clothes because I like comfort, not because I cannot due to my surgery.

    I focus on what I can do now which is phenomenally more than what I could do before surgery. Sure, I still have some discomfort here and there, but I am in the mainstream of life. I was progressively becoming more debilitated and spending less time outside my house. Not a life that I wanted to live.

    I honestly do not think that fusion and iliac screws have slowed me down....and I'm not smoking anything! Just the opposite, the surgery gave me my life back.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  12. #252
    Join Date
    May 2009
    Posts
    3,745
    am seeing Dr Lonner at 11:30 in Manhattan Thursday, June 26th...
    will try to post X rays after i get back Thursday nite....
    i expect bigger curves than last time in 2010...especially
    since a CT doctor did an X ray since 2010 and said my lumbar
    curve, 62 degrees in 2010, was at 70 degrees.

    jess...and Sparky

  13. #253
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,167
    Good luck at that appointment, Jess.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #254
    Join Date
    May 2009
    Posts
    3,745
    Thanks, Sharon...
    going in Wednesday and seeing pain doc, getting half dose
    steroid shot in left hip, fingers crossed...
    then see Lonner Thursday...

    jess... and Sparky

  15. #255
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Good luck with both of your appointments, Jess!
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

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