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

  1. #211
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,715
    Jess,
    Think about your quality of life now with so much pain and also what your future holds without surgery. I wasn't in much pain and still opted for surgery because Dr. Lenke convinced me that I needed it for a quality of life in my later years. Fusion to the sacrum is nothing like I feared it would be. There are many of us fused to the sacrum that ski, dance, golf, play tennis, kayak, etc.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  2. #212
    Join Date
    Jul 2011
    Posts
    535
    You've let fear paralyze you for years. Has this mindset improved your situation? If not, isn't it time to try something different? I'm sure you've heard the saying: The definition of insanity is banging your head against the wall and expecting a different result.

    Jess, you are a smart cookie. Life is full of tough decisions. As you've heard before, the longer a scoli patient postpones the surgery, the more challenging the surgeon's job becomes. Isn't the worst decision making no decision?

    Gentle hugs!



    Quote Originally Posted by jrnyc View Post
    thank you, Ed
    i appreciate your kind words and effort to help me see things
    clearly....
    i know...i know i need the scoli surgery...

    i realize with the pain in my neck...literally...that i live
    with alot more hurting on a daily basis than i care to think
    about...
    i do not know that i am as brave as you...and the others
    who had scoliosis surgery...i especially admire those who
    are fused to sacrum...that scares me the most...

    wishing you a wonderful spring and summer...
    jess...and Sparky
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  3. #213
    Join Date
    May 2009
    Posts
    3,729
    to Karen...and Doreen..
    thank you so much for the concern about me and my
    decision not to have surgery...or my indecision...

    i do not know if i am crazy, Doreen...
    because i do not expect different results...
    i know my scoli will not get better...and that no tx in the world, as yet discovered, can make scoliosis reverse itself, or improve...
    i do not think it can be halted in any way...without surgery...
    but i am also aware...may i say painfully aware....that i have no way of knowing if i would be one of the lucky patients...one of the ones who would have successful surgery...

    there is another expression...that "the devil you know is better than
    the devil you don't know..."

    jess...and Sparky

  4. #214
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hi Jess,

    I haven't really checked in much during the past few weeks, and I was SOOOO sorry to read about all the troubles you and Sparky have been going through and dealing with :-(((

    Big hugs to you both!!!

    I know my friend's daughter sees an endocrinologist in CT and they absolutely love her. I don't have any details (where the doc is, what insurance she takes) but I'm happy to ask. I believe she treats adults too because my friend's daughter is almost ready for college and will continue with this endo so I'm guessing she's not strictly a pediatric endocrinologist.

    I'll be thinking of you and Sparky!!

    And yes, sometimes it's easier to deal with the devil you know! The decision to have surgery (or not have it) is a huge one - with so many uncertainties - that you have to be comfortable with your decision - and it seems that you are. If and when you are ready, you will know. Hopefully, you will be able to get some relief in the near future, maybe if they feel it's safe for you to get another shot (fingers crossed).
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  5. #215
    Join Date
    May 2009
    Posts
    3,729
    hi Maria
    thank you so much for such kind thoughts...
    i would love to have the name of the endocrinologist...
    i have to call the endocrinologist in Manhattan and see if he
    takes my insurance....it would not surprise me if he
    does not...
    it would really help to have the name of someone closer
    by who comes recommended.......CT doctors seem more familiar
    with my type of Aetna insurance than doctors in other states...
    i got to have a PPO because Aetna does not have my particular
    insurance policy as an HMO in CT...lucky break.

    Puppy thanks you for your kind concern as well...and sends
    woofs to Jackie.

    jess...and Sparky

  6. #216
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    I just e-mailed my friend and will let you know as soon as I hear back.

    Tell our little man Sparky to hang in there!!!!
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  7. #217
    Join Date
    Mar 2010
    Posts
    2,747
    Jess,
    I'm just so concerned for you that you'll wait too long. Then you won't have a choice of whether or not to have surgery.
    I have a friend with horrible spondylolisthesis and stenosis. She knowingly made the choice NOT to have surgery. She knew that her window of opportunity was closing, so was fully aware of her choice.
    I'm not so sure that you are, no offense.
    I think fear is dominating you and I would hate to hear that you finally want surgery and then find yourself at a point where you can't have it for one reason or another. So, please, please, at the very least keep seeing the spine doctors every couple of years so that doesn't happen to you. I would hate to hear that your indecision was your choice and caused you to have no choice. Does that even make sense?

    Right now I think your priority is to find out what the heck is going on with your hormones. You can't have back surgery with low cortisol. You need to be able to heal. I'm sure someone will correct me if I'm wrong. But won't they have to supplement you if it's too low? Would that cause it not to come back? You are in a tough predicament!
    I hope that doctor in CT is a really good one AND takes your insurance!

    I so wish that there were better methods of pain control out there. Drugs only work for so long and have risks of their own.
    So many of us on here suffer with pain of all sorts. So many of us suffer with drugs, too.
    I'm glad we have this place to vent.

    Keep us updated on your cortisol and what new things they find. I really hope that someone figures this out!
    Keep us updated on Sparky, too! Poor little guy. He's so lucky to have found a "mom" like you!

    HUGS!
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #218
    Join Date
    May 2009
    Posts
    3,729
    to Maria....thanks so much for the information and kindness.

    to rohr....thank you as well...
    i understand what your concern for me is...
    i really do not think i will have the surgery....at any point...i was ready to do it about 7 years ago, when i retired early, then had to stop while i took care of the tumor in my left femur....and then i moved to CT....etc...will not even go into that...

    but after that, the more i read, the more the possibilities of complications and need for revision surgeries became apparent to me...i knew very little 7 years ago, when i had decided to go ahead with fusion from T4-sacrum....the more i read, the less i wanted to have the surgery, and i have not been able to talk myself into it since....the times i did, i changed my mind.

    as for the cortisol...i was given cortisol pills that were low dose...but never took them....the latest endo doc i saw, whom i didn't think much of, suggested i could
    take a low dose every day or every other day...but that can be a slippery slope...
    i am afraid, as you mentioned, that i would have to keep taking them.
    years ago, i was put on steroids for pain relief...i required too high a dose to get
    relief from pain, and we stopped the tx....
    but my current GP told me for low cortisol, a very low dose does the trick....
    the pill tx still scares me...
    this is why i need to find a top endocrinologist who can do further tests on me.,
    and give me better advice.

    puppy is the sweetest...he sends everyone wet kisses....and doggie hugs.

    jess...and Sparky
    Last edited by jrnyc; 05-22-2014 at 02:52 AM.

  9. #219
    Join Date
    May 2009
    Posts
    3,729
    just as i suspected....endocrinologist in Manhattan (recommended as very good) does not take my insurance...

    moving on...gotta find a good endo doc...

    jess...and Sparky

  10. #220
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hang in there, Jess. As you now know, unfortunately, the endo my friend's daughter uses does not treat adults, but she should be able to recommend someone. She will need to transition my friend's daughter to an adult endo in a few years and has indicated that she has someone in mind. Stay tuned :-)
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  11. #221
    Join Date
    Mar 2010
    Posts
    2,747
    Jess,

    Just as my friend made an informed decision never to have surgery, I don't really think she fully understood the ramifications of that decision. It's too late for her now. She rides around in a wheelchair and lives on pain meds. But, you and I already live on pain meds. But, as you know they lose their effectiveness.

    I don't want that door of opportunity to slam shut on you if you ever find yourself in a place where surgery feels like your only option. Your scoliosis may well cripple you more than you realize. I'm not trying to scare you, but your hips WILL go if your gait is uneven. The spondylolisthesis and stenosis PLUS worn out discs will cause your spine to autofuse. So, either way you will get a fusion. It's how you want your fusion. Sorry to sound so blunt, but I saw what happened to my friend and it wasn't pretty. I just want you to keep in touch with the scoli docs so you don't end up changing your mind and not being able to. I'm hoping I'm wrong about all of this. None of us deserve this. But, there are always people worse off than us. It's hard to believe sometimes until you see one. Please take care of yourself. I hope you find a great endo that you can trust.

    HUGS and Woofs!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #222
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,472
    Jess

    I stumbled across a group of Dr Hey adult testimonial videos....

    Grab some popcorn and watch these.....

    http://www.youtube.com/watch?v=xo4Qy...fmdxLY&index=1

    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  13. #223
    Join Date
    May 2009
    Posts
    3,729
    thanks Maria....
    any info will be much appreciated...

    rohr....thanks for your concern...i know you want to see me do what
    is best for me...

    Ed....thanks to you as well....i know what i will be watching this
    Memorial Day wkend....am sure i will enjoy the videos.

    a great wkend to all....
    jess....and Sparky

  14. #224
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,267
    Dr Hey was awesome. If I did not move to CA, I would have used Dr Hey

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    April 21, 2020- another broken rod surgery

  15. #225
    Join Date
    May 2009
    Posts
    3,729
    hmmmm....
    i have some phone calls to make to surgeons Monday....
    it is now almost 1 a.m., so that is later today....i have to
    get the courage up....only because i have a sinking feeling
    that no one will take my crummy insurance (i was forced
    to change to by NYC bureaucracy)...from the list on Dr Hey's website
    it does not look like he takes ANY form of Aetna insurance...
    guess it is time i find out....

    hope folks had a nice wkend...
    i walked Sparky Saturday and Sunday...each day
    got worse for my spine...it literally feels like my spine cannot
    hold me up anymore...i am walking bent over when i walk
    him...and the pain in spine and in hip is bad...very bad...
    only for sweet puppy would i force myself to do it...
    especially after i saw forecast for rain Monday and Tuesday...
    but i do not know how much longer i will be able to continue
    the walks for him.

    best wishes to all for a good week.
    jess...and Sparky
    Last edited by jrnyc; 06-09-2014 at 12:01 AM.

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