Page 31 of 48 FirstFirst ... 21293031323341 ... LastLast
Results 451 to 465 of 717

Thread: Susan's surgery at UCSF with Dr. Hu on 19 and 22 March, 2013

  1. #451
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    I don't blame you a bit for being angry. Eventually, you will be back 100 per cent and this will be a horrible nightmare. We are all thankful to gave an update from you. Please feel free to vent.
    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. #452
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Susan--
    What a horrible ordeal you have been going through. I hadn't been on for ages and had to back up and see what had happened. If it had only been that fast and easy for you. Can't believe the screw situation wasn't figured out sooner. I'm so sorry about all of this and truly hope you will be on the way to recovery very soon.

    Rohrer--
    I didn't see any other more recent posts but see that you have been having lots of difficulties also. Hoping and praying for the best for you both. So glad to see the great support you've both received from our forum people. It's so great to have this during those difficult times. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  3. #453
    Join Date
    May 2010
    Posts
    348
    Susan, you just take care of your end and we'll keep praying for you on this end. I can't say I know how you feel, as we're all different in how we handle things. But I know fear, I know that hopeless feeling after being through a lot already. I just know that knowledge is a powerful thing.. I hope they are giving you lots of good information and support on how this is all going to get better. Sending warm feelings your way. Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  4. #454
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577

    Another day in rehab....

    Improving a millimeter a day....call me a snail.

    Official diagnosis: Proximal Junctional Failure with Spinal Cord Injury

    Surgery: Hardware removal T3 to T5, Reinstrumentation and Revision Fusion from T3 to T6.

    Team meeting yesterday: 5-6 weeks of intensive rehab.

    My favorite parts of being here are the garden on the first floor and the "bowel and bladder programs" for neurogenic evacuation portals (yeehaw).

    Anyone have a good zipper tattoo that I can have done on my back?

    Signing off from rehab,
    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

  5. #455
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    Susan

    Thanks for the update.....good to hear about your improvement. One day at a time.

    I am amazed at how powerful kyphosis is....and it sure did happen up high in your spine.

    The ideas for tattoos are endless....Do you want a full zipper? I will post a few examples later....

    I like this one....(smiley face)

    Ed
    Attached Images Attached Images
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  6. #456
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    831
    Susan,thanks for the update. I miss reading your posts. I am so sorry that this happened. I find myself wondering how this was missed. But I am happy for you that things are improving if only at a ' snails pace' . I am praying that it keeps upward for you. Jackie

  7. #457
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    Susan,

    I am glad that you have a plan for getting better


    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #458
    Join Date
    Jun 2013
    Location
    Muskoka, ON Canada
    Posts
    98
    Susan, glad to see you have not lost your sense of humour!
    Thinking of you and hoping you will recover from this ordeal soon.
    Marianne
    rotoscoliosis, subluxation and spinal stenosis
    Surgery April 15, 2015 at age 67
    T11-L5
    Decompression with multiple discectomies
    Concord cages @ L2-3, L3-4, L4-5
    Osteotomies and local bone grafting
    Revision Feb.22, 2018
    Replaced rods
    Took out L5 disk to free up nerves
    Used BPM to help with fusing
    Fused T10-S1 with screws in pelvis

  9. #459
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    Thanks everyone for your kind words.

    Ed, love the tattoo! I am 68 and have never had a tattoo.....but am planning one in honor of my surgeries. Dr. Hu will no doubt frown on it. Too late!

    Progressed from denial to anger. Awesome progress!

    Susan....now have 3 rods and will post as soon as I can figure out how to do it!
    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

  10. #460
    Join Date
    Mar 2010
    Posts
    2,755
    Susan,
    I hope you make a full recovery. I'm disturbed to hear that things went wrong and so late in the healing process no less. You have hope of regaining your strength and walking ability. That's great news!

    For the rest of you, I'm confused. Susan can answer if she's up to it, but who messed up surgery and called her symptoms psychosomatic? Was it Dr. Hu?

    I've been told the same thing and was "diagnosed" with hypochondriasis. When the psychologist asked me if I knew what psychosomatic meant, I looked at him dumbly and said, "No." I just wanted him to have to explain it. Of course I knew what it meant! Duh. But you all know my REAL diagnosis. I was treated very respectfully by 90% of the doctors at that hospital. It's that one or two that really make me mad!

    Susan, you focus on getting well first. THEN go after whoever was responsible, unless it was just one of those risk factors. There has to be true negligence. I think the ones who said it was all in your head are the truly negligent ones!

    gentle (((hugs)))
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  11. #461
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    Quote Originally Posted by rohrer01 View Post
    Susan,
    I hope you make a full recovery. I'm disturbed to hear that things went wrong and so late in the healing process no less. You have hope of regaining your strength and walking ability. That's great news!

    For the rest of you, I'm confused. Susan can answer if she's up to it, but who messed up surgery and called her symptoms psychosomatic? Was it Dr. Hu?

    I've been told the same thing and was "diagnosed" with hypochondriasis. When the psychologist asked me if I knew what psychosomatic meant, I looked at him dumbly and said, "No." I just wanted him to have to explain it. Of course I knew what it meant! Duh. But you all know my REAL diagnosis. I was treated very respectfully by 90% of the doctors at that hospital. It's that one or two that really make me mad!

    Susan, you focus on getting well first. THEN go after whoever was responsible, unless it was just one of those risk factors. There has to be true negligence. I think the ones who said it was all in your head are the truly negligent ones!

    gentle (((hugs)))
    Rohrer01
    Hi Rohrer, nobody messed up the surgery. While Dr. Hu did repair my thoracic kyphosis it created a smaller kyphosis at the top of the repair. I knew it, but the spine was angled so that it misaligned the screws. Nobody's fault that it happened, just bad karma. The fault lies in delayed diagnosis at OHSU in Neurology, not Spine surgery.

    As soon as I can cut and paste the hospital record detailing my diagnosis of being psychosomatic, I will do so. There is an interesting note that says something like: we discussed the diagnosis of functional leg weakness with Mrs. Cooksey and she commented that she was pleased that we had been able to rule of major causes of leg weakness (no SH.., they were ruling out MS, ALS, Gillian Barre...sorry about the misspelling), she stated that her life was very happy at this time and was dismayed that we could be find a specific diagnosis. Sorry that you went through the same thing that I did. I was having decerebrate spasms when I was moved suddenly....how can you dream that one up as a hypochondriac? If it was functional, then I deserved an Academy Award!

    Hope that you are finding solutions. Life is a craps shoot.

    Hugs from rehab, 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. #462
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    4,024
    Quote Originally Posted by susancook View Post
    Dr. Hu will no doubt frown on it.
    You might consider the album cover attached below for a tatoo.....The “Lean into it” album by Mr Big explains everything. I have always thought of the scoliotic spine as a vertebral train wreck. After the wreck, usually the cars are attached and laying in precarious positions. We also have a tendency to “Lean into it” sometimes..... Would be interesting to see what Dr Hu thinks....Its an original for sure, I don’t think any scoli has this one on their back. He he

    I don’t know if I agree if progressing from denial to anger is progress, maybe it is....I would concentrate on moving past or scaling the anger phase down since it isn’t productive. I “try” not to get angry about anything at all anymore....I know this will be a hard thing, but its necessary. In ALS, there is a bizarre thing that happens to some patients, either its extreme depression or extreme happiness. One day I went to the hospital and my dad had around 30 wheelchair bound patients around him and he was leading the jokes....The admin nurses looked with complete amazement at what was happening, it was comedy central, a Dean Martin roast with people laughing to extremes.......It was everyone’s release.... One of the big guys had this oversize very heavy duty wheelchair, and you just don’t think about these things but my dad pointed out that it had a Ford F-350 rear axle on his chair.......I BTW was astonished myself just like the nurses, and wasn’t laughing much.....it was a psychological learning curve or reaction that I was wondering about, but we truly did have a lot of fun in-between the tears.

    I wonder why our vertebral bodies either rotate in scoliosis, or in kyphosis collapse into wedges as if they are made of styrofoam......and with this being the case, attaching to vertebrae becomes a challenging thing. Driving pedicle screws into styrofoam like cancellous bone, can lead to an unpredictable situation.

    I want you to know that I’m an RV’er, and camp with my bus when I can.....You might find this blog interesting......This lady likes to travel and go places.....
    http://rollinginarv-wheelchairtravel...ngs-to-do.html

    I use a laptop and lay all files on my desktop to keep things simple to find. To attach files on NSF, look for “Manage attachments”
    Click "Add Files"
    Click "Select files", (find on desktop)
    Click "Upload files",(wait for icon to appear, lower left)
    Click "Done"


    Ed
    Attached Images Attached Images
    49 yr old male, now 61, the new 61...
    Pre surgery curves 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

  13. #463
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Good to hear things are improving Susan, albeit slowly.

    We're "hanging in there" with 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

  14. #464
    Join Date
    Mar 2010
    Posts
    2,755
    Susan,
    I think we ought to go after the psychologists(Ph.D. the D stands for Dumb) or maybe doctor in your case?! It's because of them that we have had delayed treatments! Although, I'd have a hard time proving delayed treatment in my case... I'd still like to see the jerk fired! His croney was either fired or forced to relocate. The only one there that liked the man was that Ph.Dummy!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #465
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    Quote Originally Posted by rohrer01 View Post
    Susan,
    I think we ought to go after the psychologists(Ph.D. the D stands for Dumb) or maybe doctor in your case?! It's because of them that we have had delayed treatments! Although, I'd have a hard time proving delayed treatment in my case... I'd still like to see the jerk fired! His croney was either fired or forced to relocate. The only one there that liked the man was that Ph.Dummy!
    Rohrer, I have decided that I would be wasting energy on anger and blame that I need for healing. There was about 2 weeks that I wanted to get even. My son said, "mom, if you are expecting an apology, I doubt that you will get it". On so many levels, they were wrong. Maybe arrogant, I do not know. Do I want vindication? Maybe. Do I think that the delay in diagnosis might have cost me my ability to walk? I do not know and it is not important. I need to move on. The best that I can hope for is that this does not happen again to me. I am resigned to my future that includes a wheelchair. I hope that I can walk some....standing is a challenge for me right now. Sometimes life is just plain crappy, and that time is now.
    S.
    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

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •