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

  1. #406
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,933
    Quote Originally Posted by jrnyc View Post
    how a surgical procedure can trigger it...
    I noticed this.....but is has been 17 months for Susan.

    Its so hard to tell with the human body being so complicated.....it seems its always something new.

    When Richard Pryor was diagnosed with MS, he simply called it “more sxxt”.

    A simple analysis with comedic flair. Sometimes all we can really do is to try to laugh between our tears.....it balances things...

    Ed
    Last edited by titaniumed; 08-15-2014 at 07:57 AM.
    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

  2. #407
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Dear Susan,
    I have been away from the forum for some time and was so shocked you have been having paralysis in your legs. Are you going to have that loose screw attended to? It doesn't seem that it could be the source of your paralysis though. It seems so unfair that bad things happen to such good people. You don't deserve this. I hope and pray that the Doctors can get to the bottom of this and get you back on your feet. I will be praying for you.
    God Bless, 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.

  3. #408
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    807
    Hi Susan, I hope and pray that you are improving. We are all praying for you. Jackie

  4. #409
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,572

    Patience my ass, I'm going to kill something

    I have been laying low....hoping for a miracle that has not come yet. I am in a Skilled Nursing Facility, alias for "Nursing Home". I remember the bumper sticker, "be kind to your children because they will choose your nursing home". Well, the SNF is OK. I have PT and OT everyday and practice hat they taught me in between. The food is awful.

    I still do not have a definite diagnosis, and am beginning to realize that I may not have one. The MD on my unit suggested "transverse myolitis". I need to look it up.

    Right now, I cannot weight bear or stand. My days are spent in a wheelchair or bed. I am trying to get outside as much as possible. If I cannot transfer independently to the toilet and into bed or another chair....I do not want to go there. My family is phenomenally supportive. I have yet to digest the possibility of being a lifelong paraplegic. There are many tears to be shed yet, I am afraid. I am trying to combine optimism with realism. My 68th birthday is next week and my family is going to the beach house that I rented months ago to celebrate. They tried to cancel and I put my foot down and demanded that they go without me.

    Sometimes, I feel alone in my journey for health and that place is lonely. But loving family members intervene and help me to realize that I am not alone. And I received a lovely flower arrangement from a Forum member and a very supportive phone call out of the blue from another member. The member promised to let me scream on the phone if I needed to. Such great friends that I barely know. I cherish the supportive comments above and the prayers touch me.

    My brother said to take this one day at a time.

    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. #410
    Join Date
    Aug 2012
    Location
    San Francicsco Bay Area
    Posts
    127
    I am so sorry for this horrible paralysis and ongoing pain, Susan. How disappointing and frustrating! I am glad at least that the skilled nursing facility you are in is treating you decently. I believe you had said that Dr. Serena Hu, who was your surgeon, would be reviewing your recent images? I believe you don't live near Dr. Hu. Anyway, has she responded yet as to whether this is related to your surgery?

  6. #411
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    All I can say is that Susan you are in my prayers
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  7. #412
    Join Date
    May 2009
    Posts
    3,745
    susan...ditto what everyone else said...

    i feel so badly for you....
    i hope Dr Hu can see something on Xrays to figure out what
    has happened...or how...
    and if it is not structural....then another doctor needs to figure
    it out for you....someone has got to have the smarts to figure
    it out...why it went bad after seeming so good....if the surgery
    indeed triggered something else to happen in your body.

    keeping you in thought and prayers...
    jess

  8. #413
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,263
    Hi Susan,

    I haven't been to the forum for a little while, hoping that you might have had better news by now. It's hard to imagine how you're feeling, yet you still seem to have that determined edge. I'm now placing my hope and trust in Dr. Hu to come up with a reason and a treatment of some kind. I'm glad you have a loving, caring family. Thinking of you, Susan.
    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

  9. #414
    Join Date
    May 2008
    Location
    reno,nevada
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    Ohhh Susan, your brother is soooo right, take it one day at a time.....Sigh....

    I was there for my dad who had ALS years ago.....and many of the thoughts that my father had were conveyed to me at that time. Itís a scary thing not knowing what will happen and we wonder why it takes so long for a diagnosis. I know you understand about all of this, proper diagnosis is important for a scheme of treatment....

    There will be plenty of time for thinking now....and adjusting will be hard for sure. Like Jen mentioned, you do have an edge in all of this that will help you maintain your sanity....

    We are here for you listening intently.....our thoughts, my thoughts are with you right now.

    Deep breaths...

    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

  10. #415
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    807
    Susan are there any pillows nearby? Go right ahead and beat them to nothing but a pile of feathers. All of us from the forum are thinking of you. You are a part of our lives now. We wish things get better for you.

  11. #416
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,572
    Dr. Hu has been out of town and just returned to Stanford. I had faxed her the CT result last week and requested that they immed send her a disc of my CT Myelogrm w/contrast. She saw the report and called me this morning very concerned about the "screw that is impinging on the spinal cord". She wants me to come down to Stanford for more testing and she said, "maybe we won't do anything different" but she wants this fully evaluated. It was everything I could do not to cry. I want to make sure that if i am a paraplegic for the rest of my life that every possibility of a reason that could be fixed was investigated fully and then, i will pock out a sleek racing wheelchair. She called OHSU to email the CT report, and she is not sure that her computers can read their computers. I had called OHSU yesterday and they apologized for not sending he CT disc earlier and said that they would overnight fedex it so that she would receive it Friday between 11and 1.

    I can't walk to Stanford....how do I get there?

    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. #417
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,704
    I just want you to know that you are in my thoughts and prayers. Hopefully, Dr. Hu can figure this out and get you back to normal again.
    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/

  13. #418
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    807
    Susan I do not know how far apart these 2 places are,but if family cannot take you,it seems like you could get a med car. it is a very needed in this special case.

  14. #419
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,933
    Susan, If you are ok sitting in a chair all day, I would fly. Can you maintain with the pain?

    Fly Portland to San Jose......arrange for a wheelchair transport van in Portland and in San Jose. They use vans with a hydraulic lift, strap the chair in the center of the van. It was about $100 for a quick trip 15 years ago, I would imagine it being more now. Ask admin at the nursing home, they know all the companies that do this....

    When you buy your plane tickets, explain that you are in a wheelchair. They have small teams of people at the airports that cater to wheelchair travellers......Do a morning flight, not in the afternoon. We did it in the afternoon and guess what? The plane broke and we waited 2 hours till I got raspy with the airline company. I was blowing flames, almost caught on fire...... We boarded around 2 minutes after that event. Take your lifting strap with you, you know, the white straps that the Cnaís use....

    You will load the plane 1st. They transfer you to an aisle chair which is very narrow, about 14Ē wide with a straight back. They will seat you up front, and use about 4 big guys to load you, usually 2 standing behind the chair on the plane. After landing, you are last to depart, they lift you on the aisle chair, then transfer to a regular wheelchair. Your wheelchair van should be at the airport when you land for transport to Stanford.

    Another option would be renting or travelling by RV, you could lay down in the back. But thatís a long trip to Stanford from Portland.....

    You can also fly in a bed, it would require some calling and sounds very expensive unless your Charles Lindbergh. They flew him in a bed 1st class out to Maui where he died, but he did start TWA. That kinda helps. (smiley face)

    This screw impingement does sound like good news.....lets hope that its as simple as backing it out and having your spinal cord heal.

    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

  15. #420
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,936
    Susan...

    If you can't afford to fly commercially, check out AngelFlights.

    http://www.angelflight.com/

    Linda
    Last edited by LindaRacine; 08-21-2014 at 07:55 PM.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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