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Thread: Looking for resources/contacts in Northern California

  1. #1
    Join Date
    Mar 2016
    Posts
    2

    Looking for resources/contacts in Northern California

    Hi,

    I live in N. California area and 40 years old, female. At teen and 27 years, my double-curve scoliosis did not progress but unfortunately at 40, it has progressed to 28 thoracic (up 10 degrees), lumbar is stable at 28. I don't have xrays from the time I was 27 to 40, now.

    What's really hard is sitting, can't do it for more than 30 minutes but walking and standing are Ok.


    I've been doing lots of exercises and sleeping on my back and it seems to help with the pain.

    - Would love to connect with others in the Northern California area to see what resources are out there?
    -Would love to hear what everyone is doing to keep in good health/shape?

    Thanks!

  2. #2
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Welcome!

    My thoughts: Connect with a great adult deformity scoliosis surgeon, probably at UCSF. Get an opinion....what happens when you don't do anything? See anything that means need for surgery now? Take it in, write it down, collect business cards, go home for now (probably). Have a great seafood dinner in town.

    Learn about better ways to sit, more comfy chair, exercises, etc.

    Continue to have a great life!

    Follow-up periodically at UCSF.

    Consider surgery when you are in a lot of pain.

    Enjoy life! Stay active, do exercises, be healthy, don't gain weight.

    All the best, 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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Welcome to the forum...

    I agree with Susan, you should go and have an evaluation with a scoliosis surgeon. Just because you go in doesnít mean your having surgery, just go in and talk.

    All the folks at UCSF are great people. I didnít have surgery at UCSF, but have been to a few scoliosis meetings there, met everyone, and Linda and everyone are fantastic people. Itís a really good vibe...

    Where are you located in Northern California?

    Staying active is important with scoliosis....walking and hiking are good activities, especially up at Tahoe! (smiley face)

    Ed
    49 yr old male, now 58, the new 53...
    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

  4. #4
    Join Date
    Mar 2016
    Posts
    2
    - My doc recommended I go to Stanford and they say I can see a non-surgical doctor or a surgical doc. So maybe the non-surgical doc first?

    - How do you keep in a good mental state? I'm a bit bummed that my scolisosis progressed, not sure why but I did have 2 kids in my 30's.



    Thanks everyone for your kind replies!

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Ok, at Stanford, I would start with Dr Hu.....You will like her. Just go in and see what she says.

    She is a scoliosis guru.

    https://med.stanford.edu/profiles/serena-hu

    Scoliosis happens and its not anyoneís fault.....Never assign blame.

    How do I keep in a good mental state? I think that having hope is probably the most important thing. Even when I was in major pain, I always knew that it would be temporary, and that there was an answer.... I have been around people with genetic and terminal diseases, scoliosis just doesnít compare. We have what we have, I always make the best of any situation. Negativity never gets anyone anywhere.

    Having a good sense of humor is important.....

    Ed
    49 yr old male, now 58, the new 53...
    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

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    If you're not interested in surgery at this time, I recommend that you see a Physician's Assistant at either UCSF or Stanford.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Love, love, love Dr. Hu! She is awesome! I am unsure who her current PA is currently, but if the PA/NP works with her, that person is highly competent!
    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 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at 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 + prayer

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