Looking for resources/contacts in Northern California

[livelifetofull]

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!

[susancook]

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

[titaniumed]

Welcome to the forum...

I agree with Susan, you should go and have an evaluation with a scoliosis surgeon. Just because you go in doesn’t mean your having surgery, just go in and talk.

All the folks at UCSF are great people. I didn’t have surgery at UCSF, but have been to a few scoliosis meetings there, met everyone, and Linda and everyone are fantastic people. It’s 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

[livelifetofull]

- 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!

[titaniumed]

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 anyone’s 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 doesn’t 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

[LindaRacine]

If you're not interested in surgery at this time, I recommend that you see a Physician's Assistant at either UCSF or Stanford.

[susancook]

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