Susie Bee: You have an eloquent ability to convey the feelings of inclusiveness and communication. Thank you for your thoughtful response.
Originally Posted by Susie*Bee
I see this blog as mostly a friendly "help each other" with helpful hints and support. I learn so much from other people's experiences and SO appreciated the support that I receive from the members. I laugh when I read the adolescent blog and some of them are back in school after 3 weeks! I do not see this blog as a professional blog, but do appreciate the postings of new research studies.
There are many things that we do that do not appear to have a research basis, but that we take for granted. One of these is wearing a brace postop. I thought that everyone wore a brace postop, but after reading this blog, I have found out that there are many excellent surgeons who do not have their patients wear braces. I have worked as a researcher on NIH grants, so I consider myself basically an evidence based person in making choices. Having said that, in dealing with hot flashes earlier in my life, I took herbal products which had good anecdotal evidence [from my fellow hot flashin' mamas] but little/no evidence based medical research. That was OK with me, but I did that knowing the level of research upon which I was basing my decision.
I believe that there should never be room on this blog for arrogance and put down....nor pissing matches over my credentials are better than yours. We each have a personal story to share and sometimes cry about and all of us have needed reassurance at times.
My doctor's RN, Joanne, at my initial visit, told me not to go on line to the scoliosis blog as they had horror stories. I sat there quietly, knowing that I was already enmeshed in this blog for the good, that is for the support and helpful hints. [Folding reachers....who knew, thanks Irina!] As Susie said, I am also isolated and depend on my scoliosis friends to help me figure this whole journey out. If it were not for this blog, I would not have found my totally awesome surgeon, Dr. Serena Hu! Maybe I should tell Nurse Joanne about that!
2011: Degenerative Adult Onset Scoliosis @65
25* T levoscoliosis/ 36* L dexroscoliosis w/ 11.2 cm coronal & 3.5 cm sagittal balance T kyphosis 90*
Severe disc degen thoracic & lumbar stenosis
Surgery: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
3/2013, Dr. Hu @ UCSF
Postop hernia @ ALIF incision repaired 2014
8/2014: Rev surgery OHSU Dr. Hiratzka hardware removal T3-T5; reinstrument & revision fusion T3-T6
Proximal Junctional Failure w/ SCI
Cauda Equina Syndrome