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LindaRacine
07-17-2010, 11:57 PM
The UCSF Orthopaedic Spine group and the Scoliosis Association of San Francisco are hosting a forum for adult scoliosis patients on Saturday, August 7, at UCSF in San Francisco, CA. The conference will run from approximately 8AM-1PM.

UCSF faculty and staff, as well as experts from elsewhere, will discuss both surgical and non-surgical therapies for dealing with adult scoliosis. Presenters include UCSF M.D.s Serena Hu, Sigurd Berven, Vedat Deviren, Bobby K-B Tay, Shane Burch, Sibel Demir-Deviren, and Peter Koo, as well as Elise Browning Miller, Amy Selinger DPT, Suzanne Martin DPT, Nancy Byl DPT, and Jo-An Aguirre RN.

Topics include Spine Anatomy, What's Causing My Pain?, Physical Therapy, Yoga, Pilates, Spinal Injections, Pharmaceutical Pain Management, Adult Scoliosis Surgery - What's Involved?, Adult Scoliosis Surgery - What's the Process?, Making an Informed Decision, Spine Surgery Outcomes, and Post Op Physical Therapy.

This forum is free to the public, but space is limited.

For more information or to register please call:
(415) 476-8362 or email racinel@ orthosurg.ucsf.edu (remove the space)

No on-site registration. You must pre-register to attend.

titaniumed
08-08-2010, 11:40 AM
You guys really missed it! You should have been here yesterday!

I can start with San Francisco. A place with so many things to do and see and with so much history, its hard to drive 3 blocks because you are passing up something fantastic. sigh.....One could write about this for ever and ever. Ahh... Streets of San Francisco.

Next would be UCSF. Wow! What can I say? First place for this, first place for that. First to do this, first to do that. I donít know where to start, and if I did, I wouldnít know where to end. I donít think there is an end. Read just a little, and you will see what I'm talking about.....
http://en.wikipedia.org/wiki/UCSF

And the meeting. What a GREAT bunch of people!....It is amazing how much dedication there is. These Doctors who are extremely busy people, some of the best on the planet, sit down and hang out with us and talk and answer any questions at all. I figured with the agenda that certain Doctors would speak for their allotted time, and run promptly while watching the second hand, but that was not the case at all....

While sitting down and chatting with this guy about my recovery, he was asking me all sorts of questions about my surgeries. We chatted for quite some time, and I figured that he was a scoli due to his concerned look, and I asked him how bad his curves were. Suddenly, he was asked up to the podium, he said he was Dr Burch..... Oh boy. I'm such a dweeb sometimes.......LOL

The meeting covered quite a bit for its very short timeframe....All the experts spoke on different topics, PT, Yoga, Pilates, Spinal Injections, Meds, Surgery, Anesthesia and nerve monitoring, and making an informed decision. It was quite a bit of information to absorb, and was a little hard for me to sit there for so long, but overall, it was a fantastic meeting. For anyone who needs questions answered, these kinds of meetings are invaluable...

Linda Racine organized the event, and works with these fantastic people. I just have to say thank you for your work, your dedication to helping scolis, and helping out with NSF. You are truly invaluable, and help many of us who suffer from scoliosis.

And the Doctors, what can I say? You truly are the best! Thank you for caring so much.
Ed

Back-out
08-08-2010, 12:21 PM
...The meeting covered quite a bit for its very short timeframe....All the experts spoke on different topics, PT, Yoga, Pilates, Spinal Injections, Meds, Surgery, Anesthesia and nerve monitoring, and making an informed decision. It was quite a bit of information to absorb, and was a little hard for me to sit there for so long

Sounds fabulous, Ed! I gather there weren't any summary papers available to be put on line? (ever-hopeful). All those topics and especially that last, sound like music to my ears - what a great way to put together my thinking! And RIGHT NOW...

Was it conducted so that there was, in effect, a "menu" for each time slot from which one chose one of several topics being presented then? How many presenters were there?

I'd think that with a list of presenters and their topics, it night well be possible to obtain a copy of a particular paper by contacting their offices. I'll bet they would be glad for their prepared talk to reach a wider audience. And I feel SURE many of us would love to have that "smorgesbord" of topics to refer to!

What talks/speakers did you personally find most interesting and informative? Any tidbits gleaned to pass on? Directions they report research is taking? Glad we had a roving reporter on the spot, and thank you for reporting, Ed!

Back-out
08-08-2010, 12:41 PM
Almost forgot. You indicated it
was a little hard for me to sit there for so long
Are you referring to physical discomfort (related to your back/surgery) or just being kind of a "man of action" who gets antsy in a passive lecture format?

l've gotten to where very few chairs (least of all, the usual folding style) are tolerable and I have trouble imagining this changing with or without surgery. Seems to have to do with having short calves. If the seat isn't low (at most 16 " from the floor ), it tugs at my lumbar area.

I'm sure you don't have that problem! You'd think w/ the influx of Asians (many seem to have the same leg geometry I do), they 'd be making shorter chairs more universally available. I was completely knocked out of commission (for DAYS) from sitting for three chatty hours at what promised to be a very comfy restaurant seat - a padded semi circle, but HIGH!

Just a combo gripe and curiosity about how you may still be affected by your extensive surgery in "little" ways. This is one that can affect ones life-style, quite a lot, though - especially true for someone like me - a perpetual student/audience member/passenger. I expect to spend most of my remaining life sitting - if possible! (Without surgery, I'm apt to be reduced to reclining, instead. That's increasingly the sad reality now :().

Hence, I prick up my ears if I hear a hint that our post-op pin-up boy may have on-going troubles with sitting at length even though he can (INCREDIBLY) go back-packing. Hoping this was more a result of your man of action preferences...

LindaRacine
08-08-2010, 01:22 PM
Thanks Ed. And thanks again for coming to my rescue. (One of our department volunteers was supposed to help me get things set up yesterday, but he showed up about 30 minutes late. Ed helped get the room set up, and was really a life saver.)

It was a great day. A few speakers went a little long, but everyone did a fabulous job of getting a lot of information disseminated in a very short amount of time. We had planned to provide lunch for the crowd, but the funding got pulled. So, we had to jam a lot of information into a very small period of time. I knew it would be difficult for some people to sit for that long with only one short break. Next year I hope to obtain funding from one of our implant companies, which will allow us to make it a full day event.

I am going to ask for permission to put each of the PowerPoints up on the internet for download, and will keep you posted.

--Linda

Doodles
08-08-2010, 08:58 PM
Linda--That would be great if we could see the power point. Sounds very interesting--wish I were in California so I could have gone. Janet

jrnyc
08-09-2010, 12:12 AM
Ditto, Janet...:)

jess

titaniumed
08-09-2010, 01:54 AM
Amanda,

Tidbits? Well, One of the things that I didnít realize is the fact that interlaminar epidural injections need to be placed within 1/2mm. .020 true position, for the shots to be effective. This is now accomplished with "O" arms vs "C" arms so they can get the proper views. .020 is 5 blonde hairs, or the thickness of 2 matchbook covers. People that have shots need to realize that this will have an effect on the outcome of their shot.

Patients sometimes come in with vertebrae that is oddly shaped. These odd shapes are then run through a computer program and a "plan" of re-shaping is the result. This is of great benefit to the surgeon, to have this 3d information. It sure must be nice to know what wall thicknesses you are working with. Again, with advanced flouroscopy systems, very expensive machinery....

The future was one of the questions that was addressed, and no hints were given, but of course, quite a bit can happen in the next 10 years....

Dr Burch mentioned that his oldest scoli patient was 94 or 95. The audience moaned a little after hearing that information. With people of that age, they just address the problem. Pain areas are located through exams and tests, and just 1 level might be fused in a curve. The rest they leave alone.

As far as sitting is concerned, with the hard plastic chairs lacking any lumbar support, any person would have problems sitting. We basically sat there and listened for 5+ hours.... My legs and feet would get a little numb, its to be expected with the hard constant pressure of a seat of that caliber. I guess I could have stood up in the back of the room, but things were going at a very fast pace.

Ed

Lorraine 1966
08-09-2010, 02:43 AM
First of all what I would have given just to be there. Secondly Linda you would be an absolute miracle worker if you could get some of this up on power point, especially I would love to hear about the nerve monitoring.
Ed you have a really good memory, thank you so much for all the detail you remembered so you could write about it :) (pats on the back) I would have loved to see your face when thinking you were talking to a fellow scoli and up on stage goes Dr Burch, I laughed about that one.
I can imagine those chairs would not have been at all comfortable, but all your numbness etc was worth it as far as this old girl over here in Aussie land was concerned.;)

Bless you, Linda and all the organisers
Lorraine.

debbei
08-09-2010, 05:56 AM
Wow Ed & Linda, it sounds wonderful. I would have loved to be there if it weren't for the fact that I'm on the other coast! I'd love to see the presentations if you are permitted to post them.

foofer
08-09-2010, 09:05 AM
Amanda,

Tidbits? Well, One of the things that I didnít realize is the fact that interlaminar epidural injections need to be placed within 1/2mm. .020 true position, for the shots to be effective. This is now accomplished with "O" arms vs "C" arms so they can get the proper views. .020 is 5 blonde hairs, or the thickness of 2 matchbook covers. People that have shots need to realize that this will have an effect on the outcome of their shot.

Patients sometimes come in with vertebrae that is oddly shaped. These odd shapes are then run through a computer program and a "plan" of re-shaping is the result. This is of great benefit to the surgeon, to have this 3d information. It sure must be nice to know what wall thicknesses you are working with. Again, with advanced flouroscopy systems, very expensive machinery....

The future was one of the questions that was addressed, and no hints were given, but of course, quite a bit can happen in the next 10 years....

Dr Burch mentioned that his oldest scoli patient was 94 or 95. The audience moaned a little after hearing that information. With people of that age, they just address the problem. Pain areas are located through exams and tests, and just 1 level might be fused in a curve. The rest they leave alone.

As far as sitting is concerned, with the hard plastic chairs lacking any lumbar support, any person would have problems sitting. We basically sat there and listened for 5+ hours.... My legs and feet would get a little numb, its to be expected with the hard constant pressure of a seat of that caliber. I guess I could have stood up in the back of the room, but things were going at a very fast pace.

Ed

Blonde hairs? What about brunette?!

Next year maybe they could have a special scoli section with foam everywhere! Like a typical children's area.

I would love to go to this event as well, and maybe next year if I'm not recovering from major massive scoli surgery. Oy vey.

Thanks Linda for this event and thanks Ed, for reporting in....

Long Gisland Amy

titaniumed
08-09-2010, 03:34 PM
Amy
Actually its pronounced Long "Guy"land. lol
Foam is a good thing. A foam party would be better....
Brunette hair is usually thicker.

Lorraine
Thanks. I try to remember as much as I can. Its easier to follow these presentations with some knowledge. Itís the newbies that can get overwhelmed with data...

I started a thread about SSEP's (nerve monitoring) and nobody was interested. Maybe I will fire that one up again. It really determines your correction, and is so important in our surgeries, and it eliminates the wake up tests.

On the subject of Tasmania, I might point out someone who deserves praise. She worked at UCSF
We could use more people like her.....
http://en.wikipedia.org/wiki/Elizabeth_Blackburn

Ed

foofer
08-09-2010, 04:06 PM
http://en.wikipedia.org/wiki/Elizabeth_Blackburn

Dr. Oz likes to talk about telemeres. That's my science contribution of the day....

jrnyc
08-09-2010, 06:28 PM
yes...like long guyland iced tea!! :)

jess

Back-out
08-09-2010, 08:37 PM
I started a thread about SSEP's (nerve monitoring) and nobody was interested. Maybe I will fire that one up again. It really determines your correction, and is so important in our surgeries, and it eliminates the wake up tests.

Me! I'M interested in SSEPs! Please, do let 'er rip. I'm also curious how the nerve monitoring can "determine our correction". I thought it was a safety precaution to avoid neurological damage while they're toying with our spine - that it was the only way to tell when something is getting pinched or cut the wrong way.

Not so?

I must be thinking of something else. I'm interested in everything to do with how surgeons decide how much correction to aim for when they're working us over. I gather they can guess in advance from bending Xrays, bone scans and whatnot, but that they don't really know what they can do until they have us "open" on the table.

That was (and is) a mystery to me too. Figured it must be from seeing - and feeling - how much bend they can out of our spines when they're actually working the vertebral "joints" back and forth.

That, and examining our bone density in situ - how it feels sawing the bony matrix in the places they need to attach the armature (hence seeing how many screws they need to get adequate "purchase" . For the rods and the altered curve - that is, without the risk that things will want to pull out.)

I'm sure I have all this WAY too mechanically visualized - comes of thinking like a sculptor.

I'd love to understand more how various surgeon's artistry/expertise expresses itself in deciding how much correction to aim for. Some forum folks get such dramatic corrections; others much less (to be painfully obvious). This appears to be much a function of the metal used; youth seems to help too. What's really behind the decision making is entirely conjectural. What allows for those HUGE swings in regaining plumb - and what makes it well or ill-founded? What is risk-taking for one but brilliant know-how for another??

We'll probably never know whether our friends' BIG corrections prove themselves over time - unless we stay in touch. Meanwhile, I'm just plain interested in the broad issue of correction (and maintaining it). My own will be just a single case. I'd love to understand what, including SSEPs, goes into making determinations.

LindaRacine
08-09-2010, 09:52 PM
I started a thread about SSEP's (nerve monitoring) and nobody was interested. Maybe I will fire that one up again. It really determines your correction, and is so important in our surgeries, and it eliminates the wake up tests.



Hi Ed...

While nerve monitoring is used in every case, it really only determines the amount of correction in a small percentage of cases where there are changes detected. Most patients never experience any change.

Regards,
Linda

Lorraine 1966
08-10-2010, 03:20 AM
Thankyou so much Ed, for that wonderful info on a brilliant Tasmanian. You really are the best.;) I think we could use more people like you as well, I really enjoy your posts, they bring a smile to my face a lot of the time as we have a similar sense of humour, and they make my brain work a little harder as well, which is good:D
Regards
Lorraine.