2nd Annual UCSF Scoliosis Multidisciplinary Patient Conference

[titaniumed]

"You guys really missed it! You should have been here yesterday!"

No, Im not talking about the Austrailian surfers in the movie "The endless summer". (Smiley face)

Another fantastic meeting!

A big thank you to Linda, and everyone at UCSF!

Always a learning experiance.
Ed

[rohrer01]

I wish I could have been there. Maybe some of you "uh-hum" that were able to go can fill us in on the highlights! :-)

[LindaRacine]

Thanks Ed. Last night, when I was still making copies of presentations at 10PM, and this morning, when I got back to work, having been away for <8 hours, I was really wondering why I took all this on a second time. (You missed the woman yelling at me because it took her an hour to find us.... wondering why we hadn't put up signage. Hmmmm... guess she didn't see the 30 day-glo orange signs that it took me an hour to put up this morning and 45 minutes to take down tonight.) Then, everyone was so complimentary about the value of the conference, and it made it all worthwhile. I think next year, we need to move back to just doing an adult conference (and perhaps do a separate conference for AIS), as the day was just really long. Having left a little early, you missed the fact that we essentially got locked in. The sliding glass doors that go into the Medical Sciences building got locked, and we couldn't get out of the courtyard. Thankfully, we could get back into the School of Nursing because we hadn't all left at the same time, and I called security to come and save us.

This year, I'm definitely going to get the presentations up on the web. Hopefully next week. I'll post a message when it's available.

--Linda

[rohrer01]

This year, I'm definitely going to get the presentations up on the web. Hopefully next week. I'll post a message when it's available.

--Linda

Thank you, Linda. That would be very helpful and is very nice of you to go out of your way to do that for us.

[titaniumed]

Linda, I might have missed all the commotion early, but was running late and my driving was similar to the way Steve McQueen drove in the movie “Bullitt” only it was 7AM LOL

Ahh.....streets of San Francisco.....

http://www.youtube.com/watch?v=ZWgR2...eature=related

I bailed early as I had a long drive....and ran into Dr Berven in scrubs in the hallway...that was quite a surprise, I guess that’s why Dr Hu wasn’t there all day. Don’t these guys ever stop doing surgery? wow!

Thx for putting up the signage.....without it, it would have been quite a puzzle finding the lecture hall.

Ok, Rohrer....a tidbit. Dr Koo, the specialist in pain mgmt mentioned that “weaning” of ANY drug can be done with a 20% reduction per week (without withdrawl). Just remember 5 weeks. The last week or final 20% is always the hardest part. I wanted to ask about “Paxil” withdrawl since I have read that that is THE hardest to wean from, but didn’t.....

I didn’t take notes as I forgot my glasses.....I just try to remember the things that are new to me.
Ed

[rohrer01]

Ed, thanks for the tips. I took Paxil for several months before I knew I had a heart condition that contraindicated it. I just stopped cold turkey, which I know you're not supposed to do. The only side effect I had was a little paranoia (always thought hubby was going to get mad at me the way ex did). I had some crying spells. I didn't have the brain zaps, that I got after being on prozac (also before heart dx) for only a month or two. THAT was aweful, as they lasted for about a year. I've detoxed off of pain meds many times. I think klonopin is the hardest to detox from, as the worst side effect is gnarly migraines.

Hey, would you do me a favor and look at my new x-rays? Please... Tell me what you think?

[titaniumed]

They have tested patients and parents about “knowledge” of scoliosis surgery, this was part of the “decision making” talks.

The test scores were not good. People are flunking.

I was sitting there thinking that this stuff is quite a bit to take in. Kids and parents do get exited about these things. I have read and thought about this subject for many years, so its easy for me....but, they want better test scores, people to understand exactly what they are doing.

We have had many decision making threads here and its probably the hardest part of the whole thing.

Its good to be an active forum member.......people can ask here without being nervous in front of a surgeon.

So, if you don’t know something, anything. Please ask. We can get you an answer. Know what you are doing.

There are so many of you readers that are out there that have not signed up. There are also many scoli’s that are out there totally unaware of NSF. Sign up, read and post!!! Its our disease.....learn all you can.

Remember to keep smiling!
Ed

[titaniumed]

I took a peek, but have been in Steve McQueen mode all weekend.(smiley face) I just got back home.

You have action up high, and nice straight section and a problem down low. I have not seen an x-ray like yours, it almost seems like you need to be fused up high and down low. Either 2 sections or one very long fusion.

I don’t know as I’m not a surgeon, but I also learned one thing this weekend

Long fusions carry more risk of complications.
Short fusions carry more risk for future surgery.

Words of wisdom

Ed

[rohrer01]

Thanks. The only thing wrong down low is a spina bifida occulta at L5 and DDD at L5/S1. I thought the L3/4 disc looked like it is wedge shaped. This is the first film that I've had that it looks that way. Thanks for looking!

[jrnyc]

let me please clear my throat....uh uh uhmmmmm...
TiEd...i KNOW i missed it....anyone else on the east coast knows they missed it, too...
we are aware of that.....

there is no similar conference being offered on east coast that i know of....
i would love to go to one of these...
and to see patients....i could meet you guys who have been fused to sacrum/pelvis and who tell me it is way easier than it sounds...
when i went to Lyme conferences years ago, we tried to eat breakfast or lunch with the best Lyme doctors...
great way to find out what is new or upcoming in the field....

however, i cancelled my last CA trip. a few months ago...not up to flying due to pain....
so i know i couldn't fly out for a conference....

would have loved to have been there....
any chance of a synopsis of some sort coming out...?

jess

[LSKOCH5]

Would love to have one of these on the east coast, but that. Isn't going to happen before Jacob's surgery next month. Linda, were the sessions taped or videoed? I'd love the opportunity to hear them if so.

[mabeckoff]

[QUOTE=titaniumed;130317

Long fusions carry more risk of complications.
Short fusions carry more risk for future surgery.



Ed[/QUOTE]

Ed, can you please explain your statement about long fusions carrying more risk of complications?

Thanks

[rohrer01]

Ed, can you please explain your statement about long fusions carrying more risk of complications?

Thanks

Obviously I'm not Ed, but it would make sense that the longer the fusion, the longer the surgery would take. Any time you are under anesthesia there are risks. It is riskier to be under for a long time because they have to keep giving you those drugs to keep you asleep. Another risk is infection. If you are open for a very long time, there is more time for bacteria to drop into the wound. Surgical suites are kept as clean as possible and , I believe, have their own air ventilation systems, but no human is sterile in the sense of not having any bacteria on them. There would also be more risk of blood loss the longer they operate. Ed can correct me if I'm wrong, but those are just some of the things that come to mind.

[mabeckoff]

Obviously I'm not Ed, but it would make sense that the longer the fusion, the longer the surgery would take. Any time you are under anesthesia there are risks. It is riskier to be under for a long time because they have to keep giving you those drugs to keep you asleep. Another risk is infection. If you are open for a very long time, there is more time for bacteria to drop into the wound. Surgical suites are kept as clean as possible and , I believe, have their own air ventilation systems, but no human is sterile in the sense of not having any bacteria on them. There would also be more risk of blood loss the longer they operate. Ed can correct me if I'm wrong, but those are just some of the things that come to mind.

All of those risks I was aware of. I was wondering if , after surgery,longer fusions carried more risks. Thanks for answering, even if you are not Ed.

[titaniumed]

All of those risks I was aware of. I was wondering if , after surgery,longer fusions carried more risks. Thanks for answering, even if you are not Ed.

These were general statements, and logical. Rohrer covered it well.

I lost my gall bladder about 15 months after my scoli surgeries. This is an “extremely” rare complication of scoliosis surgery. It doesn’t bother me at all. The attacks were a drag at the time, but now I’m fine.

It makes no sense worrying about a possible “rare” event. Its like worrying about getting hit by lighting, or crashing while driving like Steve McQueen. (smiley face)

Being pain free is the main goal, and of course getting your arm working again. I hope you are feeling better.

Ed