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LindaRacine
10-03-2011, 04:17 PM
Save the date -- 12/3/2011

Register for UCSF Scoliosis Patient Conference (https://mail.ucsf.edu/owa/redir.aspx?C=3bc561dd96aa47e188ea21afe22a479a&URL=https%3a%2f%2forthosurg.ucsf.edu%2fpatient-care%2fscoliosis%2fregister.cfm)

Elisa
10-03-2011, 04:21 PM
I'm getting a message that says I need to log in. What exactly is the "2nd Annual UCSF Scoliosis Multidisciplinary Patient Conference"?

LindaRacine
10-04-2011, 03:35 PM
Sorry, here's the correct URL:

https://orthosurg.ucsf.edu/patient-care/scoliosis/register.cfm?js=1

This is a conference for patients and parents. Last year, it was just for adult patients. It's a series of talks about various treatments (including surgery, yoga, Pilates, injections, etc.). The most likely agenda will include adolescent/teen treatment options in the morning, cross-over topics mid-day, and adult options in the afternoon.

--Linda

titaniumed
10-05-2011, 03:05 AM
Last years meeting was fantastic! For those seeking information about any scoliosis related topics, there were many scoliosis surgeons and doctors available to answer many and any questions.

Since most surgeons are extremely busy people, its awfully nice of them to make things like this happen.

I also hear there is going to be a big pizza and soda party, and I’m feeling a little low on grease.
Just kidding...lol
Ed

LindaRacine
10-07-2011, 12:06 PM
Here's the tentative agenda:

Spine Anatomy
Types of Scoliosis
Overview of Adolescent Treatment Options
Making an Informed Decision in AIS
What do Kids Care About Most
What to Expect if Your Child Needs Surgery
What Causes Pain in Scoliosis
Physical therapy
Yoga
Pilates
Nerve Monitoring in Spine Surgery
Injections
Surgical Options for Adult Scoliosis
What to Expect if you Have Scoliosis Surgery
Anesthenia in Spine Surgery
Making an Informed Decision about Adult Scoliosis Surgery
Spine Surgery Outcomes
Post operative PT
Patient Panel

mabeckoff
10-09-2011, 02:36 PM
I would love to go to this but I do not know if I would be up to going

jrnyc
10-09-2011, 02:47 PM
hi Melissa
i think sitting for all that time proved that your body still needs to do a lot of healing!
please do not attempt travel and more sitting...
sometimes when we push our bodies too hard, we pay a huge price for doing so!
it has taken so long for you to get the right surgeon and the right surgery....it would
be a shame to risk messing it up!
that is just my opinion...written out of concern for you...
hope you take it in the spirit it is presented....

hoping you feel better soon...
jess

mabeckoff
10-09-2011, 03:44 PM
hi Melissa
i think sitting for all that time proved that your body still needs to do a lot of healing!
please do not attempt travel and more sitting...
sometimes when we push our bodies too hard, we pay a huge price for doing so!
it has taken so long for you to get the right surgeon and the right surgery....it would
be a shame to risk messing it up!
that is just my opinion...written out of concern for you...
hope you take it in the spirit it is presented....

hoping you feel better soon...
jess

Oh I know that I am not going .There is no way that I could do it, whether I was in a car or flew
Thanks for the advice
Melissa

mabeckoff
10-09-2011, 04:12 PM
I am going to try to sit in the car 2 1/2 hours to go to San Diego on Thanksgiving. I can sit 1 1/2 hours to go to the hospital so we will have to make a stop in the middle of the trip

Elisa
10-09-2011, 04:23 PM
Sounds like a good plan Melissa. I have a turkey cooking in the oven right now and I can smell it, mmmm.

Pooka1
10-09-2011, 05:27 PM
Sounds like a good plan Melissa. I have a turkey cooking in the oven right now and I can smell it, mmmm.

For those in the US who might be confused, Canada also celebrates Thanksgiving and it is tomorrow.

By the way, I think they claim they started observing the holiday before the US did. It obviously doesn't revolve around Plymouth. MA but I forget what it does commemorate.

LindaRacine
10-20-2011, 12:24 PM
New, shortened URL for registering

http://orthosurg.ucsf.edu/scoliosis2011

rohrer01
10-22-2011, 11:19 AM
When do you have to register by?

LindaRacine
10-22-2011, 12:34 PM
We haven't set a date, but I suspect we'll have a cutoff about a week prior to the event. The auditorium that we're using seats about 150, so there could feasibly be a cutoff if we fill up, but I don't actually think that will happen.

LindaRacine
11-25-2011, 09:57 PM
Hi...

Just reminding folks of this event. It's a week from tomorrow. A full day of all sorts of information about scoliosis, with lunch provided by NuVasive and Better Way Back. There is no charge to attend, but you must register by Thursday, December 1.

http://orthosurg.ucsf.edu/scoliosis2011

--Linda

titaniumed
12-03-2011, 11:15 PM
"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
12-03-2011, 11:38 PM
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
12-04-2011, 12:33 AM
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
12-04-2011, 07:38 AM
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
12-05-2011, 12:38 AM
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=ZWgR2vYE2_o&feature=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
12-05-2011, 01:24 AM
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
12-05-2011, 01:35 AM
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
12-05-2011, 01:45 AM
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
12-05-2011, 02:03 AM
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
12-05-2011, 03:44 AM
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
12-05-2011, 06:05 AM
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
12-05-2011, 08:38 AM
[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
12-05-2011, 10:06 AM
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
12-05-2011, 12:12 PM
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
12-05-2011, 08:50 PM
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

LindaRacine
12-05-2011, 11:45 PM
In terms of peri-op complications, it's mostly the bleeding issues, but there are just generally more risks the longer one is under anesthesia. In terms of post-op complications, you can simply do the math. For examine, if there is a 2% risk of a pseudarthrosis in patients with 6 fusion levels, there is probably somewhere in the neighborhood of a 4% risk in patients with 12 fusion levels. I don't know whether the study that Dr. Deviren mentioned controlled for patient age. On average, the older you are, the larger the number of fusions needed. So, it could simply be a matter of age = higher peri-op complication risk.

Ed, Dr. Hu had to leave because her daughter had some school function. Although she works pretty long hours, I think she generally tries to not let work take over her life. Dr. Berven was on call this weekend. He had to do an emergency surgery Saturday afternoon, and again after we finished around 6PM Saturday night. When I left work around 7 tonight, he was still there, with one emergency surgery still left to do, after having been awake and operating or seeing patients since 4PM on Sunday. If he's lucky, he'll be able to get home and pack before a 1AM flight to the other side of the world. I frequently tell people that he's a super hero, with his super power being that he never has to sleep (with the exception of a few moments when a patient won't stop talking ;-)

--Linda

jrnyc
12-06-2011, 12:16 AM
how much of a risk is post op infection...?
i still think of Joy (Joyful) now and then, wonder if she got any better...

jess

titaniumed
12-07-2011, 12:51 AM
Linda

You work with some incredible people. They are all great. I had many questions, but didn’t want to over tap the resources. lol Some questions really are hard to answer in under 60 seconds. For the correct answers it takes many hours of reading and many books and studies.

I did have a chat with Dr Burch in the hallway and he seems like a great person. Its nice to get surgeons cornered for a few minutes.....wow, you have to think fast to get your answers.

I don’t know if you overheard my question about SI joints eventually fusing, Dr Burch mentioned that they do fuse with pelvic screws. I guess this proves that SI joints do move somewhat, just enough, to keep from fusing before surgery.

Once again, great conference. Taping next year would be a good idea. I thought that it was being taped, but didn’t notice since I was up front. Thanks for getting the better room with the nice seating.

Ed

LindaRacine
12-07-2011, 01:05 AM
how much of a risk is post op infection...?
i still think of Joy (Joyful) now and then, wonder if she got any better...

jess

Spine (Phila Pa 1976). 2011 Apr 20;36(9):E593-7.
Scoliosis research society morbidity and mortality of adult scoliosis surgery.
Sansur CA, Smith JS, Coe JD, Glassman SD, Berven SH, Polly DW Jr, Perra JH, Boachie-Adjei O, Shaffrey CI.
Source
University of Maryland School of Medicine, Baltimore, MD, USA. csansur@smail.umaryland.edu
Abstract
STUDY DESIGN:
A retrospective review.

OBJECTIVE:
To obtain an assessment of complication incidence using the largest known database of adult scoliosis and to determine whether the rate of complication depends on various clinical parameters.

SUMMARY OF BACKGROUND DATA:
The Scoliosis Research Society (SRS) morbidity and mortality database has previously been used to assess complication rates in adolescents undergoing scoliosis correction. To better understand complications in adults, degenerative and idiopathic adult scoliosis (AS) cases were studied.

METHODS:
The SRS morbidity and mortality database was queried to identify cases of AS from 2004 to 2007. Complications were identified and analyzed on the basis of patient type of scoliosis (degenerative vs. adult idiopathic), age, use of osteotomy, revision surgery status, and surgical approach. Age was stratified into less than or equal to 60 and greater than 60. Surgical approach was stratified into anterior only, posterior only, and combined anterior/posterior.

RESULTS:
A total of 4980 cases of AS were submitted from 2004 to 2007. There were 521 patients with complications (10.5%), and a total of 669 complications (13.4%). The most common complications were dural tear 142 (2.9%), superficial wound infection 46 (0.9%), deep wound infection 73 (1.5%), implant complication 80 (1.6%), acute neurological deficits 49 (1.0%), delayed neurological deficits 41 (0.5%), epidural hematoma 12 (0.2%), wound hematoma 22 (0.4%), pulmonary embolus 12 (0.2%), and deep venous thrombosis 9 (0.2%). There were 17 deaths (0.3%). There were 2555 patients with degenerative and 2425 patients with adult idiopathic scoliosis. Complication rates in these two groups were not significantly different (11.0% and 9.9%, respectively, P = 0.20). Age was not associated with complication rate (P = 0.32). Significantly higher complication rates were identified in osteotomies, revision surgery, and/or combined anterior-posterior surgery (P = 0.0006, 0.006, and 0.03, respectively).

CONCLUSIONS:
The overall complication rate for AS treatment is 13.4%. Complication rate is significantly higher when osteotomies, revision procedures, and combined anterior/posterior approaches are used. Complication rate is not influenced by scoliosis type or age.

LindaRacine
12-07-2011, 01:10 AM
Linda

You work with some incredible people. They are all great. I had many questions, but didn’t want to over tap the resources. lol Some questions really are hard to answer in under 60 seconds. For the correct answers it takes many hours of reading and many books and studies.

I did have a chat with Dr Burch in the hallway and he seems like a great person. Its nice to get surgeons cornered for a few minutes.....wow, you have to think fast to get your answers.

I don’t know if you overheard my question about SI joints eventually fusing, Dr Burch mentioned that they do fuse with pelvic screws. I guess this proves that SI joints do move somewhat, just enough, to keep from fusing before surgery.

Once again, great conference. Taping next year would be a good idea. I thought that it was being taped, but didn’t notice since I was up front. Thanks for getting the better room with the nice seating.

Ed

Hi Ed...

I did hear the conversation. I believe he said that they fuse "across the SI joint", but that the joint is typically not fused. Iliac bolts have a tendency to break because there's no fusion at the SI joint. I think he said that the SI joints are stabilized in the process, but I'm not sure what that means. I'll ask him the next time I"m in clinic with him.

I don't know if it's permanent, but I had issues with what I think was right S-I joint pain on and off for 20 years. After my January fusion with iliac screws, I have not had a single episode of that pain. I suspect that the S-I joints may become less mobile with iliac screws.

--Linda

LindaRacine
02-18-2012, 01:17 PM
Most of the presentations are now available online:

http://orthosurg.ucsf.edu/node/833

titaniumed
02-19-2012, 01:55 AM
There is valuable info here, even without audio

Thx Linda
Ed

susancook
12-21-2012, 02:22 PM
Sorry, here's the correct URL:

https://orthosurg.ucsf.edu/patient-care/scoliosis/register.cfm?js=1

This is a conference for patients and parents. Last year, it was just for adult patients. It's a series of talks about various treatments (including surgery, yoga, Pilates, injections, etc.). The most likely agenda will include adolescent/teen treatment options in the morning, cross-over topics mid-day, and adult options in the afternoon.

--Linda

Linda, I was out of the country for the conference. Was it taped? Sounds like just what I need and I really regret not being able to attend. Thanks, Susan

LindaRacine
12-21-2012, 10:01 PM
Not recorded, sorry.

titaniumed
12-22-2012, 10:18 AM
Linda

Any thoughts on a 3rd meeting?........

Susan. If you take me along to Mexico, I WILL carry your suitcases..... Some destinations really are helpful for scoliosis therapy, Mexico is one of those places. (smiley face)

Ed

LindaRacine
12-22-2012, 12:21 PM
Ed...

Probably September or October 2013.

--Linda