PDA

View Full Version : Advice tips and tricks for 1st timers? +Anyone have experience with Dr Beederman?



LeanneJ
10-08-2018, 01:48 PM
Hello,

I have a scoliosis curve in my thoracic and it turns about mid-back and curves the opposite way with a much more severe curve in my lumbar. My left hip has twisted and is so much higher than my right that it is scraping my lower rib. I am told it is spodyliosis curve and I am plagued with terrible sciatica and nueropathy. I have avoided surgery for 4 very painful years. However, a piece of my spine that was holding L4 & L5 together has broken off and is floating free. L4 is poised on the edge of L5 like its hanging off a cliff and ready to slip over the edge at any time. This makes the pain even more intense and my quality of life has gone from a 5 on a scale of 1 - 10 to about a 2. I am mostly sleeping and sitting on the couch with ice and of course I'm heavily medicated. I am afraid to ride my horse, work out or even ride my bicycle anymore, all things I was able to do before the bone broke off. I am very frightened that I may accidentally fall due to my right leg feeling like it wants to go out from under me at any time and the intense sciatica is running down both legs and now to my feet...that being said I believe that I am in a seriously dangerous position and holding off from surgery is no longer an option. I have scheduled surgery with Dr. Beederman in Orange, Ca for November 13th and 14th. He was not my first choice but the Dr I wanted dropped out of my insurance network. I am not finding much information about him on the internet and I'm very nervous. If anyone knows of him or better yet, has had surgery with him I would appreciate any feedback. He is going to fuse from T10 to S1 and he will be putting posts in my pelvis for support.
I would also appreciate hearing from people that have had a surgery similar to the one that I will be undergoing. Tips and tricks for getting by after the surgery would be helpful as well. I have never had a surgery this intensive and quite frankly I'm terrified!

This is what the order says he is doing: L4-S1 Anterior Interbody Fusion, L1-L4 Anterior Interbody Fusion through left Trans-Psoas approach, T10 to Pelvis Posterior Spinal Instrumented Fusion, L3-L4 Laminectomy. He is going to operate on Nov 13th and Nov 14th and it could take up to 10 hours in total.I'm not sure what all those terms mean it sounds pretty major!

Thanks for your help and support,

Leanne J

titaniumed
10-08-2018, 06:32 PM
Hi Leanne

You poor thing.... It sounds like you need some work done....Some of us around here have also waited like you, so your not alone.

Dr Bederman is an excellent scoliosis surgeon. He worked on Melissa many years ago, but she has not posted in years. She was an extremely difficult revision spine case....

Where to start?

Are you solo? Are you doing this recovery alone?

I want you to know that my surgeries saved my life, no doubt about it. Sometimes we have no choice. It was something that had to happen and I am forever thankful.

Ask any questions you want.

Ed

LeanneJ
10-08-2018, 08:14 PM
Hi Leanne

You poor thing.... It sounds like you need some work done....Some of us around here have also waited like you, so your not alone.

Dr Bederman is an excellent scoliosis surgeon. He worked on Melissa many years ago, but she has not posted in years. She was an extremely difficult revision spine case....

Where to start?

Are you solo? Are you doing this recovery alone?

I want you to know that my surgeries saved my life, no doubt about it. Sometimes we have no choice. It was something that had to happen and I am forever thankful.

Ask any questions you want.

Ed

Hello Ed,

Thanks for your kind response. Thankfully I have my husband to care for me after I come home from rehab. I also have a strong network of mostly retired friends that have offered to set up and run an app to help me with recovery. They will share in helping with house/horse chores, food, bathing, visit me and give my husband a break when he needs it. So I am very blessed. I know I have to do this, as my legs, feet, hips and knees are also feeling the repercussions of this condition and are in stages of degeneration. Also, I want to correct the issue before I do something that sends L4 sliding off of L5 and leaves me partially paralyzed. I have heard that internal organs can start to be affected and I don't want to wait for that to happen. Of course, I want to get back to my usual activities such as horse back riding, dancing, gardening, working out and hiking and biking. My biggest nightmare is going through a very complicated surgery and long rehab to find out that along with still having severe, handicapping pain and maybe even nerve damage from the surgery, I may not be able to do any of these things any longer.

What did you have done and how long ago? Have you completely recovered or do you still have restrictions in your activities?

Thanks,
Leanne

titaniumed
10-08-2018, 11:35 PM
What did you have done and how long ago? Have you completely recovered or do you still have restrictions in your activities?


T2-Pelvis A/P 10-1/2 years ago. My x-ray is in my signature below.

I had a huge anterior, (ALIF) vertical incision from the sternum all the way down the front. Spacers installed from L1-S1

2 days later, they flipped me over and installed all the rods and screws. Synthes Pangea system all titanium. No bone (Allograft or Autograft)was used in my surgeries, all synthetics and BMP.

Recovery took 2 years. 90% in the first year, the final 10% took another year. Long recovery, had broken shoulder and arm going into my spine surgeries, and lost my Gall Bladder 15 months later.

We get released at some point from our surgeons. Here is a skiing video of me (In red jacket) in Jan 2011 3 years post Donner Summit, Ca
https://www.youtube.com/watch?v=4tEypv3Vz8o&t=1s

I didn't ride a horse for 7 years.....I was actually down in Colombia visiting family and they breed Paso Fino horses. They are a smooth ride....so no problems with the back. I rode for 4 hours. (smiley face)
https://en.wikipedia.org/wiki/Paso_Fino

When they install the spacers, it lifts and separates and creates room for nerves around the spine. Its a HUGE relief to get this done in lumbar patients. I battled sciatica for 6 years, and when I stood up in ICU, it was gone, I knew right away. They get you up in a day standing on your feet. I had 4 lumbar disc herniation's in a 70 degree lumbar curve. I had a 70/70 balanced S curve before my surgeries.

Recovery involves a lot of walking. Not marathons that inflame, just a lot of short walks during the day. I would walk almost every hour for 10-15 minutes. The walking distributes blood and nutrients into healing zones so we can heal.

Ed

LeanneJ
10-09-2018, 01:52 AM
T2-Pelvis A/P 10-1/2 years ago. My x-ray is in my signature below.

I had a huge anterior, (ALIF) vertical incision from the sternum all the way down the front. Spacers installed from L1-S1

2 days later, they flipped me over and installed all the rods and screws. Synthes Pangea system all titanium. No bone (Allograft or Autograft)was used in my surgeries, all synthetics and BMP.

Recovery took 2 years. 90% in the first year, the final 10% took another year. Long recovery, had broken shoulder and arm going into my spine surgeries, and lost my Gall Bladder 15 months later.

We get released at some point from our surgeons. Here is a skiing video of me (In red jacket) in Jan 2011 3 years post Donner Summit, Ca
https://www.youtube.com/watch?v=4tEypv3Vz8o&t=1s

I didn't ride a horse for 7 years.....I was actually down in Colombia visiting family and they breed Paso Fino horses. They are a smooth ride....so no problems with the back. I rode for 4 hours. (smiley face)
https://en.wikipedia.org/wiki/Paso_Fino

When they install the spacers, it lifts and separates and creates room for nerves around the spine. Its a HUGE relief to get this done in lumbar patients. I battled sciatica for 6 years, and when I stood up in ICU, it was gone, I knew right away. They get you up in a day standing on your feet. I had 4 lumbar disc herniation's in a 70 degree lumbar curve. I had a 70/70 balanced S curve before my surgeries.

Recovery involves a lot of walking. Not marathons that inflame, just a lot of short walks during the day. I would walk almost every hour for 10-15 minutes. The walking distributes blood and nutrients into healing zones so we can heal.

Ed

Thanks for your response Ed. It sounds like you are one of the fortunate ones that made it through the surgery (with a lot of hard work, sweat & determination) and came out better on the other side. I am seeing so many terrifying horror stories and your story made me feel much more hopeful. What kind of exercises can I be doing before surgery that will help me in recovery? I try to do some core work on the floor and some back work with light weights when pain permits. Do you know of a site I can go to for this kind of information + I'd like to know more about what I can do after the surgery to get the flexibility & mobility that you have achieved. I saw something on one of your responses about stool stretches so that you could finally be able to tie your shoes. Is there a place on this forum or somewhere I can go to get more information about pre-op preparation and post op rehab exercises that I can do myself? BTW, you are an inspiration and a wealth of knowledge. You are so very generous with helping other people that are going through this. I have seen your many posts to others with fears, questions and frustrations. God Bless you!

Leanne J

titaniumed
10-09-2018, 10:01 AM
Leanne

There really isn't any reason to do any exercises a month from scoliosis surgery....and after, there really isn't too much to do other than just walking. Your body will set your recovery time frame, not a maximum exercise regiment. Over exercise will set you back, and soft tissue injuries do happen and they can really be painful.

My surgeon wanted me losing weight, so no bread, no pasta. Eating healthy to boost immune system is the best thing you can do right now.

How old are you? Are you osteoporotic? This is important....work through your surgeon on this.

Get Dr Bederman's nurses e-mail address for communication. This is the best way to communicate. Ask 2-3 questions max, don't write a book of questions.

We have had a few horror stories here, rod breakers, infections, revisions etc, but everyone makes it through. Getting through without pain is a goal, but sometimes that doesn't happen. The main thing is that its going to be an improvement. Dr Bederman wouldn't do this if he didn't think it would help. The good Scoliosis surgeons are far from cut happy, they are also THE highest trained in medicine, so, dictate all medical needs through him. Why use a GP who knows little about scoliosis? I changed my PCP to my scoliosis surgeon. He will select your vascular surgeon for your ALIF, use him for any future vascular needs. I had a group of specialists working on me, all highly trained. 2 scoliosis surgeons and a vascular surgeon.

Ed

LindaRacine
10-09-2018, 11:50 AM
Hi Leanne...

You can find much of Melissa's journey with Dr. Bederman here:

http://www.scoliosis.org/forum/showthread.php?12078-CA-bound

Dr. Bederman was a fellow at UCSF when I first started working there in 2010.

Also, you can find a list of helpful tips on scoliosis surgery recovery here:

1999

Hope that helps. It's old, but it's still mostly relevant. Best of luck with your journey.

--Linda

LeanneJ
10-09-2018, 11:31 PM
Thanks so much Linda! I would like to see your journey as well. Someone mentioned it in a string. Would you be so kind as to send me a link?

Regards,

Leanne

LeanneJ
10-10-2018, 12:09 AM
Leanne

There really isn't any reason to do any exercises a month from scoliosis surgery....and after, there really isn't too much to do other than just walking. Your body will set your recovery time frame, not a maximum exercise regiment. Over exercise will set you back, and soft tissue injuries do happen and they can really be painful.

My surgeon wanted me losing weight, so no bread, no pasta. Eating healthy to boost immune system is the best thing you can do right now.

How old are you? Are you osteoporotic? This is important....work through your surgeon on this.

Get Dr Bederman's nurses e-mail address for communication. This is the best way to communicate. Ask 2-3 questions max, don't write a book of questions.

We have had a few horror stories here, rod breakers, infections, revisions etc, but everyone makes it through. Getting through without pain is a goal, but sometimes that doesn't happen. The main thing is that its going to be an improvement. Dr Bederman wouldn't do this if he didn't think it would help. The good Scoliosis surgeons are far from cut happy, they are also THE highest trained in medicine, so, dictate all medical needs through him. Why use a GP who knows little about scoliosis? I changed my PCP to my scoliosis surgeon. He will select your vascular surgeon for your ALIF, use him for any future vascular needs. I had a group of specialists working on me, all highly trained. 2 scoliosis surgeons and a vascular surgeon.

Ed

Hello Ed,

I am 56 years old and have been battling/postponing this decision for 4 years. I am living with the pain and medicating + getting epidurals, facet blocks and having ablasions to keep going. I have been told that I do have osteopenia but it is right on the borderline of being bad enough to have to take meds and the side effects sounded terrifying. I got a bone density test done before I went to Dr Bederman and expressed my concerns. He is going to put me on a daily shot (Forteo or something like it) 30 days before surgery which will help the bones to get stronger. He also said it would help them to heal after the surgery.

What you said about exercise makes sense. I guess there will be a lot of exercises that PT will put me through afterwards to help to get my muscles back into shape. I really want to get my flexibility to the maximum as well. I want to be able bend over to pet my beautiful Golden Retrievers while standing up again someday and of course I've go to be able to check my horse's feet and legs. From what I've read that may never happen and if it does it will take quite some time. I don't mind the work, the time or the pain it takes to get there. I just can't stand the though of never being able to do everyday normal activities ever again, like bending over to pick something up off the floor or bending down to get something off of the bottom shelf of the pantry or and of course being able to give myself pedicures. LOL

Thanks for the tip on getting the nurses's emails. They are really busy and sometimes it takes a few calls/days to get a return call. I will ask if they will give them to me. I think email is a much quicker way to communicate + they can forward it on to whoever needs to answer it.

I pray that this surgery will improve things, but I see so many stories of how people went from Bad to Worse after surgery. When I got back into this forum I started reading the string about people who are very sorry & upset that they chose to get the surgery. Some even say that it ruined their quality of life or took away. I looked around for some "Happily Ever After" strings but did not find very many and the ratio of good to bad stories really frightens me. I also read a few strings where people said they felt the rods and metal cages inside of them like a scratchy internal metal brace and were in constant nerve pain, lost control of their bowels, legs or worse. Now anxiety is keeping me awake at night. I asked Dr. Bederman if I could speak to some of his previous patients that have had surgeries like the one I'm about to undergo. I am not sure if that is going to happen but I am happy to have this scoliosis forum community to talk with. I don't feel like I am going through this alone anymore.

Thank you again for your advice and compassion,

Leanne J

LindaRacine
10-10-2018, 12:56 PM
Thanks so much Linda! I would like to see your journey as well. Someone mentioned it in a string. Would you be so kind as to send me a link?

Regards,

Leanne

Hi Leanne...

I'm sure I've posted my story before, but finding it among the thousands of posts would be difficult. The short version is:

* Diagnosed with scoliosis by a chiropractor in my early 30s, though almost certainly had it as a child. I had a lot of neck and lower back pain, but it would mostly come and go.
* After a particularly bad bout of sciatica while out of town, I finally went to see a scoliosis specialist.
* Surgeon recommended surgery, but said there was no hurry.
* I spent a year or two figuring out all the logistics, and had surgery (ALIFs T11-L3 and PSF T4-L3) in 1992.
* After recovery, I had about 8 good years without pain.
* Around 2000, my lower back pain returned. Surgeon said there was some deterioration in 2 levels below fusion.
* From 2000-2008, I dealt with the pain by doing daily PT exercises. It didn't cure the pain, but it did allow me to function fairly normally.
* In 2009, I would get horrible muscle spasms in my rib cage every time I tried to do my PT exercises, so I stopped. My lower back pain worsened, but I was still reluctant to have more surgery, knowing that it would eventually mean that I'd need to be fused to the sacrum.
* In 2010, after volunteering for about a year, I started working at the UCSF Spine Center, as a research coordinator. Shortly thereafter, I started having sciatic pain again. Xrays and CT showed significant degeneration from L3-S1, which meant my worst fear was coming true, and that I would need fusion to the sacrum. I tried to ignore it, but by mid-2010, I could only stand for a few minutes. I could only walk about half a block before I had to sit down.
* I gave in and had revision surgery in February 2011 (L4-S1 ALIFs and L3-S1 PSF with pelvic fixation). I stayed with a friend for a few days after being released from the hospital, then went home and took care of myself. I was back at work about 3 months later.
* I no longer have low back pain or sciatica, so I'm happy from that perspective. I do, however, absolutely hate the loss of flexibility. I also had several complications from surgery, which I will have to deal with for the rest of my life.

--Linda

susancook
10-15-2018, 12:09 AM
I pray that this surgery will improve things, but I see so many stories of how people went from Bad to Worse after surgery. When I got back into this forum I started reading the string about people who are very sorry & upset that they chose to get the surgery. Some even say that it ruined their quality of life or took away. I looked around for some "Happily Ever After" strings but did not find very many and the ratio of good to bad stories really frightens me. I also read a few strings where people said they felt the rods and metal cages inside of them like a scratchy internal metal brace and were in constant nerve pain, lost control of their bowels, legs or worse. Now anxiety is keeping me awake at night. I asked Dr. Bederman if I could speak to some of his previous patients that have had surgeries like the one I'm about to undergo. I am not sure if that is going to happen but I am happy to have this scoliosis forum community to talk with. I don't feel like I am going through this alone anymore.



Leanne, First of all, stop, stop, stop reading the stories of the "Sorry that I had surgery". I read and reread them also before surgery and it did little to help my attitude.

I had surgery at 66 and although I am among the group who have had numerous complications, I remain happy that I had the surgery. My life was toast before surgery. Mostly pain pills, ice bags, and sitting around waiting for the pain to decrease. I had every procedure possible multiple times trying to postpone the surgery.

A therapist told me that in most forums dealing with physical diseases or problems, that most of the people that continually post are the ones with problems. Certainly that is not true for everyone here, but many of us come back with problems and then repost. So many of the folks with a great postop recovery fade off and live life.

Take some deep breaths and TRUST your surgeon.

Susan

titaniumed
10-15-2018, 01:34 PM
Leanne

Around the time I started posting 10 years ago, there were a whole bunch of successful "happy I did surgery" members that were posting.....If you need a list, I will name them. Some pop in from time to time, but a lot of years have passed, and what happens is that we adjust and forget our scoliosis. Forgetting scoliosis is possible, I have done it. Sometimes, we have to do this for our sanity. Easier done when we are younger....

We went quite a while, a few years then the "not so happy" thread was started, and also a broken rod thread or broken rod club. The rod breakers! Rods break when we don't fuse. Pseudarthrosis can happen, and sometimes they don't know why this happens.... Biochemistry? Many rods break in the low bending position, reaching into low cabinets. Its nice to know when we are fused, and you really only know after many years have passed. They can look with CT, but the acid test is after many years. So, recovery which involves eventual lifting and some bending, is a progressive thing where you know what you can get away with by past history. I don't do lower cabinets. I don't do "lower" anything really, and if I do, I get down with a squat or on all 4's. I rarely bend over anymore these days.

Dogs are great companions.....and they know when you are in pain. Oh, they know, BIG TIME, but only the dogs that know you. Your dogs. Not your neighbors dog who wants to jump up on the greeting. In recovery I used ski poles on my outdoor walks, these come in handy at warding off over friendly loose dogs....I don t bend over to pet large dogs, it isn't necessary because you can reach the top of his head. After you do couch training, you sitting on couch or chair, and you establish exactly how much LOVE you will receive from Fido, the dog will understand. Its easier to pet a dog while sitting in a chair.

Complications happen in scoliosis surgery. Its rare that serious complications happen and all the infection and rod breakers get through and eventually recover. Lingering pain is something that happens hopefully, its less than what you have now. I do get the occasional jolt every now and then, and numbness. But numbness is acceptable over burning electrical pains. My neck is also roasted. I also have bear traps, the gripping sensation in the thoracic surgical zone and is quite common. Its scar tissue related tightness.

I have not seen any testimonials of rod breaking in patients that have had ALIF or anterior cages installed. You are having this done. The joint gets fused from the front and the back, so a much stronger fusion.

All the anxiety I had leading into my surgeries was unnecessary. You will realize after you get done.

These sorts of difficult posts require a lot of typing and internet communication is difficult. Attending a local scoliosis meeting is a good thing....you will meet all scoliosis patients, young and old. All different cases....Linda used to throw a great Scoliosis conference at UCSF. It was nice to be able to corner Dr Burch at the coffee machine.....(smiley face) I also cant remember if I met Dr Bederman years ago, he didn't speak at the podium, but I think Linda introduced me to him and another resident.

Ed

LeanneJ
10-15-2018, 06:44 PM
Leanne, First of all, stop, stop, stop reading the stories of the "Sorry that I had surgery". I read and reread them also before surgery and it did little to help my attitude.

I had surgery at 66 and although I am among the group who have had numerous complications, I remain happy that I had the surgery. My life was toast before surgery. Mostly pain pills, ice bags, and sitting around waiting for the pain to decrease. I had every procedure possible multiple times trying to postpone the surgery.

A therapist told me that in most forums dealing with physical diseases or problems, that most of the people that continually post are the ones with problems. Certainly that is not true for everyone here, but many of us come back with problems and then repost. So many of the folks with a great postop recovery fade off and live life.

Take some deep breaths and TRUST your surgeon.

Susan

Thank you so much Susan! I have been a little freaked out all weekend so I stuck my head in the sand till I realized that I have less than one month to go till surgery!

LeanneJ
10-15-2018, 06:58 PM
Leanne

Around the time I started posting 10 years ago, there were a whole bunch of successful "happy I did surgery" members that were posting.....If you need a list, I will name them. Some pop in from time to time, but a lot of years have passed, and what happens is that we adjust and forget our scoliosis. Forgetting scoliosis is possible, I have done it. Sometimes, we have to do this for our sanity. Easier done when we are younger....

We went quite a while, a few years then the "not so happy" thread was started, and also a broken rod thread or broken rod club. The rod breakers! Rods break when we don't fuse. Pseudarthrosis can happen, and sometimes they don't know why this happens.... Biochemistry? Many rods break in the low bending position, reaching into low cabinets. Its nice to know when we are fused, and you really only know after many years have passed. They can look with CT, but the acid test is after many years. So, recovery which involves eventual lifting and some bending, is a progressive thing where you know what you can get away with by past history. I don't do lower cabinets. I don't do "lower" anything really, and if I do, I get down with a squat or on all 4's. I rarely bend over anymore these days.

Dogs are great companions.....and they know when you are in pain. Oh, they know, BIG TIME, but only the dogs that know you. Your dogs. Not your neighbors dog who wants to jump up on the greeting. In recovery I used ski poles on my outdoor walks, these come in handy at warding off over friendly loose dogs....I don t bend over to pet large dogs, it isn't necessary because you can reach the top of his head. After you do couch training, you sitting on couch or chair, and you establish exactly how much LOVE you will receive from Fido, the dog will understand. Its easier to pet a dog while sitting in a chair.

Complications happen in scoliosis surgery. Its rare that serious complications happen and all the infection and rod breakers get through and eventually recover. Lingering pain is something that happens hopefully, its less than what you have now. I do get the occasional jolt every now and then, and numbness. But numbness is acceptable over burning electrical pains. My neck is also roasted. I also have bear traps, the gripping sensation in the thoracic surgical zone and is quite common. Its scar tissue related tightness.

I have not seen any testimonials of rod breaking in patients that have had ALIF or anterior cages installed. You are having this done. The joint gets fused from the front and the back, so a much stronger fusion.

All the anxiety I had leading into my surgeries was unnecessary. You will realize after you get done.

These sorts of difficult posts require a lot of typing and internet communication is difficult. Attending a local scoliosis meeting is a good thing....you will meet all scoliosis patients, young and old. All different cases....Linda used to throw a great Scoliosis conference at UCSF. It was nice to be able to corner Dr Burch at the coffee machine.....(smiley face) I also cant remember if I met Dr Bederman years ago, he didn't speak at the podium, but I think Linda introduced me to him and another resident.

Ed

Thank you again Ed. You are right, I will try to find a meeting in my area. I am going to the hospital tomorrow for a class on spinal surgery and I have loaded several scoliosis books on my Knook. Also, I went to see a scoliosis surgeon with neurosurgery experience on Thursday. Both the Dr and his PA new of Dr Bederman and his work and had nothing but praise for him. The surgeon assured me that I am in capable hands with Dr. Bederman. I wish I had more time to prepare, mentally and physically but I will just have to do the best I can.

titaniumed
10-15-2018, 07:52 PM
Leanne

No time is a good time to have our surgeries.....

Here is the Dr Boachie "Surgery Saved my life" video and thread. Its graphic, but informative.

Also read all the posts.....

http://www.scoliosis.org/forum/showthread.php?15691-Dr-Boachie-quot-Surgery-saved-my-life-quot-video

Ed

LindaRacine
10-16-2018, 11:35 AM
Attending a local scoliosis meeting is a good thing.

Unfortunately, there are very few (physical) scoliosis support groups left, at least here in the U.S.

titaniumed
10-17-2018, 12:06 AM
Unfortunately, there are very few (physical) scoliosis support groups left, at least here in the U.S.

Hmmm.....I wonder what happened? You had quite a list of meetings years ago on your old site.

Well, as far as I am concerned, the meetings you arranged at UCSF years ago couldn't have been any better....Everyone there was just fantastic! Since you are not there anymore, someone else at the scoliosis dept should initiate something....Also with more frequency.....perhaps every month, each doctor can pick each meeting and subject matter. I am guessing there were around 150-200 people at each meeting? The logistics needs a lot of thought.....All the major scoliosis centers should think about this. Perhaps a National program? Your going to absorb much more interacting personally, than online.

I will admit, some things you never forget. At one of the Sutter meetings in Sacramento, a lady was crying (melting down) on my shoulder since she was rejected for her osteoporosis....Its why I think and know that there are many surgical candidates that REALLY need surgery that are scared and keep putting it off. I was one of those and did just that over 34 years.....If it wasn't for the high levels of pain, I guess it wouldn't have happened. I also had the time frame thing on my mind, I knew that in my situation that I was running out of time, things were only going to get harder if I waited.

Scoliosis is an incredibly complex disease....with many or most treatments that are so time sensitive. Its all about timing, knowing how to control pain and emotions over a lifetime......Its never as simple as, just wear this brace, or just do yoga, or just do a physical therapy program because we change so much through the years. Alternative options, then surgical options. New technology also changes things...

Its quite a learning curve! It takes a long time to understand whats happening and what will happen to our bodies as time passes....

And we are all so different but so similar....

Ed

LindaRacine
10-17-2018, 11:40 AM
Ed....

Most support group leaders will tell you that attendance was a problem. For my group, I typically had the same 6-8 people each month, plus maybe one or two new or occasional attendees. A lot of the speakers felt there wasn't enough of an audience, and wouldn't commit to coming back in the future. And, as a support group leader, I can tell you that while it was always nice to see my scoli friends at each meeting, it truly wasn't worth the effort of trying to find locations and chase down a speaker each month. I remember being very embarrassed when, after almost stalking Dr. Bradford for months, to come back and speak to the SF group, he finally agreed. We had like 7 attendees. I was pretty embarrassed.

When the internet came along, the need for physical meetings dwindled drastically.

--Linda

titaniumed
10-17-2018, 10:19 PM
The smallest group I attended was when Dr Benson spoke in Sacramento....You were there... 40-50 people?

That had to be quite a letdown when you had Dr Bradford lined up. That is such a shame..... I would have just passed out and fallen on the floor....

When was your first meeting? Was it in San Francisco?

Ed

LindaRacine
10-18-2018, 11:12 AM
I think the largest meeting I attended was probably about 15-20 people. I can't remember ever attending one with 40 people. I think the big half day meeting I held at UCSF (that took months of planning) with free lunch, and a dozen speakers, only drew about 35 people.

My first meeting was in SF, probably around 1991. I didn't start leading the group until many years later.

--Linda

titaniumed
10-18-2018, 10:16 PM
I guess my eyesight is going bad, I am seeing triple these days.....(smiley face)

Ed