19 Year Old Male. Scoliosis Progressing.

[JDM555]

Yes. I would like all the S1 fused patients to please give me their opinions. I know TitaniumEd is down to S1, but he's from neck all the way down. I know LindaRacine's revision consisted of a similar problem as what I was faced. She had surgery years back, and it was to L3, then it had to be extended down to S1 and now she says it got rid of the pain. Anyone's help would be appreciated. I am leaning towards that because it would kind of eliminate the risks in the other surgeries where I would need more surgery down the road, but I just want to return to a semi-normal life where I can gym and not live in pain on a daily basis and be miserable.

I'll definitely ask my surgeons about that option, and talk to Bederman!

[mabeckoff]

Yes. I would like all the S1 fused patients to please give me their opinions. I know TitaniumEd is down to S1, but he's from neck all the way down. I know LindaRacine's revision consisted of a similar problem as what I was faced. She had surgery years back, and it was to L3, then it had to be extended down to S1 and now she says it got rid of the pain. Anyone's help would be appreciated. I am leaning towards that because it would kind of eliminate the risks in the other surgeries where I would need more surgery down the road, but I just want to return to a semi-normal life where I can gym and not live in pain on a daily basis and be miserable.

I'll definitely ask my surgeons about that option, and talk to Bederman!

Have you made an appointment with Dr Bederman? he asked me about you this morning.I am , also, fused to S1 but it is from C2. Good luck with your decision

[Doreen1]

Praying for you, John.

Melissa,

I am , also, fused to S1 but it is from C2. Good luck with your decision

Why did you need cervical fusion?

Warmly,
Doreen

[JenniferG]

Yes. I would like all the S1 fused patients to please give me their opinions. I know TitaniumEd is down to S1, but he's from neck all the way down. I know LindaRacine's revision consisted of a similar problem as what I was faced. She had surgery years back, and it was to L3, then it had to be extended down to S1 and now she says it got rid of the pain. Anyone's help would be appreciated. I am leaning towards that because it would kind of eliminate the risks in the other surgeries where I would need more surgery down the road, but I just want to return to a semi-normal life where I can gym and not live in pain on a daily basis and be miserable.

I'll definitely ask my surgeons about that option, and talk to Bederman!

Regarding flexibility, I was like you when I was told I would be fused to sacrum. Trading less flexibility for no pain and the likelihood of no further surgery down the track, wasn't a difficult choice for me. Getting rid of the pain = getting my life back. As it turns out, there's nothing I can't do now, although some actions I do differently. I need to bend my knees or spread my feet to pick something off the floor. I don't look or feel rigid. My back feels strong. One thing. My surgeon told me I shouldn't run/jog because doing so would put undue pressure on the unfused portion of my spine above T4. Other surgeons may have different ideas.

Wishing you the very best of luck, John!

[JDM555]

Have you made an appointment with Dr Bederman? he asked me about you this morning.I am , also, fused to S1 but it is from C2. Good luck with your decision

No, I haven't made an appointment. I'm trying to figure out why he stopped replying to my emails out of the blue though. I just tried sending another email from my other account, hopefully he responds because he was the nicest and most helpful surgeon regarding second opinions. Dr. Hey was great too. I'm surprised he asked about me, that means he's still concerned enough to at least remember me, which means my emails weren't reaching him, hopefully he replies. If he wants me to fly down, it's not an issue, but since money is tight, I'd pick phone consult over that lol.

Praying for you, John.

Thank You Doreen.

Regarding flexibility, I was like you when I was told I would be fused to sacrum. Trading less flexibility for no pain and the likelihood of no further surgery down the track, wasn't a difficult choice for me. Getting rid of the pain = getting my life back. As it turns out, there's nothing I can't do now, although some actions I do differently. I need to bend my knees or spread my feet to pick something off the floor. I don't look or feel rigid. My back feels strong. One thing. My surgeon told me I shouldn't run/jog because doing so would put undue pressure on the unfused portion of my spine above T4. Other surgeons may have different ideas.

Wishing you the very best of luck, John!

Thanks Jennifer. See this is what I want to read. By looking at my before X-Rays below, can you tell me if your lumbar curve was lower than that or around the same? I don't care about flexibility. Sure it's a plus, but being 6'5, I've never had to ability to be "flexible" lol. I couldn't reach my toes while stretching or do yoga or do whatever, I just want to live pain free and have a strong back that can support me. I want to get rid of my pain so I can get my life back too, I really want that. And the fact you and Ed and others fused to the Sacrum are living normal lives with this "less flexibility" issue, it makes me want to do it more. Being 19 at the time of surgery, some surgeons would say "Oh NO! You're so young, we don't want to affect your flexibility!". I think that is so stupid, I'm sorry. How does saving my flexibility and causing me pain from discs beneath the surgery and having the thought in the back of my mind telling me "You're not 100% fixed, you WILL need surgery down the road", sound like a good idea? It's not like you're in a body cast and can't bend whatsoever when you're fused down to Sacrum, you can still bend, and in the condition I am in now, bending is completely OUT of the picture even only fused to L3. I can't remember the last time I needed to bend forward or backward as far as I can in day to day life. So just the fact that I can enjoy my life knowing my spine is 100% solid and no discs to worry about, sounds like a great trade off.

http://i30.photobucket.com/albums/c3...48/John3-1.jpg

[mabeckoff]

Praying for you, John.

Melissa,


Why did you need cervical fusion?

Warmly,
Doreen

In January, in NC, with my first surgeon, I had 4-5-6 fused together because I had horrible pain in my left shoulder and he felt that by fusing 4-5-6 it would help. It did help except for the fact that I now tilted terribly because my body could not stay upright . Dr Bederman and I thought that by connecting my fusion it would work our better for me . It did work out better as now I am not tilted at all anymore

Any more questions just ask

[JenniferG]

[Thanks Jennifer. See this is what I want to read. By looking at my before X-Rays below, can you tell me if your lumbar curve was lower than that or around the same? I don't care about flexibility. Sure it's a plus, but being 6'5, I've never had to ability to be "flexible" lol. I couldn't reach my toes while stretching or do yoga or do whatever, I just want to live pain free and have a strong back that can support me. I want to get rid of my pain so I can get my life back too, I really want that. And the fact you and Ed and others fused to the Sacrum are living normal lives with this "less flexibility" issue, it makes me want to do it more. Being 19 at the time of surgery, some surgeons would say "Oh NO! You're so young, we don't want to affect your flexibility!". I think that is so stupid, I'm sorry. How does saving my flexibility and causing me pain from discs beneath the surgery and having the thought in the back of my mind telling me "You're not 100% fixed, you WILL need surgery down the road", sound like a good idea? It's not like you're in a body cast and can't bend whatsoever when you're fused down to Sacrum, you can still bend, and in the condition I am in now, bending is completely OUT of the picture even only fused to L3. I can't remember the last time I needed to bend forward or backward as far as I can in day to day life. So just the fact that I can enjoy my life knowing my spine is 100% solid and no discs to worry about, sounds like a great trade off.

http://i30.photobucket.com/albums/c3...48/John3-1.jpg[/QUOTE]

I looked at your x-ray and it looks a lot like mine pre-op. But I am not good at reading x-rays. Mine is the second to bottom link in my signature, see what you think. Or others might be able to help regarding levels.

One other point, as well as not running, my surgeon suggested I not lift heavy weights, for the same reason: keeping the vertebra above the fusion healthy. He was not concerned about the fused area, just the levels above. But then, I'm a lot older than you. This is something you might ask the surgeon you decide to go with.

I think you're on the right track John. I'd love to know what Dr. Bederman would say about your case. I think it's worth following up.

[JDM555]

Yup. Right after commenting that post, I noticed you have the pictures in your sig, and wow that looks pretty damn close. Yours was worse though. About 10-15* worse, but same location and curve. I don't care too much about running, but lifting weights ehhh lol.

I actually got a hold of Dr. Bederman and wow, what an awesome and kind surgeon to spend that much time talking with someone who's not even a patient. He answered MANY questions and gave me a different approach. He suggested instead of jumping in a big risky surgery which can lead to an irreversible fusion down the road, that I should try taking care of the issues one by one. Instead of saying my hardware is causing pain on L3-L4, he said to do radiofrequency ablation on the facet joint under my hardware that might be causing some pain. I asked him what that means, and he said basically to burn the nerve and stop it from sending any pain signals to my brain. When he said that, my local surgeon said that is a possibility too, instead of big surgery, do a small minimally invasive surgery to fuse the lower levels and cut off the feeling/signals from the facet joint.

He suggested XLIF which creates a very small incision (under an inch) and to just try to see if the failed fusion is causing all the pain. The three issues the doctor said might be causing my pain is asymmetrical loading and no fusion, this will take care of both. I still have a lot coming up on the week of the 20th, but he said if I want, I can come down and do an appointment and he can check me out in person and go over everything, and then if I wanted to schedule surgery asap, early-mid October might be a possibility.

Lot of things going on in my mind. Too many options and different surgeons and different medical records everywhere and different tests are coming up. I'm just having a hard time picking the right option.
John

[jrnyc]

i think it is important to ask the surgeon
about lifting weights post surgery....otherwise, after surgery,
if you are not permitted to life heavy weight, a doctor could
say you didn't understand because you never asked
about it....
you need to be sure it would not be forbidden after surgery, since'
the gym is so important in your life....

jess

[JenniferG]

Yup. Right after commenting that post, I noticed you have the pictures in your sig, and wow that looks pretty damn close. Yours was worse though. About 10-15* worse, but same location and curve. I don't care too much about running, but lifting weights ehhh lol.

I actually got a hold of Dr. Bederman and wow, what an awesome and kind surgeon to spend that much time talking with someone who's not even a patient. He answered MANY questions and gave me a different approach. He suggested instead of jumping in a big risky surgery which can lead to an irreversible fusion down the road, that I should try taking care of the issues one by one. Instead of saying my hardware is causing pain on L3-L4, he said to do radiofrequency ablation on the facet joint under my hardware that might be causing some pain. I asked him what that means, and he said basically to burn the nerve and stop it from sending any pain signals to my brain. When he said that, my local surgeon said that is a possibility too, instead of big surgery, do a small minimally invasive surgery to fuse the lower levels and cut off the feeling/signals from the facet joint.

He suggested XLIF which creates a very small incision (under an inch) and to just try to see if the failed fusion is causing all the pain. The three issues the doctor said might be causing my pain is asymmetrical loading and no fusion, this will take care of both. I still have a lot coming up on the week of the 20th, but he said if I want, I can come down and do an appointment and he can check me out in person and go over everything, and then if I wanted to schedule surgery asap, early-mid October might be a possibility.

Lot of things going on in my mind. Too many options and different surgeons and different medical records everywhere and different tests are coming up. I'm just having a hard time picking the right option.
John

Yes, lots to think about. What Dr. Bederman said is another option again, and I think, one, if it was me, I'd definitely consider. Are you going to see him? You probably haven't decided yet. It would be wonderful if this one minimally invasive surgery fixed your problem. Good luck with your decision!

[JDM555]

Yes, lots to think about. What Dr. Bederman said is another option again, and I think, one, if it was me, I'd definitely consider. Are you going to see him? You probably haven't decided yet. It would be wonderful if this one minimally invasive surgery fixed your problem. Good luck with your decision!

I am definitely considering it. It was an option, but it was frowned upon before because I thought the problem is all related to the placement of the hardware and what not. Plus, I thought they would open me up from back and do it. I didn't think it was worthy of that much pain just to add bonegraft. But to do a small 2-3cm incision and add bonegraft, and then get up and walk out of hospital in 3 days and return like it's nothing is just making me think, WHY THE HELL DID THE SURGEONS THAT FOUND OUT I HAD NO FUSION MONTHS AGO NOT RECOMMEND IT! External bone stimulator and get more opinions and take NSAID's. So lame, this could of been done a LONG time ago. I want to see him, but it most likely won't cost under $500 to visit him by plane/taxi/hotel/etc.

I'm still not sure what to do, but I hope I make the right decision. The thing is, with this decision, it's very easy because even if it's not the right decision, it's got very little risks compared to the removal of all my hardware and adding new hardware and removing discs and what not. If all my pain is gone just cause of non union, I'll be the happiest man alive lol.

[JenniferG]

I can fully understand your frustration, even anger(?) But keep on track, because you'll get there. You've just had to jump hurdles along the way, like Melissa and some others have/are still doing.

[jrnyc]

just my opinion, the MI approach definitely sounds worth
trying to me....
it would be a great place to start...
and i hear you....it WOULD be the best thing that could happen if it
worked!
what are the down sides...?
needing another surgery IF the procedure didn't help?
that would be awful...but is that the only downside?

jess

[JDM555]

just my opinion, the MI approach definitely sounds worth
trying to me....
it would be a great place to start...
and i hear you....it WOULD be the best thing that could happen if it
worked!
what are the down sides...?
needing another surgery IF the procedure didn't help?
that would be awful...but is that the only downside?

jess

Well, downside is it still doesn't fuse? But I think it would fuse fine this time, very small risk. Maybe infection and all that stuff, but with an incision that small and barely any blood loss, it's much easier than the traditional back surgery. And I could walk out in 3 days and return to whatever, so it's not crazy.

Now, the thing regarding needing another surgery even IF I get fused, isn't really a downside, because the point of it is to fuse my levels, not fix my pain. Fusing the levels might be the cause of the pain, it's that's not for sure. So it's not a downside or risk of the surgery, if it does it's job and fused, then it's successful I guess.

I just hope I can figure out what to do, and to pick the right surgeon. Being that it's a simple surgery, I don't mind flying down to LA to do it. But if it was the major, it wouldn't have been fun on the way back or traveling right after the surgery.

[mabeckoff]

Well, downside is it still doesn't fuse? But I think it would fuse fine this time, very small risk. Maybe infection and all that stuff, but with an incision that small and barely any blood loss, it's much easier than the traditional back surgery. And I could walk out in 3 days and return to whatever, so it's not crazy.

Now, the thing regarding needing another surgery even IF I get fused, isn't really a downside, because the point of it is to fuse my levels, not fix my pain. Fusing the levels might be the cause of the pain, it's that's not for sure. So it's not a downside or risk of the surgery, if it does it's job and fused, then it's successful I guess.

I just hope I can figure out what to do, and to pick the right surgeon. Being that it's a simple surgery, I don't mind flying down to LA to do it. But if it was the major, it wouldn't have been fun on the way back or traveling right after the surgery.

I am sure that if you did major surgery with Dr Bederman, he would want you to stay in rehab for 2 weeks or so so he could check on you as you live so far
away

Glad that you two got to talk together about your situation