Ready for a kicker? pictures attached

[Pooka1]

Thanks so much, i've never heard of that, and i'll definetly ask about it at my next appt!!!
I love this forum!!

That is a good suggestion but you will likely have to go to a pediatric guy for the procedure. Not sure they can or would take an adult.

If Maria is reading, do you know if any of the guys doing VBS also do adult? Maybe at least one does.

That would be beyond cool if you were accepted for stapling as an adult. The stapling does help straighten without loss of flexibility. Seems like case study material. Very SPECIAL!

[leahdragonfly]

Hi Sharon,

interesting thought, but no, VBS in never done for adults. The idea behind VBS is growth modulation.

I am also curious to hear the outcome of this discussion, because it seems to me the OP is extremely flexible, but she still has significant curves. My personal thought is her curves are still significant, even though she can bend them both out.

Another question about the statement that curves are not structural if they bend to below 25 degrees...is this just in adults, or for curves above a certain size? Because a criteria for VBS is the ability to bend out the curve to under 20 degrees. This shows that the curve will be flexible enough to respond to VBS I think. Leah's 30-degree thoracic curve, for instance, bent out to around 10 degrees, but was still a structural curve. She was 8 at the time.

[Pooka1]

Hi Sharon,

interesting thought, but no, VBS in never done for adults. The idea behind VBS is growth modulation.

Yes but another use might be in large non-structural curves in adults just to gain some straightness through the thorax to save the lumbar. She might achieve a straight and flexible spine because she is so flexible. But that would be totally experimental and I doubt she could find someone to agree to even try.

I am also curious to hear the outcome of this discussion, because it seems to me the OP is extremely flexible, but she still has significant curves. My personal thought is her curves are still significant, even though she can bend them both out.

Even though it doesn't fit the general pattern of hysterical scoliosis (one long C curve from neck to S1), I think it could be hysterical and worth a shot of being put under just to see if it disappears.

Another question about the statement that curves are not structural if they bend to below 25 degrees...is this just in adults, or for curves above a certain size? Because a criteria for VBS is the ability to bend out the curve to under 20 degrees. This shows that the curve will be flexible enough to respond to VBS I think. Leah's 30-degree thoracic curve, for instance, bent out to around 10 degrees, but was still a structural curve. She was 8 at the time.

That's a good point. I think you are correct that the "<25*" is for adults and is essentially equivalent to some percent decrease in large structural curves which might be the actual metric. I don't know. Certainly most kids with lower than surgical range scoliosis could probably bend their curve to less than 25* so it would not apply. For example my one kid bent out a T55* to T 23* but still needed surgery. That is a 58% reduction by the way. The other kid could only bend out her T54* to a T31*. This brings up the issue of stiffness induced in brace that I have seen in print. The first kid who could bend out more never wore a brace and the second kid did this bending attempt after a year of night-time braces. Things that make you go hmmmmm.

[king14]

Dr. Suggestions...

I'd like to see what a number of these top guys think about your case.

How do i know if i'm going to the best? Can you name some of the best? I would be more than happy fly all over to see some of the best! ... Or at least send them my information to see what they say ...

[king14]

surgery scheduled

I think we're supposed to post on an old thread instead of making a new one, so here goes:
Surgery has been scheduled for at least 2 months.. for September 10th. I was all set on doing it, even made a pre surgery bucket list. Yesterday I competed in tough mudder. for those of you who have no idea what i'm talking about its one of the hardest obstacle courses on the planet- 10mtn mile hike 20 obstacle courses put together by British special forces. intense stuff. 5.5 hours of pure adrenaline!!

I had so much fun I emailed my surgeon when I got home to make sure I'd be able to do this again some day...

Anyway - today My mother asked her back surgeon about my case and he said the following things about me:
how old is she?? and bauked at my age (29)
She is in NO pain ??? then laughed
has no obvious deformity, or breathing problems??
His answer - THEN why do it?

My answer - I'm doing in to "preserve my lumbar spine" which has gotten worse, even tho compensatory, and my thoracic has only mildy gotten worse. 56 over 53
Fusion from T4- L1 seems better than a "possible future" T4 to Sacrum

Her doc says if I fuse now, so young, than I will eventually fuse those lower levels anyway - so why not wait and fuse them later...

Whats worse? - discs rubbing away at each other (which is happening in my lumbar spine) or a fusion rubbing away at a disc?

Then I ask myself - considering I was able to not only compete in a tough mudder and do EVERY obstacle and I FEEL FINE today... am I rushing into surgery to prevent something from happeneing, but may be worse off after surgery????

Then I think i'd rather do it now, with little pain, and in great shape then to wait to look more deformed and do it later. I'm super super confused.

HELP!!!

Video link of what tough mudder is (one minute long)
http://www.youtube.com/watch?v=vh5Hd...e_gdata_player

thanks for listening, and for opionions.

[Pooka1]

He welcome back!

Her doc says if I fuse now, so young, than I will eventually fuse those lower levels anyway - so why not wait and fuse them later...

This statement is false to my knowledge. I question whether this guys knows the research on scoliosis fusions. He might be generalizing from other types of cases.

There is at least one report where selective fusion of the thorax still had stable lumbars after a few decades and even with false doubles (i.e., still a curve left in the lumbar).

Staying above L3 or so is thought to be protective against needing any more distal fusion for kids. I am not sure about adults who wait on the fusion.

The higher you end up, the less chance of needing more distal fusion. The surgeon told my kid that she will not need any more surgery in her life because her fusion ended at L1.

If you wait and need to go to L3 or lower you will eventually lose the entire lumbar as I understand this. It could be a few years or more years. Boachie calls this a "countdown" for a reason.

It seems like you are looking at likely not needing any more than the one surgery or most likely needing a longer fusion and eventually to the sacrum. Only a surgeon can tell you though.

Please get an opinion from a top guy who is an expert in scoliosis fusions. I am betting he will directly contradict what that other surgeon told your mother. It is not enough to be an orthopedic surgeon who does a few spine cases a year. Please ask an SRS guy.

Good luck.

[debbei]

I was amazed (and jealous) at the flexibility of your spine. You'll get a terrific correction.

I'm with Sharon--ask other experts, not just some run of the mill ortho. If you aren't 100% convinced that you are doing the right thing, I'd put it off. In that time, you could consult with experts. What is your location?

[jrnyc]

why the hurry....?
any doubts...i would stop in my tracks and take a few more consults with a few
more top surgeons...just my opinion, that's all

what discs are rubbing where....?
you could not have done the obstacle course you did and be in pain...
again...what is the hurry....????

i just watched video today of Boachie from 2007...now he may well have changed
his mind in the last few years, but he went on about how no matter the size of the curve, if no
pain, he does not recommend surgery,...

i am not saying every surgeon agrees with him....just something to consider....

jess

[Pooka1]

i just watched video today of Boachie from 2006...now he may well have changed
his mind in the last few years, but he went on about how no matter the size of the curve, if no
pain, he does not recommend surgery,...

i am not saying every surgeon agrees with him....just something to consider....

Jess,

That makes sense but I am not sure it applies to King14. Boachie evaluated her and told her he would her T4-L1 now to try and save as much of the lumbar spine as possible. He didn't tell her to wait.

[jrnyc]

well, i know someone going to him for a follow up appt this summer...she is going
to ask him about the videos....they are availabe online...
the guy contradicts himself...
of course, i remember back when i saw him...he was still collapsing lungs to get
to the spine...doesnt do that anymore...
but i would be curious to see what Dr Lenke would say...
also...Linda is the one who always says the least satisfied after care patients
are the ones who started out without pain...
i do know the pain i am in...it would take A LOT to make mine worse...
i cannot imagine talking myself into surgery without pain....i haven't
done it with the pain....of couse, i am talking looong fusion to sacrum, too

i thought Dr B was Dr Bederman...
curious to see what Boachie will say when he is reminded about the videos...

jess

[Pooka1]

well, i know someone going to him for a follow up appt this summer...she is going
to ask him about the videos....they are availabe online...
the guy contradicts himself...

No I think you are right that he probably tells most patients to wait if they are not in pain. But King14 is EXTREMELY unusual. Neither of her huge curves is structural.

[Confusedmom]

King,
I'm sorry, I can't remember now. Do you have a lot of progression? If not, I would definitely hold off on surgery. You're young, healthy, pain free and cosmetically fine. Why not enjoy it without the risks?

I was also close to pain free, but chose to have surgery because my curves had gotten huge and were getting worse every year. Dr. Lenke said that in my case he wanted to fuse to the sacrum--even though my L5 disk was in good shape--because the curve had deformed some of the higher vertebrae. His feeling was if he stopped my fusion at L4 (apex of curve was L1, with listhesis at L3-4), I would be back in for a revision in 3-5 years because of lumbar pain. Yes, long fusions do put added pressure on the adjacent vertebrae, and they wear down over time. So, if I were you I would not want to got there until I absolutely had to. That said, I would keep getting x-rays every 6-12 months. If your lumbar curve starts to progress to the point where you would need to include more levels in a fusion, I would think about doing it then.

There are other factors to consider, of course. Are you planning to have children, and would you want to do that before or after surgery? Anyway, only you know what's right for you, but I certainly wouldn't rush into this. You could end up in more pain afterward. It's unlikely, but it's a risk.

Best wishes,
Evelyn

[king14]

I was amazed (and jealous) at the flexibility of your spine. You'll get a terrific correction.

I'm with Sharon--ask other experts, not just some run of the mill ortho. If you aren't 100% convinced that you are doing the right thing, I'd put it off. In that time, you could consult with experts. What is your location?

Thank you!!

I'm in southern california

I'm not sure if I'm 100% convinced I'd say I'm about 90%

[king14]

why the hurry....?
any doubts...i would stop in my tracks and take a few more consults with a few
more top surgeons...just my opinion, that's all

what discs are rubbing where....?

jess

Thanks for all the opinions its nice to hear from others who are in it with you (mom's included Pooka)

Discs rubbing -
(L2-L3) worse of the disc bulges (L4- L5) small bulge (L5-S1) disc bulge and degenerative disc ...

what's the hurry?? - I don't know.. When my discs originally slipped I couldn't walk- couldn't work for 3 weeks and was a lump on the couch. During that time, I Felt HORRIBLE. My back felt worse from laying around... So I just kinda told myself, if I'm gonna do this, i should do it now, because If I wait till I'm in pain (with discs or curves worsening) I'll be "mentally" worse off going into surgery...

It's Dr Bederman not Boachie. and i FULLY trust his opinion. He also showed my films to DR Serena Hu (in SF) and she agreed with the approach.
I saw Dr Akbarnia in SD
I saw Dr Daubs in Los Angeles

I feel like I have enough opinions - I just need to figure out my own opinion. - that's the hardest one-

Thank you EVERYONE - this forum really calms the nerves!!

[susancook]

By the way, can you do this?

http://www.youtube.com/watch?v=jutuEhkSnCU

Sally posted this a while ago and I have never forgotten it. :-)

I just looked at the video again...maybe if I could get into those shorts and cute top, I could bend like that? hahahahahahahahah
Susan