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flerc
01-30-2015, 01:34 PM
I have heard about an Apifix case .. now about Magec.
http://www.beckersspine.com/spine/item/24107-can-magec-help-adults-with-scoliosis-1st-patient-reports-success.html

titaniumed
01-31-2015, 06:58 AM
Here is another article....

http://www.dailymail.co.uk/health/article-2929521/Woman-adult-world-fitted-MAGNETIC-spine-correct-C-shaped-caused-scoliosis.html

This is such an extreme case.....the surgeons did a good job through the years at limiting or controlling her curves.

To think about the pain she went through all these years is just heartbreaking. I can barely comment.

Flerc, thx for posting

Ed

Pooka1
01-31-2015, 08:43 AM
That's really great to give extendable rods to adults. It seems much easier than halo traction. Maybe she will get mote correction than from an (instantaneous) fusion surgery also. That woman is so beautiful.

LindaRacine
01-31-2015, 12:52 PM
Would love to know how they plan to keep the rod from breaking.

jrnyc
01-31-2015, 01:17 PM
well, they don't always keep "regular" rods from breaking...

progress is not overnite...i am sure there will be things along
the way to work out...
but what a wonderful step forward...
i am sure in years to come there will be new procedures,
other kinds of approaches....
all needing to be tested out and refined along the way.

jess

titaniumed
01-31-2015, 03:01 PM
Would love to know how they plan to keep the rod from breaking.

It is hanging out there..... If it does break, 2 small incisions to replace with a larger rod system. Itís not going to be that hard to make a larger diameter rod setup. They should build it right away for her.

This poor girl has finally gotten some relief.....I sure hope her neck can hang in there....

Iím guessing that they removed her hardware hoping her upper spine will remodel straighter....I wonder which levels are fused?

She truly is a scoliosis trooper.

Ed

LindaRacine
02-01-2015, 03:19 PM
The article doesn't say when the last surgery prior to the MAGEC surgery was done. I'm guessing that her prior surgeries all utilized growing rods, which would mean she had very little or no fusion.

Jess is right, regular rods can break. That happens when fusion doesn't occur. In this case, there is (intentionally) no fusion, so it seems to me that the rods will almost certainly break unless they go in and fuse the spine.

--Linda

titaniumed
02-01-2015, 08:09 PM
I was assuming that the period from maturity to age 35 (being a 20 year stretch) would certainly require fusion at some period especially with such an aggressive type of scoliosis.....this we wont know unless she posts somewhere. It would be nice if she did.....after all, we are all in the same boat.

Iím sure the possibility of breakage was thought of, and I hope they have a plan in store if it does. They have FDA approval for the device, I hope it doesnít require too much red tape if diameter is part of this approval. They have the sizes listed on their site, they seem a bit small since they target the kids. It would be nice if they could be proactive size wise in regards to the adults that are in need of this system.

I have read in the past that some movement is beneficial for the fusing process to happen, otherwise they would simply go larger in size and we wouldnít have to worry about breakage. With the MAGEC system, fusing isnít the goal, why engineer the system (on the weak side) if breakage is of any concern? I am guessing the minute they have a breakage, this will be addressed.

Ed

Pooka1
02-02-2015, 07:30 AM
If you look at the radiograph, there are no rods or screws but there are other things that look like tiny wires or something. Or not.

She may not have had surgery before. This may be her first surgery. If so, then what is the end game here? Is it to straighten before a definitive fusion?

What is the motion of her spine with the growing rod compared to a fusion? Is she still flexible? If so then I don't understand why all adults don't get a growing rod in place of fusion.

Also, autofusion is a known problem with regular growing rods at least. I am not sure if it is a problem with rods that can be lengthened more often, maybe not. But if MAGEC tends to cause autofusion also then she will essentially be fused without benefit of being de-rotated as in a fusion. Maybe she isn't rotated but if she was rotated like my one daughter, the correction of that was as important as correcting the curve. It really mattered. Maybe only screws can do that.

leahdragonfly
02-02-2015, 08:00 AM
If you look at the radiograph, there are no rods or screws but there are other things that look like tiny wires or something. Or not.

She may not have had surgery before. This may be her first surgery. If so, then what is the end game here? Is it to straighten before a definitive fusion? <snip>


Hi Sharon,

the little "wires" you see are skin staples.

The article mentions she has had many spine surgeries, starting at 6 weeks of ageÖI guess I don't understand then why she wasn't fused as a teenager or young adult. I too was wondering if the plan is to straighten her up gradually with the MAGEC then fuse her?? So many unanswered questions in these small popular health articles.

titaniumed
02-02-2015, 09:13 AM
Some thoughts...

Since she is 35 and had her first surgery as an infant, chances are they might have used Luque wires on her. That was the choice method for extreme curves during that period. Brad had a Luque wire procedure back in 1983 by Dr Bradford. She did have an OMG sized 130, and Iím guessing that it was similar to Brads with the main curve up high in the thoracic. Her clavicle in her x-ray is deformed pretty bad. These high curves that affect the cervical area are probably the worst, many of the kyphoís have similar neck deformity issues. If fusing a few levels up high, I donít think that growing rods would be needed for shorty or short fusions. Good question for an elder scoliosis surgeon. Seeing her original x-rayís as a child would answer many questions. Another thing is when were growing rods 1st used in pediatric scoliosis? Did they have them back then? Do they do full or long spine surgeries on 6 week old infants?

Growing rods must be a tube over a shaft.....I sure would like to see these....

I asked my surgeon about the Luque wires, and does he see them often? He told me he does, and they simply pull them out now.

Before the pedicle screw, correction of rotation was best achieved by the Luque system since it was a method of attaching to each level. The problem is that the wires pull into the bone after time...Good question for Dr Hu since I have seen her Luque wire tying procedures in the Moe handbook. Itís an exacting set of tying procedures.

I think right now that pain control is the main goal....She seems to be doing well right now as stated in the article.

Whatever it takes to keep her comfortable, at least for now...

I donít know if I can ever complain about neck pain again....

Ed

Pooka1
02-02-2015, 07:19 PM
Hi Sharon,

the little "wires" you see are skin staples.

The article mentions she has had many spine surgeries, starting at 6 weeks of ageÖI guess I don't understand then why she wasn't fused as a teenager or young adult. I too was wondering if the plan is to straighten her up gradually with the MAGEC then fuse her?? So many unanswered questions in these small popular health articles.

Gayle, good point! And I hope you and the kids are well.

I missed that she had several surgeries. She either was not instrumented or they removed the hardware when they put the growing rod in.

flerc
02-02-2015, 09:53 PM
Here is another article....

http://www.dailymail.co.uk/health/article-2929521/Woman-adult-world-fitted-MAGNETIC-spine-correct-C-shaped-caused-scoliosis.html

This is such an extreme case.....the surgeons did a good job through the years at limiting or controlling her curves.

To think about the pain she went through all these years is just heartbreaking. I can barely comment.

Flerc, thx for posting

Ed

Hi Ed. thanx to you, it's good to see this irish woman, very pretty really. Also I wanted to see the x-rays.. certainly it not seems to me a 130ļ curve, I'm not seeing it clear enough yet, but I think some vertebras should to be too much inclined, so surely another method measuring the curve itself, regardless the vertebras, would give a lower number.
Anyway I hope this non fusion surgeries in adults may continue, I think it coluld be because now is known that bone remodeling in adults is a fact, so it might be possible to get a vertebra with a normal shape (or almost) after a time without the curve (or not so big), so hardware could be then removed.
This is not the first non fusion in adult case I have heard. I think this women was a voluntarie.. Elipse could have many voluntaries in my country.. see the kind of tv commercial that scoliotic people are seeing here:
https://www.youtube.com/watch?v=N22Nr76Xi6A
'Time ago people should have to work in a sacrificed way in order to have their floors clean... this was a kind of work creating MONSTERS! (showing the hump).. but now we have New Bl..3.. none back will suffer again!'
Incredible, but true.

Regards!

titaniumed
02-02-2015, 11:55 PM
Flerc

That is incredible......Itís a shame that the producers of that video couldnít think of something else....

There ďcouldĒ be a chance that some of us might be offended.

Just a thought.

Ed

flerc
02-03-2015, 08:03 AM
Yes Ed, many people was affected, I know about a terrible case of a little kid asking her mother for this product thinking it will help her to not be a monster any more. We made a lot of denunces but this company seems to be very powerful and Organizations of my country dealing with discrimination issues didn't do nothing.. it should to be an International Organism against discrimination.. do you know?

titaniumed
02-03-2015, 10:23 AM
I donít think its discrimination because its not intentional, its just stupidity.

And I also donít think it belongs here, especially on this thread. This is an uplifting thread, a story of hope that has been squashed by a ton of bricks.

I will not post here anymore until its removed. Iím sorry, but I donít have any tolerance for this.

I think we have enough to deal with.

Ed

flerc
02-03-2015, 01:24 PM
Probably if you would have a daughter with a big curve and in your country this commercial would be shown in tv, you would think different, but this is not your problem of course. All threads are full of posts off topic but sure moderator will remove it, as she deleted the thread I opened to showed this. Thanks for your display of solidarity!

flerc
02-14-2015, 01:34 PM
Sorry if it's a nonsense question, but I don't understand why if Magec is essentially roads and those rods exists before Magec, why they were not used before in adults. Adults donít grows any more so which could be the utility of the remote control?.. the special case of this woman needs it?

Pooka1
02-15-2015, 09:06 AM
I don't really understand the end game here. And there are others things I don't understand.

1. If she had 20 operations, why is the only hardware visible the new growing rod? Maybe they took it out or she was not instrumented in any of those other operations. It is confusing. Maybe that is a stock radiograph of a MAGEC rod and not her radiograph.

2. The growing rod doesn't seem to be a possible end game. If regular rods anchored at several point can bend, fatigue, and break then this rod, attached at two points seems like it will break more quickly.

3. They may be using the growing rod in place of traction to straight the spine prior to a fusion.

4. She may not have the lung capacity to undergo a fusion operation although she tolerated the rod attachment surgery. It's possible they intend to just use the rods and keep replacing them if they break.

5. They may be using the rods mainly to prevent further collapse as any straightening that occurs will be dependent on the rod staying in place.

6. I understand that many growing rods in children are left in place when the final fusion is done.

Over on SSo, they say she is on a FB group. Maybe someone can find her and ask if they are interested.

green m&m
02-15-2015, 05:44 PM
Back when I was a teen, I used to wonder why scoliotic curves couldn't be corrected slowly over time in the same mechanism/concept orthodontic brace used. I did understand that the fact instruments are placed deep made it hard to adjust like orthodontia can be adjusted, but I figured there was a way to get around that when the technology became more advanced.

Growing rods came around for kids and I thought... Ah HA! I knew it! (If I had known biomedical engineering existed as a high schooler a field I'd have considered it. Still made it into a field that straddles medical and another field though ;-D)

I can see in theory growing rods could work for adults -- but I do worry that adult curves are very stiff and will break the growing rods. Maybe there's missing pieces to this story here -- was she externally braced in the time the growing rods were being adjusted? I'd imagine an adult will need extra 'help' in keeping the spine stable while the body got accustomed to new shape when there isn't the internal fusion to keep everything stable.

I feel like my curve is sorta reverting back -- due to some pains returning that were there prior to surgery and I have three rods. I can't say I'll be shocked if at my 6 mo check in few weeks my curve has managed to bend the rods... I'm probably just starting to have more nerves regenerate and am getting sensation back, not having more pain.

flerc
02-16-2015, 01:39 PM
I can see in theory growing rods could work for adults -- but I do worry that adult curves are very stiff and will break the growing rods. Maybe there's missing pieces to this story here -- was she externally braced in the time the growing rods were being adjusted? I'd imagine an adult will need extra 'help' in keeping the spine stable while the body got accustomed to new shape when there isn't the internal fusion to keep everything stable.


It should to be known. I personally know some adults with a very flexible spine, so I donít believe they could be a rare exception. If rods could be enough in those cases, why never were used before?