United Brachial Plexus Network, Inc.

hi marcella,

the capsulodesis kinda sits there all on its own...

the surgery is not done in a progression of any kind...it's just that some kids get dislocated and others don't. Recently the question was asked to try and link the cause but there were some kids who never had surgery that were dislocated...and many of them weren't going to have the dislocation corrected either.

So let's look at the surgeries at TCH:

primary
mod quad

C7 transfer
pronator/teres transfer
biceps lengthening
forearm / wrist tendon surgeries, etc.
capsulodesis
nerve transplants
muscle transplants

Children with severe injuries need primary. Many of them need mod quad just because of the nature of contractures and such..but some don't.

And the rest of the list - well they are separated out because these are just some of the surgeries they do that can help a child with a specific problem. They've only done about 60 capsulodesis...but they've done I think about 1200 quads (?) or some other high number like that. I don't know how many of the other procedures they've done.

Does this help explain it a bit?

-francine

Yes - it is very tough. I know it was VERY hard to decide to do Maia's capsulodesis but we don't really have a choice because she's in pain. This weekend she was really in a lot of pain and I just wished the surgery was today and not a month from now!

Anyway - the way the capsulodesis surgery was explained to me is that the kids have primary to juice them, kids have mod quad to give them better range of motion.... in hopes that they create a more normalized shoulder joint. When the joint doesn't get created (in some children only) and when the tendons are stretched or loose (because of the age of the child - tendons don't tighten up or become hardened until the child is older) then a )(posterior) dislocation MAY occur. They put the bone in it's place, tighten it down and hope that the child can now create that joint.

Why don't some children create a joint after the mod quad? Well I can only talk for Maia and I believe that it was her growth spirts. Maia has these tremendous growth spirts and when they happen, her arm 'dies' for 1-3 months at a time...meaning that 75%of the year she's not actively moving it or able to move it the way she needs to in order to create a joint. When the growth spirt hits, her arm gets very tired, can't range anywhere near where it normally can and she doesn't want to bother with it...I don't know...maybe it's painful? maybe there are sensory issues? It's hard when your child is so young and can't really verbalize what's 'really' going on.

by the way - a while back we gathered up a list of questions to ask your docs...

www.injurednewborn.com/maia/drquestions.com

check it out and keep on asking questions until you are clear- completely clear - on your decision.

take care,
francine

Francine:
Thank you for clarification of TCH surgeries.
The next question I would want answered is if they have done 1200? mod quads how are these children doing now? Have they followed the results of their surgeries--how do parents and maybe the children themselves rate the success of the surgery? Does TCH have a system for following up on their surgeries? Are there any failures? Are children ever made worse? Can they show tabulated results over time of improvements in function or lack there of?
How much can improvement of young children be attributed to surgery--or would some have improved over time anyway-since they are doing them at such a young age now?
And yes! I would CLEARLY want to know--does having surgeries seem to have a domino effect and create a need for more surgeries later on?
What about scar tissue being a problem later inside the neck or in the arm? I have heard that sometimes scar tissue needs to be removed as it can cause problems in and of itself. Then wouldn't more scar tissue just form?
The difficulty of this seems to be the young age at which these are done, and the newness of the surgeries themselves-like capsuledesis. If they have not studied this surgery over time--are they perhaps guessing? What is the risk/benefit ratio? I realize advances in medicine are sometimes made through new and experimental procedures--but the surgeons need to FULLY inform you of all they know about the procedure ahead of time,(good and bad), and of all they DON't know.
I can see how parents would need to be very involved in this process and check out several specialists opinions and latest research from various medical sources and facilities.
Also very important are the qualifications, background and experience of the physicians. If plastic surgeons are doing orthopedic and neurosurgical procedures---is this appropriate? One would want to be very clear about the qualifications needed to do such procedures as muscle/tendon transfers and nerve grafts, etc. The American Academy of Surgeons might be a good resource to find out what one would look for in surgical training for various procedures. They have a website I believe.
Experimental and new procedures can possibly produce good results, but can also fail. Or problems can show up even years later.
There used to be a few parents on this board willing to talk about some bad consequences that can result from some of these surgeries.
Some children are now challenged by complications from such surgeries. I wish these parents were still around to balance out the picture here.But, maybe it is too sad for them to see so many young children on this message board heading for early surgeries knowing what some of these parents know.
One would need to also ask--can this procedure be reversed, or fixxed if it fails, or makes my child worse? If it can't be--that is food for thought.
There is a place for hopefulness and positive thinking, but there is also a need for realism, and scientific data that has been tested over time. Difficult balancing act.
Best to all,
Another Voice

just an opinion on Francines as always very informative comments- as I know nothing to the extent that you do specifically about surgery, Francine, I always respect your comments as being very factual-as the comment above indeed is...however I wanted to point out that, in my opinion,the line that says
children with severe injuries need primary surgery
is an opinion- to NEED surgery...is an opinion- it will always boil down to...
opinions and choices
for some parents the picture may be clear black and white, and for others it is a grey area...
I believe the issue regarding the incidence of surgery once begun...is an interesting one.

the words NEED and GET are two different things....

A child with a severe and permanent injury does NEED the surgery in order to try and repair the injury and give the child some function....but whether or not he/she GETS it is a different story.

I'm not arguing that some children GET it or DON'T GET IT.... people certainly have to make their own choices.

It's very sad to me if a child has a very severe injury and doesn't get a chance to be helped with a surgical repair...in my mind it's even negligent.

But "I" am who "I" am and others are not - we are all different and we all make our decisions for different reasons. I will never understand why 'they' didn't choose to help their severely injured child and they will never understand why "I" did.

Viva la difference...
respectfully stated,

-francine

From what I understand, I think that most children who would be candidates for the capsulodesis would have at least had the Mod Quad. I think that the MQ is typically a more conservative approach to fix the shoulder. Some drs. might do both at once also based on a combination of pre-op MRI results and pre-op exam of the shoulder.

I'm not sure what you're asking about what surgeries could follow the capsulodesis. There's a whole list of procedures depending upon the specific child's injury. I believe that the most common surgery that might be done if a cap doesn't work (or doesn't work enough) is the derotational osteotomy. Some drs would just recommend doing the oste rather than the cap first, while others try the cap first as a more conservative approach. Of course, there are pros and cons to each protocol. On one hand, if the oste will ultimately be done anyway, then you can bypass the cap. However, if the cap does the trick, then you can avoid having a more difficult procedure like the oste done. I probably gave you more info. than you wanted. Oh well, I hope this helps.

Also, the cap hopefully will help with supination. However, if it doesn't help enough, then I believe that the pronator tendon transfer might sometimes be recommended in the future.

-Tina (Nicole's Mom)

just wanted to clarify thaT I totally DISagree with you on the part where children with severe injuries NEED surgery- NEED (caps indicating emphasize not wild yelling)is an extremely relative and individual word(my opinion ) and some children who are diagnosed severe may have parents who decide they do not NEED surgery...and surprizingly enough they may present, years later, with as much recovery as a child who HAS had surgery -I have seen it happen-as you well know, I totally respect and agree that the choices you have made for Maia are the best choices for Maia- as her mother you provide her with what she needs, and I also think that other parents who have children with severe injuries that have consciously chosen NOT to have surgery are also giving their children what they need to- needs, are subjective and...need is a tricky word- I have observed many different parents, maybe as many as you have, and have observed many things that influence a child's recovery,(litigation is an interesting one for example, as is surgeries) obviously the biggest thing, I think, is attitude- but- that is an orientation statement too-
and just to clarify- if surgical intervention were not presented as a form of treatment ...I would be ARGUING for the information to be presented as much as I argue for the information regarding the choice NOT to have surgery...(hope that indicates something other than an argumentative heathen)
and leave it to ME to argue about such a word as "NEED "so dramatically
as you say...viva la differences, love always-m
PS but I WILL say every BPI child NEEDS chiropractic adjustments (DUCKING from flying dishes ) JUST KIDDING!!!!!!!! hahahahahaha

I knew that you would disagree...but that's ok. It's great that we can each tell our viewpoints and not take chunks out of each other's necks..lol lol.

I agree with you about chiropractic. But I would also add homeopathy to this (as long as you use a trained and very experienced homeopath). Have you done anything with homeopathy yet? It's been VERY helpful to Maia during hard times.

-francine

homeopathy is 'vibrational' medicine.... if you see a 'constitutional homeopath' this is a trained physician that treats the WHOLE person rather than just the parts or symptoms.

Homeopathic remedies are the 'vibrational aspect' of herbs/drugs, etc. When we take regular prescription types of drugs, we are virtually taking poison. When you create a homeopathic version of the same drug - you are HIGHLY diluting it so that you no longer get the poisonous aspects, but you get the vibrational aspects.

The example I like to give is that if you go to the shore and throw a pebble in the water you will see the rings...a vibration is created. When the vibration hits china, it is such a pure form of vibration - it is truly just the essence of it.

Here's a more grounded explanation: You know that if you take ipecac you get a violent vomit reaction. But if you take a homeopathic version of ipecac, it won't have enough power to make you upchuck, but it will have enough power to stop the musculature from spasming. So someone who is having an asthmatic coughing spell, can get relief by taking this homeopathic remedy, in just seconds. It won't make you vomit, but it will stop the cough action.

Homeopathic remedies are made in a series of dilutions. For example: 1 drop of pure ipecac with 100 drops of water. It is then shaken and then one drop of the mixture is mixed with 100 drops of water and shaken. Then one drop of THAT mixture is mixed with 100 drops of water and shaken. 20C would be done 20 times, 100c would be diluted 100 times. The more dilute, the more powerful. The more dilute, the purer the vibration is.

This is a real science which is in the history of the beginning of ALL medicine. In Philadelphia - our most famous hospital Hahneman Hospital was a purely homeopathic hospital at one time. Just like years ago Ostopathic Physicians were very common. (they still are but they don't seem to still do as much manipulation as they used to)

So when you go to a homeopathic physician he sits you down and talks to you and you tell him your story... he then tries to fit the pieces into the puzzle... and he has books and books and books that define major grids of what symptoms mean what remedies. And some of them are now computerized so that you can access the grids more easily.

When you are given the 'right' remedy for your constitution, it puts you on a number line and balance means being at -0-. It also could give you an awareness of where you are at any time. When you go off the charts + or - , you are given another dose of the remedy and again you set back to -0- for balance.

Most of us have many layers of 'stuff' to work through, and genetic (emotional and physical) issues as well. A good homeopathy will help you cut to the chase. It may take years and years.

And as with any other modality - it has its place in the midst of allopathic medicine. They work together - not against each other.

There are certain keynotes or patterns that you can figure out about yourself and your children. For example, I know Maia is off course when the following occurs

(1) she wakes up in the middle of the night (this is rare for her)
(2) she scratches herself with no stopping - obsessively (eczema) (she always scratches - but this is obsessive in a big way, especially as soon as her skin hits air when she takes her clothes off)
(3) her attitude is negative and she's mischievous in a negative way

When this happens, she is given her constitutional remedy- 3 little sugar pills on her tongue. And you can tell a difference in a matter of just minutes or a couple of hours usually.

Homeopathy won't CURE an illness per se...but it will give you the ability to handle it better.

To the mom whose child cries so much when they wake up from sleep - this would be the perfect example of something that homeopathy could help.

I view homoeopathy as the foundation for everything else.

Body-Mind-Spirit connection - homeopathy affects the body on all 3 levels. It may ease the tensions or out of balance conditions that may cause the subluxations in the first place, etc. Marymom - some day (if you haven't already) sit in a comfortable spot and try to visualize the body as a living body and go inside as though you are an insider to its miraculous workings and see how a subluxation occurs. How does a bone get pulled out of place? Does the bone move out first or do the muscles pull it out? Try to envision the process. What starts the process? If the babies are traumatized at birth - what will help the kids process the trauma and get rid of it at a cellular level? Chiropractic only deals with one level (structural) ..what about the rest..how does this vibrational memory or energetic memory get dealt with.

This is how all the alternatives fit together to help the WHOLE person. And then we get it all figured out...there is always the concept of destiny right? LOL

And after this is all said and done I will say that it is VERY hard to understand homeopathy until you have done a few years of it... and experienced all that I have tried to explain. The 'inside' knowing of it is very hard to explain. As I am sure I have completely baffled you and anybody else reading this.

Another concept of homeopathy (symptomatic homeopathy that is) is treating "Like with Like".... so to treat a bee sting, you are given a very dilute dose of venom. And it works. (APIS) Like neutralizes Like.

Ok - enough gobbledegook for now....

take care,
francine

homeopathy is interesting ... do you see it as directly impacting BPI /bpi secndary muscular imbalances...nerve growth...that sort of thing?