United Brachial Plexus Network, Inc.

I am defining self healing to mean healing without surgery IN THIS PARTICULAR instance because it sounds as if that is where Danielle is coming from,
I think there are many instances where very good recovery has been achieved without surgery, and likewise many instances where it has been achieved with surgery, Francine worded it excellantly when she said people tend to be very passionate about their choices,
I think ultimately the passion is good, it aids in the healing process, like faith, regardless of the method,
I am pasionate about ways other than surgery to treat BPIs, I do not think surgery is neccessarily bad, but alternatives to surgery is what I personally am passionate about, and would be glad to provide you info on, because there is not much out there in the way of specific studies to confirm success with alternative treatments many choose not to recognize their value,
thats ok too-
fault and responsibility are closely associated...sometimes even similar,
FOR ME, and my circumstances I choose to look at the responsibility -not the fault, because it s of no good/use to me to examine the fault involved in my son's injury ...there certainly are things that ...had I done differently, Max would not have this injury, had I not ridden my bike so much that I ate so many carbs that he gained so much weight, had I used the syrup when they did the glucose test(rather than the natural option I chose)had I been in a hospital and they did a section, blah blah blah -it doesnt matter, whats important is that I am responsible for my childs recovery, and I am responsible to help him be responsible for his own recovery, it is a part of who he is and I accept who he is comletely. A combination of circumstances beyond my control caused his injury, and it was a part of life that I believe is in divine order,(ducking incase anyone wants to throw a plate -smile)
oh my...please excuse my rambling
hang in there, love your baby
"give your child roots give your child wings" Hodding Carter...
blessed be -mary

Let me tell all of you i read your posts and i respect deepfully all your opinions...I just wanted to tell you a story !!! The other day i met a lady, who works with my dad, with a ten years old boy with OBPI. He did not have surgery because 10 years ago surgeries for BPI over here where not popular... they still dont do much. His forarm is very stiff...only 25 degrees. He was injured at c8-t1 if i remember. My 3 1/2 year old boy suffered a bilateral OBPI and had major injuries with many avulsions. In some cases i think surgeries are not an option...its an obligation!!! Sometimes they can be avoided...but my son was born 10 years ago i dont know what would be his quality of life. Going thrue 2 primary surgeries was very painful but i always kept in mind that it was his quality of life in stakes and not mine !!! I teech my boy to be a fighter, to stand up and take the place that is his !!! How could i not consider surgeries as an option ??? We never looked back and let me tell you that both surgeries involved different emotions and the decision was even harder to take the second time...Some beleive in miracles...i beleive we have to make miracles happen!!! I wonder if that lady would choose surgery now ten years later ???

If self healing (of ruptured or avulsed nerves) ere truly possible then there wouldn't be all these doctors doing research on the gene therapy to try and stop neuromas from forming... the nerves just don't know how to grow together after they've been torn. If they did, our kids -with serious injuries- would be in a totally different situation. None of us like wheeling our kids to an O.R. trust me on that. BUT thank God that there are experts out there who can offer our kids (and adults) some hope.

There have been some interesting posts already, and I'm happy to see that all are very respectful! As we know from past experience, this topic: surgery vs. no surgery can get pretty hot.

My suggestion is to move forward with obtaining second, third and even fourth opinions from known and reputable specialists in this field. Then you can step back and evaluate all the information and make a decision you and your family are comfortable with.

Check out the medical resource listing (link on home page) for a list of specialists you may wish to connect with.

I can share with you my personal experience when faced with the "surgery or not" issue when my son was a baby: I was deeply influenced by an adult with this injury from birth who shared with me her feelings that personally she would wish for as much function as possible, and if surgery could give her that function then it would be worth it.
Hearing this helped me to step inside the life of someone living day to day with this injury and make a decision on my son's behalf.

My son has had three surgeries to date, and each has given him significant improvement in function, for which we are grateful. My son is now old enough to recognize his limitations (both before and after surgery), and I am relieved to know that he DOES value very much the increase in function his surgeries have given him. For him, and for us, the increase in function was absolutely worth going through surgery.

Every family is different!

Best of luck with your decision, we support you no matter what.

Bridget

We had some doc's who told us to wait and see if our daughter got better (like up to 1-1.5 yrs), before we looked into surgery, and I have to tell you, we regret even waiting until our daughter was 7.5 mos. to do her first surgery. If you know your child has a serious injury, the earlier you get consulted to see what the odds are of gaining function in the time period of your child's age is important. If we would of took our daughter in before she was 5 or 6 months old her hand would of had a much better chance to get better because of her nerve growth associated with her age. If you opt to stay away from surgery, that is your personal decision, but if you are considering it, you should be seen sooner than later to help you make your decision! Good luck.

For our family, the miracle that happened was the Dr who grafted my child's 3 severed nerves and helped them to recover enough function to allow him to play tennis, swim, cycle, play basketball, soccer and to look after himself and his own personal hygiene needs.

We believe that he could not have self healed to rejoin the 3 nerves which were severed. We do believe that he has self healed his spirit - he is not shy or timid, he is a fighter - his spirit is strong. The miracle is he helped us to self heal our pain.

the question I asked myself when contemplating surgery for him at 6 months, was
" if we don't give him the chance, how will i feel if he can't undo his own zipper on his trousers at school?"
I knew then, that for our family, we had to take the risk.
he's 10 now and he and we thank God everyday for the miracle of the Doctor who helped him heal.

Some days I still feel like it's my fault he has this problem, but then I feel like that about his brother who also has special needs. But the truth is, they were sent to me for a reason - because I can FIGHT for them and get them the help they need, maybe another Mother wouldn't be able to do that for them, I believe that's why they were sent to me.

I am glad to hear about the wonderful miracles occuring with surgery, there are wonderful miracles that occur without it also, but most likely the posts found here will be surgically oriented. That is not bad or good, just a fact.
The 10 year old boy that suffered because he did not have the opportuinity to have surgery...that was sad, and I have heard many stories like that,
There are also many stories of children who had surgery but when the surgeon cut the child open he found no avultions, ok, so thats good there were no avultions but...is anyone asking whether the surgery was neccessary? Theres no argument, just questions, thoughts and personal choices, its ALL good here.
What about children who are referred to have surgery, diagnosed as severe, decline surgery, are never cut open, and have good recovery? Why would you assume they must not have a severe injury simply because they recovered well? I believe many severe injuries CAN recover without surgery, I also believe many need surgery so dont go throwing plates at me Im ducking anyway just in case I think that recovery does not neccessarily reflect the extent of the injury,
and one other comment I wanted to make in this exchange,
Most of the "specialists" in this field are surgeons.They know little or nothing about alternative therapies ...For instance several years ago the surgeons were saying dont take your BPI child near a chiro, now I hear many are even suggesting it- times are changing, treatment protocols are changing, and they will continue to change, there are areas that arent right or wrong but...different...and just because your insurance companies think its worth paying for doesnt always mean it is,
surgery or none is a big decision but it isnt a black and white one, in my opinion anyway, Keep an open mind and an open heart, love your child, do the best you can, your child will grow roots and blossom wings, I cannot say whether others should or shouldnt take their child for surgery, I can only say what I have done and how it worked for me, and support others to make the choices best suited to their needs.

Marymom I hear what you are saying but I don't believe that children with severe injuries (meaning ruptures or avulsions) have a good chance of healing on their own.

There may be few cases sprinkled here and there where there is actual sufficient mending done inside a neuroma just because by chance the two ends met in there... but it's not a common thing. With Maia - she had 75% conduction through the neuroma for C7 so they did NOT graft it because 75% is a lot and that is the nerve that she's had the most problems with in terms of her recovery...I so wish they DID graft it (now in hindsight). Her hand and fingers have many problems - her hand trembles all the time.

When a child is told at 5 months that they have a severe injury and they are signed up for surgery (usually 2-3 months down the road unless they feel it's really bad), they go down there and get evaluated again. If their functional movement surpasses what they expected - they are sent home. They do NOT do primaries without the basis for it and if a child is borderline they will do an EMG first and then either keep them or send them home. If a child does have surgery and they don't find a rupture or avulsion, then they usually find scar tissue that is restricting the nerve and they remove it to free it up.

They don't do surgeries unnecessarily. People may choose NOT to have the surgeries done when it is recommended and that is certainly their choice but the doctors - who are surgeons- send many a child home because they feel their child is doing well enough to go self healing route.

-francine

I feel that I must comment on this issue. My son Patrick who is now 31/2 has a lobpi. He had pretty good return as an infant, we sent a tape to tch and they suggested primary surgey. I was shocked so we decided to go there for a face to face evaluation because I thought they must have looked at the wrong tape. So at 5 months we saw the docs. They pointed out how Patrick was compensating his movements even though he had hand to mouth. I left there feeling better and knowing that his surgery was not scheduled for 4 more months thinking he may fully recover by then. Well that time came and we went back to tch. They did the surgery and found that he did not have any avulsions or ruptures (thank god) but he did have a huge neuroma around c5 and c6 which was conducting below 5o% so they took a part of his auricle nerve behind his ear and grafted. He did great with the surgery and recovery. I again sent my post op tapes and they recommeneded mod quad, again I was shocked. He had that done at 23 months and did very well with the surgey and recovery. My son at 31/2 has 90-95% range of motion, can supinate almost 100%, plays baseball
(with glove on left obpi hand), basketball, hockey, does the monkey bars, ect. He has minimal limitations!!!! I am very grateful for the surgeons and that surgey is available to help him, Was the surgery unecessary because he didn't have any avultions or ruptures (I dont think so) and I will never know how much Patrick would have recovered on his own. But I know that I have made the right choice for him. I believe the surgey will give him a better quality of life in the future without the development of complications. I just wanted to make the point that there doesn't necessarily need to be a rupture or avulsion for surgery to be benificial in my opinion anyway. Everyone has to make that decision for themselves. Sorry this is so long, just wanted to state my case
Respectfully, Beth

Just curious to know how they can diagnose by viewing a tape?
Also can I send a tape to them? How?
Will/Do they diagnose properly?