who HAS NOT had surgical intervention?

[admin]

greetings, My son Max was 5 in January and we are surgery free at this point,
I think its great for parents to make their own decisions based on what they have learned regarding their children, whether it is surgery or no surgery.
I sometimes feel frustrated to see parents who were taught to rely on medical advise taking the advice of a surgeon without first finding out alternatives,
and there are always alternatives.
but that is not a judgement -it happens alot in the birth community also, as you know, women often rely on the medical advice of their midwife or OB without exploring alternatives..I tend to see alot of that...it also frustrates me but it is not a judgement.
A combination of approches is what has worked for us, chiropractic, therapy, water, and more,
I would consider surgical intervention if I thought the benefits would outweigh the risks but thus far that has not been the case, for us.
I am open to exploring avenues of surgery if my son so desires when he is a bit older.
Thus far my son's left(affected) arm is slightly shorter and the shoulder(deltoid) is very small- he has trouble with external rotation and suppination but alot has come in, even still we see improvements, he can reach behind his ear and above his head, he can climb a tree using both arms(but there was a time when he climbed using the back palm of one hand with the palm of the other, he no longer does that
He can catch and throw a ball, He jumps and flips on a tramploine like a crazy boy(yes we have a trampoline!)run(altho he doesnt have what is called a normal gait he is till faster than me haha)and most importantly, he is a free thinking confident HAPPY well adjusted child.
oh and did I mention he is adorable?
My son has experienced excellant recovery with no surgery contrary to the two popular surgeons we first sought advice from- (it was suggested by both that we have nerve grafting/primary, different surgeons seem to call the similar surgeries by different names), They told us then that we had to have surgery ASAP or we were putting him at risk of not being able to "maximize recovery" or that he would" ask us why we didnt do this for him" when he got older...
puhleeze. we declined.
We have taken our son to a chiropractor on a regular basis, had acupuncture done a couple times, did hundreds and hundreds of therapy and swim therapy and then diversed into therapeutic home play. Mostly spent a whole lotta time with him encouraging and allowing him to be who he is and be confident.
We decided a while back that in the whole of life, the injury is small stuff- not denying it...just embracing it and understanding -
For example, therapy for me wasnt bringing him to therapy for an hour, it was swimming with him or getting to play with cool toys or showing him off to whoever or whatever...
Zen and the art of brachial plexus recovery
Think theres a book in that?
peace yall
Mary Rainer
http://birthassistance.tripod.com
Please direct any comments you may have to my email address as I do not frequent this board.

[tcon]

I have any 18month old who has not had any surgery. If we had listened to certain drs she would have had nerve surgery at 4.5months and secondary surgery at 11mo. we choose to search for more opinions. She had hand, wrist and could shrug her shoulder at birth then could get hand to mouth by about 2 3/4 months. She is doing great now. Most people cannot even tell which arm is affected. I dont know what the future will hold, but for now I am SO happy we didnt go along with some drs (we ended up seeing 5 different BPI specialists and getting 5 different opinions). Just as an aside, we saw a neurologist when she was 7months old who is very familiar with BPI, we told her our daughter was having secondary at 11months and we were told to come back 2 months post op. we never contacted the neuro to tell her we cancelled surgery. WHen we walked in the neuro was so happy she said "The surgery was a success!!!". Nope, her recovery was all on her own...plus alot of PT/OT since birth.
Thanks for posting.

[admin]

tcon & Marymom,

I thought I was the only crazy one. We too, declined primary surgery when we were told to do it. We were told all the things are child would "NEVER" be able to do. The fear almost pushed me over the edge into feeling that I had to do the surgery when I was told by some of the big names out there. We too, heard primary from two different well-known bpi clinics.

After tons of research and many sleepless nights we decided to not follow the advice, at least not when we were told to do it. However, for our family, we decided if there was no bicep really kicking in by a set time, that we determined then we would have gone forward with surgery. We decided to not be pressured into surgery and we only prayed and hoped we were making the best decision we could. Long and behold tons of progress was made, well after primary would have been done, but this came with a lot of work and daily therapy as well. How did that happen with the ruptures we were told, I have no idea?

I think medicine is an art and no where near a science. For us, I am so very glad that we waited the extra almost 3 months. I wouldn't have waited a day past 8 months to do primary, but I pushed it up quite close to that. Will I regret it terribly in the future???? It is always a possibility, but I seriously doubt it. I have seen many children with the injury and people are always struck by how well my child is doing with the severity of his injury. We have also seen bpi specialist since that time who say there is no way our child would be where he is at, if we would have done primary, so who really knows? We also have been recommended multiple surgeries and in the end declined the majority, and again my child is doing things that we were told would never happen without surgery. If you saw him you would have to truly question where he would be if we would have gone through with all 5 surgeries? I guess that you would have to answer for yourself.

I think many of us forget about the risks involved and the impact of all the down time from surgery when the arm is not being used, casted, splinted, paralyzed again, etc. I am sure all of that has a great impact as well on the body and mind. HOWEVER, I personally believe surgery can be a wonderful catalyst and can allow for MUCH progress when combined with therapy. I have no idea if we will do more surgeries in the future or not. I guess for me it just depends on how much is truly to be gained and will it be long lasting. The bottom line is, I think it stinks that any of us even have to be faced with these huge decisions, surgeries, therapy, etc.All of this is just so hard. I hope in time there will be more answers for all of us and that doctors will figure out more about what they are actually doing. Things really are not as clear as some would think. It sure puts us in a hard situation, doesn't it?

I appreciate those posting today who usually don't. I am touched by how you work so hard for your children, don't follow the crowds, question things and seem to really focus on quality of life and peace even with this injury. I must admit, I often get way to caught up in all of this and I need to remind myself to look at the whole child and the impact of all of this.

[jennyb]

I said no to nerve grafting surgery and I have never regretted it. I was told I would get no recovery without it but I have had some limited recovery of biceps, this happened more than 2 years after my accident. The reason I said no was that I quite simply did not want to face the pain, trauma and disruption to my life that the bpi had already caused . I wanted to just live, not be in perpetual recovery/therapy. My injury is very bad and no surgery would have been able to restore hand and finger movement, which to me was the main issue. After I made the decision I felt liberated. I have gone on to have a fulfilled, functional and happy life without any use of my dominant right arm. I can't think of any area that would have been significantly different with 2 working arms.
I do get cross when I read these hospital websites that tell me how an unresolved bpi is a complete disaster-it does feel like that at first for us all I think but IMO the human spirit is a lot more complex and resilient than these doctors could ever imagine with their limited view that takes in just arm function.
I made the decision for myself, hats off to you brave souls who have to make the decision for your babies, whichever way you decide. Thank you for starting this thread.

[admin]

Thank you all for posting! It is SO good to hear that there are others who have gone different routes, especially those for whom it was recommended to have primary.

I am especially glad to hear of stories where the children are either functioning normally or have compensated for activities they cannot "normally" do. I will admit that it is often a fear of mine that my daughter will be made fun of or wont be able to swim. People constantly tell me they cant tell she has an injury but it is still in the back of my head.

[admin]

I certainly respect everyone's decision not to undergo surgery (it's none of my business), but I had a thought to share.

My child has been through three surgeries at TCH, which have been very heart-wrenching (but wonderfully successful). The reason we chose to do this was because even if our child recovered a lot on her own, by the time she is 5 or 6, statistics indicate she could very well start to lose any function she gained on her own. So in my view, you take a very big risk by not doing surgery when it will do the most good. If you wait until your kids are older, and they don't get the recovery you hope for, the surgery isn't as effective. I'm just wondering how some of you work through that issue in coming to your decisions.

Sure, no one likes putting children through surgery. It's awful. But it would be worse, in my view, to see my child grow up without as much function as she could have had with surgery. It's just a risk to "wait and see."

I don't think it's that those of us who choose surgery JUDGE those who haven't or look down on you at all. I think it's more that the decision puzzles me. I hope and pray each child with a BPI gets as much function as possible, no matter what decision the parent makes.

[Matt's Dad]

I think it was great that those of you that did not choose surgery have had the success and belief in yourself to trust your heart. To not follow the crowd is tough, even though I think many of us who go down the surgery route and made those choices, did it completely independently.
Although I chose the surgery route, I have a question for those who didn't, not meant in an offensive way, just simply out of curiousity..
What lead you to make that choice?
I remember when I first was faced with this decision for my son. My neurologist, who I respected and had dealt with BPI patients prior, did not feel the primary (nerve graft) surgery made significant improvements. There were no side by side clinical tests to prove or disprove any marked. (Something I still don't feel is possible due to the complexity and variabilty of this injury). I did not like the idea of putting my 5 month old under the strains of any surgery, let alone one as complex as nerve gratfting. Especially since it wasn't widely accepted. But after months of research, talking to other parents, message boards, etc I decided to have it done. But there was always doubt that it was unecessary and would improve the same as if we hadn't chose surgery.
Good luck to all of you in your future decisions.

[Nettie]

I am currently a lurker and not active voice on this board...and it is for above reasons mentioned...but I was asked to comment on why my son has not had surgery by another mother whom has chosen one surgery for her child, but has been a wonderful friend and very respectful and supportive of my decisions along the way...never once has she tried to force her opinions down my throat or judged me for mine...for that I love and respect her immensly and therefor am responding to this thread as she requested...My son is 5.5 years old and will be 6 the end of May. We have chosen not to have surgery to date for him...In short fashion, this is why...We adopted him into our home at 7 mo. of age...we met him at 3 mo. and he had virtually no movement...He received extensive PT and OT until he was 3 through the birth to three program in our state and has received home PT and OT since...His day to day life is his OT and PT...He gained significant recovery after an EMG was performed at 4 Mo. of age...don't ask me why, but he did...By the time his MD was looking at nerve grafting he felt that he had surpassed any benefit the surgery would provide...we continued on, using taping at one point, but abandoning it at another, by the time we were looking at secondary, we received the opinion that he would lose 25% function just with surgery itself and no guarantees that he would gain any back after surgery...they felt he was quite functional and they felt he would continue to gain on top of what he had...our BPI team was familiar with Dr. Nath, demonstrated respect for him and his work..they talked of a study due out anytime from Nath on the secondary surgeries...and before they would recommend the surgery, they wanted to see the data collected...needless to say, that was 3 years ago and I have yet to see it...I meant to ask about it in January when we were at clinic and quite frankly I forgot...maybe next time...I would be interested in hearing what our BPI team had to say on the subject of the study...He did have some pain in his shoulder over a year ago and we immediately had him evaluated...they again felt that it was due to his using his arm more and more to function and surgery still was not going to improve what he had...I just simply would not, and could not put him through surgery without guarantees and there are none to these surgeries...I guess if we felt that his BPI limited his functionality, we would have chosen that route, but it has not to date...He has met every milestone and his arm has not been and continues to not be an obstacle in his life...If you did not know he suffered from BPI, you would not be able to tell with him fully clothed...So, in a nutshell our decision to forgo had alot to do with Joseph's ability to be functional day to day...to accomplish his milestones, to continue to be free of any loss of sensation and day to day discomfort...all of this is not to say that from an orthopedic standpoint he may not need surgery in the future...I continue to leave that option open and had he had limited function, pain,loss of sensation and significant decrease in range we would have chosen surgery...As has been said, many times, all of these decisions are individual in nature and we as parents do the best we can for our children and I cannot believe that anyone on this board, past or present, with the passion displayed would make any decision they felt was not in the best interest of their child...My email address is not present for anyone here, but if anyone wishes to have me privately correspond with them, just let me know and I will email you back through this board...Oh and Hi there marymom, long time no see, nice to hear from you...Ann

[Lenni]

Hi , just wanting to say that I respect and support everyone and the tough choices they make. God Bless you all and may Angels dance on your pillows.

I have a 8 year old daughter, Ashley. She is ROBPI and I too chose no surgery for her and have never ever regreted my decision. In my heart I truly believe that she has not lacked a thing from my decision. In fact I know that she conitinued to have recovery until she was past age 6. Last year though she became chronicaly dislocated due to deterioration and abnormal bone development of her shoulder. Ashley was initaially in pain when this chronic dislocation happened and at that moment I felt some guilt about not having had the mod quad at a younger age, but still today believe that I did what was right for my child.

January 30th Ashley had the MQ and is still in her cast........she came through it with flying colours and even though she is shy and had some hard times initially letting people see her in her cast , she prevailed, goes to school, plays on the play ground and so on. Wednesday she actually gets her cast off!

I know her surgeon is going to recommend the rotational osteotomy but for now the answer is no. I believe that Dr. Kozin's procedure is probably the best choice should I choose another surgery which unless she becomes in pain again will not happen. Like someone else said....each surgery takes its toll both mentally and physically on the child.

So the moral to this story is this......never say never, do your research until you are comfortable , and remember this isn't about us but our Children.
Go with your Gut instinct!


Wishes for all the best, Lenni

[admin]

Lenni-so many of the children who DID get surgery and early MQ also went on to have several secondary surgeries, dislocations and other issues- you can't assume that an earlier MQ would have resolved the issues your sweety has had.
Really enjoying reading this thread,thank you all for posting. I never knew there were so many who chose not to have surgery, it's very encouraging for those who are not sure which way to go.