United Brachial Plexus Network, Inc.

Someone suggested I post as we have not had any surgical interventions done for my daughter nor are we planning to.

My daughter had very little movement at birth but has been able to avoid nerve graft surgery. She is now 10 monts old and is able to raise her arm to about nose level and has good use of her hand. Suppination has not returned fully and we are using kinesiotaping to aid in that return. She tucks her index finger under quite often and uses only her middle and index finger for picking up small objects.

We most likely will NOT do the muscle transfer later even if her movement is restricted. We have been so thrilled with how much movement she has thus far and arent convinced the stress, the surgery and the recovery are worth what little added movement she may gain.

We continue with PT on a weekly basis and ROM daily and a lot of prayer. Were her condition worse we would probably have considered nerve graft surgery. I just thought I would throw this out there so moms and dads who are new to this could hear about the "others" who are travelling a different path and see all sides to this unfortunate injury.

Anyone else?

My DS is now 4 years old, and has not had any surgical intervention. We do not currantly forsee surgery in his future. However we are not ones to say never absolutely. Who's to say what will happen in the future that may open up surgery as a rational option for us. He has been in formal OT and PT since birth, with pool therapy also. He's had rounds of Kinesio taping and e stim. We have various reasons for not opting for surgical intervention, one being the same as Sara's. I am just not convinced that the stress would be worth the gain for us. I am also not convinced that surgery may not open up cans of worms he has been fortunate enough to avoid this far. He has good sensation, and no pain. He has good hand function, and moderate arm range. He is slightly internally roated, but his orthopedist is actually very pleased with how loose he is compared to the norm for BPIs he's treated. He always comments on how he can tell we are diligent with his stretching and ROM. I'd consider him to have a moderate injury. He will not have a full recovery, but then he wouldn't with surgery either. However I have heard many stories of children with more challanging injuries than he.

I am a frequent lurker, but do not post for this very reason. I have in the past had people make very insensitive and downright arrogant comments in regards to people who do not wish to persue surgery as an option for their child. Hopefully this post will be a good thing, and 'm glad it was started. I always feel bad for new parents here not being able to get well rounded experinces and information here.

Glad you posted

I am 64 and right OBPI I never had surgery. There are many people who visit these boards and have contacted UBPN who have not chosen or needed surgery. I have Horner's and hand involvement so the full range of injury. When I was born they offered my Mother surgery and she refused. They started ROM at two weeks old when I was released from hospital and that continued for most of my life. I still need PT from time to time and also have to do ROM. We just put in a Hot Tub last year to make it easy for me.

I am so happy to see you posting on the boards instead of lurking these message boards are for everyone. It does not matter which option you choose to treat your child nor what doctor or facility. United Brachial Plexus Network is for everyone. When I first discovered these boards 4-1/2 years ago I thought it was only for parents and newly injured. I did not feel there was a place for me until I began posting and discovered many other adult/obpi lurkers... that was a great day and it gave me a place to speak freely with others who understood. Please do not feel that this is not a place that you are Welcome.

Kath
UBPN
Board of Director Member

Dear Sara & Primrose,

I cannot say how happy I am to see that you ventured out past the lurking stage and for whatever reason decided at this point to open and share your true feelings and experiences. I want to commend you for having the courage to come forward. I have been here on and off for quite a while and I must say, I was led to believe that when your child had a serious, lifelong bpi that as a good mother I should put my child through all the surgeries that we were told were needed. In my child's case that would have been 5 surgeries to date, and most likely 6, since one of the surgeries was often being repeated since it was not holding.

I have heard of others who no longer come here or strictly lurk, and I think that is VERY, VERY sad. I don't care if you chose no surgery, every surgery recommended, or only one or two. I would hope that EVERYONE feels comfortable and welcome here.

I know there are many that sit in judgment or feel it is their responsibility to educate or refer others to specialists, and that is very unfortunate. I am guessing that you are both intelligent individuals who know how to gather information and make informed decisions. I can tell by your posts that you are actively involved in your child's treatment as well.

I think that those of us who sit in judgment may want to think twice. I am well aware of surgeries that were said to remodel the shoulder joint and did not, or surgeries that were said to prevent dislocation and have not. Those of us who have chosen surgery (me included) shouldn't be so sure that we have chosen the "RIGHT" or best path. Surgery is very traumatic to the body and the mind (how many of us have children who fear white jackets, or have had bad dreams of bright white surgical lights from above), and there are no known long-term guarantees or outcome in regards to many of these surgeries. Surgeons are very much learning on our children. Two of my friends who chose the non-surgery route and no longer felt comfortable coming here both happen to be very intelligent women who are both professionals in the medical field, which I always found especially interesting.

Any ways, it is certainly not my intention to be involved in creating another debate on this message board. We are all in the SAME boat and the seas are VERY rough, no matter which path we may currently be on. PLEASE let us all come together and support one another in a non-judgmental environment and let's be sensitive to what leads to turning people away from this board. Things have to change in order to make all people feel welcome. Imagine having to deal with this injury and not feeling comfortable enough to come here....sad thought to me.

Sara & Primrose, I am so glad you spoke out today. I hope more will follow your footsteps. I think you have a lot to offer and provide more balance here. We can all learn so much from each other and this board is for EVERYONE.

Thank you.

I am so pleased to hear of the recovery of your children.
In our group here in the Uk, I often chat to parents who feel that they shouldn't write in to our newsletter, or should leave our group because their children have made a very good recovery.
It always saddens me to hear that, because I think we all need to hear some "good news stories" sometimes.
My son has had three surgeries, they were right for us as a family, but I am always THRILLED to learn of children who recover good function without the aid of surgery.
I feel sad when parents feel guilty that their child has recovered well in case other families are resentful.
I for one, rejoice when I hear the good news about their children - I'm sure other parents do too.
Please keep posting - you are inspirational for other families out there.
Karen

My 12 year old has not had surg either and he did have alot of recovery - to date the shoulder ended up dislocating over time and the external rotation is limited as is supination - we are going to work with bracing and e-stim to see where we can get and of course lots of prayer. A rotational ost. has been offered but we want to try and see what we get going this other route and if no success I wouldn't necessarily rule it out but I have a feeling we may not need to go there.

Hi Sara:
I am not sure if you even want to hear from me b/c we did have one surgery, but I thought that I would write you my experience from birth until just before surgery since I think it may be helpful to you.

Well here is it: =)
Ella is now 2 1/2 years old. At birth she had finger, wrist and hand movement, but NOTHING else at all.
As the months of her first year of life went by she gained so much and by the time she was a year old she had almost everything. She lacked in certain areas, for example, she didn't have great suppination, she had problems with external rotation, her scapula winged pretty bad, she had a small elbow contracture and she couldn't get full ROM when she tried to do things like reach up behind her head or behind her back, reach all the way out to the side, etc.

Since she didn't need the nerve surgery I still always knew that she may need secondary surgery. I wasn't sure if I would ever agree to it or not, I just knew it may be recommended in her future. I took it a day at a time and hoped for more improvements.

We finally decided that we would do secondary surgery to help correct some problems. I won't get into that since I understand you are not looking into the surgery.

I just want to say that improvements WILL happen and that it takes time. You know what decisions are best for you and your child. If you feel that surgery will not benefit your child then I see nothing wrong with that. I wish you luck and hope everything goes well with your daughter. If you want some answers on something or even if you just want to talk please email me! Ldybug4134@aol.com

BTW-I am not trying to change your mind, but if you ever needed some info on the muscle surgery feel free to ask. Just in case it comes up in the future, I am here to help you if you need that.

~Krista~

Sara:
I forgot to say that Ella has been in therapy since about 1 month old. She had PT and OT aqua therapy a few times, but hated it! =)
Therapy is the most important thing whether you chose to do it at home or have formal therapy outside of your home. I know this is what helped Ella gain so much before and even after surgery.
~Krista~

My son Michael is 7 years old now and hasn't had any surgical intervention yet. Being 7 now his issues really aren't nerve related anymore, but more orthopedic. We are only now in the process of setting up surgery. We would like to get the testing and Dr. visits started in the summer and hopefully see what the Dr. says about sergury in Sept/Oct. We will set up home instruction with the school until he recovers. My next door neighbor who is also PTA president said that is good to get it done in the beginning of school because it's mostly reviewing from last year.

As far as opening a can of worms. That is my biggest fear. Michael is doing great as far as no pain and he has normal sensation and normal finger motion. His main problems are his shoulder and supination issues and his right arm is shorter than his left. Other than that it does not slow him down. My biggest fear is that what ever is done to correct one problem will create another, but with permanent pain as a side effect. I handled everything from chemotherapy side effects, him almost dying in my arms, surgery after surgery, but put my boy in pain and I am a raving lunatic.

Patty

My daughter is 9 and we are only now looking into surgery.She has done great up untill now.She has asked that we look into it for her to see what other options are out there.I don't believe in putting our children thru alot of surgeries.We have taken a wait and see approach.She is well rounded and no one has ever given her a bad time at school because she wasn't perfect.I beleive that surgery is always a risk and that if she is to get only 10 percent more movement with surgery,It would not be in our best interest.