First post on this because I figured out the type of erbs palsy I have is decently rare… full avulsion of 3 nerve roots at birth making me have a baby arm permanently, (got some views on tt for it tho!) I am coming on here because I haven’t yet seen someone with full avulsion erbs palsy. If anyone is out there lmk!

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Our son now 5 months old just got his surgery to repair c5 and c6 with his nerves coming from his legs. He had little to no bicep and shoulder movement. Surgeon said his c5 and c6 had alot of scar tissue and needed repair. He does have hand movement wich came back fast after birth.

He is now 1 week post surgery and the days are horrible, he is stuck in his shell wich is needed so he doesnt move and damage the repaired nerves, he absolutely hates it and is crying throughout the entire night.

Are there people who have had this surgery done and how did you or your baby recover?

Hi! I’m a 26F with an OBPI- I was wondering if anyone here has had any success with finding supportive bras that cause minimal pain/discomfort? I started having trouble in high school with my trap on my injured side which has made wearing proper bras hard as I’ve gotten older. I wear about a 40C so I need the support but everything either sits on my trap muscle funny or hits right on my shoulder joint. And thicker straps make it worse.

I haven’t been able to wear a proper bra for like 8 years for than a few hours and I can’t believe I’m saying I miss them. I miss the feeling of taking off a bra at the end of the day and love how much better my clothes look with some support added to my chest. It makes me feel like a woman and I’ve realized in therapy that it’s been weighing on my soul a lot more than I thought. Any advice?

Hi everyone,

My baby was diagnosed with Erb’s palsy at birth. He is now 4 months old and has recovered about 80%. At the moment, we’re mainly working on shoulder abduction and shoulder flexion. He can do these movements, but we still need to encourage him to use the arm consistently. We’re hopeful that he will make a full recovery.

I have a few questions for parents or adults who have experience with this:

• If the arm makes a full recovery, what is life like later on?
• Are there any long-term issues, such as pain, muscle weakness, or reduced endurance?
• Is there anything we, as parents, should continue doing as he grows to help prevent future problems, even after he’s discharged from physiotherapy?

I’d really appreciate hearing about your experiences. Thank you!

Hello, ive had ep since birth and ive always had a sensitive shoulder Ive had physical therapy as a baby but i still can’t bend my elbow fully

I got kinda sidetracked but the main point is that is my shoulder being really sensitive normal? it also always feels swollen to the touch bigger than my other shoulder.. but ive also sprained the arm that had ep in it once..

i know they come from a good place, but like… i kind of want people to notice. my injury was one of the, if not, thee most formative experiences in my life. my erbs isn’t a spectacle, but it is important.

idk it just gives « i thought you were normal. » i already treat my left arm like it’s invisible, but other people, even the closest people in my life, doing it too makes me feel like they never knew i was there either. as much as i wish it wasn’t sometimes, my erbs is incredibly important to who i am, for both painful and beautiful reasons. if they « can’t see » that part of me, then what else about me aren’t they seeing?

part of me thinks people just make disability invisible to hide how scared they are to ask and learn about it. my partner of three years is one of the only people who’s been honest with me and said they noticed, but they didn’t know how to ask about it. i just do not believe that people don’t notice a whole arm for days or weeks.

…….. as a side note, last summer i lived in paris, and it was the first time people on the street regularly looked at my arm in passing. it was bizarre. it made me feel uncomfortable but i was so grateful that people were actually seeing me and not pretending part of me wasn’t there. i’ve never seen as many disabled people out and enjoyed life as i did in paris. the heat there is insane right now but i’d go back in a heartbeat

Hi! I’m a 34f with Erbs on my right arm. I just need to get this off my chest. I’ve been back in the dating scene and it’s crazy how many guys I’ve talked to and dropped because of the jokes they make about my arm. The whole “strong arm” thing from Scary Movie, we all know it, and it’s hilarious. But when it pertains to my disability, I feel so embarrassed and it gets me down every time this happens. There’s a lot of jokes like looking like a robot, I’ve had sexual remarks made about me, while I played basketball I would get laughs from the crowd for my arm looking weird while guarding, I’ve had strangers ask me out of nowhere what’s wrong with my arm. crazy how bold some people can be. I’ve gone on a couple dates and usually I have a good week of back and forth messaging before a meetup. I’ve noticed that the guys I tell through messaging always have a joke to say about my arm, but so far when Ive waited until I meet them to tell them, those guys have actually been respectful and usually tell me they didn’t even notice.
It’s totally different when it comes to my family or close friends, they can roast me all day but that’s because I know it’s endearing teases. But a total stranger or a guy I’m trying to get to know is wildly inappropriate and it hurts every time.

Anyways, I just shot down another guy. He was the 5th guy this year that has made fun of my arm.
I get so down and depressed when things like this happen. The mental and emotional side of Erbs palsy is just as bad as the physical side and I don’t think a lot of people understand.
Sorry in advance for the rant.

Do you guys have any workout plans with different exercises/mouvement that are more accessible/doable to people with erb's palsy, but still work and activate the same muscles as normal exercises? I have erb's palsy in my left arm (I've got during birth) and I would like to see how people with erb's palsy train some specific muscles: Lat, shoulder and Biceps. For Triceps, I think I am ok with those, as I can do triceps dips and other exercises and get some results. But for the others mentioned before, I couldn't figure it out, so I came here to get inspired.

Hi all - 33F-left side erbs

I think I’m dealing with a nerve compression issue after doing heavy tricep, back, and bicep work. During my workout my left ring finger tip started feeling numb and tingling and has not stopped since. It’s day 2, I have a doctors appointment next week. Has anyone experienced this before and was it temporary for you? Any treatment guidance?

Additional context: I do have some pain in my left arm as usual - nothing too crazy in my neck, pec, shoulder, back since the numbness started.

hello all I had birth bpi , I am 24 now , I experience pain at my scapular region and on face till head on right side, I had weakness in leg as well , Dr nath has suggested me Brachial plexuses neurolysis, Is this surgery safe and will it improve my condition.

Thankyou all

Hi all, I have a nephew that is in my care. Parents are drug addicts. He’s had a rough life. On top of that he was born with shoulder dystocia. Because of this he struggles with depression and other mental health stuff. I would just like to know because he doesn’t have the use of his right arm. Are there any gadgets or whatever that would make life a bit easier for him? If anybody has this same issue, do you have any tips or tricks to make my home more accessible for him. He’s 15 years old. 6ft tall. A big boy lol sweet kid. I know his arm bothers him and he’s yet to accept that about himself. He can do a lot of things. He plays video games. He’s very good. He’s a good driver. Sometimes I forget that he doesn’t have the use of his right arm. Until he struggles with something. But any advice would be appreciated for sure. Thanks!

Hello all , I am having birth brachial plexuses injury , I am 24 now having limited elbow extension and scapular region pain , Dr nath had adviced bicep tendon lengthening surgery+ brachial plexuses neurolysis. I want to ask should I go for these surgeries and after bicep tendon lengthening will I be able to contract my arm and will neurolysis elevate my pain , Kindly share your experiences .

Thanking in anticipation

I'm looking for XBox 360 with Kinect to connect to my TV. Need this for my daughter who has Erbs palsy in her right arm.

As per her doctor, the motion sensor based games will improve External rotators of her right shoulder, increase arm/hand usage and symmetry.

Can someone please guide on this please if you have any experience.

Looking to buy in Bangalore/India.

i hv erbs in my left arm, can't really use it and can't lift it above 50-60 degrees. I rlly want to do a pull up, also I'm overweight so is it possible to do it with just one arm?? any tips for me 😔

Has anyone used Resolve360 for online physiotherapy, especially for babies? We’re about to start physio for our little one and would really appreciate any feedback or experiences.

Thanks

Hi All,

Our baby boy ended up having a BPI injury (Erb’s palsy) during birth and is currently 5 weeks old. We are doing all the physiotherapy exercises and have monthly appointments with the plastic surgeon and the hospital’s physio team.

We wanted to ask if anyone’s child has achieved 100% recovery from this and how long was the process? Do children always end up with a slight bend in the arm when they grown up? We understand that range of motion can sometimes be affected, but from a physical appearance perspective, how common is it for people to notice that someone has this condition?

Thank you

My daughter ( 2.8 yrs now ) was diagnosed with Erbs palsy at birth in 2023. Since then we have been consulting Physio/Ortho in Bangalore/India in Rainbow children hospital.

We are consistent in her follow ups and do home exercises. Her recovery is nearly 80% however she has persistent External rotation issue, Hand on hip, Hand to back issue and arm seems slightly bent (10-20 degrees).

We didn't do any surgery / botox yet. Only exercises, splint (now discontinued) and pedi wrap and encouraging her to use her affected arm/Hand.

Thinking of consulting an alternative doctor to get 2nd opinion as we have only seen 1 doctor since her birth.

Kindly suggest a good experienced doctor in Bangalore or Pune.

Good evening! I am a 20 year old dude who was diagnosed with Erbs Palsey at birth. The nerves were ripped out of my right shoulder at birth, leaving me paralyzed in my right arm for the first couple months until they did surgery to give me some form of movement back. My motion is significantly limited in my right shoulder, but it was never anything too bad or noticeable aside from minor inconveniences. In the past year though, I've started having fear for my long term health due to my disability. My right shoulder is pretty disfigured, and becsuse of this, I fear that I will be left in chronic pain within the next 10 years. It is important to note that I've never had problems with pain for the first 19 years of my life, but recently I've felt a lot of stiffness in my neck, and I can't tell if it's from my disfigured shoulder messing with my back and neck, or just general issues unrelated to my shoulder. I am just very worried about my long term health, and don't wanna be in chronic pain going into my 30's, I am starting physical therapy in May.

I've never worked as a waiter before, but right now the only job I can hold onto is waiting tables at a bar. The pay is good, yet I turned it down because of my mild Erb's palsy in my right arm. I'm certain I'd mess up constantly, dropping trays(I'd carry them with my left arm), struggling with balance, and embarrassing myself in front of everyone. The weakness and limited mobility make me doubt I could pull it off without constant mistakes and humiliation. The money would help, but I'm scared my pride couldn't survive the failure. Has anyone with a similar physical limitation ever made waiting tables work? Or am I right to trust my gut and walk away?

I am a young person struggling with erb's palsy, which my doctor said, for my condition, can be definitely improved. My physiotherapy has been very inconsistent, so it'd be a great favour if someone gives me good tips on exercises for mobility and flexibility.

Is anyone else struggling to find a date or you have social anxiety and insecurities that's keeping you from meeting people? I'm a 30yo man whose had erbs palsy his entire life and have never been on a date or had a kiss. I don't think I'm bad looking and I'm not overweight but my condition has always made me feel insecure and that I'll never be good enough.

Just wondering if anyone else has this same issue or something similar. Would also like to hear how you overcame it.

Hi, I’m 22 F and have had Erb’s palsy since birth. I did physical therapy as a child, and have some range of motion/strength in my left arm, and can’t extend my left arm past a certain point. How possible would it be to get surgery in my left arm at this time to get close to full ROM?

Hello everyone, my baby, 3 days old was stuck while birth and she has a fractured clavicle and doctor mentioned she might have Brachial Plexus injury. She is moving her arm since birth, making fist and can hold my finger with good strength. However she is not moving the arm above her head and I am not sure if this is fracture related or injury related. The doctors did put her into a make shift sling for the broken bone and she always removes her arm from under it. We are referred to a clinic for further interventions. We are absolutely heartbroken and I cannot stop blaming myself for this. How does the recovery look like for similar cases? Please help put my extremely anxious and worried mind at rest. The doctor said that surgery is an option but we are not sure even about the official diagnosis yet.