Hi!
I am a newly 29 yr old who, after several tests was diagnosed with Erb's palsy in my right arm. I have always had what my mother called “a retarded arm". I was never encouraged to use it- and I have only been told that it happened during my breech birth. I was never told anymore nor did my mother pursue doing anything about it.
I did learn to adapt doing most activities with my L arm that required any strength.
I have never been able to extend it above my head very far- and it will not straighten. I also could never say the pledge w/o holding it up with my other hand.
Now that I am older and we are more financially stable we decided to pursue fixing my arm (thinking it was a rotator cuff injury). As I get older (and with 4 small children)- pain has become a problem and I am realizing it also causes me posture problems/ back pain.
I was sad when told it had to do with nerves and should have been dealt with earlier. My neurologist is sending me to P.T but I feel like they don't really know what it is. I don't know what the nerves affected so I don't know what to expect the outcome to be. My arm is also bent up at the elbow (I realize now it is shorter too but I always thought it was just the bending that made it shorter). My P.T. has m going for only 4 weeks- it seems like it should go on for longer. Anybody have any advice on how to really help myself live more normally? How to approach medical people who don't seem to know very much? I don't feel like i have been given very much information either- can anyone tell me (even a bit?) what I can expect?
Thanks so much!
Ivy
New and wondering.....
-
marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: New and wondering.....
Hi Ivy,
I answered your question about what a contracture is in the other post. And from what you describe, you most likely have one. It can't always be fixed, but you need a doctor and PT/OT to see what can be done for you as no 2 people are alike.
There are various surgeries that are available now that even adults can get. Tendon transfers, capsule release...Primary (nerve) surgery is the only exception to this. There are limitations to what surgery can do also, depending on what function you have and what you would like to achieve.And how your shoulder has developed as you've grown. I had surgery at age 14 and it was only partially successful as my shoulder joint was more damaged and deformed that was originally thought. It take MONTHS of PT/OT before AND after in order to get the maximum results possible.
Going to PT for 4 weeks is ok as long as they set you up with a good home program that you do. And leave you with the possibility of maybe going once a month to make sure you are doing well and/or to make any changes needed to make it better work for you as changes in function occur.
You can ask the PT to test each muscle/group of muscles and from there you can tell which nerves are affected, though you can't always tell to what extent. You would need an EMG and a Nerve conduction test. Not the most comfortable tests but they will tell you what's what.
Can you see a BPI specialist? There are some listed on the resource page and some see adults, though it may mean traveling out of state.
A neurologist is good, an orthopedic surgeon is good too, to deal with the contracture or surgical options...
I am sure others can chime in.. Amy is good for info too, but she is in Mexico for another 10 days, so you'll have to wait unless she gets to the message boards in the meantime
Feel free to email me, my email is listed when you click on my name.
Marieke (32, LOBPI)
I answered your question about what a contracture is in the other post. And from what you describe, you most likely have one. It can't always be fixed, but you need a doctor and PT/OT to see what can be done for you as no 2 people are alike.
There are various surgeries that are available now that even adults can get. Tendon transfers, capsule release...Primary (nerve) surgery is the only exception to this. There are limitations to what surgery can do also, depending on what function you have and what you would like to achieve.And how your shoulder has developed as you've grown. I had surgery at age 14 and it was only partially successful as my shoulder joint was more damaged and deformed that was originally thought. It take MONTHS of PT/OT before AND after in order to get the maximum results possible.
Going to PT for 4 weeks is ok as long as they set you up with a good home program that you do. And leave you with the possibility of maybe going once a month to make sure you are doing well and/or to make any changes needed to make it better work for you as changes in function occur.
You can ask the PT to test each muscle/group of muscles and from there you can tell which nerves are affected, though you can't always tell to what extent. You would need an EMG and a Nerve conduction test. Not the most comfortable tests but they will tell you what's what.
Can you see a BPI specialist? There are some listed on the resource page and some see adults, though it may mean traveling out of state.
A neurologist is good, an orthopedic surgeon is good too, to deal with the contracture or surgical options...
I am sure others can chime in.. Amy is good for info too, but she is in Mexico for another 10 days, so you'll have to wait unless she gets to the message boards in the meantime
Feel free to email me, my email is listed when you click on my name.
Marieke (32, LOBPI)
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: New and wondering.....
WELCOME Ivy.
I am glad you found UBPN. Besides lots of information, you will recieve, instant understanding and alot of support on all of the Message Boards.
Yes, adults have had surguries too,altho at my age when I found UBPN at age 65 in 2004 it is too late for me, but might be appropriate. I do hope you are able to see a BPI Specialist to get a good evaluation. Good luck on you Search of Adult Resources with links on on our Home page.
Also, Erb's Palsy is also known as Obstetrical Brachial Plexus Birth Injury(OBPI).
Please come here often. I learn from everyone...and there is no dumb question for any Message Board.
Carolyn J
LOBPI/69
I am glad you found UBPN. Besides lots of information, you will recieve, instant understanding and alot of support on all of the Message Boards.
Yes, adults have had surguries too,altho at my age when I found UBPN at age 65 in 2004 it is too late for me, but might be appropriate. I do hope you are able to see a BPI Specialist to get a good evaluation. Good luck on you Search of Adult Resources with links on on our Home page.
Also, Erb's Palsy is also known as Obstetrical Brachial Plexus Birth Injury(OBPI).
Please come here often. I learn from everyone...and there is no dumb question for any Message Board.
Carolyn J
LOBPI/69
Carolyn J
Adult LOBPI
Adult LOBPI
Re: New and wondering.....
Ivy,
I would strongly encourage you to find a licensed PT who is trained in either Feldenkrais therapy or the Anat Baniel Method (based on Feldenkrais).
Out of all the therapies we have tried with our daughter, this has been the most beneficial to her, as it addresses her motor planning deficits on a more subconscious level. That sounds hokey - but a huge problem any OBPI victim faces is that his or her brain has not learned to efficiently communicate with the injured arm. Instead of talking to the arm, it shouts at it - resulting in co-contractions that often defeat muscle movement.
Passive range of motion exercises, properly done, will help you a lot.
I'm happy that you found this community. There are some truly amazing people, here. I've learned that you really are allowed to ask any question, and that the people here will answer you openly and honestly - because they want to help you.
By the way - your arm most certainly is not retarded. I'm impressed with your bravery and your drive to improve your function!!!
I would also second the advice to seek out a specialist. Check the resources board (link at top). If you are willing to drive or fly, Dr. Alan Belzberg at Johns Hopkins is excellent and works with both children and adults. Other than him, I am only familiar with pediatric specialists.
Good luck to you, and welcome to the boards!!!
Mica
By the way - I LOVE your name!!!
I would strongly encourage you to find a licensed PT who is trained in either Feldenkrais therapy or the Anat Baniel Method (based on Feldenkrais).
Out of all the therapies we have tried with our daughter, this has been the most beneficial to her, as it addresses her motor planning deficits on a more subconscious level. That sounds hokey - but a huge problem any OBPI victim faces is that his or her brain has not learned to efficiently communicate with the injured arm. Instead of talking to the arm, it shouts at it - resulting in co-contractions that often defeat muscle movement.
Passive range of motion exercises, properly done, will help you a lot.
I'm happy that you found this community. There are some truly amazing people, here. I've learned that you really are allowed to ask any question, and that the people here will answer you openly and honestly - because they want to help you.
By the way - your arm most certainly is not retarded. I'm impressed with your bravery and your drive to improve your function!!!
I would also second the advice to seek out a specialist. Check the resources board (link at top). If you are willing to drive or fly, Dr. Alan Belzberg at Johns Hopkins is excellent and works with both children and adults. Other than him, I am only familiar with pediatric specialists.
Good luck to you, and welcome to the boards!!!
Mica
By the way - I LOVE your name!!!
Re: New and wondering.....
Thanks!
All this info actually helps me a lot. I had thought when I went to the DR. they would have all the answers for me, but instead it seems like they sort of have answers.
Marieke- I did have the awful EMG and eletrode test thing about 2 weeks ago. The Ortho who sent me in or the test said it wasn't too bad, and after having 4 kids without meds- the test itself wasn't so bad, but my arm was in much pain for 2 days!!
Anyway, that's part of the discouragement for me. All that Neoru. said was "Erb's Psaly". He explained the brachial plexus and pointed to 2 nerves at the spine and said those were affected. Answers I didn't get: What muscles are affected. Why my elbow won't bend. The extent of my injury.
He did say the P.T. is the only option- and he didn't think that it would help my range of motion nessicarily, but more just the pain.
The P.T. acts as if she doesn't know what Erb's is- and the Dr didn't send over any info from my tests.
I guess I'm just going to have be more aggressive in my approach with Dr.s and study up on what can be done.
I am so glad to have found this place!
-Ivy
All this info actually helps me a lot. I had thought when I went to the DR. they would have all the answers for me, but instead it seems like they sort of have answers.
Marieke- I did have the awful EMG and eletrode test thing about 2 weeks ago. The Ortho who sent me in or the test said it wasn't too bad, and after having 4 kids without meds- the test itself wasn't so bad, but my arm was in much pain for 2 days!!
Anyway, that's part of the discouragement for me. All that Neoru. said was "Erb's Psaly". He explained the brachial plexus and pointed to 2 nerves at the spine and said those were affected. Answers I didn't get: What muscles are affected. Why my elbow won't bend. The extent of my injury.
He did say the P.T. is the only option- and he didn't think that it would help my range of motion nessicarily, but more just the pain.
The P.T. acts as if she doesn't know what Erb's is- and the Dr didn't send over any info from my tests.
I guess I'm just going to have be more aggressive in my approach with Dr.s and study up on what can be done.
I am so glad to have found this place!
-Ivy
-
marieke
- Posts: 1627
- Joined: Fri Apr 01, 2005 6:00 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008. - Location: Montreal, Qc, Canada
- Contact:
Re: New and wondering.....
Ivy,
I am sort of shocked that the doctors called it Erb's, that's is very "old school". It's what my parents were told too, btw.
The muscles that are affected depend on which nerves were affected. Did the MD tell you which 2 nerves he was pointing at?
The PT can test all your muscles anyway and you will know what works and what doesn't or what is weaker when compared to the other side (the non-OBPI side).
You say your elbow won't bend? Or did you mean Extend (straighten). Or can you NOT bend it yourself, like your bicep isn't string enough to bend the arm at the elbow?
Marieke (32, LOBPI.. also Erb's Palsy)
I am sort of shocked that the doctors called it Erb's, that's is very "old school". It's what my parents were told too, btw.
The muscles that are affected depend on which nerves were affected. Did the MD tell you which 2 nerves he was pointing at?
The PT can test all your muscles anyway and you will know what works and what doesn't or what is weaker when compared to the other side (the non-OBPI side).
You say your elbow won't bend? Or did you mean Extend (straighten). Or can you NOT bend it yourself, like your bicep isn't string enough to bend the arm at the elbow?
Marieke (32, LOBPI.. also Erb's Palsy)
Re: New and wondering.....
I also wanted to add that your doctor's statement about P.T. being your only alternative is ridiculous.
PT is tremendously important. I'm not arguing that point. However, there might be secondary surgeries which could improve your function and pain level. A BPI specialist will know what might help you.
Don't let that doctor put a ceiling on you, Ivy.
PT is tremendously important. I'm not arguing that point. However, there might be secondary surgeries which could improve your function and pain level. A BPI specialist will know what might help you.
Don't let that doctor put a ceiling on you, Ivy.
Re: New and wondering.....
Yes I meant it won't extend. It is always bent up- sticking forward.
I have been to 3 new Dr.s so far, and all of them have said one way or another... "well, you have been living with this for 29 yrs, you've already learned how to adapt..." sort of statements. I have been living, but not really lived, and the pain has really been worse the last year or so. It's hard to get any of them to understand why I want to #1 know whats wrong with me and #2 find a way to fix it!
Thanks for pointing me to th Dr referal page. I looked up in my state- and only found childrens specialists, but there are specialists at Mayo in MN and that not too far for me to travel. I just needed to hear that there is hope!!
I have been to 3 new Dr.s so far, and all of them have said one way or another... "well, you have been living with this for 29 yrs, you've already learned how to adapt..." sort of statements. I have been living, but not really lived, and the pain has really been worse the last year or so. It's hard to get any of them to understand why I want to #1 know whats wrong with me and #2 find a way to fix it!
Thanks for pointing me to th Dr referal page. I looked up in my state- and only found childrens specialists, but there are specialists at Mayo in MN and that not too far for me to travel. I just needed to hear that there is hope!!
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: New and wondering.....
Ivy,
A number of Adults on this Message Board had surgeries at the Mayo BPI Clinic. You can type "adult surgeries" or anysubject in the "SEARCH FORUM" Box at the top of the page, also.
I will try to Bump up a Surgery Topic Thread for you.
HUGS,
Carolyn J
Message was edited by: Carolyn J
A number of Adults on this Message Board had surgeries at the Mayo BPI Clinic. You can type "adult surgeries" or anysubject in the "SEARCH FORUM" Box at the top of the page, also.
I will try to Bump up a Surgery Topic Thread for you.
HUGS,
Carolyn J
Message was edited by: Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
Re: New and wondering.....
Ivy,
Most drs don't seem to have too much understanding of this injury. My son is TBPI so I don't have a lot to offer. Just wanted to tell you that the drs at Mayo in MN are wonderful. They see all kinds of BPI and I think you have chosen a wonderful place to be seen. Go prepared with a list of questions. When leaving you will have a great understanding of your injury and a plan of action.
Sue
Most drs don't seem to have too much understanding of this injury. My son is TBPI so I don't have a lot to offer. Just wanted to tell you that the drs at Mayo in MN are wonderful. They see all kinds of BPI and I think you have chosen a wonderful place to be seen. Go prepared with a list of questions. When leaving you will have a great understanding of your injury and a plan of action.
Sue