What kind of Dr to see

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
sunny
Posts: 12
Joined: Tue Jan 10, 2006 1:41 pm

What kind of Dr to see

Post by sunny »

Hi yall. I've had my BP injury since birth 45 years ago. I grew up not knowing what was wrong with my arm. Within the past couple of years I have seen a rheumatologist, orthopedic and neurologist for other conditions and the 3 of them all mentioned Erb's Palsy.

Now that I have had time to think about it, I have many questions. The most important I guess is what type of Dr do I see to investigate any options I have, and how much it is responsible for other neck and back problems. All I have found so far is pediatricians. There must be someone out there who treats adults.

Thanks!
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: What kind of Dr to see

Post by hope16_05 »

Sunny,
I am not sure where you are from but I know that there is a team at Mayo Hospital in Minnesota that treat adults. I see a hand specialist from mayo, only I see him at Shriners until I am 21 then I will see him at Mayo. He has done so much research to help me. They are very willing to help.

I hope you are able to get some answers and treatment if necessary.
Good luck,
Amy 16 ROBPI from MN
Amy 28 years old ROBPI from MN
admin
Site Admin
Posts: 19873
Joined: Mon Nov 16, 2009 9:59 pm

Re: What kind of Dr to see

Post by admin »

There are very few BPI specialists who just see adults. I found my doctor on this website. He is a BPI secialist who is a pediatrician that sees adults with this injury as well. I like him. I live in pittsburgh but I have also heard of an adult clinic that treats brachial plexus injuries outside of philadelphia. Good luck.
sunny
Posts: 12
Joined: Tue Jan 10, 2006 1:41 pm

Re: What kind of Dr to see

Post by sunny »

I am about an hour drive from Boston. (I live in Rhode Island) If someone could recomend someone within maybe a 300 mile radius of Boston, or someone in Houston, Tx. (I am originally from Houston and plan to visit my Mom there this Spring.) I would be very greatful. I had a heartattack last March and missed all the symptoms because I mistook the pain for what I normally feel from my arm injury. That was my wake up call that 45 years of ignoring the injury is enough.

Thanks,
Sunny
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: What kind of Dr to see

Post by Kath »

Hi Sunny
Welcome to the Message Boards.

Here is a link to our Medical Resource Page
http://ubpn.org/medicalresources/

My big fear has always been that I could have the symptoms of a heart attack and not notice.
My mother was in her 30's when she had one and my dad 54 so I have it on both sides of my family.
Two of my brothers had bypass surgery at 58 and several of my cousins both male and females.
Now I guess I will pay more attention to signs.
I hope you are on the mend now and can find a doctor to help you with your pain and to gain some improvement.
I have had PT on and off for the last 6 years and it has helped with the pain and ROM.

I hope this helps you to find a doctor.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
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: What kind of Dr to see

Post by Carolyn J »

Hello Sunny,
I'd like to add my welcome to you. This is a GREAT place to learn from each other, adults with OBPI, but also I learn a tremendous ammount of stuff from parents too, on the General Message Board. Also this is a Godsend place to vent on everything and there are NO dumb questions. The most helpful I learn every time I come to UBPN is that this is a LIFETIME care
Injury and to be vigilant of every body change/pain that comes up and too take very good care of myself 1st.I'm glad you found our UBPN Family.
Hugs,
Carolyn
Carolyn J
Adult LOBPI
sunny
Posts: 12
Joined: Tue Jan 10, 2006 1:41 pm

Re: What kind of Dr to see

Post by sunny »

Thanks everyone for the welcome and the info. There is a Dr on the list that looks promising. I intend to contact his office and see what we can arrange. I'm also an insulin dependant diabetic and having the use of only one hand makes injecting difficult and cuts the areas I can inject in half because I can't reach well.

I hope I don't sound too whiney. I am very excited to find others with my problem. I truly thought I was a lone wolf. And yall all seem so nice too! I feel like I have so much to say and don't even know where to begin.

Thanks again,
Sunny
Sharon
Posts: 77
Joined: Sat Nov 03, 2001 9:29 am

Re: What kind of Dr to see

Post by Sharon »

Let me add my welcome too, Sunny. And by all means, go ahead and whine if that's what you call it. I cried for hours when I first found this board. Couln't beleive there were others out there. I grew up not knowing about my injury also, as you I just thought I was a riggt hand dominant. When I did find out it was a birth injury I really didn't think it would have a name. I was in my 40's before I heard the words erbs palsy. I also sat for hours just reading the old posts and still crying, but now there are quite a few old posts out there. I won't go into all my problems, but I hope you can find a dr and get, at least, some releif. I will say that I noticed myself going downhill about the age of 30 which seems to match up with most of the adults here.

Like Kath, I have always wondered, if I should have a heart attack, would I even realize it. Again, welcome. I don't post as often as I used to or should I say as often as I should LOL
Sharon
Michigan
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: What kind of Dr to see

Post by Kath »

Hi Sharon
Glad to see you.
It's funny how we all had the same reaction to finding others with our injury.
I was so emotional and cried but then there were only about 4 people posting.
I always knew it was Erb's Palsy and the doctor made a mistake.
But I was still alone and thought is was so rare.
Hmmm but it's not and that is sad.

Sunny you are not whining.
You have finally found a place to talk about your arm and the impact it has had on your life with people who truly understand.
This is the adult/obpi board and the place for you to come for support, vent, get information and whine if it is one of "those weeks, days".
People on this board share many of the same frustrations and secondary problems.
Each injury heals differently and it's impact on lives and our experience is a bit different.
But, we all share many common issues both physical and emotional.
Ask away any questions or vent if that is what you need to do ...

My first silly question was about holding things in may hand and not realizing it was there.
I sometimes walked around doing odd jobs with something in my hand and never realized I was holding it.
I can't tell you how many times I have looked for something and it's in my right hand.
I have gotten to my car and realized I had stuff tucked under my arm and things in my hand... LOL..

Kath (robpi/adult)
Kath robpi/adult

Kathleen Mallozzi
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: What kind of Dr to see

Post by Judy-T »

Welcome to the board Sunny.
About holding things in your hand.....I went to the mall and was getting ready to leave ,but could not find my keys, I took everything out of my purse and looked. I started to panic a little then I looked down in my right hand and the keys had been there all the time. I need to start reminding myself to look there first. LOL
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