I just got back from the Mayo Clinic yesterday. I have been experiencing a ton of pain in my neck/shoulder area on affected side for over 6 months now. Everyday includes some pain. The question every morning is how much pain will I be in at the end of the day? I could tell that my pain was directly related to activity. After getting no answers for pain I was sent to a pain clinic. They tried some trigger point injections which were great to eliminate pain but I also lost function in my arm. After 2 shots the pain clinic said this seems to be a very complex situation and we are not going to do any shots or epidurals. At this point they began treatment with meds.
I would not take this for an answer. I am 28 years old and way to young to just be on meds for the rest of my life. After talking to my BPI family here, I decided to seek help at the Mayo Clinic after all they were starting a study on adult OBPI. I was able to get an appointment at the MAYO clinic. My mother and I took off on the 7.5 hour trip. I think my mom thought I was crazy, but now she understands why it was so important to me to get answers. We meet first with a team of doctors that measured all my roam of motion and muscle strength. I found that from what they could tell I had one of the most severe types of OBPI injuries. Dr. Bishop said if he would have seen me as a child he would never had guessed I would have all the improvement that I show. He almost seem amazed. Of course this made me feel really good....I had over come alot.
I then sat down to talk with Dr. Elhassen. He is by for the most driven doctor I have ever met in terms of find out information and trying to figure out a solution to increase your quality of life. I am a unique case in the sense that most people with OBPI have three muscles that move your shoulder....I have one. My trapazoid muscle is doing all my arm movement. The pain I have experiences for the last month is a completely tight trapazoid muscle doing way to much work but always on standby for more work. My BP nerves are constantly firing to my trapazoid muscle. Dr. Elhanssen will be looking at my case and has me getting an MRI to look all shoulder muscle masses. I left Mayo with an answer to the root of pain, and the hope of a doctor determined to figure out how to eliminate the work load of my trapazoid. For the first time in 28 years I feel like there is hope that my life will not be filled with pain forever. Will he figure something out? I am not sure but at least for now I can have hope. He trying his best to better understand the adult OBPI population and listen to our voices.
So for now I will schedule my MRI of shoudler muscles and I will stay in contanct with the MAYO Clinic and Dr. Elhanssen. For everyone reading this and wanting answers remember this.....We are all unique in our injuries....Make sure you find a doctor(s) that truely understand the anatomy of BPI injuries....Everything happens for a reason....I made a miraculous recovery when I was child....But my body healed in a way that surgeries in my childhood may have made things worse. As adults there is still hope to making things better. So NEVER give up hope! God will provide answers for each of us.....just be patient and do what we BPI's do best....BE DETERMINED!
Never Give Up
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
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jmar
- Posts: 528
- Joined: Tue Aug 10, 2010 3:43 pm
- Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.
Re: Never Give Up
WOW!! i am so happy for you that you have at least an answer to your pain. i hope your doctor can get rid of the pain so it wont be as bad for you. 
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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: Never Give Up
Amanda,
Thank YOu THank YOu for sharing this important part of your OBPI Life Journey. It is so inspiring to read an important thorough post from someone in thier 20's.
Could I please share this post of yours for Awareness week email I send out to my address book, mostly my family? I would leave your name off if you wish. YOur words and emotion points to a fact I try to explain, ie,"it's not just an arm".
Huggz to you & your Mother,
Carolyn J
LOBPI/73+
Thank YOu THank YOu for sharing this important part of your OBPI Life Journey. It is so inspiring to read an important thorough post from someone in thier 20's.
Could I please share this post of yours for Awareness week email I send out to my address book, mostly my family? I would leave your name off if you wish. YOur words and emotion points to a fact I try to explain, ie,"it's not just an arm".
Huggz to you & your Mother,
Carolyn J
LOBPI/73+
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Never Give Up
Carolyn feel free to use my post. You don't have to leave my name out. You are also an inspiration. I enjoy hearing about your life journey as well.
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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: Never Give Up
Thank you,Amanda.
Please come to Camp 2012 next July.
Carolyn J
Please come to Camp 2012 next July.
Carolyn J
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Never Give Up
I am looking at camp....have not sent any money yet! Trying to budget some money aside for it....after all I am in Kansas.....Missouri is practically in my back yard. 
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AlannahD
- Posts: 234
- Joined: Mon May 09, 2005 3:55 pm
- Injury Description, Date, extent, surgical intervention etc: 7-year-old granddaughter, LOBPI
Re: Never Give Up
Amanda, where in Kansas are you from?
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LOBI_Amanda
- Posts: 17
- Joined: Mon Jul 18, 2011 7:23 pm
- Injury Description, Date, extent, surgical intervention etc: LOBI (1983)...No surgies yet....some physical therapy when younger....and recently began having horrible neck/back pain that radiats down BPI arm. Also starting to wake up with some numbness in various fingers and thumbs...seems to be no pattern.
Re: Never Give Up
I just had my MRI yesterday. The preliminary reports so normal anatomy and muscle mass in my shoulder. To me this was great news. Now I will wait to see if Dr. Elhannsen can come up with a solution to better my quality of life.
It is amazing how family, friends, and co-workers are so intreged by my injury. For the first time I feel like I can talk about my injury and have people REALLY LISTEN. The funniest thing is my 2.5 year old mocks me...I tell him all the time that mommy can't carry him beacuse her neck, back, and ar hurt. Now he tells me all the time his neck and back hurt. Kids are so cute. He is the main reason for searching for answers. If you have ever been in pain, you know that you become more on edge. I caught myself before seeking treatment losing my patience much quicker. I don't ever want to be in a position where I missed out doing something with him because I was hurting to bad.
I am rambling and going to end this....just wanted to share my good news about my MRI!
Happy Halloween to everyone and be safe!
It is amazing how family, friends, and co-workers are so intreged by my injury. For the first time I feel like I can talk about my injury and have people REALLY LISTEN. The funniest thing is my 2.5 year old mocks me...I tell him all the time that mommy can't carry him beacuse her neck, back, and ar hurt. Now he tells me all the time his neck and back hurt. Kids are so cute. He is the main reason for searching for answers. If you have ever been in pain, you know that you become more on edge. I caught myself before seeking treatment losing my patience much quicker. I don't ever want to be in a position where I missed out doing something with him because I was hurting to bad.
I am rambling and going to end this....just wanted to share my good news about my MRI!
Happy Halloween to everyone and be safe!
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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: Never Give Up
Great News,Amanda!! It's good to cheer postive news. I can't wait until it's my turn to get on Dr. El...'s[cant spell at moment...lol] schedule too! 
HUGGZ,
Carolyn J
LOBPI/73
HUGGZ,
Carolyn J
LOBPI/73