United Brachial Plexus Network, Inc.

Sharon 55 yr left obpi

I know this has been discussed before but must be I did not pay attention cause I don't remember what anyone said. My left hand occasionally gets somewhat a numb feeling but lately it's more often and more numbing instead of tingling. One thing I have always been able to do is unscrew pop bottles with my left. I['m finding I am very uncoordinated lately with my hand. Very frustrating to think I might loose more control. Any suggestions???

Also, just out of currosity, I was reading a post of Francines??? I think it was her child that she mentioned her arm might be limp and hang backward???? I guess I didn't realize there are so many positions the arm can take. My arm looks just about normal except I carry it (funny) LOL. From the lower part of the elbow on down to the hand is the same length as my right. I loose the inches from the elbow up past the shoulder. When the doctor wrote I had a varrient of erbs palsy, I now know what he meant. I don't think no two of us are alike I find that interesting.

Also any suggestions for the non bpi arm after overuse???? Since I broke my arm, my shoulder seems to get steadily worse with pain. Guess what the pain in the left (feels like deep pain) is different than the non bpi shoulder which grabs without warning along with constant aching.

Any comments?????

Sharon

Sharon,
As far as I know, there is nothing you can do to prevent this overuse which only gets worse. Ypu can get a handy dandy jar opener, things like that, but the bottom line is that you have to use your hands to live. You still have to get dressed, shower, drive, eat,etc. That all involves hands.
My arm looks pretty normal too and I can use my hand to a point. My arm doesn't turn over and it is slightly smaller than the other. I can't raise it above my head. I can reach my ear,but can't move the arm once it gets up that far. If I want to scrach my head on the right side, I take the good arm and hoist the erb's arm up with it . On the Erb's side, if I type with it, after a line or two, the forearm aches, goes numb and stops working. With the good arm, my fingers go numb after a couple of line, get stiff and the whole arm aches. Then it just quits. I have to take breaks. I have to take several breaks just to write this post. Where do you live, Sharon?? Pat

Sharon, I had the numbing in my bpi hand. I had an ulnar nerve transposition done by Dr. Nath about a year and half ago. He cleaned up all the scar tissue on the nerve and moved it. So far, so good.I recently had an emg done because of weakness in my good arm and loosing feeling in my bpi pointer.I get the results Monday.If you have to have an emg insist on pediatric needles! It did not hurt as much as the regular needles. I have learned about a new patch for pain that I plan on asking the doctor about on Monday. I will keep you informed.

Good Morning

I also have numbing in bpi hand and "good" hand.

I use a split key board Microsoft. Because my arm is bent at elbow this allows me to type with both hands. (I hope I am explaining this right) I no longer use the regualr mouse ... almost two years ago Ryan - mentioned a tracker ball - I checked it out it is cheap yet requires that I only move my fingers on the mouse not my shoulder. The PT suggested I use a pillow (or purchase and expensive piece of stuff to put on the desk to support my bpi arm when using a mouse) Needless to say I rest my arm on a soft small pillow to use my mouse. It really saved wear and tear on the shoulder.

Pat you and I sound like we move alike. I wonder... I watched the kids compensate like I do... using the non bpi arm to lift their hands to face - ear etc....
After you typed your note you save me from typing my description that is how I move... Look almost normal because when I stand up my arm just hangs...I forget its there and does not hang in normal netural position which I believe is thumb forward. I cannot palm up (supinate) my hand faces backwards (pronated).And I look almost "normal". As we all know that is a major problem... and the reason most people don't understand when we can't do something.When I start to move my arm it is elbow out-- I cannot reach my mouth etc..either.... outside pad on my palm goes numb and so do the ring finger and pinkie and I don't have much feeling in the poor cold arm... LOL...
It is 3" shorter... thinner and my shoulder is shorter too... its like I have one shoulder then a slide on the other side no shoulder bump..lol
I lift my arm by raising my shoulder - my thumb can touch my lips but my elbow is pointing up in the air my wrist is bent and is at ear level at that point but my palm faces down...looks goofy- then I can get my hand to my mouth but since I cannot supinate what good does it do...can't drink from a glass it would spill and have almost no grip on either hand...... How is that for a picture.


My left and "good" unaffected arm... stinks now.. it is always stinging and burning and numb..but its all I have... My right arm stopped with all the shocks after I started the B-12 injections again... You would think I asked for drugs when I said I think they would help.... drugs I could get! But getting someone to prescribe b-12 shots was a big deal.... it seems to stop the misfiring of nerves in the right obpi arm... don't know why but it does.... work for me. I have read a lot on B vitamins and the Nervous system... pain = stress =depleted B = no B for a healthy nervous system... Of course that is not a medical fact - it is just my simple minded deduction...depleted be also like pain = fatigue...Taking B vitamins helps. In my case my family has a serious history of pernicous anemia several close family members have had it and liver transplants.. something do do with the processing of B-12 to the liver... so the shots are better for me...( with this type of history it still was hard to persuade the doctor to prescribe shots - b-12 test showed I was at very low level B-12) and if you have stomach problems... Sub-lingual is better for you.... ops not prescribing just sharing!!!

Back to equipment to help perserve what we have left... As I type this on the split keyboard I have a pillow under bpi arm --that lifts my hand and writs - it prevents pressure on the arm and palm of my hand and also relieves my neck and shoulder - because my shoulder has to hold up the heavy arm... It has helped a great deal and relieved some of the stress placed on my arm when typing etc... That is why I can babble and type more.... the tracker ball - while resting my arm supported on the pillow - it relieves the pressure from the hard desk - it keeps me from moving my shoulder constantly to use my mouse and move it around... so I can cut-paste-delete etc with out moving my arm just my fingers...
The keyboard I got about two years ago it took very little for me to get use to because my arm is already bent >>>>> so it made life easier...typing no longer painful... except on nonbpi hand.... worse arthritis there... The tracker ball is very cheap and save so much on my neck and back....
I also wonder if in the future I will need some sort of surgery on the NON bpi arm --- fear it the big word for that one... just can't think about it... but wonder if I will be faced with it...since my ring finger on that hand is so swollen now...ok thats for another topic....

Judy... glad to see you.... Sharon...think we forget because we have read so much ...its like being on overload...
I often wonder what others really look like that are adults with obpi... I know Judy and Nancy...but would love to see the rest of you ....
Kath

Kath,
You sound like me. Even the arthritis. Funny,just because the fingers don't completely cross the way they do in Rheumatoid, people think they work. Noone wants to hear-they hurt and they don't bend.
I had a pronator release on the good arm and when I had the EMG he told me it's probably back but wouldn't test it because of the scar tissue in that area. Finger joints only last for about 5 years and don't give very good mobility. I've had 2 carpal tunnel surgeries and to do it again would be a waste of time.My shoudler doesn't bother me as much as the forearm. I just can't seem to build up any stamina. I've tried typing in all kinds of positions and nothing I do aleviates the cramping in the Erb's arm. Even holding the wrist down doesn't help.
We need to have an adults only get-together if we all don't live too far away. I know Nancy Birk lives about an hour away,if that. Kath,you live in New York, and Tina in Michigan. Where does everyone else live. Maybe we should have a fundraiser to finance some kind of get-together--or get some TV station to sponsor us and show our arms in public- to the world--OR find a Dr. who wants to do research on adult OBPI and check us all out. Pat

I live in Jackson, Michigan about 30 miles south of the Capital which is Lansing.
I can see it now if we were all to get together. Oh look, you can do this and that and wow your hand is backwards. I can hear us laughing at each other while other people would think we are slightly nutty (which I am anyway)

Celebrex helps take the raw edge off the arthritis but not enough to give a lot a relief, but then a little is better than nothing.

I can still scratch most of my head but I have to lowere my head down to meet my arm and it's easier to use my good ??? arm.

While I have a computer, I don't use it much at all. I'm on web tv which allows me to sit in my wooden rocker in fromt of the tv and put the small key board on my lap. obpi arm gets tired real quick but it makes it a little easier. Instead of a mouse I have what amounts to a remote control to use when just surfing and reading.

Do any of you have to remind your self to pick up your head? Mine tends to bend down. Also I have to remind myself to drop the obpi shoulder which makes it hurt worse when in a "normal" position. My arm feels better when I hold it across my stomach and lately it does not want to stay up there by its self and I will not use a sling. Not yet anyway. Sharon

I too had numbing in my bpi hand. 2 weeks ago I had surgery, similar to Judy's, that was a decompression of the ulnar and median nerves and a removal of lots of old scar tissue. The numbness is gone, time will tell if I get any new motion at all!

Nancy

I have numbing in my non-bpi hand from carpal tunnel. The bpi hand just gets numb when it's cold, which can be from air conditioning as well as the weather. The bpi arm just has less sensation in it...period!
My arm is bent at the elbow and the whole thing is smaller than the other, from the shoulder (sans bump)to the finger tips. I type with one hand, the fingers on the bpi hand can open and close in a weak grip but that's about it. So if I lifted my bpi arm up to my head with my "good" arm, I still couldn't do anything with my hand once it got there.
I live in New Jersey about an hours ride from Atlantic City. I'm deathly afraid of gettin on a plane....but there's a nice Holiday Inn in AC!! LOL!
-
Stephanie

When I was still working, I went to Jersey a lot. You guys have the jughandles and dreaded traffic circles! I'm about 3 hours from Detroit just West of Cleveland. Kath lives in New York. Niagra Falls is nice........ Pat

sharon...I've been copying video tape this weekend...all the originals videos of maia..

yep - just hanging there limp and backwards...what a sad sight to see! but it was so interesting to see the progression of movement as some returned.
-francine