United Brachial Plexus Network, Inc.

O.k. yep, it's me again and I'm still trying to figure out what the fudgecicles (why not type like I talk), anyway...what is going on with my BP hand.

I've been dealing with this mystery problem for more than 1 year, and I'm no closer to knowing what is happening.

When it started out they said it was trigger finger, turned out that's not what it was, my fingers never locked. Then they said it was a ganglion-like cyst. Again, I'm not thinking this is the case either since ganglion cyst are in joints. My lump was not in a joint. Now just the other day the lump disappeared, no warning no shrinking, just *poof* gone. Normally this would thrill me but the pain is still there, it hasn't lessened.

I am going to a Dr. in Sept, but I'm just trying to make sense of this before I go. I'm leaning towards Dupuytren's contracture. I am the least likely suspect for having it. But it runs in my family.

If anyone has thoughts or suggestions please share...I guess I'm just hoping to rule out that is has anything to due with my BPI, I want to go into my appt. informed since my last Dr. just blew me off without listening to me.

When I broke my wrist/arm years ago I actually fell onto a fence post and grabbed it with that exact spot on my hand. But again...my Dr. said that there's NO WAY that my hand pain and lump have anything to do with my BPI or my previous fall.

-Traci

Traci,

I can't say what your problems may be, BUT....

Per my own experience. I have had 2 Ganglion cysts removed from the same (BPI)hand but NOT in a joint ! Just on the top of my hand below my wrist.

I have another one that has developed and now has weirdly split into two pieces so there are now twin "bumps". ?????????

Don't know how or why they form there, but they do and then I have them removed and there are never any ramifications (so far) good luck.

Tina

It sounds to me like Dupuytren's could be the culprit. If you have not already I would see a Dr that is a hand specialist or an upper extremity specialist in your area and if and when you need to go to therapy I would see a therapist that specializes in hand therapy. They will know what to do. Good luck.
Becky

I'm sure getting an education. I'd heard of ganglion cysts (having worked as an editor for medical journals), but never of Dupuytren's contracture.

As was noted earlier, ganglion cysts aren't necessarily on joints, they can form on tendons as well, and sometimes can disappear.

But I agree with those who said see a hand specialist.

* * * *

Just curious but... have been hearing alot about adult arthritic, orthopedic, and neurologic conditions related to OBPI. I s'pose this is what I have to look forward to.

Charlie,
It is so interesting, and maddening too!!,we adults with OBPI's have so many different varieties of Neurological,Sensory,Respiratory(sp??),Artheritic and Orthopedic(spinal too) conditions as we've aged( not to mention a variety of injuries!!!)...what secondary medical issues you will have is a "crap shoot" guess... just please take care starting now, not to over-use or abuse your "good" limbs, shoulder and overall health.

One thing we all share is a high threshold for pain and a stubborn determination to to everything we want to do our way.

Hugs,
Carolyn J [yes, often bossy!]
LOBPI/70

I just came back from the Dr. today and I must say when you get a Dr. who listens and puts 2 and 2 together the feeling is the best.

He told me he wants to get an EMG and some X-rays so I'll know more later...but my mystery cyst can be better explained. He said it's probably tendonitis due to how weak my hand muscles are and trying to compensate for the lack of muscles. And it is connected to my BPI.

I'll keep everyone posted as to how this all goes...but I feel I'm on the right track, finally!

-Traci

Sorry got it wrong it's Ulnar Nerve Palsy/Cubital Tunnel Syndrome.

Ulnar Nerve Palsy.
Another possible adult secondary injury related to OBPI.

Is somebody keeping a list of these secondary conditions/injuries we get as adults with OBPI's?

I have lost tract of all the possible ones we've been sharing! Not every body gets the same ones.

HUgs,
"Gramma"Carolyn J


Message was edited by: Carolyn J

I have that and have had one surgery to correct it. It is back now,worse than ever. I have an appointment to see what can be done on the 25th of september.
Pat

OK, OK, I will take on the grueling task of listing all of the secondary injuries/medical conditions that we adults, one or another,NOT collectively, we've posted on the message Boards. These are the conditions we have developed in our adulthood-- post pediatric care.

It would help me if those who have the time, would please email me[click my name in blue to the left of this post to get my email].

Thank You.

HUGS,
"Gramma Carolyn J"
LOBPI--sometimes adult