United Brachial Plexus Network, Inc.

Hello to all,
I don't post here often, but thought I would let you know about my surgery. It was on May 16 and I am just getting back on the computer for short times.

I was suppose to have a ball and socket replacement in my "Erbs" arm. Well, I ended up with only the ball joint being put in. We knew before hand that I had no shoulder socket in my right arm, but during surgery they found that I also did not have a rotator cuff. So I guess there was no place to attach a socket to.

I go back to Mayo on June 4 and they will take out the stitches and X-ray it. Dr. says if the ball is still dislocating he will go back in and remove the replacement. And then nothing else can be done. Dr. has also told us that mine is one of the most severe/complex cases there has been. I am the 6th one of it's kind. I never knew how severe my arm actually was all these years, so I am still in shock about it!

I am wearing a type of brace that holds my arm to the side of my body and it has a block type thing between the arm and my chest. Very hard on my neck and left side. Says it will be like this for the whole 3 months.

Guess that's it for today, tired out now.
Take care everyone.
Karen

Dear Karen,
Thanks alot for your Update,'cause I've thought about you and wondered how Mayo went for you. No matter how long it takes for us adults with OBPI to get the correct and full "picture" of our injuries, it IS so helpful for us. I know, that was my experience last year, at 67+,when I got the true "Picture" of my injuries.

I am glad you have had a good surgery and hope your recovery is not too painful for you.

Please keep us updated on the healing and the benefits gained after your recovery period. Take it easy on the computer for a while 'til your strength is back, ok?
[Yes, this is your mother speaking...LOL...]

HUGS,
Carolyn J
LOBPI/68+...yikes!


Message was edited by: Carolyn J

Dear Karen
Thanks for making the time to let us know how you are doing.
I am sure it was rough to find out that you have no rotator cuff.
I hope you heal well and get some results and new function from this surgery.

It's amazing how many of us though that our injury was not bad!
Once we meet expert in the field of BPI we find out it is so much worse than we thought.
Hey maybe that is why we accomplish so much because we don't consider our selves helpless.

take care and feel good... stay off the computer it is hard on your neck and back.
Kath robpi/adult

Karen, wow that sounds like it was a pretty big surgery. I hope you get good news on the 4th!!! I am headed down on Tuesday for my surgery on Wednesday. I might still be there on the 4th.

Thanks for the update and I hope that youre recovery goes by quickly for you!!!
Big Hugs,
Amy 20 years old ROBPI from MN

Karen,

I hope everything works out well for you on June 4.

Joanie

I'm glad you made it out of your surgery and all is well. Sounds like a long recovery. Get lots of rest and thank you for keeping us updated.

Rachel from MT

Hello to all,

Thought I would let you know how things are going a month after surgery.

I am still in some pain and take Tylenol for it. Helps a little bit only. I continue to ice the shoulder with 3 small ice packs in different areas of the shoulder. The scar is very clean cut and is about 12 inches on the front of my shoulder. Lots of bruising around the arm pit area. I am still in a "DONJOY" pillow sling. I can not remove it at all. I cut some older tank tops and am able to get them on from feet first and pulled up under the sling straps. Also found some terry cloth tops at Walmart that tie at the shoulder and can be put on feet first.

When I went back to Mayo for the 2 week check up, I asked more questions about what was actually done. (I was very medicated when he told me in the Hospital) Anyhow, he said that my rotator cuff was very malformed from either birth or from a previous surgery I had as a teenager or from the way my shoulder dislocated out backwards. Also that there was no socket to attach an artifical socket to. So that is why I have only the "ball" joint placed in there. I go back to the "casting room", as they call it, on July 19th again. At that time if the ball is dislocating they will go back in and remove it all together and I have no idea what happens after that. We did go into this knowing that my arm was very complex and success was not for sure. I am only the 6th one of this type of surgery. I guess I had a birth defect and a birth injury. How special! : )

The family is great in helping with everything. I am basically dependant on them, and not liking it, I am a VERY independant person. Depression hit me this past week and I am working through it. I just cry when I need to and then try to watch a funny movie. I also have a very good friend from my school years that I email often and she lifts my spirits when I am down too.

I received a full discription letter from Dr. Sperling the other day. Wow! I can't beleive how very discripitive it is! Tells everything they did during the surgery. Almost makes you feel like you can see it as you read it. Don't know if I could watch it as a video though.

Guess that is it for now. Hope everyone has a great weekend!

Karen

Thanks for the update! I hope that your pain goes away! And that every thing seems to work outt in the next month so that you dont have to have another surgery to remove the ball. Keep us posted!
Hugs,
Amy 20 years old ROBPI from MN

Hi Amy,
I just read your update on your site. Glad to hear things went well for you. Are you able to take care of your nephew as you had hoped to?

As for myself I ended up being admitted back into Rochester Methodist Hospital on Tue. June 19th.
I had noticed a small yellowish pimple on my scar on the 18th and made a Dr. appointment with my home town Dr. for the 19th. (We live 2 1/2 hours from Rochester, in WI ) So over night this pimple opened up and drained all over my night shirt. Anyway, I seen my home town Dr. and she called my Mayo Clinic Dr. and he told me to get right up there to be admitted. So I had to track down my hubby and kids to be able to get there.

I was admitted at 5 PM and the Dr. seen me within 30 minutes. Nothing was done that night. The next morning they took me to have fluid aspirated from my shoulder. From that they hoped to figure out what was going on inside there. Of course it takes 5-7 days for cultures to grow and they didn't want to wait to get it looked at inside. So they operated on me the afternoon of the 21st to clean out the infection and also took 5 tissue samples to get a better idea what it was. Surgery went well and I felt better then after the first one.

I was seen by the Infectious Disease Doctor and told they still didn't know what it was. But they had me on two antibiotics to fight most infections. So I was listed as in isolation from the 21st until I left on the 25th.

So now I am home with a PICC line in my good arm to be given antibiotics once a day for 6 weeks by my husband or teenage daughters. I guess I just wasn't planning all these complications that I have had with this surgery. Do you know what a PICC line is? If not I can tell you all about it now that I have it in me!

Thanks for letting me share my experiences with everyone on these boards.

Take Care! Blessings to all!
Karen
Chippewa Falls, WI

Hey Karen,
Sorry to hear about the infection, that is a bummer! Aren't PICC lines fun? (sarcastic), I had one for other reasons, not infection and I was so fed up of having to shower with a garbage bag taped up covering my arm! My mom had one too, for antibiotics at home last fall too.

Hope all goes well,keep us posted!

Marieke (31, LOBPI)