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I'm a Newbie in Western NY

Posted: Tue Nov 01, 2016 12:30 pm
by medylik
Hi everyone. I'm Mary, and I was diagnosed with TBPI just a few weeks ago. I'm grateful to finally have an answer to why my arm doesn't work, but pretty upset to know I may never get back to full function.

My saga started in September 2015 after having an intramuscular ulnar nerve transposition on my left arm. I had injured my elbow several years prior, and was slowly loosing feeling and motion in my forearm and half of my left hand. Turns out my ulnar nerve was "in horrendous condition." My surgeon's exact words. Surgery went well, I was put in a cast for several weeks to allow the muscles to knit and the incision to heal. About about ten days after surgery I started to have intense shoulder pain; felt like someone was trying to pull my arm out of the socket.

I had X-rays, an arthrogram, and MRI of the shoulder - which were inconclusive - and was sent for PT for my shoulder along with OT and PT for the rest of my arm and hand. I regained function of my elbow and hand, but my shoulder steadily became worse. I had zero ROM, and was in constant pain. Further tests showed that I'd developed severe adhesive capsulitis. I had several cortisone injections and was prescribed oral steroids to help with the inflammation. The PT and anti-inflammatory treatment continued, but nothing improved.

Finally, I saw a shoulder specialist at the University of Pittsburgh Medical Center (UPMC) Sports Medicine Center. In June of 2016 I had my shoulder scoped - manipulation under anesthesia, and a depridement of the joint to create space for movement. I started PT the day after surgery. After several weeks of extensive PT I still couldn't move my arm, was in horrible pain, and my entire arm and hand were numb with constant pins and needles. More tests followed, which showed that I have disc herniations from C2 through T3, though the doctor didn't think they were severe enough to cause my symptoms. I was sent for an EMG and nerve conduction study. Those tests finally showed what the problem was - nerve damage, particularly the axillary nerve, from surgery. There's a laundry list of muscles that aren't getting a signal.

So, here I sit, typing (slowly!) with one hand. I can't tell you how happy I was to find UBPN. I've been so frustrated, annoyed, and hurt by the lack of understanding people, including medical professionals have. It's been therapeutic to read posts and know I'm not alone.

I'm on a new regiment of specialized PT and massage therapy. It's been over a year since my shoulder has worked, so I'm not exactly feeling all that hopeful right now. Does anyone have any words of wisdom for me??? What PT exercises have been helpful??? Has massage been beneficial??? Any tricks for battling pain and getting some decent sleep?????

Jeepers, I've written a book here. Thanks for reading. It's liberating to have someone out there who knows what this feels like, and what it does mentally, emotionally, and spiritually.

Re: I'm a Newbie in Western NY

Posted: Thu Feb 02, 2017 9:46 pm
by Mkusher
Hi Mary. Thank you for writing your story. You can see some of mine in another post. I would love to discuss this situation we're trying to endure, and share what we're doing to try to regain function and decrease pain. Please respond vwhen you can.

Re: I'm a Newbie in Western NY

Posted: Mon Feb 13, 2017 5:28 pm
by Dan
Hi Mary,

Lot's to respond to but I'll see if I can at least cover a few questions. Each person experiences brachial plexus injuries differently, depends on the nerves injured and at what location. I avulsed all five, so I can respond based on my injury. Massage helps me with pain relief, helps get the fluids moving around, doesn't do anything for the phantom pains. Exercise, activities and just basically doing life are my pain management techniques. The more I do during the day to get my mind active and focused on something other than the pain, not only helps during the day, but also carries over to the night.

Hope that helps a bit and glad you found some comfort in knowing there are plenty of us out here that know what you are dealing with and can offer help.

My best to you,

Re: I'm a Newbie in Western NY

Posted: Mon Feb 13, 2017 6:15 pm
by Master DIVER TOM
Thank s Dan!!!

I am so glad you and others responded,
Being home along dealing with these issues and lack of response , leaves a void. I am so glad when other response there way is Great, because they find the doctors and treatments needed !!! Fact is everything does work out with or without help in life with these injuries.
There is so much to say when the direction for help you an Chris have found.
Thank You,

Re: I'm a Newbie in Western NY

Posted: Tue Apr 10, 2018 3:17 pm
by medylik
It's been a long time since I've posted news. Sorry folks!

After seeing several doctors, and getting the run-around from most of them, I finally found a local doc who knows something about BPIs! Turns out my trouble isn't the axillary nerve alone. The nerves controlling the rotator cuff are effected, as are the spinal accessory nerve, and long thoracic nerve. I too am having bad neck and chest pain, which appear to be a result of the functioning muscles compensating for the others that don't work.

But I do have some good news. :D I was just accepted as a patient at Mayo Clinic! I'll be seeing the Brachial Plexus Team, Neurological Team, and Physical Medicine Team in May! I'm excited, and a bit nervous! Hoping the folks there can help me regain some function, and alleviate the pain.

I'm sending good thoughts to everyone going through BPI troubles.

Re: I'm a Newbie in Western NY

Posted: Wed Apr 11, 2018 3:42 pm
by Master DIVER TOM
Wow, Things do work out!!!
You have gone threw a lot and the Quest to do so , like so many here.
The best surgery is when they do them to help you do things you struggle to do with your limitation.
Never had help for my birth erbs like many posting to.
Please post what works for you to overcome your limitation, Big News, Here!!!
Very Happy for you,

Re: I'm a Newbie in Western NY

Posted: Sun Apr 15, 2018 11:15 pm
by jimhildeb
I just wanted to wish you the best of luck! Also, don't forget you can always get a 2nd opinion on any surgery that may be suggested. It's an important decision and it may be worth the additional hassle. Just a thought......

Re: I'm a Newbie in Western NY

Posted: Tue Apr 17, 2018 9:08 am
by Master DIVER TOM
Surgery and scare tissue and future pain from surgery,
Pain and scare tissue are very important to.
Jim would be someone to post to, Pain and scare tissue he has.
Many post about pain , scare tissue pull on nerves to, no mater from surgery or just living with birth erbs or other injury to..
Just thinking,