new to this site

[Jeff O]

Hi All,

I just found this site late last week.

I was injured on Sept 20, 2011. Extreme shoulder pain running down the outside of my arm into hand. It happened while playing tennis. X-rays, MRI's indicated cervical spinal stenosis. There was severe to moderate damage between 3-7. We had a number of like opinions...I had a four level cervical fusion on Nov 9, 2011 c-3 through c-7. Recovered well from the surgery, but the initial pre-op symptoms only worsened and my shoulder began to visibly atrophy at an alarming rate. It felt as though my shoulder was just hanging on by a thread and that my arm was going to fall off.

Diagnosed with Brachial Plexus Neuritis on April 12, 2012 at a different hospital with obviously different Neurologists.

I am a 52 year old male and prior to injury I was playing ice hockey 2-3 time a week, tennis 2-3 times a week and going to the health club in between. I was skating on an open league (meaning no age minimum other than 21) I could ask my body to go mountain biking, swimming, play volley ball... and it would respond.

Went from that to going to PT three days a week. My right deltoid muscles have atrophied to nothing and my right (primary) hand is unreliable at best.

I'm an illustrator for zoo, aquarium, and wildlife reserve exhibit and print work, so the loss of the fine motor skills in my right hand is particularly devastating.

Current Docs are advising stay on Lyrica, Ibuprofen and Physical Therapy and am not expected to see them again until mid Summer (seems like a wait and see). Have been reading in these entries about nerve transpositions, tendon transfers, muscle transfers???

I know nothing! How's that for a declaration?

Would greatly appreciate guidance.

Best,
Jeff

[MW]

Hi Jeff,

Sorry to hear about your injury. Most posts you read in this forum will encourage you to find a provider that specializes in adult brachial plexus injuries. Each person's condition varies, and as a result, so does the approach. Notable examples of BP specialists are a group at the Mayo Clinic in MN and Dr MacKinnon in St Louis, but there are others that people have found success with.

Look for a post titled "Athletic Arm Sling" to see how people have gotten back into sports despite the arm injury. With the right adaptive equipment you have a good chance of being active again. I know when I was able to return to running, it greatly improved my outlook on life.

That nerve pain is not a fun thing. I've dealt with it since my injury, and my best advice is to find a mix of meds and lifestyle that minimizes it, and try to stick with it as much as possible. I actually have a pain specialist that was able to get me on a good mix of medication that can control the pain but also not have so many side effects that it wasn't worth it.

All this stuff is just my opinion and you'll find a lot of different experiences here. There are folks here who have dealt with this far longer, and can share their thoughts too.

Good luck!

MW

[Jeff O]

MW,

Thanks so much for the thoughtful response. I'll check out the arm sling. Just the thought of a cardio-induced sweat is so appealing to me.

Currently searching out who to turn to next. Had fusion surgery at Northwestern Memorial in Chicago and was diagnosed with Brachial Plexus Neuritis at Rush in Chicago.

Have seen Dr.MacKinnon (St. Louis) and Dr. Spinner (Mayo) names repeated quite a bit in posts...

Thanks again,

Jeff

[jmar]

oh jeffrey, you need to get int o a BPI specialist ASAP!!!! DO NOT let them play the wait game with you. the wait game nearly cost me the use of my left hand. and possibly my entire arm. i lost a lot anyway, but i was told to "wait and see" and refused to listen to that crap. i was very lucky to find this site bofore it was too late. when you do find a specialist, make sure that dr SPECIALIZES in brachilal plexus injuries. NOT just your run of the mill neurosurgeons. i hope the best for and keep up a positive attitude and that will help a lot.

[Jeff O]

jmar,

Thanks so much for the response and the urgency that you expressed. I'm making calls today.

Jeff

[Christopher]

DITTO!

Find a top notch specialist that deals with these neuropathic injuries.
DO NOT WASTE TIME, as many of your supporting team of well intentioned "specialist" may suggest... to wait it out.

Listen to the words of experience.

You are an artist and an athlete. That's a double depressing whamo if it's dealt with inappropriately (which is the norm, from the best of the best that aren't BPI specialists).

It's your arm, your life, don't settle for anything less then what you can get, as far as proper and obtainable medical attention. We see this here on a weekly basis. Please listen to the words and advice shared earlier... unless you are content with things remaining as they currently are, and possibly getting worse.

Best of Luck & Relentless Determination,
Christopher

PS I've been around the block, if you can get to the Mayo, do it. If you can't, figure out why, and still do it. Obviously there are other qualified specialists that may be more than appropriate for your injury, but start at the top and work your way towards what ever is best for YOU.

[Jeff O]

Christopher,

I was on my cell with the Mayo when my wife called on the house line...she had just read your post at work and wanted to tell me to read it.

Thanks so much for taking the time to share your advice and know that I'm getting all of my tests together to send to Dr. Spinner.

If I'd not been directed to this site by a friend, I'd still be in the "wait and see" holding pattern.

I'm waiting for the most recent EMG, but other than that I have all pre and post op tests together.

I feel a sense of hope that I've not had in some time.

Thanks again,

Jeff

[jmar]

another thing i found out about pain. EXCERCISE!! EXCERCISE!! EXCERCISE!! it may sound harsh, but when you are in a lot of pain, get that arm, hand and fingers moving. do not let it stay still. if you have to use your good hand to move it with, do that. or if someone else has to move it for you, that is ok too. the best pain relief is to keep it moving. and keep a good attitude and do not let this injury get you down.

[Jeff O]

Thanks jmar!

I've been keeping as active as possible and sometimes probably beyond what I should be doing.

Amazingly, I have been moving/rubbing/massaging my "bad" hand with my "good" hand.

I feel so lucky to have found this forum.

[Fred4545]

Jeff,

You are getting great advice...being a "newbie" brings such emotions, so many questions, so much pain, such desperation. Please know the value of this site and those who have unfortunately learned thru many years of experiences. Do not wait for proper care...do not stop exercising, moving, bending, stretching, pulling...use your good hand...use the tools and tricks you read about on this site...find a PT that cares about you getting better and improving, even as you can feel things going away...don't let it just happen!

I too had a cervical fusion and I too have lost my deltoid along with my pec and tricep and complete use of left hand. I started at Cicinnati Health and had good care but unsuccessful nerve surgery, went to St. Louis but didn't hear what I needed to hear, so then went to Mayo and had a sural nerve transfer on March 8, 2012 by Dr. Skinner and team. I won't know the complete result for a year but I already know it changed my life...because it gave me confidence and hope and the belief that I have a say in what happens to me. I have the best PT in the world and she kicks my butt to push myself...to not just let this terrible injury control me...don't let it control you. When you have questions, concerns, depression, pain, you can come to this site and find someone who has been there...is there...and will help you move forward.

I know I will never be the same again, and there will be obstacles and challenges ahead that are too tough to even dream about right now, but I know I will stand up and take that next step because there are hundreds of stories and people like me that are right here doing it everyday.

I'm sorry you are going thru this Jeff. I hope and pray that your recovery is complete and comfortable...but on those days when it isn't, you can come here and find some needed support. Best wishes and regards.

Jeff