United Brachial Plexus Network, Inc.

I am experiencing the wildest things with my left arm. Has anyone had these things occur?
My arm does not move or have feeling from the elbow down.
I have been getting excruciating pain from spasms in various locations of my arm from the shoulder to the fingertips at different spots or the whole arm. Well, since Monday my arm has been involuntarily moving backwards and forward, in circles, side to side, shaking and swinging wildly. Some of this is painless some is incredibly painful.

My hand also gets itchy but it is under the skin level so I can't really itch it but I try anyway.

I had nerve by-pass on 7/12/07. The ulna nerve was used to graft the median nerve. I saw my surgeon on Monday and saw one of these attacks. He is sending me to a neurologist on 2/22/08 for a consultation.

Has anyone had this? How long did it last? The elbow appears to be moving during these attacks. I think this is a good sign that elbow movement is trying to come back but when should I expect to actually have some kind of control?

Thanks for the help and ideas.
Janelle

Hello old friend.
Good and bad to hear from you.
As of late I have been having severe shock spasms and they are tearing me up. Another stranger than fiction problem I'm having is so bad I am taking myself to the hospital tomorrow because I am really ascared of this. My hand has been in an unusual amount of pain, aside from the shock treatments, and the base of my index and middle fingers are grossly swollen. I told Jacob I am very concerned for the first time about amputation. I don't know what's going on but I feel deeply that something is seriously wrong. I think we may have something similar happening Janelle and I hope this time tomorrow I'll have something scientific to share.
Fingers crossed.
Ps Thanks to Carolyn was reminded of the hand warmer I can put in my glove and hopefully that'll tone down one of the plethora of problems we so readily face and conquer.
I have never gone so far as nerve repair...yet. We'll see tomorrow.
Of course my best and warmest to all.
Peace out.
Scott
http://www.freerice.com/
Go ahead challenge yourself and allow others to gain from our endeavors.

Hi Janelle
What you're desctribing sounds a lot like the random impulses people with partially healed peripheral nerve injuries such as tbpi get. The arm twitching is called fasciculation, the itching under the skin that you can't scratch is called formication. My arm used to flap about like a fish, and altho it isn't as bad now it still spasms every now and then, several times a day. It's not so violent now that other people notice. The formication still happens too, and I got my bpi in January 1980! As far as I know, people with more severe injuries don't get it as bad, it's something to do with partially recovered nerves spontaneously firing. I also have a thing where it feels a tho my fist is clenching hard enough to dig my nails into my palm, and all the endons feel stretched as if they would snap. when I feel this the arm seems totally immobile but that's how it feels.

All these weird things are very normal in tbpi and hopefully part of the recovery process. In fact the feelings can follow a nerve down as it heals, doctors use the sensations to work out where the nerve has got to, it's called "Tinel's Sign'. Google all of the above, there's lots of info out there just not always tbpi specific.

I am taking Lyrica 100 mgs, Baclofen, Methadone 10 mgs 3 x's a day with Dilaudid 4-10 mgs as needed for pain. The Baclofen started as 5 mgs, building to 10 mgs. I will be on 10 mgs 3x's a day Thursday. Since I have been on Baclofen at 10 mgs2 x's a day my pain level has greatly decreased. I am hopeful when it is 10 mgs 3 x's a day the pain will decrease even more. I still have the jumping, flying spasms but the excruciating contractions are greatly decreased. I find I only need the 4 mgs Dilaudid once or twice a day. Huge decrease from 20 - 30 mgs.

It seems that my Pain Mgmnt Team has found the right combination. I truly hope that this lasts. I can live with the flying arm. The crushing contractions were more than I could handle.

Scott, How did you make out? I hope your appointment had some positive results rather than the possibility of amputation. The nerve graft looks like it is showing signs of the surgery have started to take effect for me. Is this being considered for you? It's not too bad especially if it works. It's the months of waiting that make you wonder. I am starting, I hope, to see the plus side.

Jenny, Thanks for all the details of what is going on in my arm and the names for me to Google. I haven't had the chance to check them out yet but I assure you I will look into them starting tomorrow. I haven't been on my computer until tonight.

I appreciate all the help you all give me.
Janelle

Hello Janelle I sure hope things have settled down again for you? Your last post was on my 53rd birthday. How 'bout that? I honestly can not believe I've made it this far.
My appointment was pretty insignificant. I was told I have a circulation problem quite possibly a heart problem. It just so happened that day that my right lower leg was seriously swollen, painfull and grotesque looking. I was set up for lab and a CAT scan? I'm not sure what all that has to do with anything really though. Regardless my appoints. were set for yesterday and which I completely forgot about. I'm kinda bummed about it because for them to have gotten me appoints. on such a short turnaround is pretty much unheard of. They must think it serious enough. Luckily for me the three doctors who have suggested amputation were not to be seen.
I've been trying to work out not wearing my brace all the time then every night sit in pain and wonderment. I wonder what's next. I wish they would just fix my shoulder and let me work with rest. Jeeze my shoulder seems to be in constant pain even with my pain meds.

Well I still have no idea what the future holds for me but one thing is for certain and that is I have no idea what the future holds for me. Everything else is day by day.

Didn't you try going back to work on a more suitable schedule for yourself? I can't imagine going back to work. I'm so consumed with pain I couldn't honestly take anyone's money for a job I couldn't do 100%.
God bless us all,
Peace out
Scott
http://www.freerice.com/

Hi Scott,
Sorry it has taken me forever to get back to you. Feb has been a month of unbelievable pain for me. I'm doing better now. It seems the drugs I was taking to relieve my pain was actually increasing my pain issues. I am now on Lyrica, Methadone & Baclofen. The Dilodid & valium are gone as of 3/1/08. When pain starts I set my mind in a different direction to try to forget the pain & it seems to be working for me.

As far as work is concerned my office and LTD have set me up with Alsup to apply for SSDI. They don't believe I will be able to return to work full time. My company was great but they couldn't hold my job open for more than a year.

I have decided that I want to try to get off as many if not all the drugs I am on. I would like to work with my doctors on a program to be drug free. I see the Pain Management Specialist on 3/28/08. I plan to tell him my desire at that meeting.

I hope things are going better for you. You seemed to be having a very rough time.

Let me know how things are going.

Janelle

Hi ya Janelle. Hope this post finds you in control?
I am ready to give up. Honestly. After the last time I was logged on I put a password on my laptop IN MY SLEEP!
When I logged on the next day and the password screen appeared I was floored. I knew immediately what I had done and that there was no way I could get past that password. I didn't have a clue. For a couple of weeks the laptop just sat there. Jacob and I were both taking cracks at it obviously to no avail.
Today I was starting to reload my OS and sneaked around the corner and opened my Windows. Fantastic!!!
So....I too would rather be drug free I just can't do it. Not all of them not all of at once. I'll keep trying. I hope you do as well. Good luck.
Peace,
Scott

http://www.freerice.com/


Oh yea yesterday, March 4, it snowed here. Today I'm in shorts and a tee and in probably 70 degree weather.
How are you dealing with NE weather?

Hey Scott,
So far so well on my being able to tell my arm that it is not going to give me the pain that was stopping me in my tracks. I just set my mind to something else and so far it is working.
As far as my coming off all my drugs I will do it with the plan the doctor subscribes. If I find that I can't live without some aide I will discuss that issue and see if there are other alternatives to my being able to use my mind to control the pain.
I know you will find a way to get control of what your body is putting you through. You are a very strong man who is to be admired for all you have been through and how you have handled it.
If you think there might be a different team of doctors that might be able to help you, it is well worth the search. I am dealing mainly with MGH doctors but if my pain management specialist and I don't get closer to the same page I will request for a different doctor from MGH to handle me.
Mike, my husband, has severe tendonitis in the right shoulder. He injured it about 12 years ago at work. He was told then he would need surgery to repair it. Now, it is so bad I made an appointment for him to be seen. He doesn't want surgery until after summer is over. He doesn't want to miss golf. He is also concerned about how we will handle his surgery and my issues. I told him we will find away to work it out. Jolene, our daughter wants to help but she teaches so she wants him to have the surgery during the summer so she can be here to help. Should be interesting to see how this goes.
Hang in there my friend.
Janelle