New patient...

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
damaaster
Posts: 11
Joined: Tue Apr 19, 2011 5:18 am
Injury Description, Date, extent, surgical intervention etc: Dislocated Shoulder
Bone Fracture
Brachial plexus injury

Date of incident: April 7th, 2011
No surgery - rehab starts April 29th

New patient...

Post by damaaster »

Hi there.

My name is Jordan. I am a 27 year old male from Canada.

I was recently diagnosed with a Brachial Plexus injury after a hockey play saw me go flying into the boards shoulder first. I instantly lost all feeling in my arm and fingers. I found out later the extent of my injury:
- dislocated shoulder
- bone fracture
After they popped my shoulder back in I thought i'd be leaving the hospital shortly and the feeling in my arm would soon come back. The doctors informed me it wasn't normal to still have no feeling- kept me overnight and explained what a Brachial Plexus Injury was (i had never heard of it).

I have slowly regained some slight movement in my fingers and a little bit of sensation in my arm -I know it has only been 12 days since the incident occured - and i am hoping his is a good sign as I have been reading some cases of people having ZERO movement for months...

Other then the obvious loss of use of an arm - what is really frustrating is the pain at nights. As you can probably tell from the fact I am posting at 4:30 AM I have been having a lot of trouble sleeping. The only medication I am currently on is Tylenol 3's - but they wear off pretty quickly. Are there any tips on reducing the pain - or medications to take to help sleep? I really want to get back to work - but it will be tough on 2 hours of sleep per night,

During the day the pain doesnt seem AS bad - maybe because my mind is distracted - but at night it seems to worsen a lot. The pain is mainly in 2 separate spots
1 - the shoulder - not excruciating - but pretty bad
2- inside my elbow - this is the worst pain ive felt since my shoulder was popped out and hanging

Anyways - just wanted to say hello - introduce myself and hopefully get a few pain reducing tips.

-jordan
ColesMama
Posts: 9
Joined: Wed Mar 23, 2011 8:34 pm
Injury Description, Date, extent, surgical intervention etc: ROBPI - Cole is just 4 weeks old, we're new at this!

Re: New patient...

Post by ColesMama »

I'm sorry that I don't have any tips for you, because I have a baby with BPI. But I'm thankful you posted, I'm always interested to learn what it might feel like to him, since he can't tell me in words. I hope you do get answers, and I really hope your arm will fully heal!
dani_was_here
Posts: 37
Joined: Tue Sep 07, 2010 11:11 pm
Injury Description, Date, extent, surgical intervention etc: Traumatic BPI, June 8, 2008, Nerve graft surgery
Location: Ontario

Re: New patient...

Post by dani_was_here »

I am currently taking Lyrica and Codeine Contin for pain. The combination seems to work well for me. I am also in Canada around the London, Ontario area. If you ever need to talk just send me a message.
AngelaW
Posts: 240
Joined: Fri Feb 27, 2009 9:03 pm
Injury Description, Date, extent, surgical intervention etc: X

Re: New patient...

Post by AngelaW »

Nerve pain is really tricky to deal with, especially since nerves heal so slowly. . For me the first 4-6 months were the hardest and then gradually the pain started to recede to something bearable. If you decide to try other medication, just make sure they are specifically for treating nerve pain, like lyrica, tramadol, and neurontin (gabapentin). You have to be patient with them too as they usually start you off small and let the drugs build in your system so it could take several months to find a dose that works.

Some non-medication things that worked for me..............
leaving the radio or tv on when I slept. It seemed to trick my mind into focusing on something besides pain.

Strangely, massaging another part of my body like my leg or tummy......again, seemed to trick my brain so that the nerve pain would calm down

Forcing myself to keep busy enough during the day that my body was just too tired to stay awake

Really good therapy trick........start by rubbing your arm, hand, and shoulder with a soft cloth several times a day and then gradually try to move up to rougher fabrics, sponges, etc. This is to try to help activate the nerves in your arm/hand/shoulder to bring back normal sensation instead of the nerves firing randomly and painfully.

Hope this helps a little and good luck
Ang :)
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New patient...

Post by jmar »

hi jordan. today i had a stellate ganglion block. like you, when i was first injured 11 months ago, i had no feeling or function in my arm or hand, but some of the feeling started coming back within a few weeks. my inner elbow was (and still is) extremely sensitive. when i touch my body or anything else with my elbow. it sends me into a frenzy of pain. my hand and the ulnar side of my arm still has no feeling, but the hand has some function. but my fingers are clawed when i try to do anything. but i can straighten them at will. this block i mentioned helped me a lot. the doc that did this block said it should have been done when i first was injured. it probably wont do as much for me as it would have if i would have had it done in the beginning. oh how angry i am with the doctor who botched my surgery and caused me this agony only to let my hand and arm deteriorate while doing nothing about it!!ggggrrrrrrrrrrrrr
the pain in the elbow is caused by the ulnar nerve. do a research on cubital tunnel syndrome. that is where the ulnar nerve is trapped. if you get early treatment for the ulnar entrapment, you might be better off. i learned that the hard way. another thing is to get an inch-by-inch EMG. do not settle for anything else. my insurance company wanted a second opinion for the surgery for the ulnar entrapment. it was the wrong surgery to do. the ^&^%*@*&%^doctor that sent me to get the EMG just wanted me off his back to do one. so he ordered a very basic one that did not cover what it needed to cover. like you, i had never heard of a brachial plexus injury.
about sleeping. i had surgery on my lung 3 years ago and they gave me a lung pillow. if you search the forum for lung pillow, there is a link to show you one. i am in the process of putting a strap on it to keep it on my arm while i am asleep. but it helps to support and cradle my arm at night. another thing i did not know about is bending your arm while you are asleep. a totally bent elbow all night makes the pain worse. try wrapping your arm in a towell at night to keep from bending it and see
if that helps.
hope this helps. but hope i did not scare you. but this is the way this injury goes. you may get almost complete recovery, or you may not,but it sounds promising that you will get better. hang in there
damaaster
Posts: 11
Joined: Tue Apr 19, 2011 5:18 am
Injury Description, Date, extent, surgical intervention etc: Dislocated Shoulder
Bone Fracture
Brachial plexus injury

Date of incident: April 7th, 2011
No surgery - rehab starts April 29th

Re: New patient...

Post by damaaster »

Hey guys

Thanks for replying and the encouragement. I haven't gotten an EMG yet - however I was told that I will be getting a call to set one up in the next few weeks.

My physio starts next Friday so hopefully they have some tips for me. After reading more and more posts on here I tend to get more and more freaked out. Hearing stories from people who can barely move fingers or bend their elbow after months or years....makes it hard to stay optimistic. My injury doesnt seem nearly as serious as most on this site - so I cant even imagine how bad it is for some of the extreme cases.....

Another question I had was - are there any "best case scenarios"? Is there a chance after a few weeks/months everything is back to normal - or is this a pipe dream?

Speaking of Pipe dreams a few sites have mentioned marijuana as a possible solution for pain relief - has anyone tried this? I dont regularly smoke marijuana but i am willing to try anything to get some regular sleeping patterns.

Ive been off work now for two weeks and I must decide if I will go back right away or go on disability....I really want to get back to work (to keep my mind off the arm and just to get back into regular routines) but until I can get some medication that actually helps I think I'd be pretty useless at work.

I'll look into a "stellgate ganglion block" as I have no idea what that is. For those of you who are recovering/recovered - are you ever 100% recovered?
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New patient...

Post by jmar »

jordan, 12 days and you are getting some movement back is a an EXCELLENT sign. it was almost 3 weeks before i got some movement back. but when the movement came back, it REALLY came back. now the strength and pain are and still are another story. dont get too freaked out. it wont get any worse. it will only get better. i was at where you are at now about 10 months ago so it is still kinda fresh how that felt. this is going to sound strange, but dont let that bother you. when your hand starts hurting, EXCERCISE THE PAIN OUT OF IT. i got some colored rocks and other small objects that i spilled out on the counter picked them up one by one with my bad hand, put beads on a string, tried to write my name, played the keyboard with my bad hand. at first i had to push my fingers, individually, down with my good hand because there was no strength in my bad hand. i just thought up all kinds of things to do with my fingers and hand. if i would not have done that at first and continue doing it still, my fingers would have just clawed permanently. i am trying to avoid that now. if nothing else, KEEP THOSE FINGERS MOVING AND DOING SOMETHING. even if you have to lay your arm on a table and roll marbles around. KEEP THOSE FINGERS MOVING. i made it my full time job. you may not be able to move them much, but you got to do a little more than you think you can do. as far as the pain med goes, ask if you can try lyrica or one of the other nerve drugs. medical marijuanna is a narcotic. narcotics do nothing for nerve pain other than make you sleep then you are not moving your hand--you are asleep. KEEP THOSE FINGERS MOVING make them do things that they do not want to do.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: New patient...

Post by Carolyn J »

THANKS, ANG!!
Those Pain relief Tips are great for me too!!! :D :mrgreen: 8-)
Carolyn J
LOBPI/72
damaaster
Posts: 11
Joined: Tue Apr 19, 2011 5:18 am
Injury Description, Date, extent, surgical intervention etc: Dislocated Shoulder
Bone Fracture
Brachial plexus injury

Date of incident: April 7th, 2011
No surgery - rehab starts April 29th

Re: New patient...

Post by damaaster »

so I went to the hospital today to get some more t3's as they have been the only relief that works when trying to sleep. I saw a different doctor then last time, he refused to give me t3s and said i should take tylenol and advil at the same time. He said codeine should only be used for a few days - not weeks.

What suprised me more is that he said he doesnt think what I have is actually brachial plexus - he says i wouldnt have any movement or feeling back yet if it was. he THINKS my nerves may just be inflamed from when my shoulder dislocated.

My question is - is this common? I know nerves are a tricky thing- but is the EMG TEST basically the only way to confirm exactly what is wrong? I will be getting an EMG done in like 3 weeks.

I can move most of my fingers now, i can raise my arm up at the elbow a bit but only for a few seconds,...any thoughts?
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: New patient...

Post by jmar »

sounds like exactly what i went through. my arm had full movement but my hand did nothing just after 3 weeks. i could move my fingers a little bit but they were useless. if i were you, i would contact a BPI specialist. check on this site for a specialist under the resources tab. the doc i had treats a few people with BPI issues, but had no idea what he was doing. he was just playing a waiting game that may have costs me an increased recovery. i went to a specialist in BPI and now i am getting treatment. you can have movement at any point in your injury. everyones injury is different in when and how much movement comes back. always remember your injury is just as traumatic to you as anyone elses is to them.
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