United Brachial Plexus Network, Inc.

I think Michael and his mum are in Australia Jacko...Gayle Shann lives there. They should definitely have a look at the TBPI Group website and message board particularly...I know that us Brits and Aussies share the same sense of humour...

Michael, we would love to see you posting there as well as here! That goes for everyone else too; we look at this injury a bit differently, although there is still a serious side to it too. You will get answers to your questions there, giving maybe a slightly different slant on things. All and any information is what you need right now, especially about the 'P' word!

Take care

Lizzy B http://www.tbpi-group.org

I will deffo have to agree about the "slightly warped ideas of what is actually funny". You Brits view it differently than us Americans do, it really is odd how that works out! You laugh more about it, thats what I like. I am a true Brit at heart, wouldnt ya agree?? I love Jackos drawings, if I didnt tell ya before Jacko, I laughed my arse off about them! Amy enjoyed too! Defo check out the UK boards! But stay here too!

Court

Hi Guys,
Thanks for the messages. Yes I do have a name, Narelle! Typical aussie name. Also have the sense of humour as well. Considering what Michael is going through at the moment I have to admit we are trying to keep positive and look on the brighter things in life. We live in Sydney, New South Wales.
Thanks for info on the other sites to look. Will definately give them a go.
Regards Narelle & Michael

Dear Lizzy

Your guess was correct Michael and I (Narelle) are true blue aussies. Thanks for the site, will definately take a look at that. We are trying to get as much information as we can to help Michael through this injury and recovering process.

Will keep everyone informed on how things are going

Regards Narelle

Hi Ellen

This is Narelle Michael's mum! I just wanted to ask you a few questions if this is okay. Michael avulved 4 of the nerves. With surgery they only did the nerve transplant and not the muscle (at this stage anyway. He had surgery 4th August. I was wondering how long after your son's op did he start to get movement back and does he have any feelings or sensations. Michael has no sensation from the middle of the top of the arm to fingertips. He does have feeling around the shoulder and under the arm.

Thanks for the information on pain management. Michael is under pain management, however, it is all trial and error with medications and the doseages of them at this stage.

I was also wondering if your son now keeps his arm slinged. Michael has to have his arm slinged most of the time, especially in bed secured quite well to stop the arm from falling around.

I would appreciate some feedback or other information from you

Regards Narelle

Narelle,
I had to wear a sling after both of my surgeries for like 6 weeks depending on the procedure, the exploritory with the nerve graphs it was a bit longer, just to keep everything in place to make sure that the graphs took. Other than that I did wera a sling and i hated it! I really think it is something to ask the doctor about. My new doctor said what ever I was comfy with so I got rid of the bloody thing and glad that I did! It can cause contractures in the elbow too so be carefull with that, those are PAINFUL! Be sure to stretch the elbow out from time to time to no get them. Talk to the doc about a sling, and see what he says, if I were to do it a gain, not that i want to start from scratch with this, I wouldnt have worn a sling at all! (I have 2 avulsed and 2 ruptured) Some peeps never really wore a sling at all, just a personal prefernce I think..... Let us know how things are coming along.
Court

PS I started to see very small signs of improvement about8 months post op with the nerve graphs, this is a long slow process, have patience.

Hi Narelle,

I’ll post in two sections – this first one will deal with surgery.

Hope this isn't "TMI" (too much information) but just ignore the parts that don’t help. I’ll try to give you a synopsis of what was done & when, and then (based on dubious memory plagued by brain farts) when John started seeing results. Of course, different surgeons do different procedures, which would impact expectation of timing/degree of recovery.

Even when the same procedure is done, other factors can play in. For example, John was the first patient at the Mayo Clinic where the phrenic nerve was transferred. We are only now (1 yr 4 months) seeing muscle innervation from that procedure. However, in subsequent phrenic transfers, the Mayo doctors harvested much more of the nerve length – which then placed it much closer to the target muscle – and muscle response came about a whole lot sooner.

History – I’ll show date of procedure & approximately when we saw results:
Accident 11/17/02.
1st surgery 2/14/03:
- phrenic transferred (July ’04)
- crosslateral C7 transferred (close but not quite for muscle response)
- gracilis muscle/tendon from one leg for elbow (July ’03)
- sural nerves both legs for nerve grafting

2nd surgery 4/9/03:
- gracilis muscle/tendon from other leg for wrist extension & hand grip (Oct ’03)
- four intercostals (3 functional, 1 sensory) (Oct ’03 functional, no sensory yet)

The intercostal sensory nerve is to give John the ability to sense in his fingertips if he’s made contact with the object he’s reaching for – so it’s got a long way to go.

And bottom line on the surgery->timing of recovery->degree of recovery whole thing is that pretty much once surgery is performed, the degree of ultimate recovery is completely up to the patient. It takes a lot of discipline to do daily, intensive physical therapy for the multiple years it takes to get the highest degree of functional recovery.

Sensory: The only surgery for a sensory nerve was that for John’s fingers. But he’s had slow progress of sensory awareness down his inner arm. With the five functional bpi nerves avulsed, beats me how the increased sensory is happening – but we all know that nerves are funky critters. (Can you tell we’re from the South??)

OK, sling "stuff" next...

Ellen

OK, moving on to slings.
The primary things we had to guard against after surgery was not allowing John’s elbow to straighten or his arm to be wrenched back at the shoulder. Even after his arm could hang down, he still had to wear the sling while at high school since the hallways were so crowded w/kids rushing in both directions. At this point after surgery, he doesn’t have to wear a sling at all – and only does so for protection when riding his bike.

One thought to bear in mind is that the longer a sling is worn, the more the arm is being “trained” to hang in front. It’s been suggested that John make more effort to hold his shoulder back to try & get his arm to hang by his side instead – but it’s a hard habit to get into. So perhaps we should have lost the sling a bit sooner.

John can now participate in any “normal kid” sport but has to apply (duh) some common sense. It’s always best to keep his arm in a sling so it doesn’t get wrenched back in an accident. We’re hoping to get back into snow skiing this winter, & John was told to also keep his shoulder well padded in case of a fall. He’s decided it would be best to ski instead of snowboard, since snowboarders can fall in any direction & it would be riskier.

Hope this helps. If not, ask more questions!

Take care & keep us posted.

Ellen

Oh, dear - meant to also say that it's important to keep the wrist supported with some kind of splint while in a sling. John also wore a thumb splint after the 2nd surgery to help keep the thumb correctly positioned.

...and now I'll shut up...

Ellen

> Hi, My name is Michael, I am19 years of age and on
> the 8th May 2004 was involved in a motorcycle
> accident which resulted in a brachial plexus injury
> to my right arm. I have recently had surgery for
> nerve transplanting in an attempt to obtain some
> mobility back in that arm. I am coping quite well,
> but the pain side of things is the greatest challenge
> I have. At the moment I suppose it is early stages
> for me and am several drugs testing to see what helps
> with the pain. I would be very interested to hear
> from other people on how they have coped intially
> with their pain and what things they do to get
> through each day whether it be good or bad. I was
> very fortunate to meet Gayle and Mac Shann recently
> and she put me onto this website. I hope that I can
> get to talk to a lot of people who are in the same
> situation as I am.
>
> Regards Michael

Hi, Just a suggestion, have a look at Neurolink therapy re pain after a traumatic injury...site is neurolink.org anyway that should get you there and there are testamonials etc. regards Jane