United Brachial Plexus Network, Inc.

Brain,

Send me your mailing address via the email registered under my name - and I'll get a DVD out to you.

Keep asking questions...

Ellen

Hey Brian - Just got home & had the chance to read other posts more carefully. It's great that you don't have surgical limits from any other injuries- so often, people w/bpi were in such a bad accident that there are other injuries, some of which end up taking precedent over bpi so time is lost to address the nerve issues.

You expressed interest in learning more about muscle transfers. There is a difference between a muscle transfer & a free muscle transfer. All I can speak to is the functioning free muscle transfer(FFMT) since that is what was done for John (moving gracilis muscle/tendon from his inner thigh to his arm).
I think there are only three doctor/clinics that perform FFMT: Mayo Clinic, Dr Alan Belzburg (Johns Hopkins) & Dr Julia Terzis in VA. Other readers, let me know if there are addt'l bpi doctors who also do the free muscle transfers. I think the other muscle transfer would be taking a functional muscle already in the arm & utilizing it in a different way - you guys out there, help clarify this!

You can do a google search on "brachial plexus free functioning muscle transfer" & get a good many hits - but since my PC crashes when I open pdf files, I can't open many of them. I did see something out there by Doi, who originated the procedure & from whom the Mayo guys learned it. (John had a "Double Doi", which was performing the transfer with both his gracilis muscles.) And fyi, the gracilis is a good muscle to take, since it's used for gripping & not really missed unless you ride horses...

OK, now I've given you 'way more than you probably wanted to know. Do send your mailing address when you are on your email system.

Hang in there (sick joke),

Ellen

Brian, I am wondering what Dr. Nath had to say, if you got to see him today, I am assuming that was your guest post. He is my surgeon and we have bee ntalking aobut doing the gracilis muscle transfer for my biceps. Dr. Nath does NOT do this procedure alone. I saw Dr. Gharboui (sp?)about it, he owuld work with Dr. Nath.

I am interested in what he had to say and offer as options. Keep us posted!

COurt xx

Ellen and all

Interested to understand more about the timings when the surgeries were done after accident. I saw Dr Nath the other night. Because my accident happened approx 3 months ago, he wants to wait to do any type of surgery that would include grafting of nerves or muscle transfer. He felt he wanted to wait for a year to see if I can heal naturally on my own. He stated that he has never heard of anyone getting hand movement back after doing these types of surgeries. He felt they might negatively impact my natural ability to heal. He indicated that the EMG's and MRI's are not 100% indicative of nerve avulsions. He recommneded a few things.
1) that I come and have a procudure(surgery) done to remove scar tissue and
2) do an activity test. He will test the reaction of nerves and muscle through direct stimulation during the surgery . He indicated that this might be a better test to see if he can stimualte them directly when they are exposed during surgery.

I agree with the removal of scar tissue and activity test but am concerned about having to wait to do anything else for a year. I thought I needed to act within a year or my muscle will atrophy too much to recover.

I am very interested in others experiences and opinions here. I also thought that people had experienced functionality return after nerve and muscle transfer. I was surprised to hear him say this.

Please provide thoughts here. THANKS!!!!
Brian

Hi Brian, my injury sounds exactly like yours, except older. It's going into my 7th months and I still have had no surgeries. I've been to two neurosurgeons and each have had different advice. One wanted me to have three surgeries when I was in my 5th month. The other surgeon told me the same thing that Dr. Nath told you. That is to wait one year and then do a tendon transfer. It would give me flexion in my hand.

In my opinion, I think it is best to wait for the nerves to get whatever it can get back on its own. Right after my accident, I couldn't move my left arm at all. But after 6 months and (I think) minimal PT, I now have full range of motion.

Hope I helped you in some way. If not, please email or anything else, and I would be happy to answer you.

Kim.

PS. How come I can't log into my username? It keeps popping up an error page when I click the login button. Does anyone know what I can do? Thanks

Brian, thanks for the update. I'll do my best to respond to the questions I can - and as you well know by now, there are plenty of others who can (& will!)jump on in.

Dr. Nath is correct that the MRI & EMG tests aren't 100% conclusive, mores the pity. Seems what it all boils down to is the doctor evaluating those test results best they can based on their past experience, then outlining for the patient several surgical options based on what they do find once they go in. I've learned that to a degree, people can be "wired" differently and a doctor shouldn't make assumptions.

I also agree that scar tissue can be a big culprit in not allowing healing to take place. Frankly, I wish surgeons could go in soon after the injury (almost as exploratory surgery), see what's really going on, clear out scar tissue - and then proceed from there based on what's appropriate...which could mean allowing nature to take it's course, or to immediately proceed w/ nerve or even muscle transfers if necessary. This instead of the common practice of first waiting 3-6 months to see what happens.

Re hand movement recovery: John (at age 15) lost all five bp nerves, so his was a worst case scenario with the arm completely paralyzed. John had two major surgeries right at two years ago, transferring nerves over & also both gracilis muscle/tendons. Within ~6 months of each surgery, he had the beginnings of movement (bending elbow, twitching fingers) which have become much stronger with therapy. The muscles that are firing are bicep, deltoid & tricep. The gracilis is also strengthening shoulder & arm movement, & hand grip/release. Because John lost all nerves, the best Mayo could do with his hand was a grip & release movement with all fingers working together. i.e. his fingers & thumb come together as a unit when he brings his wrist up, then the grip releases when he brings the wrist down. Limited movement & functionality for sure, but then there wasn't much to work with since John had lost everything.

And that's where somebody else needs to step in w/their experience ...because since it appears you still have some functional bp nerves, I'd think there would be more to work with to restore increased function. (i.e. transferred nerves used for John included the phrenic, part of C7 from good side, four intercostals from chest - btw, he has no ill effects from the donor sites). So if these nerves were available & used to restore some movement/function to a completely paralyzed arm, I'd think the same number of donor nerves would also be there for someone else who needs to restore movement in fewer areas - so more could then be done with those areas. OK, now I think I'm talking in circles so will shut up.

Concern re muscle atrophy is valid. While waiting for nerves to grow out to target muscles, John did electrical stimulation (e-stim), causing the muscle to contract & thus keep going to an extent. He had a little unit at home which he'd zap himself with. Yesterday I learned that there is something that can be attached w/pads to multiple muscles at the same time, then connect to a little something-else in the pocket that drives the current, allowing more muscles to be stimulated at the same time, while the patient can be doing something else (sleep, whatever). We're looking into it & I'll send an update when I know more.

Did Dr. Nath suggest anything to help keep things "going" until surgery? If nerves are being transferred to fire original muscles, then I'd think time is important since nerves take so long to grow out ~ 1" / month. However, if the plan is to do a free muscle transfer (such as gracilis) then the surgeon is bringing new muscle in so the timing isn't so critical. Rocket Ray has recently posted, is planning a gracilis transfer at Mayo, and his injury was years ago. Make sense?

OK, now I'll FINALLY shut up! Hope this helped.

Take care,

Ellen

I had a brachial plexus injury with C5, C6 C7 avulsion 8 years ago and my doctors just sat on it until it was too late to do a nerve repair. The I did my own research and found help.

Two important things for you. The first is that I had a gracilis transfer (free muscle) and nerve repair by Dr. Belzberg at Hopkins. It has worked well and I have regained elbow flexion. This was very useful to me but is not why I am talking to you. The muscle/nerve surgery came after the more important surgery. I had the most terrible pain you can imagine in my hand. All of the drugs had failed, I had spinal cord stimulation that did nothing and then I found Dr. Belzberg and he did the DREZ surgery on me. I now have only occassional and minimal pain. Although I am grateful for the elbow flexion, it is the pain relief that I am truly happy about.
I think that Dr. Belzberg is the only surgeon who does both plexus surgery and is an expert in pain medicine, so I recommend him to all.

Brian
The only time it might pay to wait for natural healing first is when the injury is suspected to be a mild one, either because of the mechanism of injury or because movement and feeling start to return in the first few weeks. Neither of those scenarios apply to you so I am surprised Dr Nath suggests waiting. If for any reason the injury is suspected to involve avulsions, tbpi doctors will usually recommend that exploratory surgery is undertaken as soon as possible after the accident.

It would probably be a good idea to try and see a doctor whose main interest is trauma brachial plexus injuries rather than one whose main interest is obstetric injury, where a waiting period is usual, as obsteric injuries are usually much less severe. I do not believe waiting for natural healing when avulsions are suspected is in your best interests.

The point made about seeing a doctor who is also involved in pain medicine is a good one, too. It would be sensible to get some more opinions with doctors who have more experience with your kind of injury.
Jen NZ (unable to log in for some reason....)

Brian, if I were you I'd get a second opinion. Nath primarily treats babies and children and is not as experienced in treating adults as many of the other Drs that others speak about on here.

He is right when he says that MRI and EMG's do not give a 100% clear diagnosis of your injury, and every BPI surgeon will tell you this. (if they disagree with that, then run a mile!) The only way they can be really sure of the extent of your BP damage is to go in there and take a look, and using EMG testing on the nerves when they are exposed if they are in any doubt about what they see while they are 'in' there.

Here in the UK, people with a TBPI are routinely offered exploratory surgery and at this time, anything that can be done (like cleaning up any scar tissue) will be done along with any nerve grafting or transfers which are deemed suitable for each individual.

This is usually done at around the 3 month mark, for various clinical reasons (Wallerian degeneration and technical stuff like that...too long to go into here!)but recently, the surgeons have been 'going in' a lot sooner than this, particularly where multiple or full avulsions are suspected on all five nerve roots.

Hope this helps a bit...You are more than welcome to email me and I would be only too willing to help.

Lizzy B liz@tbpi-group.org

Liz is right, i had exploratory surgery 1 week after accident.
It cant harm to look and see for sure rather than guessing