United Brachial Plexus Network

Hi everybody, I am 27 months post injury (stretched at C5/C6 area and crushed at the wrist) and just found out that my anterior scalene muscle was torn in addition to the rest. Because it wasn't diagnosed or treated, the muscle has either healed in a bulged postion or has developed scar tissue. Either way, it's pressing against the plexus - based on radiant pain symptoms, it's probably touching/pressing on the area of C8/T1 and is causing continuing problems - intense burning pain in my forearm, hand and scapula area. I am extremely fortunate to have the mildest form of a TBPI and have a lot of shoulder and upper arm function. My forearm and hand are limited and constantly in pain. It's a mixed blessing because all it takes is one wrong move and I'm back to day one pain wise. There are a couple treatment options for this muscle situation; inject it with annesthetic to cause it to shrink (atrophy) away from the nerves, debridemet of scar tissue, or removal. I am considering removal. Chemmical treatments wont last forever and debridement of scar tissue might cause more scarring. My insurance for this injury will only last 2 more years. I'm sure any of you can understnd that I NEVER want to feel this pain again so my logic is, removal would assure that this pesky muscle never gets on those nerves again. It's risky and I'm nervous about it. Anatomicaly, it's a tight space. I pray my surgeon has a steady hand! In addition to being against the plexus, it's next to the nerve that lets me breathe on my own. If anyone has had a scalenectomy, I would really appreciate hearing about your experience. The other thing that's been authorized is a ganglion stellate block. I begged for this a year and a half ago but the docs told me I would lose what function I did have and there was a significant risk of aggravating the BP further (meaning more pain) so I didn't do it. I've got the ball rolling but (insurance companies!) it will probably be a couple weeks before anything is scheduled. I'm hoping to be as informed as possible before making any decision. Information is scarce on this. Anyone have advice?

I am not sure what I would do in your situation as it is a tricky one.

but I do want to warn you about the risks...which I am sure you probably know a lot about already though.

I had a cervical rib resection and anterior scalenectomy and that is what caused my brachial plexus injury. Nerves were cut during the procedure.

I just warn you to be careful and make sure your surgeon knows what he is doing. Make sure you get every test possible to identify where the nerves are ahead of time (MRI, CT scan, etc) so that they are identified before any cutting is done.

Oh lord, that's scary. I'm very sorry to hear about your surgery. I'm guessing that you had the rib resection and scalenectomy in hopes of feeling better. But you woke up with a whole new set of problems?...how awful!

I was so excited to find out WHY -pain wise, I've gone back to day one so many times, I didn't care about risks, I just wanted it gone. When I learned of its exact location and studied photos of the actual anatomy, the risks seemed pretty obvious. I was so scared, I quit looking. Been living in denial ever since. I try to accentuate the positive ..."how's the arm?" ..."it'll be a lot better when I get that muscle gone!" .... and I say it like I believe it. Hoping - like voodoo or something, it will make a difference.

Honestly, I don't know what to do about this.

For the last 27 months I have been willing to take or do anything to help myself. I even considered amputation but I was told it wouldn't help. My only deal breaker has been "not if there's a risk of it hurting worse".

I'm supposed to have a special MRI (there have been delays with the insurance so it's not scheduled yet). I'm hoping that this image will be of exceptional quality and help me and the doc to make good decisions.

Thank you for the warning and sharing your experience. I haven't found very many people who've had a scalenectomy. You're the first to answer back.

I am not quite sure if our situations are that related but the scar tissue surgery you are speaking of sounds familiar to one I had a few years ago. Our situations are different because I have a brachial plexus injury from birth. I have never had a torn anterior scalene. However, several years ago I began developing tingling, burning pain in the shoulder, arm, hand. My brachial plexus specialist suggested I may have scar tissue pressing on the nerves as they exit the anterior scalene. I had surgery to remove scar tissue and I am glad that I did it. I experienced a noticeable decrease in pain. I hope this helps.
Becky

Strange as this may sound...look at ice, natural anti inflamitory meds...hemey sling...rest...less stress...the body has a way of managing all things...you can rush a surgery, but over time...the body will know what to do also...time & patience is everything, in the world of healing.

Yes, thank you, this helps. The symptoms you describe from the scar tissue are very similar – almost exact, to mine. Do you know what caused your scar tissue to form...did you have an injury or did you just develop symptoms? So far, I have only managed to find one doc who specializes in bpi's but the insurance co. won’t pay his full fee. I offered to pay the difference but the law doesn’t allow it (I'm workers comp). So, I have to start over and find a new doc to help me with this. So far, I've seen 15 docs and none have experience with BPI's so I've had to do a lot of research and educating. I will share your experience with the next one I see.

As for natural remedies, etc., thank you very much for your suggestions. I don’t' think I'm rushing into anything. It's been more than 2 years since I was hurt. I wasn’t diagnosed until 2 months after the initial injury. But the minute I found out, I researched every possible remedy there is and began using it. My sister is a holistic health counselor specializing in nutritional therapy. So In addition to the pharmaceuticals, I take vitamin B6 (but not too much because the body will stop making it on its own), B12, fish oil, magnesium, alfalfa, and massive quantities of watermelon because it's a vasodialator (I also have a vascular injury; my radial artery is gone from the elbow down). Since July 3, 08 I have consumed 411 whole watermelons. I use a tens unit, practice meditation, try talking myself out of the pain, I learned to breathe diaphragmatically, tried autogenic conditioning, hypnosis, physical exercise (to the extent I'm able), diversion techniques, and lots of prayer. I even opened my mind to having my "Chakras balanced". That was interesting but wasn't at all helpful. At this point, I'd try voodoo if it were offered to me. I sure wouldn't discourage anyone from using alternative therapies but I would warn that their effects are seen gradually and can take a very -very, long time. So far, none of my efforts have resulted in relieving pain or restoring function but I keep doing it because it's wont hurt and is better (for my head!) than doing nothing. Maybe after a couple of years I'll feel a difference but at this point, I'm willing to try something more radical.

I do not know what caused my scar tissue to form. I was born with this injury and have had a lifetime of brachial plexus nerve damage. BPI specialists are not that common and you may have to travel depending on where you live. When I had my surgery I was living in Pittsburgh, PA. My doctor was based in Pittsburgh and was actually a pediatric BPI specialist who sees adults and has treated some adult TBPIs. I think you should find a specialist closest to you and start from there.
Becky

I had two stellate ganglion blocks done and I would tell anyone not to do it. I seriously think it is part of the reason I never regained more movement.

The first time it did nothing except increase the pain. Doctor assured me that if we waited I think it was like four weeks that if we repeated the block it would work to reduce the pain.

After the second block through my own research including having a neurologist look at my MRI scans what happened made perfect sense but at the time it was awful. The second block literally backfired! Instead of going down the arm it went up into my face. I already had Horner's Syndrome and this made it even worse! For over twelve weeks my left side of my face looked like it was melting off! I couldn't hear! My eye looked like it had exploded! It was awful plus it made the pain increase even more!

The neurologist said that what happened was the first block was injected in a part of the bp that was so severly damaged its no wonder it did nothing except aggrivate those nerves even more. The second block Was injected just above a tear. If it would have been below it might have done something. The tear is what prevented it from going down.

Its been nine years and I still have after effects. I think the hugest reason for failure with this procedure is that they are doing it by feel literally they blindly are aiming a needle at what they think is right spot. TBPI are not "normal" after injury so how can anyone tell what is what.

minnie

Thanks for sharing Minnie. Yikes! You make a vary good point about just blindly poking around at an injured plexus. TOne doc going to give MRI-guided injections. The MRI lowered the risk factor to a more acceptable level so I was going to give it a try. As it stands, I can't go to that doc so any such treatment will be done the regular, poke blindly way. I don't know. I also have CRPS II and some say it a block will make that worse. Others say "poo". This is scary and hard. I'm a terrible gambler and not too good at factoring odds. Even without the risk factors, a block would take away what function I have. I guess I'm ok with that if it decreases my pain.

Anybody else try this? Did it help with pain? I would really appreciate haring form you. Anyone? Anyone? ...Buuuller?