United Brachial Plexus Network, Inc.

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Wendy...

Sorry I took so ling for the reply. In Matt's case it is all because of his RSD. He cannot touch the area without it hurting. The swelling is part of the complex pain syndrome. He only weighs around 140 pounds and is 6 foot tall and on most days you cannot see his bones because his left side is so swollen, his swelling goes up the neck and into his lower jaw.

I wish you all the luck in the world! I would say find a BP or RSD specialist and go from there!
Beth

PS
Matt is in the hospital now getting IV lidocaine for 5 days to help with the pain of the RSD....we will see how it goes.

Wendy I was just checking in to see how your doctors appointment went on Wednesday. Drop a note when you get a chance.

Joy

Hi Joy. Sorry it took so long to get back here. Been a little stressed here. The appt. with the Neuro pain doctor, was typical, touch this, look here, do you feel this, this and this? I talked with him about my symptoms and he had read the reports from everyone, all saying, nothing found. Well I got to tell you,I was a little stunned when he looked through the actual films I had brought. Why? Because he flipped through them, holding them up in the air momentarily to glance at it and then slapped it down and went to another. He said there didn't seem to be a thing wrong and he couldn't help me for whatever type of pain I had. HUH!?

So I voiced a concern I had regarding the cervical scan done in March looking for herniations, etc.s and asked him about this one large spot that appears to be sitting under the sternocleidomastoid muscle on the left side. I pointed it out and said what is that? This is the left side right, and it would be in this side area right? He said yes,and it would be in that area, and where is it's pair on the other side? Bottom line is he doesn't know what it is. Think of a clock face and the clock face delineates the neck circumference, the spinal column in the very center. This spot is at about 8 o'clock. He said he would call radiology and find out, then have his nurse call me. Well I missed her call Friday. On Thursday I was a bit confused about this on the scan and sent a faxed photo of 4 pictures of the scan and asked my ortho doctor what it was. The response was 'This is not my area of expertise' because he is a spinal surgeon and this is not part of the actual spine. Hmmmm. He recommends my PCP to consult with. Okay.

So do any of you have knowledge of MRI scans at all? I'm baffled here. When they do a cervical scan for herniations do they not do just the neck? And they do the scan straight across the neck, not at an angle do they?
Wendy

What an ordeal. Went to the PCP. That guy is a whack job. I haven't seen him in months and I'm a bit concerned about this spot, and so ask him. He says that is the tip of your humerus, the top of your arm bone at the shoulder. HUH? A little far I say. He gives me a once over and then settles down to ask me if I am happy? You know, deep down happy and he pounds his chest a few times. Uh no, considering the past year and a half, bad back, SI joints, Piriformis muscle problems and all and then the MVA, no, I think I've had better days. He says, when you get happy about yourself then you'll get better. Then he says I have some mental illness that basically means I do things to gain more attention and fake illnesses, because I'm not happy about myself. HUH!?!?!?! He also says everytime I come into the office I am glum and unhappy, and I'm thinking maybe he could walk into the exam room with a smile on his face too for a change. Gee, I'm hurting, think I'll dance and sing when I come in? No, I don't think so.

And then he asks me if I hate my mother. Well my mother and I don't have that good of a relationship and she wasn't very nurturing when I was a child, but this guy went even further to say that I would benefit from mood altering drugs (head meds) and going to see a head doctor. He says there's nothing wrong with taking meds nor seeing a doctor, because he does, take mood altering drugs and sees a psychiatrist that is. Because he was at rock bottom at one point and depressed about something that happened long, long time ago. But he said, he wouldn't go into it at this point right now. OK, so this guy is mirroring his problems onto me and wants to take me down with him into his den of depression. Sheesh.

Anyway, I saw in the MRI of the neck a large spot that no one could tell me what it was, but I did find out what the white spot was, and it's my Jugular vein, believe it or not. It is huge! Surprised the heck out of me when the radiologist told me this evening. Yes, I called the man who read the scan and he granted me some time to explain it. He said it was normal to have one this large. Okay, it would explain though why that area hurts a bit more than just a muscle bruise, because I probably stretched and bruised the vein as well in the MVA. I tell him I'm having muscle spasms which are causing the arms to go numb and major pain, so he says I need to see my primary. I tell him he is the reason why I'm sitting with him this moment because he said this spot was my humerus. What really surprises me though is that none of four doctors that care for me, could readily ID the anatomy. And my PCP is an internal medicine doctor. You would think he would know what he's looking at. Mind you, he's on drugs so what the hell does he care if he gets his anatomy screwed up?

So at this moment I guess I just have to wait this out for a while longer to see how it all progresses. It's not life-threatening so we'll just grit the teeth and get through it. Anyone have any ideas about getting swelling down? Without ice, because ice is like fire on the skin.
Wendy

Welcome to the world of TBPI and dealing with doctors. I am in the middle of cooking dinner. I will come back and hopefully offer you some advice on the swelling. In an early post where I said don't give up. This is what I meant.

Uh yes Joy. I went through this last year too with the initial accident with the hips. It landed me in the hospital for 2 days with stroke-like symptoms. When I have a bit more time I'll post it. But to keep it in line with the doctor issue, I got disgusted with a prominant neurologist when he suggested my problems stemmed from fibromyalgia, and pretty much walked out on him. Got (hehehe) thrown out of another doctor's office because I wouldn't agree to go on head meds, and was treated with a cold shoulder the second time I got into this last doctor's office that I went to on Friday, when he saw the other doctor's reports (I guess) and was less than helpful in trying to figure out why I,

1. Had developed the stroke-like symptoms and

2. Why I had sciatica and low back pain and

3. Why I had numbness in the saddle.

You know 5 neurologists heard that plight of mine and not one even considered it a major problem. I would like for each of them to have a numb pelvis, hip to hip and everything inbetween, (oh yeah, the family jewels too) to be numb, numb, numb, for a week or two, and see how freaked they get.

Joy I wanted to ask here, what degree of BPI do you have? How does it affect your arm, and what does the TOS do to you?

I got to get to work here in a few minutes and I hope you read this sometime today.

Wendy,

I have about 50% use of my left arm, hand and shoulder. Some days it is more. Some days it is less. But, I average about 50%. I am not able to lift my arm any further than shoulder height. The pain can be anywhere.... neck, shoulder, shoulder blade, the ball of the shoulder, wrist, hand, fingers.

Tonight the left side of my face is fevered, red and sensitive to the touch. My vision is slightly blurred in the left eye and I have ringing in my ear. The ringing if still there when I go to bed is horrible! I will have to turn the TV or radio on to help drown out the ringing. The ball of my shoulder feels like it is going to fall out and is achy.

My arm does not comfortably go out straight. I keep it slightly bent at the elbow. I use a fanny pack or purse that goes over my shoulder to rest my arm on when I am out. I am looking into a sling to use instead. The weight of my arm pulls on the shoulder and neck causing swelling, numbness and pain.

To be honest with you Wendy I am not sure what is TOS or BPI related. They over lap so much it would be hard for me to pin point what symptom is associate with which injury. I know the swelling in the clavicle area is TOS related. I know the pain in my chest just under the clavicle is TOS related. The pain in the arm pit is most likely TOS related however it could be BPI related. The weakness and lack of grip in my hand could be TOS or BPI related.

Here is a web site you may want to explore, if you have not already.

http://www.ninds.nih.gov/disorders/thor ... oracic.htm

http://www.nismat.org/ptcor/thoracic_outlet

http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

http://en.wikipedia.org/wiki/Brachial_plexus This is a really good one that shows how everything is connected and intertwined!

I know this may not be a very popular opinion. But, do not rule out "head meds" or honestly even therapy. I have always been a firm believer in therapy. I mean lets face it we have been through a trauma! I lost everything after my accident. I had to in many ways redefine who I was and what I wanted to become. That can be depressing!

I take something for anxiety. I was told early on that I would most likely have to be on something for the rest of my life. If I get upset or stressed the muscles tighten around the nerves. Thus, causing pain, numbness blah, blah, blah. So I take the anxiety pills. Small dose unless I know a stressful situation is going to arise. You know like dealing with doctors or going to a family gathering.

There are actually some meds that help with nerve pain and symptoms. So don't rule out the meds. Not necessarily for depression but for the relief you can get from them.

Perhaps with the next doctor don't take in your other reports. Go in cold. Tell him you want a work up that he and he alone does. Tell him you are looking for a second opinion and don't want to taint his initial findings by what other doctors think. Just a thought.

Gotta tell you I am impressed. I have never been thrown out of a doctors office before! LOL

Thank you Joy for your post. I really feel for you with what you're going through on a daily basis. I am fortunate I guess that my present condition is improving somewhat. Only had (counting today) 6 painful attacks this month. Last month was 13, with aching arm, shoulder and neck following each day and the few days inbetween these episodes, somewhat painfree. I get pretty much all you do, even the blurry vision when I try to read something close up like a magazine. Ringing? Oh yeah! Been constant since the accident.

I did discover early in this month of June, that I could raise my arm above the shoulder if I rotated it inwardly sharply. I would also get the strength back to my hand and bicep. I showed the PT and the Doctor what I could do and it was then he took another look and saw the AC joint was bad. This is one of the reasons I have pain right at the shoulder point. I have to lift and pull back the shoulder to manage a longer fix, and I hear a click/snick at the connecting point of the shoulder and spine. The problem (yeah always a but) is when I do this, it can sometimes mess up the connection somewhere and the arm goes a bit numb.

I had one of those pain attacks start this morning and decided I would go to a walk-in medical facility for some pain relief. The doctor was mystified as to why I was there, (duh) but did observe the clavical swelling and saw that I was in a good deal of pain. And I had taken a whole vicadin 2 hours prior. I get this stiffness going on with the muscles which seemed to him to be a spinal injury. He asked about my primary doctor and I briefed him a bit on what had transpired with him the prior week. I didn't give him his name otherwise they might have called his office. Like I want that to happen. They did call the Ortho doc's I'm sure to check out my story. They were the ones to suggest I go to the ER if I have problems, so there I was. Not the ER but good enough. He did ask if I had ever been treated for depression, to which I answered, "no of course. And I want to make one thing perfectly clear, that as far as I was concerned I was handling this all pretty good, considering the past few months. I know I'll get better, what with the major pain episodes going from 13 to 6 so far this month".

They gave me a shot of muscle relaxer, a script for nerve pain and one for muscle relaxers. So I finally started to feel a bit better by 3 pm. I need to find a primary doctor though, it's imperative at this point, to assist with this situation.

Thanks very much for your help, I have looked at some of the sites, but will check the first two out.
Wendy