United Brachial Plexus Network, Inc.

Do we all suffer absentmindedness(sp?) or is it just me? Wait, what? Am I the only one falling due to loss of balance? I can not be the only one suffering unbelievable 'shock jerks' which can be painful yet in a crowded elevator can also be quite funny if you let it...apologies to the lady I 'goosed' yesterday....lol...just kidding.

I can not believe how scatterbrained I have become. Honestly I can hardly remember posts that I've read and responded to and quite often find myself reading some of them over and over again. I get so lost just in the UBPN board I can not ever get to any other internet sites before I've typed and/or read so much that I must beg off. Oh well....
I don't know if it's magic or mental but it seems to me that everytime I log on to the UBPN I find myself in totally brand new waters reading about another one of us (TBPI)and the trials and tribulations we're all facing in one way or another.
Would someone please tell me if on the afflicted arm the muscles see to be severely pulled and as a result rock hard? It seems to me that some of my pain is a direct result of this phenom. The inside muscle from my elbow out towards my hand is hard like a charley horse and very sensational. Is this magic that I am feeling this now or mental and I am just creating a diversion from the 'real' problem(s)? Anybody?
If I've already asked this then please by all means...wait, what?
Scott
(LTBPI-JUNE 06)

Sorry I will not be seeing y'all at camp this year. Each time I thought I was ready to follow through with the application and reservations I guess I just fell through and forgot. Now maybe a little too late right? If it's not too late now or too early I'd sure like to sign up for camp '09. Wait, what? Maybe I'll be better by then...lol.
Scott

Scott, maybe it's the drugs you know. I know this has been an issue with me. A good example, last night we had some fish and broccoli for dinner, hubby gets the bottle of lemon juice out and splashes some on his fish, hands it to me and I proceed to splash mine, not on the fish, but the broccoli. LOL! Oh well, just made it kinda tangier you know.

About the stiffness in the arm, this sounds like hypertonicity of the muscles that you are experiencing. This has to do with the signals from the brain that tell the muscle to relax not getting there. I get this too, but it tends to be whole body effects for me. Before I was given Zanaflex (Tizanidine) this muscle tension would last for at least 36 hours after a major pain episode. At first I didn't really feel the muscle tension when these episodes first began after the accident, but each time they got worse and worse. I finally started to actually feel how tense they were getting when it affected my legs and feet where moving the feet side to side at the ankles brought the tension on the outside of the legs to my attention. It was several weeks after that that I got hold of the Zanaflex and it got a lot better. I had gone to a walkin clinic and the doctor said I appeared to have a spinal cord injury and gave me a shot, most likely this same stuff, and within 2 hours I was loose and limber. He also gave me the script for the pill form. And of course the pain of the muscles contracting and not relaxing was part of the whole pain issue. Because I was also having hand and arm weakness, at first not being able to raise my arm laterally past 90 degrees. I got past that by rotating the arm internally. At that time I still had biceps control on that side, but lost it after 45 days or so when I had a few bad episodes. I suspect that was the kicker for the radial nerve and when I actually wasn't capable of raising the hand and arm.

My thoughts are here, is that what if, you are having a motor neuron dysfunction regarding the stiffness of the muscles because there has not been anything administered to actually interrupt the message to the arm to contract the muscles. I am thinking that after such a long time with the signal to tighten the muscles going on so long, the signals just pile one on top of the other. If I remember correctly, you were in a motorcycle accident weren't you? This could damage certain areas selectively.

Kinda like my doctor appt today for them to check out my new problem of a paralyzed and somewhat numb forehead. I was having an issue today with pain and stiffness coming on in waves, and the doc was going to use the hammer on my arms. Well she took my right arm and smacked the spot, nothing, again, nothing. She held my arm and gave it a little shake, and said, 'you need to relax the muscles for me' I said, 'uh, this is as good as we get when I'm like this' Needless to say, the test was positive for non-functioning response.

So think about it, as the tizanidine works on the motor neurons and not actually the muscles, and it might help your situation.
Wendy

"Scott, maybe it's the drugs you know. I know this has been an issue with me"
~Wendy Lee

DITTO (was the issue, until I got off them)

> Scott, maybe it's the drugs you know. I know this has
> been an issue with me. A good example, last night we
> had some fish and broccoli for dinner, hubby gets the
> bottle of lemon juice out and splashes some on his
> fish, hands it to me and I proceed to splash mine,
> not on the fish, but the broccoli. LOL! Oh well, just
> made it kinda tangier you know.
>
> About the stiffness in the arm, this sounds like
> hypertonicity of the muscles that you are
> experiencing. This has to do with the signals from
> the brain that tell the muscle to relax not getting
> there. I get this too, but it tends to be whole body
> effects for me. Before I was given Zanaflex
> (Tizanidine) this muscle tension would last for at
> least 36 hours after a major pain episode. At first I
> didn't really feel the muscle tension when these
> episodes first began after the accident, but each
> time they got worse and worse. I finally started to
> actually feel how tense they were getting when it
> affected my legs and feet where moving the feet side
> to side at the ankles brought the tension on the
> outside of the legs to my attention. It was several
> weeks after that that I got hold of the Zanaflex and
> it got a lot better. I had gone to a walkin clinic
> and the doctor said I appeared to have a spinal cord
> injury and gave me a shot, most likely this same
> stuff, and within 2 hours I was loose and limber. He
> also gave me the script for the pill form. And of
> course the pain of the muscles contracting and not
> relaxing was part of the whole pain issue. Because I
> was also having hand and arm weakness, at first not
> being able to raise my arm laterally past 90 degrees.
> I got past that by rotating the arm internally. At
> that time I still had biceps control on that side,
> but lost it after 45 days or so when I had a few bad
> episodes. I suspect that was the kicker for the
> radial nerve and when I actually wasn't capable of
> raising the hand and arm.
>
> My thoughts are here, is that what if, you are having
> a motor neuron dysfunction regarding the stiffness of
> the muscles because there has not been anything
> administered to actually interrupt the message to the
> arm to contract the muscles. I am thinking that after
> such a long time with the signal to tighten the
> muscles going on so long, the signals just pile one
> on top of the other. Oops! Thought you in an accident, had doubts so I went back and checked. Spider bite. So what does the venom do to muscles and all? And have they taken this into consideration with the muscle stiffness? Although, if you fell you still could have damaged your grey matter you know, which could cause neuron damage.>
> Kinda like my doctor appt today for them to check out
> my new problem of a paralyzed and somewhat numb
> forehead. I was having an issue today with pain and
> stiffness coming on in waves, and the doc was going
> to use the hammer on my arms. Well she took my right
> arm and smacked the spot, nothing, again, nothing.
> She held my arm and gave it a little shake, and said,
> 'you need to relax the muscles for me' I said, 'uh,
> this is as good as we get when I'm like this'
> Needless to say, the test was positive for
> non-functioning response.
>
> So think about it, as the tizanidine works on the
> motor neurons and not actually the muscles, and it
> might help your situation.
> Wendy

Wendy you make me laugh. Thank you.
my motorcycle accident relates more with Shaunn (hope you are feeling and doing mush better mate!) I too had my femoral head fractured clean and reattached with some pretty elaborate titanium hardware. At the time I also had a compound fracture of the same femur resulting in almost three months of traction in the hospital. Since then I fractured the same side pelvis adding ten more titanium plates to secure that. Needless to say I don't even go near airports for fear I'll be jumped by U.S. Air Marshals. jeeze typing all this with one finger sucks! Can I get a qualified, phys therp., nurse, caregiver to tend to me, my apartment, my 16 yr old and my truck??? Oh yes she needs to take dictation. Do people still take dictation? this spell check is going to be busy...



Christopher thanks for your input. I somehow, oddly enough, look forward to and for your postings. I visit the links you advise others of and I read all you write. I respect what you have to offer always.
Thanks,
Scott

Well as funny as I seem to be to you, I am very serious about trying Tizanidine. It works differently than the Soma I do believe, and with the muscle tightness you have in the arm, I got to wonder why the doctors wouldn't try other drugs to get this to improve. You know, doing the same thing day in and day out and getting the same response is non productive. As well, the Elavil has some side affects on the CNS that may not be helpful in your situation.

Let me add something here regarding medical care. A doctor can take a look at you when you have a broken arm and say we can fix that, and then use the traditional drugs to take care of you. But if you fell and hit your head, then you have added head trauma to it. And even though it seems harmless to you and the doctors, it can in fact have an impact on your CNS. I have read through much of my doctor's reports and all dismiss the bang on the head I took in the accident. I believe I have a closed head injury, but no one has assigned any importance to it because I didn't hit the windshield or the steering wheel. But when I was hit I know my head twisted around the edge of the headrest, and I could still feel the soreness on my head the next day. I have had nearly every doctor think this pain, hypertense muscles, and near comatose states I've described as being a product of my mind. It is so much easier for doctors to blow you off than to actually go the extra mile, specially if they have grown accustomed to your bitching. The best thing that happened to me was to see an independent doctor who was open enough to see that I was suffering from a spinal cord (or brainstem) injury by the way I moved and the description of what ailed me. So you may want to actually go to Mayo and in the meantime try the Zanaflex, even if you have to back your doctors into the corner.
See below the actions of the two drugs, and the Elavil. I would encourage anyone taking medications to know intimately what problems can come with them.

Mechanism of Action
Tizanidine is an agonist at α2-adrenergic receptor sites and presumably reduces spasticity by increasing presynaptic inhibition of motor neurons. In animal models, tizanidine has no direct effect on skeletal muscle fibers or the neuromuscular junction, and no major effect on monosynaptic spinal reflexes. The effects of tizanidine are greatest on polysynaptic pathways The overall effect of these actions is thought to reduce facilitation of spinal motor neurons The imidazoline chemical structure of tizanidine is related to that of the anti-hypertensive drug clonidine and other α2-adrenergic agonists. Pharmacological studies in animals show similarities between the two compounds, but tizanidine was found to have one-tenth to one-fiftieth (1/50) of the potency of clonidine in lowering blood pressure



Carisoprodol is a centrally acting skeletal muscle relaxant that does not directly relax tense skeletal muscles in man. The mode of action of carisoprodol in relieving acute muscle spasm of local origin has not been clearly identified, but may be related to its sedative properties. In animals, carisoprodol has been shown to produce muscle relaxation by blocking interneuronal activity and depressing transmission of polysynaptic neurons in the spinal cord and in the descending reticular formation of the brain. The onset of action is rapid and lasts four to six hours

Elavil
CNS and Neuromuscular: Coma; seizures; hallucinations; delusions; confusional states; disorientation; incoordination; ataxia; tremors; peripheral neuropathy; numbness, tingling, and paresthesias of the extremities; extrapyramidal symptoms including abnormal involuntary movements and tardive dyskinesia; dysarthria; disturbed concentration; excitement; anxiety; insomnia; restlessness; nightmares; drowsiness; dizziness; weakness; fatigue; headache; syndrome of inappropriate ADH (antidiuretic hormone) secretion; tinnitus; alteration in EEG patterns.

okay, you got my attention. First things first though...why does/do most everyone I read refer to the Mayo Clinic? I go to my local VA where all the doctors in General Med, screeners, are interns and you won't see the same one twice in a year it seems. To see someone of specialty...well that's like pulling teeth and they are the doctors responsible for leaving me in this state with no follow-up, no reference to other clinics and seemingly no clear prognosis or treatment plan. There really is no one to file a grievance. There is a 'suggestion box' procedure where you take a provided form (not even a gov. reg. form) strike that it is just a preprinted 'tell it to the director' piece of paper. I have tried to get someones attention to no avail. If you say keep trying imagine this, I can barely get my thoughts out here on this board. Honestly as you can imagine, it takes forever to type and read and by the time I'm done literally hours have gone by.

Your description of those meds is amazing. Like Christopher knows so much you do as well. Your desc. of Elavel tells me if I stop that almost everything will disappear. That's great. No more from right now.
Why would they have been giving me that for over a year?
Elavil
CNS and Neuromuscular: Coma; seizures; hallucinations; delusions; confusional states; disorientation; incoordination; ataxia; tremors; peripheral neuropathy; numbness, tingling, and paresthesias of the extremities; extrapyramidal symptoms including abnormal involuntary movements and tardive dyskinesia; dysarthria; disturbed concentration; excitement; anxiety; insomnia; restlessness; nightmares; drowsiness; dizziness; weakness; fatigue; headache;
These are most of my symptoms. I'll let you know come Monday or Tuesday how I've faired. Will that be enough time I wonder? Either way I'll not be taking that any longer.
You made me laugh about the lemon juice, here's one back at ya...I caught myself toasting chocolate chip cookies in the toaster. Smelled so good...
spell check now just to see how horrible I am.
Peace out,
Scott

Scott, before you go cold turkey on the Elavil, call your pharmacy and ask them how to get off it safely. As for why they would give it to you, it was easy, they needed to give you something you know.

As far as pulling info together, I have some great sites saved. I always look at the problems of a new drug when I get it, just to be aware what can come. Amitriptyline was prescribed to me by the doctor who gave me the Zanaflex (Tizanidine) and I knew one of the side affects was tinnitis and so I still take one that night, but the next afternoon I start having a problem with more tinnitis than I already had. It increased like tenfold by early evening, so that was the last time I took it. Was another 2 days before I was back to what could be called 'normal'. This below is a good site for drug info

http://www.rxlist.com/cgi/generic/tizanidine_ids.htm

I go to Southern Illinois University/Memorial Hospital doctors in my town. SIU is a teaching facility and typically you see a resident first who collects info, and then brings the doctor up to speed on what ails you. As for the doctors leaving you in this state, there are good ones and bad ones. I seem to have run into some bad ones as well and that is why I have yet to have a dx after 6.5 months. I suppose I could have started to yell and scream at them but they already seem to think I am a nutter. Get this, I gave a list of my symptoms to several of the doctors and now when reading through the Upper and lower neuron + cranial nerve damage, I think that 90% of what I had going on, pointed to the above. So yeah, I've had doctors ignore me and think I am hysterical. So you're not alone in this Scott.

Wendy,
The drs may very well dismiss the bang on the head as harmless but I don't think it would be because there was no external head trauma. Dustin had a severe head trauma that was due to shaking the brain during the injury. He also had no external signs of the damage from the accident. Drs are aware that a sudden stop at high rates of speed can also cause bruising and sheering in the brain. Sheering is like taking a tupperware full of jello with the lid securely attached and shaking it. From the outside it appears normal, but when opened and inspected closer there are several small cuts or tears through the jello, this also happens to the brain when the skull stops and the brain is still moving. To determine the extent of the injury they have "normal standards" within an age group. So, for instance if before you were injured you could concentrate, read, cook, brush your teeth, work, ect; do "normal care and function for a person in your age group" then the injury is gaged on what you can do post accident. If post accident it is obvious that you have memory problems that would be evident in your care of yourself or other symptoms that would affect your work, say like concentration, ect; then the injury would be outside the norm for your age and deemed severe enough for treatment. But, this treatment is usually limited to getting you back into the "normal standard" for your age group. They cannot open the head and see where the sheering is and thus must rely on what is "normal". The best gage that they have of where or what the extent of the brain injury is, is a neuro-psych test. This test will give an average age or level of where different areas of the brain are functioning. Brains will typically heal the most during the 1st 2 years but may continue after that period. There are exercises that can help to build new paths where old ones have been sheered. However, if the injury is not to the extent that they feel treatment is necessary often every day living can also exercise the brain or learning new things, even playing board games or cards. Often times also the OT that you are working with will be more versed in neuro or musclular injuries. The OT with neuro will work with you if they feel that the injury is related to the head trauma, and when they feel you have overcome or built new pathways they will have you work with an OT that works on strength or muscle. So, it sounds to me that you are functioning, at least mentally, within the "normal standards" that they would expect and that is why they are dismissing it. I am not saying I agree, in fact I don't but I just wanted to tell you what my perception was based on our experience.
Sue