Does Putting A Name to Something Give IT Less Power?

I somehow believe it does! It feels like I have a connection with whoever has suffered with this problem before!
Action Myoclonus with Generalized Dystonia! I think I will stick to calling "it" the Herky-Jerkys!
FM

Whinny Log ....

Jan 2007
Happy Birthday to me...

According to my DR's PA, I should keep a diary or something. This will have to be my something.

I am finally sleeping in a regular bed again,thank God, I was really tired of sleeping in the sitting up, at all, much less on the sofa sitting up! I can walk around pretty good with a walker, but I can't scoot around too much. I still have to wear the brace, mostly because it hurts a lot more without it. I am trying really hard to stay off the pain pills because they interfere with too many "other" body functions that I really don't like messing with! Besides, they don't really do shyt for the "electrical" levels nor the spastic pain! Why bother! I still feel pretty jerky and unsteady most of the time. I fall on a pretty regular schedule, but I am learning to catch myself, one bruise at a time. I am still numb from the top of my ribs to my toes on the whole right side, and I do mean EVERYWHERE! Half of EVERYTHING! The spasms are what seems to be getting to me the most, they are sometimes REALLY frequent and very bizarre. It is like a tuning fork as it reverberates through my body, slowly decreasing in intensity and severity, like an extremely painful orgasm! Once it subsides, I am physically exhausted and the muscles burn as if liquid fire is pouring through my body!

I spent the Holiday Season down at my daughters house. This was my first visit since my surgery. I was okay, but I had a couple of the worst spastic "seizure" things you can ever believe. One lasted for over 40 minutes. It is like I am being electrocuted or something. I feel like those people look when they are being tasored in those police videos. It starts over the least little thing and/or even without anything provoking it. Just sitting too long in one spot can start one up. My Grandchildren call it the "Herky Jerkys"!

The "hallway" incident began as I was getting dressed to go out somewhere. I stood in the bathroom with my grand daughter helping me wash my hair in the bathroom sink. A simple thing you may think, but as the "electricity" began to increase in "volume", like someone turning up the stereo, I tried to hurry and finish to get away from the sink. I couldn't make it, and soon I was shaking and jerking so bad I could not stand any longer and was becoming unable to hold myself up, it took everything we had to get me the 2 feet over to the hallway area. At least there was carpeting on the floor and my head was between the sink and the toilet! I laid there, mostly naked, shaking violently and jerking so hard I broke a tooth. It lasted for over 40 minutes, then it took another 20 before I could get up and with the aid of my daughter, make it to the bed to fall out for another hour!
Other than that, the only other bad incident, was on the Amtrak, they wanted to call an ambulance! Damn!

My Neck Story

Around the middle of September I injured myself working on my daughters vehicle. It was not too serious (at the time) I chalked it up to a strain, since I do not have insurance I was resolute to just tough it out, I thought eventually it would get better. I was convinced that at 47 and just too overweight to work that hard was reason enough to feel self-abused! After a couple of weeks there was a great deal of worsening and I finally had to admit I needed to see a doctor. My friend JC took me into the local clinic, paid for the visit and then stayed with me throughout. I explained with as great a deal as possible what had happened as well as all of my symptoms, which were just around moderate at this point. I had numbness on my right side from about my mid rib cage all the way to my toes, infrequent but severe spasms and contractions in my left arm, abdomen and legs, frequent shooting pain (like electricity running up and down my entire right side) and was experiencing a real problem with bladder control. The doctor at the clinic did a light examination and then prescribed me pain medication and told me to return in a couple of weeks if there was no improvement. I expressed my fear at that time, that this may not be the case since after over two weeks, I had only gotten worse and he assured me that it was only some bruising around my ribs and that it would dissipate soon.

Approximately a week later, with still worsening symptoms, more spasms, less bladder control and even more numbness and barely able to walk, my friend JC took me to see her personal Chiropractor, Dr K. After an initial verbal examination and explanation of my symptoms, Dr. K told me she could not do anything at all for me and that I should return to the clinic or even go to the emergency room as soon as possible because she believed that I had suffered a spinal injury and was in grave danger. She wrote a note on the back of one of her business cards and said I could give it to them in case they were interested in her findings.

Because I am basically unemployed with little to no income, this now had become a question of even having the $25 it costs to go to the clinic. I was torn between the first doctors assurances that this would go away on it’s own and thinking just maybe, maybe, Dr. K was being a little bit of an alarmist as well. It was then just a matter of a couple more days before I could not bear the symptoms and pain any longer, so I called the clinic and explained to them that I was experiencing a severe worsening of all my symptoms, what Dr. K had said and that I needed to be seen right away. The person on the phone consulted with another staff person and then told me I should go to the emergency room to seek help.

When I arrived at the emergency room I described my symptoms, as well as what Dr K had said, I tried to hand her (the intake person) the card Dr K had written a note on and the she wouldn’t even take the card from me, she just waved it away saying it didn’t matter what she had said and that the doctor would have to see me to determine a diagnosis. Again, I then tried to show the ER Dr. the card from Dr. K and was waved away with it. I explained in as great a deal of detail as possible to the ER Dr. what the initial injury was, what the first doctor had said and the extensive list of symptoms that I was now barely able to endure. I was completely numb on my right side from the armpit to my toes and across my abdomen, my left leg was having contractions, constant contractions of my left hand and arm (forming a “claw”) and uncontrollably painful spasms from the abdomen through out my legs. I was also EXTREMELY concerned of the fact that my bowel movements had almost nearly ceased and that I had NEVER experienced any bowel problems, ever, in my whole life! He ordered a cat scan and some x-rays, extensive blood work and administered some anti spasm medication. Apparently, because he (the ER doctor) believed I had suffered a stroke, he didn’t (?) order any views of my neck, so when the stroke idea didn’t pan out he was just ready to get rid of me. He was even joking about it with my BF and made a pun (?) about the rocks rolling around in my head being the only thing that showed up on the pictures! So then, after spending over 8 hours in the ER, I was sent home with some more pain pills and a recommendation to return to the clinic to schedule for an MRI within a couple of days. It was a Friday.

Over the following weekend I continued to worsen, even coughing up bloody sputum. I called the clinic on Monday to get an appointment. I was told the next appointment was over a week away; I was becoming despondent and tried to convey to them the severity of how bad off I was, when they again declared I should return to the ER. I was beginning to feel very desperate and feared nobody was believing me! I decided to go to a different hospital in hopes of getting someone to hear me out. Then at the (B) hospital, I had the distinct feeling that the fact that I was a refugee from the (A) "other" hospital in town had made me immediately suspicious (?) or as if I were trying to be subversive somehow (?). I was once again given pain medication, then was assured that the “other” ER had acted appropriately and was told to return to the clinic and ask them to schedule an MRI and a nerve induction test as soon as possible. My first question now, in hind site is, did anyone look at the x-rays taken? Then of course, second in hind site, in reviewing hospital (B) paperwork, I couldn’t help but notice on my release papers, on the line that says “ Patients Name_____, they had only written “unemployed” instead of my name! Is that not special?

I tried to call the clinic for an appointment the next day and was told either to schedule an appointment for the following week or call back again the next day to see if there was an opening. I was now wracked with pain, numbness, spasms, weakness, constant contractions, no bowel movements at all, was coughing up blood, was wearing diapers and could barely even hold myself upright. I was in tears and so despondent I was barely able control my mental state by now. The woman took pity and said to just walk in the next day and I could be seen by whatever doctor would be on staff.

The next day at the clinic, I was informed that I would be seeing Dr. JF; this made me feel a little relieved because I knew her. She had been my personal Doctor when I had insurance coverage from a previous employer a few years earlier. I was sure she would at least listen to me!

When Dr. JF entered the room she said “Hello, what can we do for you today?” to wit I said, “ Oh please, something, anything, I’m just really messed up here!” I then started rattling off some of my dire symptoms when she suddenly cut me off with ” whoa, whoa, whoa, wait, wait! We can’t fix everything here, you’ll just have to pick ONE wrong thing here, just give me one thing we can concentrate on, something we can work on right now! This was said in a very sharp and ugly tone of voice, which really took me by surprise, so I tried to quickly just spit it all out, how severe my symtoms were, how long it had been going on and how the ER had told me to return to the clinic to schedule an MRI. She slammed her pencil down on the counter as she turned and looked at me with a look of sheer disgust on her face and in a sickening tone of voice she seethed, “Do you have any insurance or coverage of any kind?" I said “no, I just got my Medi-Cal package and I am trying to get it completed and turned in as soon as I could,” she then raised her voice to a scathing level, with obvious contempt, she spewed out the words” Why in the world should I order a whole series of expensive tests and procedures, knowing full well that you don’t have any way to pay for anything</em>?” I was shocked and I just started crying and begging her to please help me somehow. She was VERY obvious in her voice as well as her mannerisms that she was thoroughly disgusted by me as she yelled at me to at least get up onto the exam table so she could look at me. I tried really hard to get up on the table, she wouldn’t even offer me her hand, but I struggled to the point of sobbing tears of agony and still was unable to even lift my leg, much less STEP UP onto the footpad. I was crying as she was berating me with “ c’mon get up there, at least TRY!” She was audibly sighing, rolling her eyes around and throwing her hands up in the air in an exaggerated way as she said ”How am I supposed to look at you if you won’t even get up on the table?" I was terrified she was about to send me away without even looking at me, so I shuffled to the side of the table and just launched myself like a walrus up onto the table sideways. I thought I was going to black out from the pain it was so excruciating!

After she began examining me, she then began to change in her mannerisms as well as her tone of voice, and by the time she left the room to make a phone call, she had definitely started believing I wasn’t faking (?) or whatever (?) my (her?) problems were. When she returned she told me that I would have to go back to the emergency room to be examined by another doctor again! At this time she then expressed her concern of my ability to drive and requested a taxi to take me to the ER.

This time, at the ER, I was seen quite timely and they were fairly quick at putting me through an MRI. As I was wheeled away from the MRI building, the technician (?) whispered to me, “Don’t worry dear, they found it this time. It is in your neck and they can see it pretty clearly. They’ll be fixing you up this time for sure! ”I was so overjoyed I started crying because finally, someone was going to believe me!

As the surgical team gathered, they would come by and speak to me, asking me numerous questions and taking various tests. At one point the surgeon came in and introduced herself and her PA and asked if I minded a “going over” for the benefit of a learning experience. It was during this exam I heard them discussing this and that about my symptoms and the main characteristic of this discussion seemed to focus on the aspect that mine was a TEXT BOOK example of this type of spinal injury. This was actually the second time someone had said this, the first to express this to me was DR K, the chiropractor that had written the note on the back of her card! Almost two weeks earlier! If this was such a "TEXT BOOK" case why did the other doctors fail to look for (at) this? Was it because I couldn’t pay for it?

When the surgeon came to speak to me about the severity of my condition, and the proceedures ahead, I remember asking her if she was going to be able to fix me, could she make me better again? She leaned in close and looked me right in the eye and in a very clear voice and with specific meaning, she said “I’m going to do the best I can, but truthfully, at this point we can only hope that we can stop it from getting worse”! She told me then, that it was a very real possibility that I could become permanently paralyzed from the neck down! She told us it should only take a couple of hours or so, but she had no idea what was ahead! I was wheeled into the O.R. around 9 PM and was not out until around 4 AM. The Dr. had to remove 3 vertebrae and disks and replace the whole shebang with a titanium cage, this was then filled with some of my own bone dust to fill it all in! What a recipe huh? Sounds freakishly artistic really, like me in so many ways! Ultimately, as reputation has it, Dr P is absolutely the best neurosurgeon in all the lands! Hooray! Grand praise for the guardians of my light! Because of her miraculus hands, I now have hope of a life ahead!

I am still learning what may return little by little. At this point I feel victorious of having what I do. I now know I was on the edge of loosing everything and that is pretty damn scary! I have what is surely permanent numbness from my right armpit to my toes on the right side of my body, that is numb on the outside! On the INSIDE it is an ongoing electrical storm that NEVER ends! EVER! 24 hours a day it is there, zinging away! Like when you sit on your butt too long and stand up, at first it feels awkward and apart from you, but the intense "electrical" feeling is exactly what I have going on! You know that "Don't touch me" feeling? Forever! The only thing that allows me to remain sane without committing suicide is that the "voltage" is not always cranked up. Most of the time it stays down around 2-3, I can actually get around pretty good then, or sleep at night even! But if it cranks up... well then...

My left arm has regained some use, but it is also still very numb and tingly and painful contractions start with very little provocation. My left leg is partially numb and spasms easily. It is a real struggle to DO much of anything. I am frequently wracked with convulsive spasms that travel up and down my whole body. I am only able to walk simply because I am able to balance, but I struggle to get my “signals” to my legs most of the time. Both legs and arms have varying degrees of pain, numbness and or weakness, and are in a constant state of “electrical” spasms. I can’t even brush my own hair right now, in fact, I am facing the reality that I will have to cut it because I cannot keep relying on friends and family to brush it and braid it constantly! So my waist length locks, over 15 years of growth, is about to go away for good. I’ll never be able to take care of it the same again!

My question at this point really is, how much did I loose permanately because of the ignorant, prejudiced treatment I recieved?! No answer really, but......r>
SUCKS BAD!

Update:
Turns out, (Neurosurgeon)Dr.P. says that the bursting of and subsequent collapsing of vertebrae in my neck was likely due to a prior injury! There was significant build up of the muscles and tendons that showed they had been making up for the breech for a long time! The pulling of the wires with the Ford were merely the straw that broke the camels back, or rather in this case was the strain that broke the camels NECK! Had I been in a car accident over that last few years? NO. The only time I had any type of injury incident was a nasty fall I had off the bus, while I was a driver for the bus company, that was in 2000-01 or so. I slipped on the steps because there was snow and ice slushing around everywhere. I originally landed with my head and arm wedged in betwen the handicap rail and the stairwell. As fellow drivers rushed to my aid, they pried me loose and then I fell out onto the ground. I was off work for awhile but they were persistent that I take light duty to return to work as soon as possible. I actually believed it was my shoulder that was mostly injured at first, but after a couple of weeks I began to realize that my neck was hurting also. I tried to complain, they even took x-rays, but ultimately I was phoo-phood away over it. In fact, The very same Dr. that was so mean to mean at the clinic, Dr.JF, was the last Dr. I had seen as my private physician and tried to get her to look at my neck problem. She assured me that this was simply due to fibromyalgia attacking the area. She had the same suggestion as the other Dr., go back to work now!

I have had constant trouble ever since then with my neck being a constant concern, going into severe pain mode sometimes for days at a time, at times unable to even move my neck at all. My arms hurt and went numb constantly, rendering me unable to do any kind of "manual" work at all. I was an upholsterer by trade prior to the bus gig, but I haven't been able to do any upholstery work or even sewing anything that required me to push or pull with my arms. I have even lost time at work in a managerial position because of these "attacks". I have been just dealing with this all along because of Dr.JF telling me this was fibromyalgia and I would just have to live with it!

AGAIN "SUCKS BAD"!

So rumor has it that there is a limitation on how long I have to claim a work injury so I will probably just have to eat Doo-Doo over the whole dang thing too!
Cut my hair all off, donated it to the wig people for cancer kids! They said it was the longest donation they ever cut off at once! Made me feel better anyway!

Still sux...