Hello! My name is Julie, I am 36 years old, I have been blessed with excellent health all my life- no broken bones, stitches, disease, etc. This year has been different. On December 31st of 2009, I took my kids sled-riding and had a sledding accident. I went to the nearby hospital and was transported by ambulance to the Trauma Center at a different hospital. I guess everything checked out fine (MRI, CT Scan) so they put me in a step-down unit to watch for brain swelling (?) All the while I was having these "shaking episodes" that I was told was just "shock." They continued and were very troubling to me- more than the pain I was experiencing because they caused other physical symptoms (arm numbness, faintness) but they were repeatedly dismissed because they "were not seizures because I was concious." (As if that meant anything to me at that time-lol) Anyway, that first night I had one of these "episodes" that resulted in cardiac arrest that required CPR. I was sent to the ICU for testing on my heart- which showed that my heart was in perfect health. There was no explanation for this event, and each doctor seemed to have a different "diagnosis" for me....which just resulted in much confusion since noone really cared to listen to me about these "episodes" -which continued the whole week that I was in the hospital (with "nothing wrong with me," by the way.) The episodes did get less frequent, but then I developed a "tic" and was very exciteable? as if I had drank ten cups of coffee....,I remember all of my senses seemed so heightend I couldn't even put food in my mouth becaus ethe sensation caused a shaking "episode." Event he blanket touching the bottom of my foot would send me shuddering. One night, my nurse found my heart monitoring beeping and came in to see what was going on, she said i was deep asleep so she started to go back and noticed my heart rate went dangerously high so she came back in and I was having an "episode" which she relayed to the Dr. the next day. Finally, they asked me about them (it's like they didn't believe me before (?) and I was sent for another MRI which came back normal. An EEG was done and it was inconclusive due to "drug effect." Of which I had none that day but whatever.... I was sent home thinking there was nothing wrong with me but I felt like crap! My head and neck hurt and I had all sorts of "issues" with memory and still having the "episodes." I wanted to see my family doctor of 16 years becuase I now developed a trust issue...one doctor at the hospital had me convinced these things were not real (maybe I had anxiety, maybe I already had the tics and never noticed) so I saw my Dr. who showed me the MRI report which showed several disc bulges (C3, C4, C5) and a disc herniation at the C6-7 level which was causing significant stenosis. (Whatever that means and why didn;t they address this in the hospital or at least tell me that my neck pain had a valid reason!) She sent me to a neurosurgeon who put me in PT and eventually a chiropractor. I also got a cortisone injection which really helped. The only thing my hospital discharge papers said was "closed head injury."
I was feeling better through February and even the memory and headaches and balance issues were improving......then on March 25th someone ran a stop sign and slammed into my car. I guess I hit my head pretty hard again because I lost consciousness and when inthe ambulance I kept telling them I had been "sled riding" ( I guess I was confused) I was taken to the local ER and another CT scasn was done and I was stapled up, doped up and sent home. That night was absolutely horriffic! It was the worst headache of my life that never let up and I was too sick to reach for a pain pill. My husband was deep asleep and I didn't even have sense enough to wake him up for help. I got very sick and was dry-heaving and couldn;'t wait till mornig so I could get help. My husband took me back to the Er where I was doped up again and given some IV fluids and sent home.
I am still waiting to see a neurologist, which i will go on Monday. My symptoms are actually getting worse....I have all these weird things going on and I don't know which things pertain to the accidnets and what is coincidence. From my first accident, when I was still in the hospital I had some vaginal bleeding (I wasn;t due for a period) but I didn;t tell anyone and eventually I guess it was a period and I have been having one about every two weeks since then. I cannot tolerate the cold-if I get a little chill it gives me an "episode" and after the episodes I am so out of it- my husband says he'll ask me questions and I just mumble incoherently. I burn everything I try to cook and cannot follow a simple recipe. I can't concentrate or remember things. My personality isn't the same....I am now a "hothead" and I have little patience. My neck and head hurt all the time and lately I can hardly get out of bed because i'm so tired. AND...I can't pee well anymore. It just trickles out and I have trouble emptying my bladder. I did have a UTI after the second acccident because I held my pee when they had me on that board for five hours straight. When they let me up to pee it wouldn't come easily and since then the problem has remained even with a round of antibiotics. There's no infection now.
My family Dr. sent me to a neuropsychiatrst who found no underlying anxiety, depression, or excessive stress.....he believes all my problems are neurological and dismissed me to the neurologist. He thinks it's Post Concussion Syndrome" and he doesn;t even need to see me again- which made me feel better because now I know I'm not crazy or causing these symptoms somehow myself.
I'm afraid that if I tell the neurologist all these things he is just going to think I am a complainer or exaggerator and dismiss me. It seems like if you don't fit their little cookie-cutter mold of how you are expected to be then it's your fault...I guess maybe I'm looking for answers that may never come. I am trying to educate myself a little more and am thankful for this site. Fortunatley, I have good insurance and I am not interested in hiring an attorney (for the second accident that wasn;t my fault) I just want to get better and live a normal life.........I just smile and tell everyone I'm fine because "I look great!" But I don't think anyone understands (even my dear family) how this feels.
My Dr. set me up with the same neurologist I had seen in the hospital fom my first accident since he had some history on me I guess; but I waited one month for that appointment and they called and cancelled me an hour before the appt. They told me to reschedule and when I tried I couldn;t even get an answr. Left a message and after three days they never called back so I called them to reschedule- they were rude and seemed very bothered to help me but I got another appt. three weeks later. I asjked my Dr. for a differnet neurologist and I have an appt. Monday with the new one. Maybe it's better since the old one never helped me anyway. This new Dr. is seventy years old so he definitely has some experience! Can anyone tell me how to make the most of this appointment? How do I know what things are important to tell him and what things don't matter?