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?

Wow, what a story. Very hard to read without some paragraph spacings.

I would be concerned about your pituitary and other hormone regulating systems. Sounds like they are all out of whack. mhr4 has posted about hormone tests. The fast heart beat is likely hormone related. Too bad the hospital did not do a hormone assessment while you were having symptoms.

What kind of hormone blood panels and saliva tests have you had?

Find a neuro-endocrinologist. An upper cervical chiropractor would also be a good direction to pursue. Check out www.nucca.org to find a chiropractor who practices this discipline.

Get a three ring binder and start collecting all of your medical records. You need to see what has been written about you in the past.

I would also suggest checking out www.tbilaw.com. I would not discount hiring a lawyer for the second accident. Second Impact Syndrome and Multiple Impact Syndrome can be life changing. You need to protect yourself if this second impact has changed your life.

Start a daily journal listing all of your activities, the food you eat, how you feel emotionally and how you function physically and mentally.

Go to www.tbiguide.com, download and print out his TBI Survival Guide. It is fabulous.

As difficult as it is, try to relax. Lower you environmental stress levels, noise, chaos, etc. These are all likely triggers for your hormone dysfunctions.

Let us know what is happening. Please, use some paragraph spacing. We brain injured often have a difficult time with visual tracking. I had to do some tricks to make you post readable. When paragraphs are limited to 4 to 6 lines, it is much easier to find the start of the next line.

My best to you.

Wow! Thank you Mark, I really appreciate the information. Sorry about my poor format. I should have been more thoughtful about that.

I don't think I've had any hormone or saliva tests done, I will ask my Dr. about that. Thank you. I have read some of your other posts and I really appreciate you sharing your wisdom and experience like that. I can't wait to really sit down and take some time going over those links you sent me. I should have tried to educate myslef better sooner.

I thought that because I didn't have any bleeding in my brain or any skull fractures or anything that there was no injury, or at least that I should be fully recovered by now.

I have been seeing a chiropractor for my neck, twice a week now since my accident in March and I guess it's helping but Tuesday we decided I could come on an "as needed" basis.

Thank you again for your info and links, I had been advised to hire an attorney but I didn't think it was necessary. Perhaps I am wrong. I am so glad I found this site; seems I have MUCH to learn!

JulieC,

Sorry you've had such a rough time. Glad you found this forum, it is a wonderful source of information and support. Mark gave you great advice, I'm sure others will be along and add more. My injury was about 7 months ago and I'm slowly improving. Don't give up hope even when it seems like things aren't getting better. I've learned to look at my progress in terms of months not days or weeks.

I'm glad you have good insurance, that sure helps. Echoing Mark, you have to be your own advocate, even the good doctors don't know everything and this stuff can be quite complicated. The tbi guide Mark mentioned is great to share with your family so they can understand more of what you're dealing with and how to support you. My husband is very supportive and helpful but sometimes he still doesn't get it, that's where this forum is so great, people here really understand.

Sounds like you're a mom with kids, so am I. I know how hard it is to slow down and let some things go but you'll recover better if you do all you can to decrease the demands on yourself, avoid stress, get good nutrition (there are some great posts on supplements), and rest as much as you can.

Take care,

Becca

Thanks, Becca! Your words spoke directly to my heart; I am a stay-at-home-mom and I am still homeschooling my youngest. I am having a hard time letting some things go, still feeling like the house needs to be immaculate (you know, since I "don't work" lol) and I still want to carry on as usual with my home and church responsibilities. I have a hard time saying "no" and because I carry a smile all the time everyone assumes I'm just fine so I end up adding more to my plate.

Thank you for that gentle reminder.......I really do need to slow down. This forum has already blessed me tremendously and I think I'm finally realizing that it's okay to say "I'm not okay."

So glad to be of any help, I feel so useless most of the time, it's nice to be able to do something. Thank goodness for wireless internet and a laptop! I homeschool also, this past school year has been very basic (I was injured at the end of last September) but we're keeping the core subjects covered, they just aren't getting all the extras I had planned. Oh well, I've had several people remind me that it is a good chance for my kids to serve and help me and learn to be compassionate to people who struggle. I mostly try to pretend I can't see my very non-immaculate house! Hard for me but necessary right now. My sweet husband tries so hard, but he still has to go to work and takes on the kids when he's home so I can rest in a quiet place. Mark, Vini and others refer to this as an "invisible injury" and it is so true, it is okay to let people know what's going on, most are very kind and understanding. Take care and hang in there! :-)

Becca, may I ask about your injury?
We have also been focusing on the core subjects.....I have a bookshelf full of good intentions! What a positive point about teaching the kids service and compassion! We're always teaching them something- whether we know it or not!
Thanks again, Becca! Hope you have a great weekend- we finally have some beautiful 75 degree weather here in Ohio. Being outside with my chickens and goats is almost therapeutic (if I could learn to just SIT there with them instead of doing chores-lol!)

Becca and juliec,

Kudos to you for homeschooling your children. They have an awesome opportunity to learn as they observe your struggles. Even though you have school work to direct, I believe you are ahead of the game by not having kids who come in the door from a public school with all of its chaos.

My three kids all finished high school at home. Took the CHSPE and graduated early. All are successful adults.

Have you downloaded Dr Johnson's TBI guide? www.tbiguide.comThere is lots of good information in it that you can share with your kids. As they understand the divine design of the human body, especially the brain, they will be way ahead of the game.

My best to you both.

Yes, Mark the tbiguide is incredible!!! Thank you again for sharing that information. I have been reading it slowly- there is so much to absorb! Great idea to use it as a Health lesson!

Surely the Lord has brought me to this place! What a blessing to hear such encouraging words from both of you who have/are homeschooling; it's challenging enough without an injury!!!

No doubt the homeschooling is challenging, especially with a brain injury. At one point I wondered if it would be easier to just put them in school this year but ended up deciding it would be more work to shift everything around and we're surviving. Mark, nice to hear your kids are successful adults, isn't that what all parents want for their kids, homeschooled or not! :-)

My injury, well, it's a little embarrassing because it was careless and self-inflicted. I was trying to finish up a project in the back of my house, it was dark, I was in a hurry, thought I was clear of a deck, straightened up really hard into a beam. I was knocked silly but not unconscious. My husband was out of town so I just went to bed (pretty dumb in retrospect). This was my 5th concussion (the others were when I was a teenager from sports and incidents with cars) and I figured I'd be fine in a couple of days, so I didn't go to the doctor initially. I finally went to the doctor after 10 days and they diagnosed me with PCS. That was almost 7 months ago. Hard to believe this has gone on so long, who would've thought?