Hi everyone,

I was at a church event on Monday, and one of the kids in the youth group pulled a chair out while I was going to sit down as a joke. I landed on my tailbone and the impact shot all the way up through my neck. After I landed I don't remember anything until I woke up in the ambulance, I'm told 45 minutes later.

I was followed around by a neurologist the entire time I was in the ER- weird right!?!?!? He even accompanied me up to CT and MRI and back down to my bay. My husband filled him into my situation and he seemed very interested in the case. All my scans were clear. My EEG was clear, and everything came up normal.

I was cleared by cardio, ortho, and general med, and neuro stayed with me. It was so bizarre, but of course i'm not complaining. He suggested that I had a seizure when I hit the ground and the impact could have caused it. He thinks my initial concussion could have caused a permanent or temporary case of epilepsy.

They are going to admit me for a seizure study that will last anywhere between 24 hours to 4 days. I will be on a constant EEG monitor for that time with a camera on me.

Neuro thinks this is another symptom of my PCS, but may account for my hand twitching, my staring episodes, and this recent being "out" for 45 min. If this is the case, maybe there is some medication or procedure that could fix this! Wouldn't that be nice?

I'm grateful that I have learned some new and important information about my PCS. If this episode was necessary to get some medical answers, I'll take it. The doctors are also pretty confident that this was not a setback for me either, which is a tremendous blessing!

I am also having some episodes of tachycardia that they saw on the telemetry monitors while I was in for these past 5 days. I am going for a tilt table test on Tuesday morning before I see my neuro to schedule the seizure study.

I'll keep you guys posted! I don't know why I'm excited, I guess figuring out anything is exciting....

Kate,

I feel for you. What a horrible way to get the doctors to pay attention to your needs.

Maybe now is a good time for someone to discuss the risks associated with concussion with the kids at church. This could be a great learning opportunity for them. Kids tend to think injuries are temporary.

If you ever consider doing an informational bit with the people at church, I can give you some statistics and other simple ideas. It only takes about ten minutes to properly inform kids and their parents of the risks of head injury.

Your seizure study sounds like a great opportunity for understanding. Could they also include some sleep study parameters? Sleep issues are so common with MTBI. I tend to seize just as I start to fall asleep and possible as I transition from the different stages of sleep.

I sleep in my recliner when my wife HAS to get a good night's sleep. Wednesday night, she figures she got three hours of sleep between my mini-seizures. So, last night, I slept in my recliner.

btw, My life changing injury was from a step off a curb and landing with my knee locked. I was carrying a large garbage back out in front of me and had my back arched for balance. The 8 inch drop injured my left hip/pelvis, back, ribs, shoulder, neck and the base of my skull, plus a minor concussion. My life has not been the same since.

My best to you.

Kate:

Good luck with the seizure study. My daughter had the same test and since she didn't experience one of her episodes spontaneously, they induced it artificially by depriving her of sleep and exposing her to flashing lights. It was determined that she did not suffer from a seizure disorder.

HOWEVER, be careful as we went through another mini-nightmare since the default diagnosis for a non-seizure diagnosis at this particular institution is conversion disorder, a psychiatric condition where emotional issues are manifested in somatic disorders. (We had already considered this several months prior to the test and had her evaluated by 2 psychiatrists, who said she was one of the healthiest adolescents they'd ever met.) Anyway, thank goodness my husband is a pychiatrist and after some effort dispelled them of any notions that this is what was going on. Heck, they almost had ME convinced.

If your results turn out to be positive, then that would certainly be a reassuring breakthrough into understanding what is going on and is treatable. But if it turns out that they are not seizures, consider carefully what the experts offer as their diagnosis. The truth is, as I know from our experience and what I've read over the years on Neurotalk, there is rarely any objective medical test that can diagnose PCS. It's frustrating for doctors because, as a rule, they like concrete evidence and if it's not there then it's hard to substantiate. That leaves them at a loss, feeling powerless and therefore questioning the validity of the patient's complaints.

I don't mean to get all preachy here, and I have nothing against docs (I'm happily married to one and some of our best friends are MDs ;-). It's just that PCS is very hard for them to get a handle on. That's why this forum was so crucial in terms of maintaining my sanity; it validated for us that what she was going through was real and experienced by countless others.

By the way, one test that my daughter took that's supposed to measure brain function is called the IMPACT test. It's done on line. Ideally, the baseline should be taken while still healthy (like to all high school or college athletes before the season begins) and then again if and when they experience a concussion. Since she didn't do the IMPACT until after her concussions, the first one served as the baseline to which to compare subsequent tests. I don't know how useful this was, however, because even while we saw improvement in her concentraion and focus, the later tests didn't reflect this.

Whew! That's a load off my chest. I hope you and others find this helpful.

By the way, since you probably want to know, our daughter has been symptom-free for almost a year now, after almost 3 years of hell. She's a high school senior, just turned 18 and is looking forward to her college career. I'm so pleased to report a happy ending.

God bless.

Hi Kate,

I'm sorry about your accident. I hope that this is a case of God working in mysterious ways and that it leads to better understanding and treatment.

As Mark says, it's unfortunate that sometimes we TBI folks only get attention when we tickle someone's curiosity. I am so much a guinea pig in my new cognitive therapy that I can barely resist the urge to run in a big metal wheel. Still, I'll take whatever help I can get, whatever way it comes.

However, as PCSMom said, you stil need to have a healthy skepticism about what the doctors may say.

Good Luck

Wow! Thanks Guys!

Mark,

Thanks for the idea of giving a talk about head injuries. We do goof off a fair amount at church and most of the time, I had been known to act like more of a kid than those kids do. I don't think I ever really told them that I can't be like that anymore, and a good talk about head injuries in general would be informative for them.

The seizure study will go on for anywhere between 24 hours and 4 days. I'm not sure exactly what they will be looking at or for. I'll definately let you know when I go for my appt on Tuesday.

PCS Mom,

I know what you mean about conversion disorder, they tried giving me that dx a few months ago, only to find- like your daughter, that I'm psychologically healthy. They rested back on PCS, and now think the initial hit 4 months ago has caused some sort of epilepsy. We'll see after this study, I guess.

I have read about the IMPACT test as well, and a local university here has some sort of study doing something like that. I am trying to get involved in it. I have yet to recieve an answer. I'll keep you posted.

I'm really happy that your daughter is doing well. Normalcy is something I crave all too often. She's really lucky to have 2 parents who love and support her.

Hockey,

Yeah... I guess I don't mind being a lab rat, or guinea pig as you so nicely put it. ;-) I am also willing to take help wherever I can get it. The neuro at the hospital said that the epilepsy could be permanent and if it is, I really want to get help for it.

I'll know more after Tuesday, so I'll keep everyone up to date. Thanks for all the good words and advice!

Kate

I really think if you are diagnosed or even given a medicine to see if it helps for the epilepsy or maybe epilepsy. That you will see a big difference.

My son cases are good examples. One of them was probably a case of
PCS, and the other isn't. But the one that is has recovered and is in
remission of epilepsy very much. Leading a very normal life without
medication again.

He is doing very good. And is a senior in college now. After dropping out
of high school before going on medication.

Donna

Hi All,

I saw my neuro this morning, and it went pretty well. My hand started twitching as soon as he got in the room and he noticed it before I even said anything. He felt my arm as it was moving and was pretty confident it was myoclonus or fasciculations resulting from the head injury.

I really have a lot of faith in my neuro, and even though he was pretty sure, he ordered an EEG right on the spot, and moved me up to the EEG monitoring floor and got me hooked up. I see him again on Friday to go over those results and see if he wants to do the prolonged seizure study.

His dx on this latest incident is that the fall caused enough of a jog in my brain for it to be another concussion. He wants to rule out the seizure first, but is pretty certain that it's the 2nd impact.

I also had the tilt-table test and was told by the rhythm cardiologist that my heart is healthy. I'm thrilled to have things being ruled out and to be going through the steps to lead me back to PCS.

It sounds crazy, but it feels good for me to have a more difinitive dx. I feel like I've developed an even greater trust for my neuro.

I'm still having all my PCS symptoms and they have increased since this fall, but it's better than new scary symptoms being unrelated. Does that make any sense?

Kate,

What a blessing to be symptomatic in front of your neuro. That can make all of the difference.

If you are going to talk to the youth, let me know and I will put together some information for you. There is some information that is specifically relevant to adolescents and their parents.

I lived through concussion induced seizures at 16 years old. Since then, my study has found many issues of importance to adolescents.

My neuro refused to call it epilepsy. He did not want to get me stigmatized by writing epilepsy in my medical record. He just called it trauma induced seizure disorder.

Time to go take my daily dose of Neurontin, my seizure med of choice.

My best to you.

Yes Kate, I think I can understand that it feels better to have a diagnosis. The frustration and anxiety of not knowing is a common theme throughout the forum. I am so happy for you that you've found a neurologist who is skilled, concerned and compassionate.

Do you think he would make a housecall to Canada?

Thinking good thoughts for you.

Mark,
Yes, HUGE blessing to be symptomatic in front of him. I would love it if you wanted to put together some info for me. I don't want to stress you about it at all, but if you are up for it- yes please.
It's funny you mention that about epilepsy, because the standard EEG they do is so not what triggers my starting and what not. The hand, the staring, they usually happen when I'm not overstimulated. I guess it's when I'm tired or have overdone it, but it's after the fact, not during.
My neuro was saying that the common triggers for epilepsy can be different from the common triggers for people like us.

Hockey,
Thanks for your understanding. I thank the good Lord every day for this neuro I have. I'm so sorry to all of you who don't have a good one. Canada's not too far from Buffalo! Maybe, you'd want to take a trip down here..... ;-)