Have You Had A Concussion?

Have You Had A Concussion? | March 30, 2014

In a fraction of a second, head trauma can dramatically change your life.

It can be a boink on the head, a fall, sports activities, or a car accident — among many other possibilities.

And there is the complication of you having a concussion and not realizing it. (Sound familiar?)

Seizures can develop immediately after an injury to your brain or much later on — showing up months or years after the initial trauma.

If you have a mild traumatic brain injury, or concussion, — which usually happens the first week after a head trauma — you’ll be prescribed an anti-epilepsy drug and then your seizure control should be carefully followed.

Or you could experience a short-lived loss of brain function that usually resolves spontaneously.

But even mild to moderate injuries can lead to epilepsy in approximately 15% of adults and about 30% of children.

If yours is a severe head trauma — defined as either loss of consciousness or amnesia for greater than a day or internal bleeding in or around the brain — then a second or third AED may be prescribed and you may have to stay on it indefinitely..

Examples include Phenytoin, Valproate, Phenobarbital, Dilantin, Felmabate and others.

However there’s controversy about the use of anti-epilepsy drugs as a treatment for concussive seizures.

Studies have looked at whether treatment with seizure medicines immediately after a head trauma will prevent epileptic seizures.

There are those who say it does not.

Their argument is that medication simply suppresses seizures while you take them.

Seizures may be easy or hard to control.

It all depends upon the severity and the extent of your head trauma.

The greater the injury, the higher the risk of your developing seizures.

The scary news is that people who have had head trauma are twelve times as likely as the general population to suffer seizures.

Approximately 57% of head injured individuals developed epilepsy within one year of the injury.

30% of all people suffering head trauma developed post-traumatic seizures and 80% of the time they occurred within the first 24 months.

Longer onset epilepsy can begin as many as four years after the trauma occurs for 20% of the people who develop epilepsy.

But sometimes concussive seizures aren’t even “caught” as far out as five years after your head injury.

Even though there are functional changes in how your brain works, often times structural damage can’t be seen on standard imaging tests like CT scan.

So your concussion goes undiagnosed.

But head trauma can cause many problems in addition to seizures.

You could develop migraine headaches, memory and concentration problems, dizziness, mood swings and various other symptoms known as the concussion syndrome.

Even after seemingly minor trauma, these symptoms can persist for months. With more severe head trauma, neurological symptoms sometimes can be permanent.

Sports concussions in children…

While football is king in causing sports head injuries in young athletes, girls’ soccer can proudly boast being in second place, beating out hockey, basketball, and wrestling.

Regardless of the activity, it is estimated that there are more than 300,000 sports-related concussions every year in the U.S., and that number is likely on the low side.

Whether it’s a boy or girl, the number of concussions diagnosed in the past 10 years has increased by more than 50%.

Concussion can be an easy diagnosis when the athlete gets knocked out on the field or is slow to get up, but often, concussions are subtle and even the athlete isn’t aware that the brain has been shaken.

Being unconscious is not a requirement for diagnosis of a concussion, and symptoms can be delayed by many hours from the trauma that has irritated the brain.

The symptoms of a head injury may be as subtle as a child having a hard time concentrating in school, having difficulty with homework, or being more irritable at the dinner table.

Recurrent headaches, dizziness, and lethargy are more easily recognizable by parents or friends.

While the medical literature uses the term minor head injury, there is nothing minor about a brain that has been concussed.

More typical symptoms of a concussion include: nausea, a dazed feeling, irritability, and visual problems.

Many young athletes accept the risk for injury as one of the many challenges of participating in sports.

It’s a game…

Others might be unaware that even a mild bump or blow to the head can be serious.

Although most athletes with a concussion recover quickly and fully, some will have symptoms that last for days, or even weeks.

The effects of a more serious concussion can last for months or longer.

A repeat concussion that occurs before the brain recovers from the first (usually within a short period) can be very dangerous and can slow recovery or increase the chances for long-term problems.

A repeat concussion can even be fatal.

Not exactly cheery news. But as those with epilepsy know, there are no easy answers. Or solutions.

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34 Comments »

Getting a traumatic blunt hit to the head doesn’t start seizures right away. I know a woman that was in a car accident and went head first through her front window. Her seizures started 6 months later. I myself had a traumatic hit to the head and have scarring on the right and left temporal lobe when I was a little kid. My seizures started up when I was 19. My last doctor for epilepsy was world renowned. He told me that when A person get a hit to the head, the seizures won’t start up immediately.

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Comment by Shawn Wittman — March 30, 2014 @ 3:16 PM

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Right Shawn. I read in a journal about a man whose seizures didn’t show up for 12 years. (I’m reading up on Traumatic Brain Injury, and Post Trautamic Stress Disorder for some future articles.)

People have gone 5 years and more without standing on mine fields or having hand grenades lobed at them yet still suffering from serious concussions.

(I guess that’s why they call them “post”.)

But I think the message here is that it’s not a very good practice to just shrugg off concussions — no matter how “untraumatic” they seem.

For every concussion there IS some loss of grey matter in the brain. So, you can do the math.

I wish I had a dollar for every concussion I’ve had. But as someone with epilepsy, I’ve grown to sort them out.
Like when my eyes cross, it’s a biggie! 🙂

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Comment by Phylis Feiner Johnson — March 30, 2014 @ 4:19 PM

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- It makes think back when I was younger and all the whacks to head I took in sports,fights,and car wrecks. If I didnt have epilepsy as a kid, I’d be very suspicious that was the cause of my seizures.
  
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  Comment by charlie — March 30, 2014 @ 9:16 PM
  
  Reply
If anybody had whacks to their head, it certainly was YOU, Charlie.

Good thing you didn’t have to sort them out. 🙂

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Comment by Phylis Feiner Johnson — March 31, 2014 @ 11:15 AM

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Here is something i’ve wondered, can concussions lead to a brain tumor? I had many concussions, one when i was 6 yrs old, fell out of the side door of the truck my mom was driving onto my head. Once got pushed off a bike falling onto my head causing concussion. And one other times as well. None of them caused me to have seizures, but the brain tumor removal did.

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Comment by Zolt — April 1, 2014 @ 7:20 PM

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“A single concussion may cause lasting structural damage to the brain, according to a new study published online in the journal Radiology.”

http://www.sciencedaily.com/releases/2013/03/130312092642.htm

However, my friend Sally had seizures, which were a sign of a brain tumor. After (not expected) extensive brain surgery, she still has seizures from time to time, but it’ a result of traumatic brain injury from the surgery.

Some times you just can’t win. 😦

You might be interested in “A Fallen Football Hero”

https://epilepsytalk.com/2012/12/05/a-fallen-football-hero/

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Comment by Phylis Feiner Johnson — April 2, 2014 @ 10:43 AM

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Interesting article on the atrophy of the brain where the injury occurred after 1 yrs time. Wonder if that can eventually turn into a tumor given time. How big was Sally’s tumor? Mine was baseball size on the parietal lobe. Docs told me there wasn’t any better place in the skull for such a big tumor. 🙂 I have the surgeons surgery report and it said in doctors language that they had a hard time in places removing the tumor from the surface of the brain, that is where i’m assuming my seizures originate. They mentioned 3 times in the report that even though an embolization was done on the blood vessels leading to the tumor, a lot of blood was lost. 1 liter worth of blood to be exact.

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Comment by Zolt — April 2, 2014 @ 5:08 PM

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With Sally, it was a “little benign” tumor and they said they’d have it out in a jiff and she’d be back to work in six weeks.

Wrong.

Once they got in there, the tumor was like an octopus, with tentacles reaching out in every direction.

They tried not to touch the speech or cognitive areas, but they were semi successful. And Sally was left with traumatic brain damage.

She truly believed (in spite of her horrible status) that this couldn’t be avoided. Even though the tumor was “benign”, it was very aggressive, spreading at a heady pace. Eventually, it would take over her entire brain.

And believe me, she did her homework, researching her condition and docs, choosing one of the best neurosurgery groups in the country. (The Langone Epilepsy Center at NYU.) The very same place where Charlie’s epilepsy surgery was a success, leaving him still seizure free.

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Comment by Phylis Feiner Johnson — April 3, 2014 @ 12:21 PM

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Yicks, hate does damn tentacles.

I’m happy she made it through ok. I had no time to research.

I was lucky mine was big, but in a good place and no tentacles that i know of. Just like here, location location location is the key. They were able to take all of mine out and to the naked eye nothing remained, although the surgeon warned me that on the microscopic level some could survive. Thats why the yearly MRIs. So far no return, knock on wood!!

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Comment by Zolt — April 4, 2014 @ 5:54 PM

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Yeah, they took all of Sally’s out too and left her with Traumatic Brain Injury. (Almost brainless as far as function goes.)

But she’s the most brilliant and perservering person I know.

She re-learned executive cognitive functions, like how to talk again, read, write and now heads both an Epilepsy Support Group and a TBI group.

A truly amazing lady.

She’s like the Phoenix Rising.

And I’ve been lucky enough to witness most of it. And proudly call her my friend.

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Comment by Phylis Feiner Johnson — April 4, 2014 @ 6:15 PM

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I’m working on reading every book I ever read prior to head injury–fell down my stairs and bonked the back of my head with my front door knob. Recently, I’m having problems with my right eye getting out of whack from reading too much. Seeing Eye doctor–M.D., not the eyeglass purveyor (sp?) I used to be able to spell ANYTHING (won prizes for it) now I have to use the computer to get the words right. With Zonisamide (they should pay me for this) I have had no seizures since 12/5/14 (this is a BIG deal!) But I’m thinking I may have to buy large print books, although the hub bought me a Kindle Fire and I can adjust it to large print by touching the screen with my fingers. So now I’ll have to buy large print e books. What a mess. Oh Phylis, I want to go to epilepsy camp with the kids–and I think I am up for volunteer work—but my local hospital is the one that screwed me by not even carrying the medicine I needed to be whole. Maybe I can take a bottle TO them so there is not the 30 hour wait to get my own meds to them, without putting me into a coma–yes, COMA–not comma–appears I should have been a copy editor in my past life too. Now, I have to proof this!
(it was not good–is there a spell checker in this medium?)

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Comment by meesher — May 15, 2014 @ 9:00 PM

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- Looks like you and I are in the same boat. I was diagnosed idiopathic. Then when they did the 18 hour long surgery they saw that I had A LOT of scarring on the right temporal lobe, so they did the lobectomy. They said I got it from a traumatic blow to the head. They just don’t know if it was from child birth, or when I was playing Football at 8 years old. But now I have a hard time remembering how to spell at times. and when I’m reading things aren’t going right. But I heard that can be because of the medication, or the RNS that I have now. Also just because of seizures, my life came to a screeching halt.
  
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  Comment by Shawn Wittman — May 15, 2014 @ 10:30 PM
  
  Reply
  - Oh Shawn, how horrible. Why did they do surgery for idiopathic epilepsy?
    
    Anyway, as for spelling, I’ve given up trying to get it right. Explanations are useless. So now I use excuses.
    
    I blame my lame spelling on my meds. It might even be true! 🙂
    
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    Comment by Phylis Feiner Johnson — May 16, 2014 @ 10:30 AM
  - The surgeries I’ve had were a Right temporal lobectomy, a VNS, removal of scarring from the nerve because of the VNS, and now the Responsive Neurostimulator (RNS) That’s a computer chip under the scalp, and the wires from it are implanted into the brain where the seizure are starting at. That it does a in depth scanning of the brain. Then when it detect any abnormal electrical activity it does a deep brain stimulation. It was recently approved by the FDA, and I was in the medical research study to get it approved. It’s helped me a moderate amount.
    When I can’t remember how something is spelled, I look it up in the dictionary, and do my best to remember it.
    
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    Comment by Shawn Wittman — May 16, 2014 @ 5:50 PM
  - Shawn, have you tried Trigeminal Nerve Stimulation?
    
    TNS vs. VNS – NO SURGERY!
    
    https://epilepsytalk.com/2013/04/01/tns-vs-vns-no-surgery/
    
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    Comment by Phylis Feiner Johnson — May 16, 2014 @ 6:04 PM
  - Nope
    
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    Comment by Shawn Wittman — May 16, 2014 @ 6:11 PM
Meesher, you’re on a roll! I would kiss the stars if this program had spell check, if the WORLD had spell check. (Am I spelling it right?)

Don’t feel bad. I applied to be a counselor at our epilepsy camp and I was rejected. So be careful of what you wish for!

And hey, the beauty of ebooks is that they can be whatever you want them to be — size wise.

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Comment by Phylis Feiner Johnson — May 16, 2014 @ 10:24 AM

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i had my EEG today.. the tech says it looked good…. right… as for a concussion.. I think Ive fallen more times now.. im surprised i haven’t got a concussion. As for memory i can’t remember alot of things in the past 4 years since they started… i hate it… its like i have alztimers… anyone else feel like this?? im just turning 40…

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Comment by laura — March 12, 2015 @ 7:58 PM

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Laura, I wish I had a dollar for every time I’ve fallen, concussion or not.

Some concussions have been bad and some pretty mild.

What can you do? The docs tell you to rest. Meanwhile my eyeballs were zooming and I couldn’t even see straight.

So rest is prescribed. Along with having someone wake you every few hours to make sure you’re still here.

Very encouraging. Memory loss or not.

Grrrr…

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Comment by Phylis Feiner Johnson — March 12, 2015 @ 8:13 PM

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http://www.softprotectivehelmets.com is a great resource for protective headgear for children and adults with various types of special needs.

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Comment by Heather Shapiro — August 12, 2015 @ 4:16 PM

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Thanks for the link Heather!

You might want to also look at:

New! Helmets for Your Health

New! Helmets for Your Health

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Comment by Phylis Feiner Johnson — August 12, 2015 @ 5:18 PM

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I am 53 and have had epilepsy my whole life. My first seizure was in a swimming pool. Fortunately, I was talking with my coach and he pulled me out. Since then I have had many seizures in many settings. One was on a bike where I fell over and knocked my two front teeth out. No concussion was ever checked at that time, in the early 70’s. In 2007, I had a seizure outside coaching football, 2009 at my desk, and was found wondering around the church. In 20011 I had my last one at the bankers office. Since 2007, I have had memory issues and have been agitated. I was put on some poor medication, wound up suicidal for some time and have returned to Dilantin. This drug has been very good for me. I continue to have memory issues, and only a couple months ago made the decision to look into what is going on. I have not found any information on whether seizures, particularly in adults, can end up bringing on concussion like symptoms. I have had some testing and have more coming up. Any insight would be great.

Blessings to you,
Steve

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Comment by Steve — October 12, 2016 @ 10:59 AM

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Steve, do you think the seizure caused a concussion in the swimming pool or the other way around? (Since during the trauma, you were probably not completely coherent.)

How about the bike incident adding insult to injury?

I would guess that the traumas involved contributed to your seizures. Especially since you were never tested.

Take a look at this article and see if it’s of any help:

Traumatic Brain Injury and Epilepsy

https://epilepsytalk.com/2014/04/13/traumatic-brain-injury-and-epilepsy/

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Comment by Phylis Feiner Johnson — October 12, 2016 @ 11:12 AM

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I was in middle school when i had a hard colision with a telephone pole, knocking me out. At age 14 I started to show signs of epilepsy.
With many drugs and seizures later I found out that I had a golf ball sized cyct in my brain. Which was worse medication or surgury. I opted for surgury I was told it had a high success. Only after surgery did I find out they were unable to remove it all due to interlacing nero matter. I still suffered memory loss and many other problems.
Now over 25 years later I still take 6 meds daily, still have up to 3 or more seizures a month with new seizures found it could be more like 3 or more a week. The good thing is apox. 95% happen at night when i sleep and are only noticed on a EEG.
So back to head trauma and early detection. Yes, if i would have gone to a hospital after hitting the pole. Yes, if I would have been wearing proper safety equipment. Yes, if my early neuro team would have seen the cyst or other problem and not 15years later.
I have gone to medical school worked in the ER and several other areas. I always recomend a epitoligist if you have epilepsy as they specilize in that area. I wish i would have gone to one first. Thank goodness that all the sports are finaly seeing head trauma as a issue.

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Comment by Scott figved — October 22, 2016 @ 7:19 PM

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Well Scott, I guess it’s some solace that working in the medical profession, you can advise people what they should do, before they go through what you did.

I’m so sorry, you had to go through all that you have suffered.

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Comment by Phylis Feiner Johnson — October 23, 2016 @ 9:24 AM

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Yes hit by car age 6yrs , Epilepsy came on age 10 yrs old. Gradually got worse as years went on. Age 48 now and still getting Epileptic Seizures on 12 Tablets aday.
Some mild..some Heavier.

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Comment by Andrew Beech — December 4, 2017 @ 2:39 AM

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- And did anything ever happen to the driver? Or were you the sole victim?
  
  What kind of seizures do you have? Are they “under control” with your (12) meds?
  
  Have you considered a VNS?
  
  Vagus Nerve Stimulation…Is it for YOU?
  
  https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/
  
  Or an RNS?
  
  Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures
  
  https://epilepsytalk.com/2017/01/12/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/
  
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  Comment by Phylis Feiner Johnson — December 4, 2017 @ 8:46 AM
  
  Reply
Back in 1981, I was in 4th grade at a private school. They had my class practice for an Easter program in their church. The whole class was on a stand, and I was on the bottom row. All of a I heard a noise behind me, turned my head, and half of the class fell down on top of me. That made the Left side of my head slam down on the church floor, knocking me unconscious. Two of the kids on the top row had slipped, turning half the class into a bunch of dominoes. I don’t know how long I was unconscious, but when I came to, and all of my senses were “back on line”, it felt like little bolts of lightening were going from one side of my brain to the other. The school was too afraid to call my Mom, who got her nursing degree at the Cleveland Clinic and has an interest in Neurology, but they let her keep me home the following day. That following morning was when I had my first Simple Partial seizure, but didn’t know what in the world was going on, except a “weird” feeling. I never have been able to clearly describe them, but they kept on happening for months, and then one morning I had my first Complex Partial seizure. A lot of medications have been tried with either no, or just 50% success. I had a Left Temporal Lobe Lobectomy done at the Mayo Clinic, with just 50% success. A VNS was tried, but had to be removed because the second battery messed up the computer chip. Right now, I’m waiting to hear if I might be tested for one of those LASER Ablation operations at Johns Hopkins.

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Comment by David Jensen — August 14, 2018 @ 11:42 AM

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- Have you considered RNS?
  
  Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures
  
  https://epilepsytalk.com/2017/01/12/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/
  
  If not, good luck and heartfelt wishes for your success with the Laser Ablation.
  
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  Comment by Phylis Feiner Johnson — August 14, 2018 @ 11:47 AM
  
  Reply
Reblogged this on Karen's mixed up mind.

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Comment by karebear1967 — August 14, 2018 @ 12:27 PM

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I sustained a TBI in a motorcycle accident in 1972. I was unconscious for 72 hours. I have no memory of the first month. My first tonic chlonic seizure occured in 1986. The Neurologist treating me told my Dad I’d probably have Epilepsy. With what we know today it wasn’t probable it was a certainty. Because I had so many broken bones nothing was done to treat the TBI in 1972. If that accident occurred today I’m sure the TBI would be treated.

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Comment by Paul Elliott — August 15, 2018 @ 9:51 AM

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- Sad that the sign of those times was such ignorance. 😦
  
  What was that doctor thinking? “Probably”? He couldn’t have treated you then?
  
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  Comment by Phylis Feiner Johnson — August 15, 2018 @ 10:12 AM
  
  Reply
I don’t know if my head injury would be classified as a concussion:
Knocked unconscious
All of my senses slowly came back on line
A bump in front of my Left Ear, that felt like a
hundred needles had been stuck in my head
Actually “Feeling” little “Bolts of Lightening”
going back and forth from my Left to Right
Temporal Lobes
Having my first Simple Partial seizure, the next
morning
When I had my Left Temporal Lobe Lobectomy
done at the Mayo Clinic, the neurosurgeon
discovered that my Left Temporal Lobe had
stopped developing, and a small portion of
the scar line had gone up into my Left Frontal
Lobe. The neurosurgeon who did the Cranial
Reconstruction, told my parents that if I
hadn’t had the surgery done, that there was
so much pressure on my Left Temporal, that I
would of had a stroke in less than a year.
There’s also been a little ringing sound
sometimes my Left or Right Ears.
I guess it’s easy for me to think about medical issues, because my Dad was a Doctor, and my Mom is a retired Nurse, who just happens to have a Keen Interest in Neurology.
I’ve just wondered about that, all these years, and no neurologist has ever mentioned it.

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Comment by David Jensen — October 31, 2018 @ 1:07 PM

Reply
- This may be a long shot David, but could it be Tinnitus?
  
  “Epilepsy and tinnitus are both caused by overly excitable nerve cells. Healthy nerves have a built-in system that slams on the brakes when they get too excited. But in some people this braking system doesn’t work, and the nerves run amok, signaling so much that the brain gets overloaded and has a seizure (epilepsy) or hears phantom ringing (tinnitus). About 65 million people worldwide are affected by epilepsy. The numbers on tinnitus are not as clear-cut, but the American Tinnitus Association estimates 2 million people have tinnitus so disabling they have trouble functioning in daily life.” https://today.uconn.edu/2015/06/quiet-that-ringing-in-the-brain/#
  
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  Comment by Phylis Feiner Johnson — October 31, 2018 @ 11:55 PM
  
  Reply

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Getting a traumatic blunt hit to the head doesn’t start seizures right away. I know a woman that was in a car accident and went head first through her front window. Her seizures started 6 months later. I myself had a traumatic hit to the head and have scarring on the right and left temporal lobe when I was a little kid. My seizures started up when I was 19. My last doctor for epilepsy was world renowned. He told me that when A person get a hit to the head, the seizures won’t start up immediately.

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Comment by Shawn Wittman — March 30, 2014 @ 3:16 PM

Right Shawn. I read in a journal about a man whose seizures didn’t show up for 12 years. (I’m reading up on Traumatic Brain Injury, and Post Trautamic Stress Disorder for some future articles.)

People have gone 5 years and more without standing on mine fields or having hand grenades lobed at them yet still suffering from serious concussions.

(I guess that’s why they call them “post”.)

But I think the message here is that it’s not a very good practice to just shrugg off concussions — no matter how “untraumatic” they seem.

For every concussion there IS some loss of grey matter in the brain. So, you can do the math.

I wish I had a dollar for every concussion I’ve had. But as someone with epilepsy, I’ve grown to sort them out.
Like when my eyes cross, it’s a biggie! 🙂

Comment by Phylis Feiner Johnson — March 30, 2014 @ 4:19 PM

It makes think back when I was younger and all the whacks to head I took in sports,fights,and car wrecks. If I didnt have epilepsy as a kid, I’d be very suspicious that was the cause of my seizures.

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Comment by charlie — March 30, 2014 @ 9:16 PM

If anybody had whacks to their head, it certainly was YOU, Charlie.

Good thing you didn’t have to sort them out. 🙂

Comment by Phylis Feiner Johnson — March 31, 2014 @ 11:15 AM

Here is something i’ve wondered, can concussions lead to a brain tumor? I had many concussions, one when i was 6 yrs old, fell out of the side door of the truck my mom was driving onto my head. Once got pushed off a bike falling onto my head causing concussion. And one other times as well. None of them caused me to have seizures, but the brain tumor removal did.

Comment by Zolt — April 1, 2014 @ 7:20 PM

“A single concussion may cause lasting structural damage to the brain, according to a new study published online in the journal Radiology.”

http://www.sciencedaily.com/releases/2013/03/130312092642.htm

However, my friend Sally had seizures, which were a sign of a brain tumor. After (not expected) extensive brain surgery, she still has seizures from time to time, but it’ a result of traumatic brain injury from the surgery.

Some times you just can’t win. 😦

You might be interested in “A Fallen Football Hero”

https://epilepsytalk.com/2012/12/05/a-fallen-football-hero/

Comment by Phylis Feiner Johnson — April 2, 2014 @ 10:43 AM

Interesting article on the atrophy of the brain where the injury occurred after 1 yrs time. Wonder if that can eventually turn into a tumor given time. How big was Sally’s tumor? Mine was baseball size on the parietal lobe. Docs told me there wasn’t any better place in the skull for such a big tumor. 🙂 I have the surgeons surgery report and it said in doctors language that they had a hard time in places removing the tumor from the surface of the brain, that is where i’m assuming my seizures originate. They mentioned 3 times in the report that even though an embolization was done on the blood vessels leading to the tumor, a lot of blood was lost. 1 liter worth of blood to be exact.

Comment by Zolt — April 2, 2014 @ 5:08 PM

With Sally, it was a “little benign” tumor and they said they’d have it out in a jiff and she’d be back to work in six weeks.

Wrong.

Once they got in there, the tumor was like an octopus, with tentacles reaching out in every direction.

They tried not to touch the speech or cognitive areas, but they were semi successful. And Sally was left with traumatic brain damage.

She truly believed (in spite of her horrible status) that this couldn’t be avoided. Even though the tumor was “benign”, it was very aggressive, spreading at a heady pace. Eventually, it would take over her entire brain.

And believe me, she did her homework, researching her condition and docs, choosing one of the best neurosurgery groups in the country. (The Langone Epilepsy Center at NYU.) The very same place where Charlie’s epilepsy surgery was a success, leaving him still seizure free.

Comment by Phylis Feiner Johnson — April 3, 2014 @ 12:21 PM

Yicks, hate does damn tentacles.

I’m happy she made it through ok. I had no time to research.

I was lucky mine was big, but in a good place and no tentacles that i know of. Just like here, location location location is the key. They were able to take all of mine out and to the naked eye nothing remained, although the surgeon warned me that on the microscopic level some could survive. Thats why the yearly MRIs. So far no return, knock on wood!!

Comment by Zolt — April 4, 2014 @ 5:54 PM

Yeah, they took all of Sally’s out too and left her with Traumatic Brain Injury. (Almost brainless as far as function goes.)

But she’s the most brilliant and perservering person I know.

She re-learned executive cognitive functions, like how to talk again, read, write and now heads both an Epilepsy Support Group and a TBI group.

A truly amazing lady.

She’s like the Phoenix Rising.

And I’ve been lucky enough to witness most of it. And proudly call her my friend.

Comment by Phylis Feiner Johnson — April 4, 2014 @ 6:15 PM

I’m working on reading every book I ever read prior to head injury–fell down my stairs and bonked the back of my head with my front door knob. Recently, I’m having problems with my right eye getting out of whack from reading too much. Seeing Eye doctor–M.D., not the eyeglass purveyor (sp?) I used to be able to spell ANYTHING (won prizes for it) now I have to use the computer to get the words right. With Zonisamide (they should pay me for this) I have had no seizures since 12/5/14 (this is a BIG deal!) But I’m thinking I may have to buy large print books, although the hub bought me a Kindle Fire and I can adjust it to large print by touching the screen with my fingers. So now I’ll have to buy large print e books. What a mess. Oh Phylis, I want to go to epilepsy camp with the kids–and I think I am up for volunteer work—but my local hospital is the one that screwed me by not even carrying the medicine I needed to be whole. Maybe I can take a bottle TO them so there is not the 30 hour wait to get my own meds to them, without putting me into a coma–yes, COMA–not comma–appears I should have been a copy editor in my past life too. Now, I have to proof this!
(it was not good–is there a spell checker in this medium?)

Comment by meesher — May 15, 2014 @ 9:00 PM

Looks like you and I are in the same boat. I was diagnosed idiopathic. Then when they did the 18 hour long surgery they saw that I had A LOT of scarring on the right temporal lobe, so they did the lobectomy. They said I got it from a traumatic blow to the head. They just don’t know if it was from child birth, or when I was playing Football at 8 years old. But now I have a hard time remembering how to spell at times. and when I’m reading things aren’t going right. But I heard that can be because of the medication, or the RNS that I have now. Also just because of seizures, my life came to a screeching halt.

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Comment by Shawn Wittman — May 15, 2014 @ 10:30 PM

- Oh Shawn, how horrible. Why did they do surgery for idiopathic epilepsy?
  
  Anyway, as for spelling, I’ve given up trying to get it right. Explanations are useless. So now I use excuses.
  
  I blame my lame spelling on my meds. It might even be true! 🙂
  
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  Comment by Phylis Feiner Johnson — May 16, 2014 @ 10:30 AM
- The surgeries I’ve had were a Right temporal lobectomy, a VNS, removal of scarring from the nerve because of the VNS, and now the Responsive Neurostimulator (RNS) That’s a computer chip under the scalp, and the wires from it are implanted into the brain where the seizure are starting at. That it does a in depth scanning of the brain. Then when it detect any abnormal electrical activity it does a deep brain stimulation. It was recently approved by the FDA, and I was in the medical research study to get it approved. It’s helped me a moderate amount.
  When I can’t remember how something is spelled, I look it up in the dictionary, and do my best to remember it.
  
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  Comment by Shawn Wittman — May 16, 2014 @ 5:50 PM
- Shawn, have you tried Trigeminal Nerve Stimulation?
  
  TNS vs. VNS – NO SURGERY!
  
  https://epilepsytalk.com/2013/04/01/tns-vs-vns-no-surgery/
  
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  Comment by Phylis Feiner Johnson — May 16, 2014 @ 6:04 PM
- Nope
  
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  Comment by Shawn Wittman — May 16, 2014 @ 6:11 PM

Meesher, you’re on a roll! I would kiss the stars if this program had spell check, if the WORLD had spell check. (Am I spelling it right?)

Don’t feel bad. I applied to be a counselor at our epilepsy camp and I was rejected. So be careful of what you wish for!

And hey, the beauty of ebooks is that they can be whatever you want them to be — size wise.

Comment by Phylis Feiner Johnson — May 16, 2014 @ 10:24 AM

i had my EEG today.. the tech says it looked good…. right… as for a concussion.. I think Ive fallen more times now.. im surprised i haven’t got a concussion. As for memory i can’t remember alot of things in the past 4 years since they started… i hate it… its like i have alztimers… anyone else feel like this?? im just turning 40…

Comment by laura — March 12, 2015 @ 7:58 PM

Laura, I wish I had a dollar for every time I’ve fallen, concussion or not.

Some concussions have been bad and some pretty mild.

What can you do? The docs tell you to rest. Meanwhile my eyeballs were zooming and I couldn’t even see straight.

So rest is prescribed. Along with having someone wake you every few hours to make sure you’re still here.

Very encouraging. Memory loss or not.

Grrrr…

Comment by Phylis Feiner Johnson — March 12, 2015 @ 8:13 PM

http://www.softprotectivehelmets.com is a great resource for protective headgear for children and adults with various types of special needs.

Comment by Heather Shapiro — August 12, 2015 @ 4:16 PM

Thanks for the link Heather!

You might want to also look at:

New! Helmets for Your Health

Comment by Phylis Feiner Johnson — August 12, 2015 @ 5:18 PM

I am 53 and have had epilepsy my whole life. My first seizure was in a swimming pool. Fortunately, I was talking with my coach and he pulled me out. Since then I have had many seizures in many settings. One was on a bike where I fell over and knocked my two front teeth out. No concussion was ever checked at that time, in the early 70’s. In 2007, I had a seizure outside coaching football, 2009 at my desk, and was found wondering around the church. In 20011 I had my last one at the bankers office. Since 2007, I have had memory issues and have been agitated. I was put on some poor medication, wound up suicidal for some time and have returned to Dilantin. This drug has been very good for me. I continue to have memory issues, and only a couple months ago made the decision to look into what is going on. I have not found any information on whether seizures, particularly in adults, can end up bringing on concussion like symptoms. I have had some testing and have more coming up. Any insight would be great.

Blessings to you,
Steve

Comment by Steve — October 12, 2016 @ 10:59 AM

Steve, do you think the seizure caused a concussion in the swimming pool or the other way around? (Since during the trauma, you were probably not completely coherent.)

How about the bike incident adding insult to injury?

I would guess that the traumas involved contributed to your seizures. Especially since you were never tested.

Take a look at this article and see if it’s of any help:

Traumatic Brain Injury and Epilepsy

https://epilepsytalk.com/2014/04/13/traumatic-brain-injury-and-epilepsy/

Comment by Phylis Feiner Johnson — October 12, 2016 @ 11:12 AM

I was in middle school when i had a hard colision with a telephone pole, knocking me out. At age 14 I started to show signs of epilepsy.
With many drugs and seizures later I found out that I had a golf ball sized cyct in my brain. Which was worse medication or surgury. I opted for surgury I was told it had a high success. Only after surgery did I find out they were unable to remove it all due to interlacing nero matter. I still suffered memory loss and many other problems.
Now over 25 years later I still take 6 meds daily, still have up to 3 or more seizures a month with new seizures found it could be more like 3 or more a week. The good thing is apox. 95% happen at night when i sleep and are only noticed on a EEG.
So back to head trauma and early detection. Yes, if i would have gone to a hospital after hitting the pole. Yes, if I would have been wearing proper safety equipment. Yes, if my early neuro team would have seen the cyst or other problem and not 15years later.
I have gone to medical school worked in the ER and several other areas. I always recomend a epitoligist if you have epilepsy as they specilize in that area. I wish i would have gone to one first. Thank goodness that all the sports are finaly seeing head trauma as a issue.

Comment by Scott figved — October 22, 2016 @ 7:19 PM

Well Scott, I guess it’s some solace that working in the medical profession, you can advise people what they should do, before they go through what you did.

I’m so sorry, you had to go through all that you have suffered.

Comment by Phylis Feiner Johnson — October 23, 2016 @ 9:24 AM

Yes hit by car age 6yrs , Epilepsy came on age 10 yrs old. Gradually got worse as years went on. Age 48 now and still getting Epileptic Seizures on 12 Tablets aday.
Some mild..some Heavier.

Comment by Andrew Beech — December 4, 2017 @ 2:39 AM

And did anything ever happen to the driver? Or were you the sole victim?

What kind of seizures do you have? Are they “under control” with your (12) meds?

Have you considered a VNS?

Vagus Nerve Stimulation…Is it for YOU?

https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/

Or an RNS?

Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures

https://epilepsytalk.com/2017/01/12/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/

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Comment by Phylis Feiner Johnson — December 4, 2017 @ 8:46 AM

Back in 1981, I was in 4th grade at a private school. They had my class practice for an Easter program in their church. The whole class was on a stand, and I was on the bottom row. All of a I heard a noise behind me, turned my head, and half of the class fell down on top of me. That made the Left side of my head slam down on the church floor, knocking me unconscious. Two of the kids on the top row had slipped, turning half the class into a bunch of dominoes. I don’t know how long I was unconscious, but when I came to, and all of my senses were “back on line”, it felt like little bolts of lightening were going from one side of my brain to the other. The school was too afraid to call my Mom, who got her nursing degree at the Cleveland Clinic and has an interest in Neurology, but they let her keep me home the following day. That following morning was when I had my first Simple Partial seizure, but didn’t know what in the world was going on, except a “weird” feeling. I never have been able to clearly describe them, but they kept on happening for months, and then one morning I had my first Complex Partial seizure. A lot of medications have been tried with either no, or just 50% success. I had a Left Temporal Lobe Lobectomy done at the Mayo Clinic, with just 50% success. A VNS was tried, but had to be removed because the second battery messed up the computer chip. Right now, I’m waiting to hear if I might be tested for one of those LASER Ablation operations at Johns Hopkins.

Comment by David Jensen — August 14, 2018 @ 11:42 AM

Have you considered RNS?

Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures

https://epilepsytalk.com/2017/01/12/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures/

If not, good luck and heartfelt wishes for your success with the Laser Ablation.

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Comment by Phylis Feiner Johnson — August 14, 2018 @ 11:47 AM

Reblogged this on Karen's mixed up mind.

Comment by karebear1967 — August 14, 2018 @ 12:27 PM

I sustained a TBI in a motorcycle accident in 1972. I was unconscious for 72 hours. I have no memory of the first month. My first tonic chlonic seizure occured in 1986. The Neurologist treating me told my Dad I’d probably have Epilepsy. With what we know today it wasn’t probable it was a certainty. Because I had so many broken bones nothing was done to treat the TBI in 1972. If that accident occurred today I’m sure the TBI would be treated.

Comment by Paul Elliott — August 15, 2018 @ 9:51 AM

Sad that the sign of those times was such ignorance. 😦

What was that doctor thinking? “Probably”? He couldn’t have treated you then?

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Comment by Phylis Feiner Johnson — August 15, 2018 @ 10:12 AM

I don’t know if my head injury would be classified as a concussion:
Knocked unconscious
All of my senses slowly came back on line
A bump in front of my Left Ear, that felt like a
hundred needles had been stuck in my head
Actually “Feeling” little “Bolts of Lightening”
going back and forth from my Left to Right
Temporal Lobes
Having my first Simple Partial seizure, the next
morning
When I had my Left Temporal Lobe Lobectomy
done at the Mayo Clinic, the neurosurgeon
discovered that my Left Temporal Lobe had
stopped developing, and a small portion of
the scar line had gone up into my Left Frontal
Lobe. The neurosurgeon who did the Cranial
Reconstruction, told my parents that if I
hadn’t had the surgery done, that there was
so much pressure on my Left Temporal, that I
would of had a stroke in less than a year.
There’s also been a little ringing sound
sometimes my Left or Right Ears.
I guess it’s easy for me to think about medical issues, because my Dad was a Doctor, and my Mom is a retired Nurse, who just happens to have a Keen Interest in Neurology.
I’ve just wondered about that, all these years, and no neurologist has ever mentioned it.

Comment by David Jensen — October 31, 2018 @ 1:07 PM

This may be a long shot David, but could it be Tinnitus?

“Epilepsy and tinnitus are both caused by overly excitable nerve cells. Healthy nerves have a built-in system that slams on the brakes when they get too excited. But in some people this braking system doesn’t work, and the nerves run amok, signaling so much that the brain gets overloaded and has a seizure (epilepsy) or hears phantom ringing (tinnitus). About 65 million people worldwide are affected by epilepsy. The numbers on tinnitus are not as clear-cut, but the American Tinnitus Association estimates 2 million people have tinnitus so disabling they have trouble functioning in daily life.” https://today.uconn.edu/2015/06/quiet-that-ringing-in-the-brain/#

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Comment by Phylis Feiner Johnson — October 31, 2018 @ 11:55 PM

Epilepsy Talk