My 10 year old slid into the boards during a hockey game and has now been diagnosed with PCS. We've gone from a regional ER to a neurologist at Children's Hospital in Boston, consulting with our pediatrician in between. Everything I'm reading is quite scary. We've been assured he'll make a 100% recovery both cognitively and physically, but now I'm wondering how they can know that. Nancy, you mentioned a great physician out of Concord, MA. We have been quite dissatisfied with the lack of support offered, even upon repeated requests, for help with integrating back to school (which is the #1 recommendation) as well as managing the daily headaches. The phone number to the Children's Hospital Neurologist on-call is really only helpful in a crisis situation. We've been told that our son is not a candidate for the Neuro-clinic at CH. I'm thinking now that I need to get on the phone tomorrow and find a neurologist who specializes in concussions. I wonder what your experience has been. Both my husband and I are starting to feel desperate. Today was just day 2 back at school, which ended with the worst headache thus far. We too have talked with the teachers and he's basically doing "what he can" for now. Best of luck to your son.

If Nancy doesn't locate this thread here we have a newer room
called the post concussion syndrome and Traumatic Brain Injury room
that she comes into some. Here job keeps here very busy.

So you could post this there too.

I would copy and paste but don't know how.

Donna

Spudbro...

I did a quick scan through on your 2 threads.

Brief background then a couple of thoughts for your consideration.

I have a now 6 yo that suffered brain damage from the vaccines. He didn't have to. We received poor advice from a Neuro that didn't believe it was the vaccine that caused the prolonged seizures and told us to continue. We did, he was hurt, we sued the government and won. 4 treating Docs and 1 judge later, we all are now in agreement that it was the vaccine.

YOU ONLY GET ONE CHANCE WITH YOUR CHILD!

Next up, my hubby fell on the ice on our driveway and had a concussion. He wasn't unconcious. He didn't break anything. He didn't require therapies of any kind.

He DID have a prolonged migraine that lasted 8 months. He said it was on continual migraine for the first 6 months then started to tapper. With activity, the migraine got worse.

He was very happy when the migraines started to diminish. They were still there but not as frequent and not as severe.

Then, 8 months after the 1st concussion, he was loading things int he trunk of a rental car when the trunk fell on his head and hit him. It didn't seem like that bad of a hit. I was there. It would have given me a headache. But, it gave him ANOTHER concussion. ?????

We had him seen as he was dizzy, nauseated, and just generally not acting right.

I asked the ER Doc about it as the hit wasn't even close to the fall on the drive.

Doc said that the brain takes an incredibly long time to heal. Each time the head gets hit it takes less to reinjure the brain than the previous time.

ER Doc said with each reinjury, you run the risk of permanent brain damage, coma, or death.

I have seen enough and talked to enough Docs and people with neuro damage from injury that I completely trust what that Doc said.

It has been 6 and a half years since that second concussion. DH STILL gets migraines. He had one today. He gets them about once a month now. That first concussion the migraines started waning after 8 months. With the second concussion, they didn't start to let up for TWO years!!!!

I know your daughter wants to play soccer. I know it is important to her. But how important is it REALLY for her to play?

Is it worth her life? Is it worth permanent damage? I am taking coma, death, vegatative state as the worst case scenario. Best case could be permanent migraines, permanent loss of some of her body functions.

You are SUPPOSED to use your head to bounce balls in soccer.

I am missing the entire point here. Be mad if you want. I likely won't come back over here to see what you said in response.

Donna, you can tell me if I need to come back for any further conversation.

I see my wonderful, beautiful son that almost died because I didn't STOP doing something that hurt him (aka vaccinating him). I don't want to see someone else hurt from continuing an activity that has such a high risk for further injury.

You only get one chance with your daughter.

A question for you to ponder.

Let's say you allow her to talk the docs into clearing her for soccer.

She gets another hit on the head and

Dies - Can you live with yourself?

Coma - Can you live with yourself?

Vegetative state - Can you live with yourself?

Permanent speech disability - Can you live with yourself?

Permanent cognitive disability - Can you live with yourself?

How important is it for her to play soccer? Can you live with the consequences?

Be mad at me if you want but I am not the one that will have to look in the mirror or live between your ears when you try to sleep at night with my words burning in your brain.

What can you live with? Your daughter may be mad at you but she will be alive and improving. She will get over it and may even one day thank you and understand.

Beck,
Y'know, I've been back & forth with this. When I played (way back in the 70's & 80's) if you got "dinged" you just kinda waited until the dizzy went away then went back in and played. And it was a fairly regular occurance (football). Now the docs treat getting "dinged" (docs HATE that word!) as a potentially serious injury, which they should.

My daughter knows there are risks. Potentially BIG risks. She has been in consultation with one of the top sports-specific neurologists in the country. We are lucky to have access to him in our neck of the woods. He acknowledges that there are doctors who would NEVER clear an athlete who has had such a serious injury to play again. This doc (affiliated with UPMC, a leading authority in this type of injury) looks at each case on an individual basis. He has taken a very pragmatic approach to my daughter's injury. Baby steps, from NO activity to one class a day at school, then two, now three. He now has her doing "light" activity. At every step, if ANY symptoms come back, she is to "step back" to her previous activity level until she is again asymptomatic for two weeks. It is working, but it's a long process.

Is my daughter ever going to get back "between the pipes" again (she's a goalkeeper)? I don't know. But what I do know is that every step of recovery gets us closer to the answer to that question. It is sort of inevitable if this process works. She WILL return to her previous activity level because she will be asymptomatic.

Unfortunately, there was no pre-injury impact test to use as a base. So there's no way to know if her "now" score was affected by the injury. But she has shown great improvement since the post injury test. With time, her neurologist thinks everything will return to a normal pre-injury state.

OK, all that said. We still have quite a ways to go before she is at pre-injury activity levels. As I said, she's still at light activity. She is scheduled to go in for maxifacillory (sp?) surgery. Septum, sinus, etc. Docs say the good news is that everyone involved feels confident about even allowing her to have this surgery.

So...I asked myself the questions you asked of me. I have consulted with many doctors. I have assessed the risks based upon this individual case. Do the scenarios you pose scare me? Yes. Are they supposed to? Of course. Now, what level of risk do we assume by allowing her to play again if the docs clear her. I think that will work itself out. If she continues to be asymptomatic all thru the step recovery, at some point she is going to be at the point where full physical activity is the last step. By then, we'll know. Until then, well, we'll just take it day to day, like we have since last October.

Thank you for your candor.

Hello everyone this is a great thread and I want to share my story of post concussion syndrome

I have been diagnosed with 7 concussions in my life (I just turned 21) ranging from mild to severe. When I was younger the concussions didnt affect me as much as the ones I got when I was a teenager. I have had 4 in four years and I had three in one year. My junior year of highschool I was struck in the head three times while playing baseball and suffered bad concussions. I got two in one week that year. I missed half of the semester that year as well. So after having these concussions I experienced chronic headaches and major memory loss and depression and anxiety. A year passed before I started to re gain some of my memory problems, but as luck would have it I suffered another one playing football. So now it has been 4 years and I still have terrible short term memory loss, chronic headaches, and anxiety. I went through a phase of severe depression getting to the point of thinking about suicide (I am currently doing a lot better with depression and no longer feel depressed). This syndrome has seriously affected my life and well being. It is unfortunate that this syndrome is not studied more to provide us with answers.

If anyone knows what I can do to try and stop these symptoms I would love to hear it. This diseases has made me who I am today and although I wish I didnt suffer from this I hope to one day be able to get the word out. Thank you for listening.

God Bless

I went to go see my dr, they went up on my pills now which by the way they still think i am depressed and think theres nothing wrong with me,my eeg test turned out normal again so , the next day my head start hurting my speech mess up the whole day .which they say nothing wrong with me. But after my appt the next day my speech messes up on me.so my question is to u guys have anyone had this problem where they say u ok then u turn around u really isnt come to find out, i still black out as well.and shakes and balance messes up on me .

lachiche

I would find a neurologist, that knows about seizures. This is what it sounds like you are having. And its very possible to have a normal EEG.

I would like to know what kind of medicines you are on. You need to start a diary of the things that are happening.

And also the lengthy of time it happens, and whether you miss a dosage
of medicine.

Donna

ok I am taking amitriptyline 50mg for my headaches at night ,also thank u for telling me to keep a note of it i didn't think of that. well i am having head pains and body shakes off and on i don't know why then i passes out look like i need to see my Dr.again well i'am in process getting another one because the one i got is not helping me that much.

I would agree with the theme of the others posting. I think its better safe than sorry especially where she's a keeper. Risk of elbow to head or head to post or foot to head injuries are so high with that position.

I am 27 and have played since I was 6, highly competitive since I was 13. Just this last year I had 3 seemingly mild concussions from head to ground (tripped), ball to face, and head to head. First one needed about 3 weeks recovery time till I was back playing symptom free. Second one took about 2 days. This last one was awful and its 4 months post and still migraines and photosensitivity every day.

I have decided not to play again. Its not worth another head injury and yet another delayed recovery. The only way I could see it being a good trade off her recovery is 100% for several months, she invests in a F90 head guard, and totally changes her style of play as a keeper (which might be difficult if not impossible). If I go back even to recreational, I will do the same and try to avoid all possible head to head, head to post, and other risky situations. I feel her pain, its very difficult giving it up. But speaking from experience, right now I wish I never played this last year. Not worth the headache (literally)!