more post concussion problems
 

Again, 15 yr old daughter, soccer GK, major blow to the side of the face with a shot, concussion suffered in October 2006. We have 2 doctors, a speech pathologist and a physical therapist working this concussion. One doctor says he doesn't think he'll ever clear her, another who says symptom free without meds for a week and he'll clear her. The "clear her" one is well known in the sports community (UMPC), the "not clear her" one works at a major rehab facility.

"Clear her" says light workouts OK now. Thinks it will help with recovery. She did work out with her team on Monday. Today (Thurs) the headache is back big time. BTW, headache is the only remaining symptom. Sleep better now due to Trazadone.

How does one deal with conflicting professionals. They have conference-called on the phone, so they know each other's stance.

Also, anyone ever been given neurontin for brain injury? How'd it work?

Thanks for all your help.

:hug:

dang...i'm sorry to hear about her headaches.:(

can you get a third opinion?

my gut is saying...no more soccer until she has no symptoms. and then...the mom in me..well..i'd say no. the risks of permanent damage is so much greater with repeated injury.

new symptom?
 

Today my concussed (Oct of 2006 soccer ball to the face injury, diagnosed PCS) daughter stayed home from school. Said she felt like she has the flu. This afternoon she says her teeth feel sensitive and it hurts her sinuses to breathe. This after doing a "light" workout (OK'ed by her neurologist) this past Monday. Does this make ANY sense?

I'm so very sorry to read about what's been happening with your daughter. I am still recovering from a concussion I sustained a couple of years ago. I didn't turn a light on one night when I was going downstairs to get a glass of water in middle of night and I slipped on the bottom step and slammed the back of my head into the edge of a door jam. Haven't quite been the same since.

I've read and been told so much conflicting information about post concussion syndrome. I guess that's why they call it a "syndrome". The symptoms and time limits to recovery vary so much from one individual to the other.

This might seem a weird question but do you think your daughter is anxious about being injured again? The reason I say that is that after my accident things changed dramatically for me and I became very scared of having another fall. It's taken me a long time to get over that fear.

It must have been a huge wack with the soccer ball for her to be hurt so badly. What sort of things have the speech and physical therapist been doing to help her?

Do you think that these new symptoms like the 'flu symtoms are connected to her brain injury? It concerns me that they may have missed something along the way.

I have no information about the Neurontin to share, I'm sorry.
I'm hoping that her new symptoms... like 'flu symptoms will turn out to be related to something else and that's she is feeling much better fast.

Oh, forgot something... a lot of post concussion symptoms can often be downplayed by others including professionals esp. if there's no clear sign of damage on tests. That's a big pain.

Lara,
Thanks for your post. Neurologist called from his home tonight and was very upset that she returned to the field. He told my wife he NEVER cleared her for even "light" workout. I know my daughter. She heard what she wanted to hear. Now the neurologist says NO activity, that we're starting from scratch and that there will never be a way to measure her first post-concussion tests against what she scores from here on out. She was given a pretty hard-core pain releif cocktail along with some sleep-inducing stuff for tonight. If she doesn't sleep tonight (after weeks of pretty dramatic improvement, that's what's killing me!) we have to take her to the emergency room. I will do whatever it takes to get her well. She's going to be completely withdrawn from school again on monday, after being allowed to increase her load to two classes per day. Pretty much lights out, NO physical activity and lots of anti-depressants until she has NO headaches. I have trained this exceptional soccer goalkeeper in the game she so loves. I know part of her motivation to return to the field is to please me. She pleases me WITHOUT soccer! I don't need it, I need her! She's such a beautiful girl. I love this girl, and I'm watching her struggle. It can't hurt me worse than it hurts her, but I'd take ALL of her pain to make her pain free. I'm so sad for her.

Hi spudbro,
I sent you a pm, but in case you see this first, I just wanted to mention something I thought of... This may be way off but I have read about people having what is called a Chiari malformation (CM1) and gone most of their lives without ever knowing they had it and without any symptoms until sustaining a head injury. Headaches are common with that.

http://www.pressenter.com/~wacma/symptoms.htm

There is another user here called Lizard who might know more about that connection if she sees this post. I can't think of why she's having the teeth problems except that maybe nerves were damaged in her face when the original head injury occurred.

I'll keep your daughter in my thoughts.

Hey, Spudbro. :)

Lara PMed me about this thread, and I didn't see any mention of an MRI. If she hasn't had one, I would certainly get one, particularly since she's still having problems after all this time.

The condition Lara mentioned, Arnold-Chiari Malformation, which my son has, is usually a congenital malformation, and symptoms are often not present until an injury of some kind occurs. It's very common, for example, for it to be dx'ed after whiplash from a car accident. It can generally only be dx'ed from an MRI, so if she hasn't had one yet, that should be done to rule it out.

Good luck, and please let me know...

LIZARD :)

I read your post about your 15 year old having headaches and Im 17 and having the same problems. I hit my head on a locker at school on January 29 and have had the same headache for 7 weeks now. I have went to school about 7 days since then. I was told not to do anything stenuous, like exercise. I have 2 neurologist and my regular physicians. They thought it was a tension headache and then a migraine. I had to get a CT scan and a MRI. The results came back today from my MRI and I had a post dramatic concussion. One of my neurologist called me in something to take for the pain, but I dont sleep very well. Im dehydrated most of the time and have flu like symptoms. I get low fevers and nausea. I have the teeth problems too. Good luck to your daughter about getting better, I know what shes going through.

Hi TinyTalker,
I just wanted to say "Welcome" to the forums here and that it's good to meet you. I'm so sorry to read about your ongoing health issues. I really hope those symptoms start to fade very soon for you and that you can get back to doing the things that you used to before your concussion.
all the best,
Lara

Hi guys,
Looks like we are all going to be the experts on this topic soon. It is very frustrating getting different opinions from different doctors. My son had a head injury in wrestling FEb 17th. It has changed our lives trying to problem solve it. He is mostly dizzy, headaches daily, "in a fog" as he terms it and really strains to read. He is also light sensitive. He went back to school this week and is doing half days, it is like he ran a maration every day i pick him up. He is exhausted mostly. We realize we need alot of time to heal and sports now seem like a dream. He loves all his sports, 3 Varsity sports during year! This injury is alot of damage control. I hope ypur daughter gets better and gets her life back. I feel your frustration with the doctors. We have been to many. An MRI was normal they say but the neuro surgeon wants to have them sent to him because he said they may not know what to look for. I do not think he will be wrestling again next year. If he is able to exercise at all in the future I will be happy for him.

it's like a black box
 

The neurologist that we are putting our faith and trust in gave me a great line today. He said the brain is like an jet airplane's black box. WOW! Imagine trying to decifer what happened in a jet crash with only the info provided by the black box.


First hello and thanks to all for recent replies. Lara & Lizard...we brought up the Arnold-Chiari Malformation. So far both neurologists say that's not what she's suffering from, but I'm going to continue my research as both of these doctors have been wrong before.


TinyTalker and Nancy F, wow, sorry about what sounds to be freak accidents. I'm learning there is no fairness in brain injury. Suggest to your parents and your doctor that you NEED HELP sleeping! 3 weeks into Trazadone has helped my daughter immensely. And get your doctors involved with school. EVERYONE at the school needs to know your recovery is the MOST important thing. No, school, one class, half days. Whatever it takes.The school has a LEGAL obligation to provide you with an environment specific to your injury. Good luck. And I promise you, it DOES get better. It just takes time and REST. Lots of rest. Oh yeah, find a speech pathologist and a neuropsychologist. They'll really help with balance and cognitive issues.


Update on our situation. My daughter is finally sleeping thru the night after 5 months. Headaches are small and short. Yesterday and today, NO HEADACHE! She's visiting the ear nose & throat doc on Monday. New thought is that, when she got her concussion, the blow to the face caused sinus damage (she broke her nose in the injury too) and that may have in tern caused damage that would cause cranial fluid to leak. They say that may have lead to the horrible flu-like symptoms.

Hi spudbro,
Well that is some good news about having no headache yesterday and today. I hope that continues.

Really pleased you're going to the ENT next week. What you wrote about her broken nose and sinus damage all makes such sense. I hope all goes well on Monday and that there are some answers to help your daughter's recovery.

Hi, I'm Donna and I'm a lot older than all your kids. But I'd like to give
you all some hope. I don't play any sports, but I'm the mom of three
special needs kids, and I Advocate for families of special needs kids.

Last August while I was at a conference for families learning more ways
to help parents and to train with my co-workers. I fell and suffered a
concussion and a post concussion syndrome.

Now I had or have neck pain, and headaches. But I've been on topamax
for the headaches because I suffer from migraines for 3 years. And I also
have tramadol, for pain, because I've dislocated both my elbows. One
of which has metal radial arm, and my primary and surgeon want me to
use this instead of tylenol regularly. So headaches are controlled usually
by these meds.

The neck pain, was bad. So my primary suggested after about 4 weeks
of bed and quiet rest, that I start physical therapy. And that is what
I did. And I was surprised how much that helped. But it helped both
the head and the neck, also the shoulder problems that the neck created.

But they returned after a few hours, so I was frequently there. I started
in September, and was released in Late October, to start again in November
in worse pain.

I was started again then in November, and was released just two or three
weeks ago the first week of March with my wishes this time. And am making it with lots less pain.

The biggest differences are:

1. I have a tens machine at home. Its a small version of the electrodes she
used there.
2. I had a traction used on my neck. Now this is important for one
reason. FOr those of you talking about excrusieating pain.

*** IT not only realeased the pain in my neck finally on both sides.

I couldn't move my left side till 2 weeks before I was done with therapy.

But it was known to relieve headaches too.
Which was a surprise. But when I said something about that to my therapist
she said, that its being used for migraines, tension headaches and things
like this.

So you might check into physical therapy.

It honestly was the miracle for me. But I'm almost 49 (10 days) it took
almost 6 months.

Donna

By the way I wanted to add, if your kids aren't getting accomodations in
school because of these health issues they should be.

Make sure the schools are doing what they can. Its the law.

Ask if you need help.

I'm not sure if its allowed

But my email is

Dmom3005@yahoo.com

and I'm a free parent advocate, and I can find help in every state.

Some are free some aren't.

Donna

Okay,
History: Last fall, 15 yr old daughter suffered facial soccer injury, ball to face, treated at ER as head injury. Cleared to play by ER doc due to lack of major trauma symptoms. Returned to play that week. Headaches began shortly after. Headaches persisted. Family doc referred to neurologist, then to long term rehab with neuropsychologist and speech pathologist. Neurological testing indicated possible "permanent brain damage." Daughter continued to complain about sinus and nose pain. Last week lapsed into MAJOR flu-like sypmtoms. Understand, cognitive and memory testing DID indicate major head injury, so I'm not blowing that off, but we/she knew there was more to it...

So...Just back from the ear nose & throat appt. Cat Scan indicated dislocated septum and sinus damage. YAY! ENT doc pointed to areas on daughters face and forehead that were hurting, she said YES, finally someone is listening to me! He showed us cartilage damage that was directly related to SINUSITIS and gave her a prescription. Wants to see her in a week to determine wether surgical repair is needed or not. I'll update then.

Don't EVER give up!

More PCS shares
 

Spudbro and Dmom,
Thanks for your shares! My son is now 5 weeks out from wrestling injury. His life is continuing to fall apart. We are hearing that rest will help symptoms improve. We are seeing a neuropsychologist who has spent alot of time with us and is going to communicate a plan for school. Presently he wants him to show up to class when he can but do no homework, papers or exams. This should be interesting. Most teachers are understanding but some are challeged with this special modification. The sleeping thing has been recently a challenge, not so in the beggining. We have yet to take any meds for anything except Ibuprofen for headaches which have not helped much. This may have to change if he continues to not sleep well, since rest is so important. It is heartbreaking to watch him suffer. I admire all of you for going on for months. We did have IMPACT test done prior to his injury, so we do know that he does have cognitive changes. We are told that he should clear up with rest. It is hard to be patient. He has a terrible time knowing what they are talking about in class. Spudbro, why does your daughter need a speech pathologist? Interesting enough, son did have a thickening of sinus mucosa on MRI, which indicated start of sinus infections. This seems to be a week by week puzzle. Thankyou for any hope offered because the fear that these are symptoms he has to live with for the rest of his life, keeps rearing it's ugly head. Thanks for listening and I will hope for all of us. Son starting school tomm, again.

I can understand why he wants him to show up to school. I would suggest though that he take it slowly still. Maybe two or three hours a day to start.
And I would suggest that you arrange for him to get the notes from the teacher or another student even if he tries to write notes too.
That way he still has a copy of what is said.

Keep us updated as to how he is doing too. That is what we are here for.

Donna

Post concussion syndrome
 

Do the symptoms come and go for no apparent reason? My son has had several days of rest and was doing better but suddenly tonight after watching basketball on TV, he is pretty dizzy and with a worsening headache. Is it 2 steps forward and three steps back sometimes? He seems to be in his own personal hell. It may be because I had to leave him alone all day to work. He may do worse if he gets lonely. Sorry, just randomly thinking to no one in particular. I am obviously frustrated that nothing can be done but watch it.

Yes, you hit it on the nose. It can get better then worse.

But that is also a good sign. Just keep a eye on him. And ask him
to try and not over due it when your not there. That may be part
of the problem. He felt so much better he tried doing to much.

He really wants to feel so much better it just takes a long time.
Its also very frustrating and depressing so just keep working with
him.

He is doing the best he can.

ANd so are you.

Keep asking the questions, and let him know its normal.

Donna

Donna,
Thanks for response. How are you doing?
Nancy

A neurologist won't know anything about it. Take the films to a neurosurgeon, specifically a ped nsg.


LIZARD :)

Hi, thought I might update you on myself. It will be 9 weeks in about 6 hours. I dont go to school, homebound, and Im not allowed to do much of anything at all. My head still hurts and my ears hurt too. I went to an Ears, Nose, Throat doctor and they said the ear pain was cause I grind my teeth in my sleep, go figure. But they told me to sleep in a mouth guard which makes me sleep worse than I didnt before, hence the writing this at 2 20 in the morning. Im glad to hear some of you are doing better. Thanks for the advice about the sleeping meds, I need them badly. My neurologist gave me something for nausea, but I was wondering if any of you/your children were on something that you would say worked. I have a really weak stomach and what they gave me makes me sick. Thanks for the advice, hope youre doing alot better.

I am sorry about your sleep issues. I know someone else with grinding problem and the mouth guard does help them alot. It may just take getting used to. I bet that may be why your healing is taking a little longer. Everyone is a little different and has some variation in symptoms. 9 weeks is still not that long from what I have been hearing. As hard as this sounds, being patient and doing whatever it takes to rest seem to be the consistent advice. I would try something else for sleep. Go back to neurologist or get second opinion, if they do not deal with PCS stuff frequently. You need sleep and low anxiety. Easier said than done, I know. You are not alone and hang in there. Do not let anyone make you feel you are not doing your best. The fact that you are 17 and being as resourceful as you are, is very admirable and I respect your motivation to get better. It will happen soon I bet. Stay strong

Nancy

I'm doing very well really. Its been a real uphill battle for many months
for me. But now I'm on the mend and having a good recovery under the
belt. It just goes to show that it takes time. It is one of those things
that takes lots of time. I am one that took 6 months to do recovery
and to say that it will not be a full recovery is for sure, it will always be
some issues with my neck, but I have a tens machine that finally my insurance has bought all but 50 dollars of so that will be my cost. So I can say that life is good.

And I have known for a while now that it was going to be a thing that headaches, neck pain and just life was going to still sometimes get in my
way.

So at least I"m having a good period though. I got through the month I wanted to, so that I could say that I definately would make it, I just realized
that this week is it.

Donna

Donna,
I bet you are going to recover more than you think, your upbeat and positive attitude is going to slowly, as brain healing seems to go at a slow pace, get you better. Your experience and coaching of others is appreciated. Good luck!

Oh I don't plan to ever be done. I just know that life brings more
bumps on my road. SO even as my life gets back to normal, more
things get added.

Thanks though. I am one that staying upbeat, helps.

Donna

Nancy F.
Speech pathologist isn't what is sounds like in this case. She's helping my daughter with new ways to learn/remember things. Basic memory tricks and more mundane stuff like relevant note-taking in class. My daughter too was only allowed limited classes after weeks of no school. Neurologist actually at one time said the best thing would be lights off laying down in her room with regular meals and the Flintstones on TV.

BTW-Trazadone is a wonderful "sleepy-time" medicine that you should ask your doctor about. Sleep is of upmost importance right now.

The getting better, then worse, is a sign that he's trying to do too much too fast. Common in athletes. Slow him down & back him up in the recovery process when that happens. That's another place where the Trazadone comes in. It's an anti-depressant, but prescribed in very small doses. Sort of fills in the cracks in the mind that says he should be "doing" something.

For the sinus stuff, get a good ENT spcialist. They may do a CTscan in addition to the MRI. The sinus thing was a part of our puzzle too. And keep this in mind: you are dealing with specialists. They tend to look within their specialty to find the answers. Sometimes the answers are outside their specialty. If your boy says sinus, nose, teeth, anything else other than head, listen to him and MAKE THE DOCTORS LISTEN. And finally...a VAST majority of the time, the symptoms go away. It takes time and rest.

Everyone who is in school or has one in school with PCS/TBI...
we have a "405" meeting with school on Monday. Doctors, therapists, school officials, teachers. Their feet are being held to the fire with regard to schooling. They MUST provide an atmosphere condusive to learning for the brain-injured. It's a federal law.

For the sleep challenged...last time I'll promote this drug (I have not been a fan of pharmaceuticals)...TRAZADONE...please just ask your doctor, and if he/she won't prescribe it, find a doctor who will. It has been nothing short of miraculous for my daughter. Also, for the sinus issue that sometimes comes along with a frontal injury (again, I'm normally anti-...but this ain't normal!) prednislone (sp?) has worked wonders for us.

Finally, almost thru the second full week of no headaches after daily, horrible ones since injury in the fall. Don't do too much to quick, rest (do what it takes to get it) and your injury will heal! NEVER give up!

You are talking about a 504 which you are correct is a federal law.

Good luck with this. Make sure you get everything you want in
writing, and if things aren't being done as they are written recovene
the conference. BEcause its against the law not to follow the
504.

Donna

I am slowing realizing that this third term in school is not going to be a reality. Any kind of schoolwork now for my 16 year old 7+ weeks from concussion would not really be to his benefit. He is not liking special attention on him and even took an in class essay exam the other day because he did not want to be treated different despite me telling him and the teacher that this would not be to his best interest. We just had our sports medicine/neurologist appt. yesterday. He feels son should be much better in 3 to 4 weeks and that we should keep doing what we are doing, not rest anymore and not do anymore. He does not want us to get dependent on sleep aids but Melatonin is O.K. Time will tell and I hope we are doing the right thing. I am trying to listen to all advise and do what makes sense for us.
Nancy

Nancy

I would just let him do what he needs to do. And then work through
it. You are doing what you can. ANd he is too.

And I think your both doing wonderfully.

Donna

Doctors with different opinions about head injury
 

I have been in a similar situation due to so-called mild traumatic brain injury.

My experience is that first you see a doctor who typically sees this sort of patient a few days after the injury has occurred. They will say that is will get better after a few days.

Then when it doesn't you move on to see a more specialist doctor, way a neurologist, who will typically see a patient with brain injuries, a few months after the patient was injured. They will say that it should get better after a few months.

Finally, you will see a rehabilitation specialist who will typically see patients only after perhaps a year or so. That specialist told me that it would get better in 1 to 3 years.

So, do they really know?

As far as I know, they don't do any systematic follow-up. So when a patient doesn't come back, they might assume that he or she has recovered. In reality they may merely have moved on to a different part of the health service when one part hasn't done them any good. If they typically see injuries a certain length of time after the patient was injured them may naturally assume that that time-span is the natural one for that particular type of injury and advise the patent accordingly.

I think that doctors can come to incorrect conclusions unless results are monitorred properly and you only get that type of information in scientific studies that are peer-reviewed.

Regarding who to believe: I think that to err on the side of caution would be good. This type of condition can go on for years and years and be a terrible influence on someone's life. It there is any doubt it isn't worth risking it. Take up a different sport. There are plenty of sports that have little risk of taking a blow to the head.

Forget the soccer
 

Hi,
I was a soccer player until I got PCS. I haven't played since, though I have been tempted. But, even though I would love to play soccer, that just can't compete with the risk of doing more damage. The headaches are so bad and the effect on your whole life is so bad that it just isn't worth the risk.

In my view Dr. "No clear" is definitely right. Err on the side of caution. You can still keep fit by working out at the gym in a way that does not cause any jolting of the head. Cross-trainers are good, I think.

Believe me I would rather play sports. I used to play a lot of contact sports, but it's the cross-trainer for me now. I would advise your daughter not to take any risks with her health until she has fully recovered.

Best of luck.

People with pcs need real rest
 

In my case it means, in my room with short bouts on the computer, maybe 2 hours a day compared to a previous 8 or so. As time has gone on I've been able to do a little more reading, but mostly it's been a lot of meditation to get me into a relaxed state. And I'm not someone who was big on meditation. Sleeping. Lying quiet in the dark. Maybe 6 hours of television a week? some texting and a few phone calls a week. NO work. No listening to regular music.

So as I'm reading about the youth here with the PCS - it sounds like many are still going to school. This is a condition that effects our physical being, emotional being and cognitive being. All of them need rest. Serious Rest. The more you rest, the better you will be in the long run.

It's difficult cause each concussion manifests differently and because it is messing with your head, you aren't really sure what is going on.

REST, RELAXATION - No alcohol or caffeine. No work - no play.
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