post concussion
 

Three weeks ago I slammed my head into a cabinet as I was picking something up on the floor (I do not have a memory of the event...my family told me about it). I went to the er and was told I have a mild concussion. I am still having severe headaches, just like I did when the incident first happened. I have a huge, hard bump on my head that hurts when touched and creates pain around my the top of my eye socket and toward the temple. The bump is on the right side of my forehead, near my hairline. I still feel nauseated, dizzy, depressed, foggy, cranky and I weep all the time. I have an appointment on the 30th, but I am concerned about my symptoms. Is how I am feeling normal or do I need to be concerned?

Welcome to NeuroTalk Corki! :Wave-Hello:

I'm so sorry about your injury but I'm glad you found us!

I hope you'll heal and the symptoms will eventually subside.

Hi Corki,

I had a lot of those symptoms after my concussion as well, so I don't think it is at all uncommon for you to experience those symptoms. It was very upsetting and frightening for me because I didn't know what was happening to me and I feared it might get worse. I had a lot of tingling and numbness in my hands and feet in addition to the symptoms you mentioned. And, sometimes I struggled to breathe in the beginning.

The first few months were the worst, but slowly I am seeing some significant improvement. It took almost nine months for many of those symptoms to resolve, but I still have a ways to go before I'm back to my old self. I'm getting more encouraged as time passes.

For me, it helped to put my recovery in God's hands and trust that He will heal me in time. I had to surrender my fears to Him daily and keep my thoughts on healing. I learned to be more patient with myself and to reach out to others for support and understanding. I'm still a work in progress, but now I have hope again. :)

I pray that you will find new hope, healing, and recovery soon. :)

Don

Hi Corki and welcome to NT!

I'm sorry about your injury. All of the symptoms you are describing are "normal" for a brain injury patient.

Your injury occurred recently and there is every hope that you will make a good recovery. However, I must caution you that there is nothing "mild" about a brain injury - and, frankly, it is not a good sign that you don't remember the accident. Many doctors are not well-versed in concussion, so I would urge you to educate yourself so that you get the best treatment possible.

During the healing process, it's important not to do anything that might hinder your progress. Rest and good diet are essential. It's also important to stay away from alcohol. I have no doubt that members more knowledgeable than I will chime in with good advice on supplements and treatment options.

Understanding PCS is an important step in recovering from it. Some excellent sources for further reading include: the Brain Injury Association of America www.biausa.org; www.tbiguide.com and our own TBI forum here on NT http://neurotalk.psychcentral.com/forum92.html If reading gives you headaches, there are a number of excellent TBI videos on You Tube. (Who knew it wasn’t just idiots surfing on cars?)

Do not take comfort in a "clear" MRI or CAT Scan. Standard MRIs and CAT scans cannot detect damage to the millions of tiny axons that control the brain. People who are obviously cognitively compromised often test "clear." If your symptoms persist, you should have a neuro-psychological examination to determine how your brain is actually functioning.

I hope I'm not scaring you: I just want to make you understand that there are treatments available, but you will have to be prepared to be your own advocate. People have made incredible recoveries from brain injury. For example, a woman who got a serious TBI from a fall in her teens is now a neurologist in Canada. Never give up!

Cheers

Hi Corki,

THe majority of people who suffer a concussion completely recover in 6 months. So as others have suggested, rest, a good diet, low levels of stress and plenty of water and sleep are the best things for you to do right now. If you are working or going to school, you should probably take a month off just to rest and return to action slowly.

If after 6-9 monhts you don't recover, then you need to intervene with therapies. Some therapies you could try are neurofeedback and Hyperbaric Oxygen Therapy. You could also look into vision therapy if you have residual vision problems. However, if you have the money and time, you could also start these right away.

Hope this helps and good luck.

Hi Corki,

I'm sorry you have had this injury, but I'm glad you found this group. It has been very helpful for me to be a part of it. I had my injury 6 months ago, and am still experiencing the symptoms I had from the beginning.

The good part about it is that I'm managing my symptoms better, and learning more about what's going on with me. This gives me a greater sense of peace and I can give my brain a rest from all the stress and worry.

Keep learning about what's going on with you. I hope you will not have a prolonged post concussion syndrome. Hopefully with some rest and healing, you'll be better soon.

I hope your appointment on the 30th goes well, and I hope that you are meeting with a neurologist that has knowledge of brain injuries. Good luck!

Hi, one of the best things about finding this site is that you realise that there are others experincing the same as you.

The best thing that you can do is rest. I didn't at the beginning and I think that is the reason why my symptons are still with me 8 years on. I simply did not understand that while I was fighting the symptons for so long I was making things worse for myself. Dorothy Gronwall kept talking to me about "waiting to get better" - I never knew what she meant until after she had died. I don't think I was rational enough to understand!

My MRI and CT scan did not show anything. The only test which showed was the QEEG.

Has your eye socket been checked out - the sound of that does concern me. Perhaps you should go back and have that looked at.


Good luck
Lynlee

When reading the posts on this website, I feel like I was "robbed" of my recovery. My neurologist never really listened to me and never once told me the things I should/shouldn't be doing. After my fall, I went right back to work because I didn't have enough sick time to stay home. I used to take 1/2 hour naps at lunch time just to get through the rest of the day. So, I never did get the rest that I should have nor was I told not to work or given any kind of "release of work" memo for work. I was offered this after 4 months of severe headaches by my family doc. I just couldn't take that time off and not be paid my full amount. I'm just wondering if my first neuro doc would have given me some suggestions instead of pushing me out the door if I wouldn't be "healed" by now. Twelve months out and I am still having headaches daily and more so when working out. I know it is a no-brainer to not work out, but can become depressed without it. I feel that if I would have had the neuro doc that I have today, things may have been different. I also think that because the hospital is at fault for my fall that the first neuro doc did not want to acknowledge my PCS. She never admitted that I had it even though I fell off a gurney in the ER onto the floor. I am lucky that me husband is understanding of the situation and will stick by me. Otherwise, life would really suck.

Thank you for your reply. No your information did not scare me; it's always best to be fully informed even if it's not what we want to hear. I saw my GP and he just write up a referral to a neurologist who I will see on January 20th. The scariest part is the painful bump on my forehead that has not gone away (the accident was on 11/15) which hurts everyday and nothing works to reduce the pain. Unfortunately I was born with ITP (low blood platelets) so I cannot take NSAIDS. I've been taking fiorecet, which I normally take for my "regular" migraines, but it does not do anything for the headaches I have been having since the concussion.

Thank you for your reply. I am seeing a neurologist on 1/20. I wish that I had more time to rest. I am a high school teacher and have a 2nd job tutoring 2 hours a day, 4 days a week. I take naps every Friday and Sunday. My biggest concern is still having a painful bump on my forehead since the accident. I feel as if I have pressure starting at the bump which goes all the way to the back of the head.

Sheds, I am surprised you have not filed a claim against the ER. Wage replacement might have been agreed to, especially if there is an understood need to just slow down for a bit.

Corki,

After a concussion, most of the damage happens after the visit to the ER. I am glad to hear you are seeing the doc on 1/20. A CT might be in order. Persistent symptoms like you mention would justify more investigation by my book.

I have read where some have tried to suggest that concussions be followed up rather than released. I would like to see the ER or Doc have a protocol of at least a phone call follow-up each day for a few days. This would go a long way toward catching the brain bleeds and other issues that are delayed. A trained person could ask a few questions and get a good idea of function and such.

There needs to be as much focus on concussions as there is for strokes.

Mark,

Thank you for your reply. I agree that people with concussions need more after-care. I did have a ct at the er; it stated that nothing was wrong. I believe that they should have taken an x-ray to see if their was a hairline fracture of the skull. I am actually taken off from school (I am a teacher) because I am having increased pressure in my head near the bump. Any time I touch the bump or near it, I become nauseated, dizzy, and pain radiates toward the back of my head. I have been resting all day and I still feel horrible. Tomorrow I will attempt to get an appointment for tomorrow, instead of waiting another week. I am surprised that doctors are not taking my symptoms seriously.

Corki

Mark,

I have filed a claim against the ER. They are not disputing what happened in the ER, but are trying to say that my year-long symptoms of PCS may be a result of underlying medical problems or my seizure disorder. I can tell you that I didn't not feel any of this before the accident - as far as an underlying medical condition, plus I haven't had any other medical conditions. As for the seizures, once I switched medications, I was less tired, but still have headaches after a year and can't be in loud spots and have ringing in my ears constantly. My attorney wanted to know who I thought was the "quarterback" in my treatment, meaning who would know my symptoms the most. I told her that the neuro that I saw initially worked for the hospital, so she wasn't going to say that I had a concussion. My family doc said I was depressed and that was why I had a headache and loss of interest in most things. She increased my Prozac. I then went to see a psychiatrist who told me that I was not depressed and took me off the antidepressants. I went to a sports medicine doc because he deals a lot with concussion patients. He told me that the symptoms I had were due to a concussion. I then saw another neuro for a second opinion. The attorney doesn't want to use the info from the concussion doc because he is not a neurologist. In short, I am the "quarterback" because I am the one who made all the appointments with different people to just get some answers and the help that I needed. I have learned that you have to advocate for yourself because no one else does.

Post Concussion Syndrome for 11 months......
 

I am 20 years old, and will turn 21 in April. I have had multiple concussions as I participated in Football and Wrestling in high school, and then went on to play a year of college football. I've been playing rugby, until last spring during a game I was kneed to the head, received 20 stitches, and another concussion......I then returned to play 3 weeks later, with no real problems. The next week at a rugby tourny the first game I felt concussion symptoms again and then took my self out of the game. That was May of '09 and I have had this hell since. Symptoms are/were nausea, migraines, hazy, no motivation, depression, dizzy, zoned out. I was on Amitriptyline for 6 months, which I've recently weened my self off. I have not been able to lift weights or train since, which was the biggest part of my life. At first I pushed through it like athletes are taught, as it was engrained in me to do so personally. Drinking is up and down as some times Ill feel fine and laugh and be loud as I usually am, and then other times I'll feel stuck or in a haze, basically feel like garbage. I've always been the loud, funny, and people person my whole life, and now it all seems gone.....Depression is what becomes of this, which no one ever wants to admit, but when your whole life has been taken away for damn near a year, it what becomes of it.......if anyone has any advice I'd appreciate it greatly or strories of someone who has become them selves again after a long struggle with Post Concussion Syndrome.....I'd appreciate it more than anyone could imagine.......Thank you very much

hey muddy, ive had pcs for two years, and i know what youve been going thru and its a living hell. i was always the loud funny person, up until this **** happened. but at about 25 months into it my symtoms just started to fade, im doing much better now and im totatlly myself again. i still have problems with dizziness and that weird pcs haze on rare occasion, but compared to what it was before, im doing fine.

Things that help you get through it - Distractions, no joke- any kind, friends, girlfreinds, hobbies, working out, stay busy as you can, you can totally lift yourself out of the hazy depression pcs throws at you by staying busy.

How to get better- Generally doctors will say "wait" itll go away in time. this may be true, but theres actions you can take. this is how much i recommend them in order.
1. -EEG training/LENS, very new technology your doctor might not know
2. -Chiropractor of the neck, cervical chiropractor
3. -Optomologist, which is an eye/brain type doctor
4. -Acupuncture, not as far fetched as you may think
5. -Neurologist medications, i personally dont like this one

i have heard many stories of people recovering comletely from each of these treatments. the thing about pcs is that its not fully understood so doctors often dont know what to tell you. But ive researched and talked to people and i KNOW many people who have gotten better as a result of these. and for others like me, its just a matter of time.

Stay strong. You have PCS, PCS does not have you. feel free to email me if you have any questions.
**

TroyJoseph, My man I appreciate it so much.......No one ever wants to admit they are struggling or losing their grip, but at some point you have to ya know.......I need to hear stories and insight on people who have had this or have this S***, because it helps...it really does.

You can workout now then you say bro? At how many months in could you?......Man, I gotta lift n workout haha.....Im losin it. I did light light weightlifting for a while on the amitriptyline and felt ok....(then I tried upping the weight and felt like a hot bag of garbage again)or which I didnt know what was right anymore since I felt so bad before......I recently read the U of Buffalo Sports and Medicine Concussion Clinic studies and website, which is regulated exercise, which would be cardio on a stationary bike, and it regulates the cerebral blood flow back so it says, since you brains oxygen and bloodflow is wacked from the blows to the head.

I spoke with one of the dr's and I'm debating on going to Buffalo over the summer for 3 months of their treatment. I read that many athletes have gone there and have returned to their sports(which I know Im done with rugby or contact sports) or feeling them selves again.......

Another question if you don't mind haha......what do think about drinking? I can drink sometimes and feel good after getting through 3 or 4 beers......or sometimes I feel like hell, slowed down, hazy like you have experienced....and I never had been a pot user, but have heard good things.....I appreciate the post back bro.......Hope all is well and take care

sheds,

Sorry, I missed this post. Your attorney needs to understand that neurologists are not necessarily the best and concussion. In fact, most are lousy at diagnosing concussions. If they cannot diagnose it with an image, EEG or standard neurological test, most will say that you must be OK.

Check out www.tbilaw.com

LENS training is not known by most doctors because it is not approved by the FDA for diagnosing or treating any disease or injury. It has been around since 2006. It has an "exemption" status with the FDA. It can only be promoted as a relaxation device.

There are other true neuro-feedback systems (volitional neuro-feedback requires the patient to act to make the brain behave a desired way). LENS is a non-volitional neuro-therapy system. The patient does nothing but sit while the LENS device does its thing.

This subject has been discussed extensively in prior threads.

Muddyriver- I've seen your posts on other threads and have responded, but I'm not sure you've seen my responses yet? I just joined recently and cannot remember which threads I've posted on! I thought I'd write on this one just in case you check this thread and not the other. I to am considering going to Buffalo over the summer to be treated. I've seen other doctors who have recommended and introduced this study to me and personally, I think its my best shot. I've tried to get in touch with John Leddy, the director there, but have had no luck. I was told he is out of town till tomorrow. Have you been able to get in touch with them? Do you know anything about the procedure done there/more information? I'm not from around the buffalo area- are you?

best,
erica

Yo Erica!
Hey I havent seen any of your posts Im sorry! I havent been on here in a while......As for the Buffalo clinic I talked to the lady at the desk and she gave me Leddy's email.......It won't let me post his email on here because I onyl have 5 posts?? But here it's his last name((Leddy)at Buffalo.edu).......I called today and the lady told me to call back Monday when He and this other lady will be back to set up an appointment.

I am not from the Buffalo area so I'd be in the same shoes as you, but it's seems as the one of the few things left that would help.......I know they do gradual cardio exercise and make your own individual workout, which they control your heart rate etc with monitors and breathing machines........

I'm hoping I get in for this summer! Let me know if you get ahold of them!

muddyriver-

I've emailed Leddy twice, with no response. I'm going to email him again today, which is what the lady at the front desk suggested I do again. She said he's pretty good about getting back to patients? So i'll keep trying! I'll let you know when I hear back...

I've started doing regulated exercise here at school with my athletic trainer, and as of yesterday i had spent two days biking leisurely for 5 min. My symptoms having gotten worse, and are actually a little bit better. I plan to keep this regiment up while here at school and get in with the people at buffalo, since they are after all the ones who pioneered this study.

Let me know when you get in touch with them!

erica,

You need to understand that the graduated exercise program is a long and slow program. The brain is very slow at changing. Any thoughts about seeing results quickly should be forgotten.

Take it slow and consistent. The important goal is to avoid causing an onset of symptoms.

Erica!
Ya he emailed me back shortly after I emailed him, so him being gone is the reason you havent gotten a response I'm sure! Yaya on the graudal exercise, I started doing it about a month or so ago and started to feel better, then like a dumba** started to freak out and lose composure when doing the stationary bike and walking........It was like all the frustration and anger and everything starts pouring out when I do the exercise's so I stopped.........I'm going to start again soon.

But when me and my buddies throw the rugby ball around or shoot hoops(I don't exert myself hard at all), the next day or later that day Ill feel better..........This whole thing has screwed me up mentally so much, confidence is gone since I've lost 40 lbs of muscle, you know like you said both college athletes and working out and competing was life. I feel like a 80 yr old man, and know I'm not going to get these years back you know??

You seem to have wayyyyy more advice than I had early in my PCS shindig, which is awesome because I wouldn't want the person I hate the most to have to go through what everyone on here has/are going/gone through. I had to play doctor myself, like I was/am my own damn patient haha. Its been nothing but pure hell........How far in to your symptoms are you?? Let me know how your gradual exercise is going, or any other helpful news!!

muddyriver-- So i heard back from Dr. Leddy last night, and he told me to get in touch with him the week of the 26th to set up an appointment. I am fortunate to have a medical staff readily available to me since I am an athlete here at school, but at the same time, I'm not to happy with the way my case has been handled. After 5 months, my parents wanted me to get some second opinions, especially with my neck/back, and the doctors/medical staff here weren't to keen on it... needless to say, I finally got them to let me start doing the graduated exercise as I mentioned. It's now been almost 7 months. I think the exercise is going ok- I've done the bike three times at 5 minutes, and each time I've been able to increase the pace by a bit. I keep telling myself baby steps here! Again- i really hope that I can get to buffalo this summer- they are the experts after all!

Hello
 

Hello erica21 and muddyriver!

I recently came across this forum looking for information about PCS. I read both your stories and found I have had similar experiences to both of you, and was hoping to share my progress as well as follow along with your progress for some support! If you're interested, here my is my story:

I am 21 years old from Ontario, Canada, and I am a University hockey player just finishing my third year of school.

In February 2009 and again in November 2009 I was in two car accidents. The first accident we were rear-ended from behind, and I assume some whiplash was involved. In the second, we were hit from the side. Neither of these accidents involved any major problems, although I imagine they do have some significance in my current problems.

During February of 2009 while playing hockey I slide into the post with my neck/top of my shoulder, and they believe it was a "stinger" where basically my body stopped but my head kept going. While no serious damage was caused, I have frequently had problems with muscle tightness/soreness in that area.

In early November of 2009, I sustained a concussion when I got hit and fell backwards into where the boards met the ice at a very awkward angle. I never really thought much of it, and at therapy the next day for my neck I was told to talk to our team doctor just to make sure my head was okay. She told me to "take it easy" for the next week, but never specifically said I wasn't allowed to play, so I ended up playing the following weekend, even though I did lie about my symptoms. I never took any bad hits during that next game, but it ended up making all my symptoms come back much worse. My school uses ImPACT testing (a computer based program that measures memory, reaction, speed, etc) and compares your post-concussive scores to your baseline scores. I ended up doing poorly on this test, and so I sat out again for a few weeks until my symptoms did seem to improve, although again I was trying to rush back into the game and I think I fooled myself into believing I was ready. After a few weeks, my head symptoms weren't too serious, but I started getting some pretty bad back pain which didn't seem to have any cause. Some doctors think it may be a symptom of my concussion.

We had no games over the month of December, only some light training but I was told to sit out because of my back problems. I returned to play at the beginning of January, played a few weeks, and then was out again for the rest of the season because of some signs my coaches noticed that they didn't think was right, and indeed some of my symptoms had come back. I have not been allowed to do any sort of training since the end of January, and despite all these restrictions I have noticed no improvement. I can't say that any of my symptoms are anything too serious, but they are constantly there and that makes me nervous to return to play too quickly because I don't want to have another season like this next year. Currently, I am experiencing headaches, dizziness, sleep problems (I was prescribed medication, but was skeptical about it and never ended up using it), minor nausea and memory/concentration problems.

This year was the first time I've ever had to deal with serious problems from concussions, though one doctor told me she could tell I have had many over my life, just by feeling the pressure in my head (I have no idea if that is legit or not?). Anyways, I have seen countless doctors, therapists, osteopath, chiropractor, neurologist, etc. and never get anywhere with anyone. Erica, I feel the same way you do - as a varsity athlete I am fortunate to have a medical staff available to me, but I am frustrated with the way everything is being handled. They all seem to tell me different things, or I never really get anywhere with their suggestions. I have never had any image testing done, such as an MRI or a CT scan, despite the fact some people think it might be helpful. I am really interested in this gradual exercise approach you two are discussing, however I am in Ontario, a few hours from Buffalo so I don't think I would be able to take advantage of this research program. Can you guys fill me in on the program you are currently trying to get involved in? I am really tempted to start something like this by myself (or do you think it is a bad idea?) because I am not getting anywhere with all the "experts" I have been seeing. I am pretty much terrified of returning to activity too soon and dealing with these problems again, but at the same time I really want to try this approach. What do you guys think?

Thanks so much for listening to my story :) I look forward to hearing about your progress!

Kelly

Hi Kelly and welcome to NT!

Clearly you've suffered multiple concussions and that can put you in a precarious position now - and especially in the future.

Like so many of us, you appear frustrated with your medical care. It's amazing, considering that brain injury is the #1 killer and disabler of Canadians under 45, how little doctors know about concussion. As a former varsity athlete, I caution you to be skeptical about the advice you may get from team trainers and physicians. Remember, their job is to keep you on the ice.

As for imaging, conventional MRIs and CAT scans lack the sensitivity to show damage to all those tiny little axons. Consequently, folks with obvious cognitive deficits will usually have “clean” scans. There are specialized MRIs that might show the damage, but they are expensive and hard to access. The best way to know how your brain is really functioning is to undergo neuro-psych testing. Have you had this done?

As a brain injury patient, it is critical for you to understand your condition so you can lobby for treatment. Some excellent sources for further reading include: the Ontario Brain Injury Association www.obia.ca, www.tbiguide.com and our own TBI forum here on NT http://neurotalk.psychcentral.com/forum92.html If that's too much reading, there are a number of excellent Traumatic Brain Injury (TBI) videos on You Tube. (Who knew it wasn’t just idiots surfing on cars?) The ones on whiplash and concussion are worth checking out.

Cheers

Kelly-

First of all, I"m glad you found us here. I've only been blogging and aware of this site for about two weeks. Within those two weeks, I've found just finding out there are other people out there going through the same thing and are able to relate has been given me such a feeling of hope/understanding. It's been a GREAT support system.

I completely understand where you are coming from- you don't want to have another year like this, because like you- i've missed my entire season. Aside from being out of playing, I've been out mentally/socially as well. As far as the MRI/CT Scan- there not really worth pushing to get. As hockey mentioned, nothing ever shows up, which for me, left me feeling helpless. My symptoms have been fogginess, severe headaches (the latest is that I get a pounding headache from talking to much, and to much noise) and neck and back pain. I also have this sensation like there's some pressure in my head.

After five months my parents were upset about how things were being handled- the doctors here decided to put me back on "cognitive rest" because I wasn't getting better. My coaches reprimended me for "over doing it" in the classroom and were "disappointed" that I hadn't done something about school earlier in the semester. I went home for a couple of weeks and saw some drs. at home who introduced me to the study done in Buffalo. I came back to school and took some incompletes in some of my courses and tried to convince the doctors here to implement the program.

After a month they finally agreed to let me start gradual exercise. It's been a week now and I've biked three times. They wanted to do cardio every other day to start. I to have bad neck and back pain, which according to the team osteopath my trapezies muscle has been spasming for so long that its causing this pain. Anyways, here is the link to the buffalo study. There has also been a study done in Montreal using similiar protocol to address the same issue of PCS in adolescents.

http://journals.lww.com/cjsportsmed/...reshold.4.aspx

It's some fascinating stuff. After reading this, I thought that maybe there is hope for me to get better and one day return to play. But for the mean time, I'm just focusing on getting better. THEN i'll think about returning to play. I just don't know anymore. I want SO badly to return next year, have the senior year I didn't get to and play with my best friends. The best advice I can give you is to take it a day at time. When I go home later I'll look into the who wrote that Montreal Study and I'll post the link.

Also, I emailed the director of the concussion clinic at Buffalo. His email adress is leddy@buffalo.edu. He won't be back until April 26th.

Hang in there, I know how freaking frustrating this is. But isn't it great to know that there are people who can relate to you? Even if they are people you've met on the internet!

Erica

@Hockey: Thanks for the welcome :) and thanks for all the info, especially your thoughts on MRI/CT scans. I was getting very frustrated over that because some medical professionals were shocked to hear I had never had anything like that done, while others told me they will not show anything useful and so there is no need to get one done.

I googled the neuro-psych testing you mentioned and was reading a bit about it. Are you familiar with ImPACT testing? I have done this many times over the past year, with the most recent one I took showing results similar to my baseline test which is obviously great news. Do you think this neuro-psych testing is still something I should look into? How might I go about that?

@Erica: Hey! It's so great know find people with similar experiences to mine. I've already found so much useful information on this site.

Are you currently getting treated for your neck/back pain? I feel like we might be experiencing something similar, because my trapezius muscles are what seem to be causing me problems too. I initially injured that area over a year ago, and since then everything has been sore and so tight no one has even been able to loosen the muscles. During the season I was getting therapy for that, but as my head started giving me more problems, all my doctors/therapists seemed to focus their attention to those problems. I read that sometimes symptoms can be caused by other problems and you need to try and get those fixed as well. My neck/back hasn't been too painful lately, but I am also worried that when I am allowed to do any physical activity it will cause of these problems to come back and I will be forced to deal with all those issues again because they were never treated properly in the first place.

How has your gradual exercise been going? Have you been successful and symptom free so far? Is there a specific program you are following? I am interested in trying to start something like this with my therapy staff. One of them did mention this possibility awhile back, but that thought kind of got pushed to the side when they didn't all agree on that approach.

Talk soon :)

Kelly

Kelly,

The ImPACT test is a mini-neuro-psych assessment that needs a baseline to establish you current condition. A full post concussion neuro-psych assessment will be able to validate your symptoms and quantify your dysfunctions.

The ImPACT is not designed to be a comprehensive neuro-psych assessment. The biggest weakness of the ImPACT test is simple. It does not provide any data as to how resilient your brain is to any future impacts.

As Hockey said. You are at risk of exacerbating Multiple Concussion Syndrome by continuing to play. MCS is a very serious condition. I have not had a serious concussion in over 45 years yet my very minor concussions have left me with serious disabilities. The serious problems from MCS show up in your 40's. It is impossible to predict how your brain will function in later life.

I have had 13 notable concussions. One severe in 1965. Two moderate concussions and 10 minor to very minor concussions. I can now get a concussion from a quick head movement.

So, You have some serious thinking to do. What price are you willing to pay later for another season of play now? Only you can make this decision. If you do a bit of research, like NFL football players who have serious dementia in their 40's, you will get a better picture of what your risks are.

Do you want to ride this roller coaster of symptoms for the rest of your life? Or do you want to slow down, take it easy, and try to regain some semblance of a normal life without at risk sports?

It is a very hard decision but a necessary decision. You will find plenty of people here who will support a decision to slow down and try to regain some 'normal.'

My best to you.

Kelly-

My neck and back pain has been pretty bad for the past 5 weeks. I was on amitryptiline before (50 mg) and it was taking care of the neck pain- then it wore off and I started to have back pain as well.

Yesterday I saw a cranial osteopath who was extremely insightful. A few weeks ago I saw a structural integration massage therapist who referred me to this guy. The massage therapist I saw referred me to someone else because he didn't think he could help me. He thought that the issue was something structural, not muscular, and that by going to someone more experienced, they would be able to figure out what the problem is.

I had a three hour appointment yesterday with this doctor. He had me get a standing xray of my pelvic bone because he believes that my right leg is slightly shorter than my left, which is causing the pelvic bone to have a slight tilt, thus pulling down on this thing (for lack of the actual term!) that is connected to my brain. I asked him why these symptoms hadn't presented themself before the concussion, and he said that he sees this often triggered through brain trauma. Very interesting stuff....

I have a few more appointments with him- maybe he will be the answer to some of my problems?

I've been doing the regulated exercise and today I did 7 minutes on the bike. Ever since I started biking, I haven't had the pounding migraines that I was having before. By no means am I better- I've tried to isolate myself from noisy areas/socializing with a lot of people and thus wearing myself out. But, there is a slight improvement. Did you check out the article I posted? I would encourage you to share it with you trainers.

The second study is done out of Montreal Children's Hospital "Active rehabilitation for children who are slow to recover following sports-related concussion" is the name of the article. I plan to get in touch with Dr. Leddy (the director of the concussion clinic in Buffalo) next week to set up an appointment to see him.

Erica

erica,

It sounds like you found a Cranial Sacral Therapist. Cranial Osteopath is a term used by some osteopaths (D.O.'s) who choose to not go by Cranial Sacral Therapist. Osteopaths take quite a bit of Cranial Sacral Therapy training in osteopath school. I would suggest doing some online research about Cranial Sacral therapy so you have a better understanding of it. It has some very good values but also some very questionable issues.

Getting educated on this controversial therapy will allow you to have better control of your healing. I am not saying to not take advantage of CST but rather to be a knowledgeable health care consumer so you get the best bang for your efforts and health care dollars.

Studies have shown that the same person diagnosed by ten different CST's will get ten different diagnoses. They best skill sets are regarding the spine. They can do amazing things with the spine. If you believe that your skull is comprised of plates that are moveable by the gentle manipulations of a CST, let them try to manipulate your skull. Most physicians and researchers believe that the skull plates fuse during the pre-adolescent years.

I wish I could find the article I read last year. It mentioned that even some D.O.'s who teach in osteopath schools refuse to teach CST because of its unsound basis. One of these D.O. instructors wrote an in-depth review of the fallacies of CST. He acknowledged the value of the spinal manipulation but not the skull manipulation nor the diagnostic techniques of feeling the energy blockages in the skull and such.

A good upper cervical chiropractor is also worth a look. There is such a variation between the many chiropractors and Cranial Sacral Therapists that it is very helpful to understand their therapies. It is also helpful to know that one CST or chiropractor may be helpful where another may be worthless. It is a matter of how they understand and work with your specific body.

For example, I have seen about 15 different chiropractors over the past 30 years. Only 6 were really helpful with my body. Same thing goes for Physical Therapists. They all have strong points. Some have many weak points. Concussion is often a common weak point.

There is a chiropractic diagnostic technique called "Leg Check" that may be helpful. Asking on the phone if the Chiro uses leg check can quickly help you sort them out. Leg check uses comparative leg length to pinpoint muscles spasms in the spine. This is an valuable diagnostic tool in the hands of an expert.

I am surprised the amitriptyline was working as a pain reliever. It is a tri-cyclic anti-depressant that is used in small doses (10 mgs) for Post Concussion Syndrome head aches and other symptoms. Not as a pain reliever but as an alternative way of reducing the head ache by reducing the cause of the head ache (often tension).

I am interested in what you osteopath does to help you. A good set of fingers on the back can be like magic.

Hi Erica,

What type of doctor was it that is looking into your pelvic bone issues, was it the cranial osteopath? I also have similar issues with my pelvis - my therapist has measured my legs and I believe they are the same length, but I know the one side of my pelvis was basically "jammed" and did not move the way it should. I actually learned this from the osteopath I used to see, but don't see anymore because I didn't find her approach very helpful. She thought it was caused by the way I stand by favoring my one side more then the other. Please let me know how your next appointments go with this doctor. I think that is really interesting (and also rather annoying!) that pretty much any part of your body can cause problems with your head .. hopefully you're on the right track to solving some of your problems!

I have been discussing the gradual exercise approach with my therapists .. it is hard because while a couple of them think it is worth a shot, the neurologist i have been working with doesn't think it is a good idea, so it hasn't really went anywhere yet. It seems so promising though, especially because it appears to have helped relieve some of your symptoms. I think they might wait to start anything until I get in to see a concussion specialist first.

Talk soon.

Kelly

kelly,

I am confused as to why your neuro would be against the graduated exercise. The whole concept is to avoid triggering symptoms. Anything you can do to increase blood flow without increasing/triggering symptoms sounds good just on basic physiological logic. Many doctors will commonly allow any activity that does not cause pain (our body's first line of communication) or other symptoms.

all,

I am also confused by the reference of a concussion specialist. In all my years of PCS and PCS research, I have never found a Concussion Specialist on the treatment side. Dr Dorothy Gronwall and her colleagues in New Zealand are probable the best but Dr Gronwall has passed away and her colleagues are retired.

There are only concussion believers and concussion deniers. Even the concussion believers are not specialists. The Buffalo people are not concussion treatment specialists. They are "return to play after concussion" specialists.

Most cognitive rehabilitation specialists are focused on much more severe symptoms that those of PCS. Their targets for success are often about level that PCS subjects are when requesting help/therapy. In other words, my current level of symptoms, memory deficits, cognitive deficits, slowed processing speed, behavioral struggles, are considered to be the end goals for most TBI patients.

I just got home from my local brain injury support group. I am the highest functioning in the entire group despite my many difficulties. Hopefully, someday, health care providers will discover ways to help PCS subjects with our struggles. At present, we do not meet the 'severity of symptoms' minimum for serious consideration.

Dr. Julian Bailes, chairman of neurosurgery at the West Virginia University Hospitals is more expert than most, especially since he understands the long term problems. There is also a researcher in Boston who understand concussion from a post mortem diagnostic perspective.

Both are still hoping to discover treatment modalities that offer consistent results that insurance companies will fund. Treatment for long term symptoms is still a mixed bag.

One expert recently stated that the first priority is to stop denying care to PCS subjects. He stated that this requires that medical records properly list concussion as an early diagnosis (ICD-9 diagnostic code 854.0 ). This way, when symptoms become evident at a later date, they can be considered as possibly caused by the previous concussion. Otherwise, later care is refused and the symptoms are labeled somatoform, psychological, or malingering.

Good luck as you push your health care providers to acknowledge your PCS condition.

This is exactly what I feel like I have been struggling with for months! The local Children's Hospital has great team of professions and services available to those that are very severely injured. The high function concussion kids with prolonged PCS fall under everyone's radar. We as parents have fight to find them the care they need. There has to be a better way.

Mark,

I am familiar with cranial sacral therapy. Back in december when I was home for winter break and in pretty bad shape my mom booked a cranial sacral therapy session not knowing what it was. (She thought it was a head message). Needless to say I was completely confused as to what was going on the whole time and found no benefit from the session so I went online to learn more about this therapy. I didn't find any benefit and do not plan to try it again.

However- a friend referred me to a structural integration message therapist who is extremely educated about the body and how it is all connected. After working with him for 2 1/2 hours he was very honest with me and told me that he didn't think he could help me, but that he knew of people who may be able to. That's when he referred me to this doctor who has a D.O. He is no longer covered by insurance because he spends so much time with his patients. His goal is to see you only once, but will have you come back if you need to. I spent three hours at his office where they took an extensive history. He also did some other things to try and "straighten" and "balance" me out. The right side of my body is out of wack. That's why he had me get the xray standing up to see if my pelvis has a slight tilt to the right.

When I have ever referred to concussion specialists, I am referring to only one person that I've met through this entire scenario. He is the Director of the Concussion Clinic at the National Childrens Institute in Rockville, MD. He was GREAT. In fact, he is the first and only person who ever took the time to actually sit down and explain to me what a concussion actually is. Crazy right?

It really is quite unfortunate how so many doctors are not informed, don't choose to be, don't take the injury seriously, etc., etc.

Kelly-

I am meeting with this D.O. again tuesday to learn whether or not I have a tilted pelvic bone, and to go from there. He explained that if the pelvic bone is tilted, it could be pulling on on the outer most membrane that covers the brain, which actually attaches right at the pelvis bone. (makes sense and accounts for my neck, back and migraines). This tilt has caused my body to get out of alignment with some of my ribs slightly out of place that he believes has been pushing on my trapeciez muscle which then spasms and is causing this chronic pain. I will let you know how the appointment goes.

As far as the exercise regiment- I had to wait a month for my trainers/doctors to be convinced that it was okay to proceed with the program. They are certainly not the experts with this, and that is why I am planning to head to Buffalo as soon as I am done with finals.

Let me know how things are going!

Erica

Mark,

The neurologist I deal with actually isn't a doctor - from my understanding he is a research professor at my University that specializes in neurology (if that makes sense). He is the person who interprets the results of the ImPACT test for the varsity athletes, which is how I got involved with him. When I was told to stop playing hockey back in January, I had to stop all physical exertion until my symptoms cleared. While some of my therapists thought it was a good idea to try some physical activity now, he didn't think it was a good idea for some reason and so that idea never really went anywhere. I actually don't have appointments with him or anything like that, and my athletic therapist usually acts as the "middle-man" between us. Because I never really talk to him, I'm not sure why he didn't think it would be a good idea, and I just accepted it because I didn't know any better. I've learned so much after reading all the great information on this site, and I now have a better understanding that some gradual exercise might be very beneficial, so I'm really going to try and push that.

As for the concussion specialist - I was referred to him by one of my doctor's when I had an appointment a few weeks ago. His name is Dr. Charles Tator, and he a neurosurgeon out of Toronto Western Hospital. Not sure if are familiar at all, but he is the same doctor who singled out Don Cherry a few months back for promoting aggressive behavior hockey that leads to serious injury. I have heard nothing but good things about him, so I'm really hoping to get in soon to see what he has to say about my problems.

Erica,

It actually seems kind of crazy how similar our situations are! They believe my pelvis is causing many of my problems, though I didn't know it could even affect your brain. My ribs were also out of place, I believe they referred to them as being "stuck". Does your neck/back pain get worse with physical activity? My pain hasn't been too bad as of lately because I haven't been doing much, but I find my pain would get really bad after doing any sort of exercise. Because everyones efforts turned towards my head and not the rest of my body, I am scared that when I do start getting back into physical activity this pain will all be back because it was never fixed in the first place. Sure is frustrating how the problems never seems to end!

I don't really have much of an update on my progress! Things have kind of slowed down as of right now because I don't think anyone really knows what direction to go in. I am hoping by next week I am able to schedule an appointment with this specialist, and possibly even try some biking too! Let me know how your appointment goes!

Kelly

Kelly-

Yes- our situations do sound very similar! After meeting with the cranial osteopath today, he showed me that the xray did not reveal any pelvic tilt. However, my third and fourth ribs are still out of place, and are poking into my trapeciaz. The skewed ribs seem to be the main culprit of all my neck and back pain according to this doctor. He's working with me to try and get things back in place. He also found that the bones in my head were completely locked, which he refers to as a "hard head", when they should have a natural movement to them.

I've officially made an appointment to go to Buffalo when finals are over. I am very excited, because they are going to tailor an exercise program specifically to me after some exercise testing. Also, I will only need to report to Buffalo once and can do the program entirely from home. I'm hopeful, and will post on my progress with the program.

Erica

Hey!

Wow that is so exciting that you get to go to Buffalo! Definitely keep me updated on your progress. I read what you wrote about only having to go once so I thought I would look into it more. I sent Dr. Leddy an email but am still waiting to hear back. I have no idea if I would even be a candidate because I am from Canada, but I figured it wouldn't hurt to look into it.

I had been feeling better the last few weeks so I thought I would try some very light exercise on the stationary bike yesterday. Unfortunately I couldn't even make it through 10 minutes before I starting feeling so sick. My head hasn't felt right since, and I had a lot of trouble sleeping again (which had finally starting improving in the past few months). So needless to say it did not go well at all and I am incredibly frustrated.

I did finally got an appointment with the specialist I have been referred to a few weeks ago. I have an appointment with him in a few weeks so hopefully he has something helpful/encouraging to tell me.

Hope all is well, talk soon!

I've mentioned this before, so please forgive my repetition if you've read it before, but...

10 minutes strikes me as at least 8 minutes too long for re-starting an exercise routine. For my very athletic daughter we had to start at 2 minutes a day and work our way up in 30 second increments every 5-7 days. It takes forever. I realize that 2 minutes seems ridiculous. But it works..at least it worked for my daughter. She is up to 20 minutes plus, including being able to run outside.

From my understanding, you should not exercise until you have a symptom. You need to stop before you have a symptom.

This process not only helps your brain/cardio system readjust, but it also changes your mindset set from "shoot...look what I can't do" to "Yay...look what I did today!" It gave my daughter a tiny sense of control in the nightmare of PCS.

All the best-

PCSLearner,

Thanks so much for sharing your daughter's experiences. I don't think I had read your PCS story (or hey, maybe I did and just forgot!), but I just went back and read about your daughter's injuries.

You were right - 10 minutes was far too much as a re-starting point for my exercise. Not only did it make my all my symptoms worse, it frustrated me more then words can explain. With your suggestions, I decided to try something much smaller today. I did 2 minutes, and so far things have been okay, my head does feel a bit 'spacey', but definitely not as bad as trying for 10 minutes. I sure felt silly being at the gym to ride the bike for that amount of time though :) But it felt great to exercise again, no matter how small it was! I guess you have to start somewhere. I hope I will be able to continue with small steps, and I know if I am able to slowly progress like your daughter it will be great for my confidence.

If you don't mind me asking a few questions about your daughter:

Does even a small amount of exercise increase any of her symptoms? For instance, if she starts feeling nausea during some light exercise does she stop right away? I am having trouble figuring out when to stop and when to keep going. In past sporting injuries it has always been possible to fight through it.

Does she do any other type of exercising? Any light core exercises, or maybe some easy strength training? I believe you mentioned yoga in one of your previous posts?

Thanks for sharing your opinions. All the best to you and your daughter.