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 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