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,

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.

I'm glad you feel better after your shorter workout! And I'm happy to share. Although it's hard to tell with PCS if anything you do is really the best thing or any decisions are the right ones. I still wonder at times if I should just have just locked her in a closet for a year.

She fought through lots of ankle injuries so overcoming that "tough it out" mindset was really a big issue.

YES...she stops when she feels the slightest symptoms. Well...she is supposed to. I don't know for sure if she ever tries to tough it out. After a few regressions, such as you experienced a few days ago, I sort of doubt she tries to tough it out.

She does yoga in a class once a week and at home on her own maybe once a week. She is on the eliptical or running outside 20 minutes at a time probably 5 days a week. The running outside was a big deal. I wasn't sure if she would be sensitive to the jarring as lots of people are. I made her do a few really short runs before a 20-minute one. She does some 5 lb weight work once in awhile.

I'm sorry you guys are going through this with little ones to care for. I hope you have someone out there helping you figure out which doctors to see, what treatments to explore, etc. Hang in there...

Hey Kelly-

Going off what PCSlearner had to say- 10 minutes to start was way to much! I actually did the same thing at the end of January of this year, not aware of this subsymptom threshold program designed by Dr. Leddy. I had a pretty bad relapse of symptoms because I kept biking even though some of my symptoms were getting worse.

The idea is to ALWAYS stay beneath your threshold. I started doing 5 minutes on the bike at an extremely slow pace. I stayed at 5 minutes for a week and steadily increased the pace each day. I didn't have an exacerbation of symptoms so I've continued to increase the time by 30 second intervals and am now up to 9 minutes at a level 2 pace on the bike. Which is NOTHING compared to the exercise I was accustomed to, but hey, atleast it's some progress!

You would be a perfect candidate for the program- people come from all over the world! I'm really excited for my appointment in a couple of weeks and will be posting on how it goes.

Erica