University of Buffalo concussion clinic
 

I'm flying out Tuesday to meet with Dr. Leddy and then do the treadmill test.

I know a lot of people that come to this site are interested in the program there, so I figured I'd run an experiment of n=1 and let you all know. I'll keep this thread updated.

Let me know if you have any questions you want answered.

Who is Dr. Leddy and what is the treadmill test?
Jena

Here are some links:

(you may have to add www to the front of the links. sorry, can't post clickable links)
concussion.buffalo.edu
concussion.buffalo.edu/research.html

Short 1 minute video in this article:
sportsconcussions.org/feature-stories-Buffalo-exercise-research.htm

The Buffalo Clinic has a protocol to get athletes who have suffered a concussion active by slowly upping their exercise levels. They start by doing a treadmill test to find the max pulse rate before symptoms return. They then set an exercise rate that is at a substantially lower symptom free pulse rate.

The exercise is kept at the lower pulse rate for a prescribed period than increased to the next level. This slow stepping up of the exercise level/pulse rate eventually allows the athlete to exercise at pre-injury levels.

This protocol is more about return to play that recovery from the concussion. There has been no research to verify the ability for the brain to tolerate another impact or even a simple jarring event.

It has been successful at returning athletes to their pre-injury exercise/exertion levels.

Mark, it also sounds like it has the potential to completely resolve some of my more day to day annoying problems like dizziness, sleep problems and headaches. This is different than just being able to exercise again, although I'll also be happy if that is the only outcome.

They haven't been able to help with any of the cognitive issues -- like my struggle with noisy places and trouble multi-tasking.

In any case, this is just an experiment. I had the time and money so I figured I'd give it a try and let people here know if it worked for me.

As for repeat head injuries, you can bet I've adjusted a lot of my life around avoiding it. I think I'll be an individual time trial specialist, so lots of space between me and the other riders! :) Not quite willing to say no more bike yet though...

I have been doing the stationary bike for about 6 months now in the evening. I am not sure it helped for any symptoms but sure keeps me sane and as a matter of fact that is the only thing which makes me human. For some reason I feel some what better in the evening and after I do 20 mins I start feeling even better and for me the effect is immediate with headaches and fatigue (goes down). I can sure eat better since I get good appetite.

It is so bizarre when I have headache/fatigue I am supposed to rest (which makes my condition even worse by lying down) and exercising for me definitely does not aggravate symptoms rather tone down the symptoms. If I do the exercise in the morning then the rest of the day I am completely wiped out. Weird! Moderate/light exercise is something we all know is beneficial regardless it helps with your symptoms. Lately I am even thinking to push it with some light weights.

I have an appointment with the main doctor for a NFL team. He will do somehting similar with me. I'm concerned though and haven't gone to see him just yet because I can barely walk the length of 2 quarter acre properties before I get symptoms. Am I ready for this?

CHITOWNDIZZY -- did you meet with Dr. Leddy?? If so, what was the outcome? WHat did he recommend?

I too am curious.

FreezerDoor - as far as distance walked to trigger symptoms is concerned, you're way way ahead of me! I'm lucky if I can make 2 or 3 city blocks before I feel ill. So I say go for it.

I'm also curious about the differences between your doctor and Dr. Leddy's approach also.

I must not be clear. 2 - 3 city blocks is a heck of a lot farther than I can walk! I'm talking about maybe 60 feet. : (

On elavil, however, I found I could grocery shop for a few minutes. Had to be way more than 60 feet! so happy.

I'll let you guys know what my doctor says.

I am the same way guys...can barely get to my mailbox at the top of my driveway without feeling symptoms...head feels weird.

new symptoms when talking, reading, computer, is all this facial tongue, etc tingling -- why????

I'm back from Buffalo. Here is the short version: I'm no longer suffering from PCS. My symptoms are mostly caused by an upper cervical neck injury. Dr. Leddy is a really nice guy and a fellow cyclist to boot! He also said that 90% of the people he tests have problems due to neck injuries, not PCS.

The appointment consists of a meeting with Dr. Leddy, the "treadmill" test, then a follow up to get an exercise plan.

The first meeting with Dr. Leddy is just to get your history, background and to do those "touch your nose, follow my eyes" tests I'm sure you've all done a hundred times.

Then they take you into the next room where a physical therapist tests your balance and physical exertion. I had an additional test which I"ll explain later.

The balance test was fairly standard. Stand with your feet together, hands on hips and close your eyes. Stand on one foot, hands on hips, eyes closed. Stand with one foot in front of the other, hands on hips and eyes closed. Now repeat all three but while standing on a wobbly piece of foam. I had success with only the feet together test, otherwise I had trouble with the rest.

The treadmill test is simple. You walk, every few minutes they increase the incline, you stop when you are maxed out or your symptoms stop you. I was hooked up to an EKG, blood pressure and heart rate monitor and I also would rate my perceived exertion every time the incline was increased. They also tracked how straight I walked using pressure sensors in the treadmill.

I would imagine if any of these measurements changed in a strange way they would pull the plug. For me this didn't happen -- I hit a new max heart rate of 210 (always thought it was 205) and a 19/20 on the perceived exertion scale and then we stopped.

After this they took me to a wall with a target on it. They took a laser pen and attached it to the side of my head with a bandage like the borg, (star trek joke). I had to point the laser at the center of the target using my head. Then with my eyes closed move my head all the way to the left and then back to the center of the target. We also went up, down and to the right. I missed far to the left every single time.

Then the therapist took me to a room and poked and prodded parts of my neck and asked if it hurt, (yes). Then he checked for mobility. Then he told me he thinks my issue is an upper cervical neck injury.

I followed up with Dr. Leddy who then cleared me to exercise as much as I wanted and to start physical therapy for my neck. If I had PCS still, the workout plan is pretty simple. They have you exercise at 80% of the heart rate that exacerbated your symptoms. I don't know how often or how long -- sorry, I should have asked!

I'm still getting migraines weekly and I am easily overwhelmed in noisy places. Both are getting better with time, but I don't really see how those could be related to a neck injury. Dr. Leddy seemed to think they might.

Could you duplicate this test on your own? Probably. Would it be better to have it done by someone that has seen 100's of people take the test? Certainly. For example, I tried exercise on my bike on the trainer only two weeks ago and stopped after feeling dizzy and light headed. Now I can't figure out if it was concussion symptoms or I just aggravated my neck by getting back on the bike.

Is it worth flying to buffalo? For me it was. I still feel a little crappy, but now I know I can go back to work and normal life without fear of hurting my brain even further. Rest alone is simply not going to help me fix my neck.

I think if you are past the 2-3 week point it might be worth jumping on a treadmill and seeing how you do. You could at the very least measure perceived exertion, heart rate and blood pressure with a friend helping. Or just go by how you feel. I suspect if you have problems still it will be pretty obvious.

Worth noting: the test itself cost $250 and is not covered by insurance.

For what it's worth, these are my long lasting symptoms. Other symptoms went away in the standard 2-3 week time frame.

-- Trouble falling asleep

-- Wake up several times a night, very shallow non-restful sleep

-- Migraines (about once/week)

-- Pressure, sometimes pain in the back of my head and upper part of my neck

-- Sometimes pressure/tingling in the top of my head, or it can feel like a slight headache

-- Vertigo, (in the morning only)

-- Dizzy/light headed (used to be fairly constant, but now gets better throughout the day and is worse in the morning)

-- I am easily overwhelmed. In the beginning being in a room with more than one thing happening at once was impossible. Now I can handle the airport, but a noisy, crowded bar is still too much.

Dr Leddy was good at identifying the upper neck injuries. This is missed in so many cases. I am not surprised he discounted any PCS.

Your current symptoms may not be PCS related but I doubt it. More likely, they are due to PCS but are magnified by your neck injury and inflammation around the important arteries that oxygenate 30% of your brain. This will make good sleep elusive thus magnifying your PCS symptoms.

I bet you do not breath properly when sleeping. This is very common when there is an upper neck injury. Other lower body and extremity symptoms can be caused by this lack of good blood flow to the brain stem and surrounding areas.

You will be likely helped by finding a way to position your head and neck to be supported after you fall asleep. the lack of muscle function while asleep allows the neck and head to fall off into contorted positions. For a healthy neck, this would not be a big problem. For an injured neck, the inflammation that sets in magnifies the neck injury by constricting the arteries.

Try reclining with a focus on straight neck and head position. If when you relax, your head changes position, find a way to support it so it does not move. If possible, try to lay or recline in this position with an ice pack in place. Use the synthetic ice packs that have a mushy form in a sealed plastic pouch. They will retain their shape after they have lost the cooling effect.

If you can fall asleep like this and get some good rest, you have a answer to part of your problem. Getting as much sleep like this will change your life.

I am an expert in sleep positioning. I must have good head and neck support or I never get any good restorative sleep. I have been struggling with this for 12 years. I either have a good to great night's sleep or a miserable one. Nothing in between.

If I wake up struggling to sleep good, I do better to get up and go do something until I can go back to bed and fall asleep in the correct position. My wife knows that if she sees me struggling, she is to wake me up and tell me to go sleep in my recliner. At least she will get the rest of the night to sleep.

Hope this helps.

My best to you.

Thanks Mark. You're a godsend for the PCS community. I'm looking forward to trying a new head and neck position when sleeping tonight.

That is great! I'm glad he was able to help you. Thanks for all the info. it's very helpful.

Unfortunately, my symptoms aren't similar to yours so I don't think I have a neck injury and won't get better that easily, :( but this is great info on the exercise regimen. thanks.

I'm almost, (but not quite :-) disappointed that I didn't get to participate fully in the exercise program just so I could share details and results with everyone. I think it's pretty simple -- you just exercise 80% below the threshold determined during your test and then retest after a few weeks.

I think if you can exercise at all without making things worse it's probably worth it. Even just slow walks outside might be nice. The few times I got on my bike improved my mood quite a bit!

Of course Dr. Leddy wouldn't even see you unless it's been at least 6 weeks, so that's probably a good rule to follow in terms of determining when to start physical activity again.

Mark....I've been sleeping a rediculous amount since I've asked for lunesta. I fall asleep about 10pm and sleep until 7am...then go back to bed when the boys go to school about 9 am until 11 am...and I'm not seeing any difference in symptoms. I actually feel worse all week!

What's going on here? Should I try going back to the chiropractor??

I also think something is going on with my vision lately? Could that be possible that is getting worse too?? I'm getting more facial tingling too!

I just don't understand the increase in symptoms...any ideas here??

upper cervical injury?
 

Hello,

Thank you for posting this thread.

I was surprised at your upper cervical diagnosis vs. PCS.

I am at PCS 18 months now and have never been checked for an upper cervical injury.

Both docs that i went to manually assessed my neck but that is all.

Should there have been any tests done specifically for this?

I would like to check this out. Don't want to think later that I should have done this.

Any advice? Thank you.

The test that chitown did with the laser light was basically to measure range of head rotation. A good PT can do the same or even a chiro. This gives a good indication of injury although it is not the definitive test. You can still have a neck injury while having full rotation both directions.

The six weeks post concussion/injury limit tells a bit about Dr Leddy's concussion protocol. He sounds like the classic sports medicine doctor rather than a fully informed concussion specialist. He has just developed some very good systems for diagnostics and returning the athlete to active exercise and finally the playing field.

wtrpk,

The Lunesta may be helping you sleep but you may not be having complete REM sleep. Or, if you are not getting good oxygenation to your brain during your sleep, the sleep will leave you with less that a restored feeling.

I routinely can take a 2 hour nap after breakfast, especially if I spend some time on the computer.

Personally, I am hesitant to use sleep causing meds as they can mask the true sleep difficulties. My gabapentin does not make me sleep, it lets me sleep. I choose to fall asleep with it when without it, I can't choose to fall asleep.

You may need some serious time sleeping for a few weeks to allow your brain to start recovering. Think of it as if your brain is in debt. Before you can get healing asleep, you have to make up for the debt.

I spent days sleeping early in my recovery. I could easily sleep 16 hours a day. Once I learned to moderate my stimulation, I was able to sleep less and less. It took me quite some time. When I learned that I was not breathing during sleep, my corrections changed everything.

wtrpk,

My neuro checked all my hormones and put me on thyroid meds which helped me a lot with energy, mood stabilization. I was still having a lot of trouble with sleeping, I would wake up many times per night, wide awake and never get deep sleep. He thought my progesterone levels were on the low side so he had me try a small dose of sublingual natural progesterone (NOT the synthetic type) at night.

I was skeptical but agreed to try it and guess what? It helped. I am sleeping deeply without all the waking up. If this didn't work I was going to ask him for Ambien. I know this won't be the answer for everyone but it has helped me significantly with that symptom.

Have your hormones been checked? It isn't that unusual to have them disrupted by a head injury because your pituitary can be knocked off kilter along with your brain. I hope you can find something that will help you.

I have mentioned getting hormones check many times. There is a good referral site for good hormone specialists at https://www.womensinternational.com/..._referral.html

Becca, You can also use progesterone in a cream for your skin. Did he say anything about DHEA? It is the quarterback of hormones. It sort of sets the pace for the other hormones. It is readily available in small tablets. Schiff has the most affordable tables.

The Women's International link above also links to their pharmacy. They have much better prices that most local pharmacies. Otherwise, the natural hormones can get very expensive. Actually, they are not natural, they are bio-identical so they are chemically the same as the hormones the body produces.

Branded or patented hormones are synthetic alternatives that have slight differences from the natural hormone they are trying to mimic. Many bodies do not react to the differences and have undesirable side effects.

I am on thyroid meds already for underactive thyroid. I just recently had bloodwork done and everything was fine (along with mri/mra) surprise surprise.

I'm so sick of going to doctors...but I think something is definately up with my vision. I will post separately about that.

I wanted to know....with regard to the Buffalo exercise program...do you go on the treadmill more than once a day??

I have recently started the subsymptom exercise protocol introduced by Dr.Leddy. The protocol is to go on the treadmill 5-6 times per week. I am not sure if you have access to journal articles but the title of the article is "A preliminary study of subsymptom threshold exercise training for refractory post-concussion syndrome." If you google that you may be able to read up on it a bit more.

Any updates?
 

Does anyone have any updates as to the UB Concussion Clinic? I would be interested to hear what people's experiences have been with the program.

chitowndizzy.. are you still here?
 

Hello chitowndizzy.

If you don't mind, will you please update me with your recovery?
Because they said it was a neck injury... how much of your symptoms went away after the buffalo concussion clinic? Do you feel that everything is related to your neck?
I wasn't sure if you still checked the forum, any info would be appreciated. Thank you!

This is a very interesting thread. Hopefully chitowndizzy still checks this forum. Would love to hear the outcome also.

I am 100% recovered. After the trip to the concussion clinic and the neck diagnosis I went back to work full time and started exercising. All of my symptoms went away in a few weeks. The only thing that is left is I get carsick more easily, but that is also gradually fading away.

Best of luck to everyone.

Thanks for the update. Very encouraging. I went to Buffalo this week and did the tests and consultations. They are one piece od the big puzzle that is a brain injury. I am looking forward to following their advice re exercise and neck treatment. So glad you feel better. That is so encouraging!!!!

Mokey,

Please keep in mind that the Buffalo protocol is designed to get clients back to athletic activity. It has not shown any evidence of lessening or shortening the cognitive symptoms. Their qualifying standards of no head aches and no problems with balance is 75% toward recovery.

If you get good neck diagnostics and treatment, it can be very worth it. Hope you fit their criteria.

My best to you.

Thanks for that comment, Mark. yes, they focus on the physical conditioning....and they do asvocate a whole body approach to healthy brains, which I agree with. They were very clear that I neede vestibular and vision therapy to continue as well as what they suggested. I don't know if i would have gone from a far distance but I was 150 kms away and my spouse wanted me to go, so I did!

I haven't had time to process the trip yet. It all takes time!

I also tried cranial sacral therapy, which some MDs had recommended...not sure about that yet. Will give it another try....as the bills add up!

Best to you.

The cranial sacral therapy has its problems. If you are treated by a skull plate reader, it is hocus pocus. If the treatment is spinal manipulation and it is not too forceful, it can be worthwhile. CST ranges from the extreme to the reasonable. Same goes for chiropractic. I believe in chiropractic but I do not believe in all chiropractic techniques and philosophies.

Buffalo's whole body approach appears to start very late in the post concussion process. Their standard 6 week waiting period allows a lot of time for natural healing to start the healing process.

Mark,

Agree with hocus pocus...although so many recommended cranial sacral tjat I had to suspend my usual scientific mind for the hope of discovering somethng useful. I was hoping for a neck massage but did not get one! it was a bit too light of a touch. Physiotherapy for the neck starts this week and that should be better for the whiplask injury (which was neglected for 15 months because of the focus on the brain!).

We all try what we can. Sharing info is So important,

Just Returned from UB Clinic
 

Saw Dr Leddy 2 days ago. So here's my experience...

The team of doctors and people you see and the tests you do is all comprehensive. It feels like they actually care about helping their patients.

My concussion happened 2 months ago. (softball thrown to the back of the head, no loss of consciousness but felt like **** ever since)

It was determined that I dont have any evidence of physiological PCS anymore. I have no neck pain, my balance is fairly good and I was able to hit 195 bpm on the treadmill.

However I still have bad headaches, head tightness 24/7 , and some anxiety, fogginess. So I'm not sure how they can say that I dont have pcs symtoms. Maybe I dont fully understand the meaning of physiological pcs.

I am cleared to start their exercise program. Heart rate to 150 bpm for 20 mins everyday for a week then follow up with Dr Leddy via email and increase my heart rate weekly. He seems optimistic that following through with the exercise will have me better in 4-6 weeks.

I'll post updates here. Reply or message me for any questions regarding the clinic.

Re: Leddy Visit
 

It's been over one week since I saw Dr Leddy and started the exercise rehab program. I honestly feel like I'm starting to get better. This could be because of the exercise or because I feel like I am proactively fighting this post concussion now. Either way I recommend the exercise regimen.

I still have headaches everyday but I'm hoping those too will pass.

I'll keep this thread updated with my progress.

Glad its going well. Please keep us updated. Thanks

Ah HA! Just ran across this old post by you, Mark. And I read more about the cognitive effects of sleep deprivation. I sleep on my side, and if I have a neck injury, which is already putting pressure on arteries, then it would only be exacerbated by sleeping in this position. So I'm not getting good sleep (makes sense, because I have large dark circles under my eyes, despite "sleeping" for 10 hours every night), which is causing this "fog".

This is starting to make more sense for me...