[CenterIce]

Hi,

I sustained a concussion last year and I am still having great difficulty. I am finally turning to "concussion" doctors (as opposed to my neurologist with limited knowledge about concussions). However, I haven't met one yet and I have been reading mixed reviews about the neurologists at the facility I am going to. Some reviews are very negative.

The name of the place I am going to is the Cantu Concussion Center in Concord, MA. I think they opened about 6 months ago. They are affiliated with Emerson Hospital.

I'm looking for someone that is willing to take the time to listen to my experience and offer quality advice/care. My current neurologist never gave me handouts or guidelines on how to heal and protect myself from further concussions. The most helpful advice I received was from a member of a Brain Injury Association of MA support group who also has PCS.

Thank you for your help. Any advice would be great.

[Mark in Idaho]

CenterIce,

Welcome to NeuroTalk. Can I assume you concussion is from hockey ?

Dr Cantu's clinic is one place. There is also one at Mass General and Beth Israel Deaconess Medical Center. They may be closer than Concord.

What difficulties are you having and what have you been doing to try to help your recovery ?

[CenterIce]

Hi Mark,

I play pick-up hockey in a rink (I always wear full gear). However, this accident happened when I was simply standing still on the ice.

I had all my weight on one leg/heel (bad idea) when I was explaining to my nephew how to stop. I upended myself, landed on my back, and my head whipped back and hit the ice with tremendous force (I was wearing a helmet).

The issues I am having vary from difficulty tolerated more than one thing at once, headaches from too much computer use, driving, loud noises (including just the sound of my own voice talking), lights (over time), among others.

Recently I had an awful setback after getting caught up in a long mountain bike ride. The physical stress made things worse than they were when it all started last March. It's been a very difficult eight weeks now. I was making good progress but was never warned that such a setback through exercise could happen.

I tried Beth Israel but the answering machine did a loop with a person calling back and then me having to get the same number again.

I'm actually looking for recommendations for a specific doctor if you know anyone. It just seems to be a crap shoot out there.

Sorry for the long answer. It's taxing or me to type like this and there's no doubt I'll pay for it later. I need to budget my time to prevent the headaches at night that prevent me from falling asleep.

[Mark in Idaho]

The YouTube video series called "You Look Great" is done by John Byler, a Boston resident from what I remember. If you watch it, he might say who he used. I haven't seen it in over a year. https://www.youtube.com/watch?v=x9Xso4qGdlI

Spaulding Rehab also has a concussion program and they have satellite facilities. 1.888.776.4330

[Doozer]

The U.K doesn't have any of these specialised concussion clinics. It seems like our national health system is practically useless for any problem in which you are not actually dying. If you are lucky enough to able able to afford private health care here, you may find a specialist with an interest. To be honest, the U.S seems to be streets ahead in terms of offering diagnostics and treatments for concussion. I've been to many Doctors, and it's embarrassing how little they know, or what to do with you.

[Mark in Idaho]

Doozer,

The US has jumped onto concussions because of a huge lawsuit against the National Football League and NCAA and other sports entities in the early 2000's. The work of Dr. Bennett Omalu, the Concussion Legacy Foundation, and Dr. Kevin Guskiewicz at UNC/ Chapel Hill have kick started better understanding of concussion. Plus, a number of companies have been selling computerized neurocognitive testing systems and include teaching their standards for concussion identification, managements, and return to play. ImPACT, CNS Vital Signs, Headminders and a few others. There is an industry developing with a strong profit motive at making money off concussions.

In the UK, the only entity that is starting to be concerned about concussions is rugby. There may be organizations that can direct you to a specialist that serves the rugby industry.

[CenterIce]

Thanks Mark. I'll check out the video and Spaulding.

Doozer, sorry to hear about the health coverage challenges in the UK. I hope you find a specialist when you need one.

[Doozer]

I do have a lead which I am going to follow. It involves me getting refered (again) by my gp to a specialist who deals with the rehabilitation of head injuries and cognitive function. He's based in a specialist hospital in London, which luckily I don't live too far away from. The down side is that it will probably take many months to actually get an appointment. And many more until that appointment. But, it's better than nothing.

[CenterIce]

Hi Mark,

Thanks again for pointing out J. Byler's videos. They were interesting and I could relate to his experience on many levels.

One thing I couldn't figure out is why YouTube removed part 6 (the last part) of his videos. I came across a Vimeo link he posted on a Facebook page somewhere where he posted the full video.

Poor guy, though. As of 2012, according to his FB page, he was still having terrible setbacks. It is at that time that he posted that he will stop posting on his page because of his difficulties. However, I do see his comments which are more current on Youtube videos.