Hello.

5 years Post Concussion. 29 year old male.

My family has finally finally agreed to let me try neurofeedback.

This would be my first attempt at real treatment.
My family has figured out that "thinking happy thoughts" and "just getting back into a good 9 to 5 routine" is not working.

Only took 5 years.......(not bitter at all )

Does anyone have any suggestions for good practitioners in North America?
Either Canada or the United States, I have no options in my country.

Anyone have any positive or negative feedback or experiences to share?

I know I should ask others who have done it but I'm also afraid to ask as I don't want my hopes dashed on the rocks.

I haven't felt hope in so long, it's very frightening that I might get some only to lose it again. I don't know if I could take that.

What symptoms are you hoping to treat ?

What kind of neurofeedback are you considering ?

At 29, why does your family have to agree ?

Where do you live ?

Some neurofeedback therapies can take weeks of treatments to see any changes, it that happens at all.

Heya Mark.
My family would have to agree because I cannot work due to my injury and am therefore broke. I would need someone to pay for it. I would have to travel abroad and stay somewhere which was simply financially impossible for me, even at the best of times.

And by family I really mean father, both my sisters are married and taken care of.

My family has the means, just my family would not let my try anything (until now) because they couldn't see my injury. So I've been cast aside as "lazy" and "emotional"

They wouldn't read or learn about concussions and my father's only suggestion was "just get back on a good work routine and it will all go away - think positive"

Naturally, this would simply aggravate my symptoms until I couldn't get out of bed

I've tried explaining till I was blue in the face but they just didn't want to listen or believe it.

I can still hear my sister asking with a nasty tone
"So...when are you going to get over this concussion thing?"
That was like 9 months post injury. Around when I first started posting.

November 28th 2016 was my last "good day"
I've been bed ridden ever since.


That being said...
If I didn't have my family to fall back on for basic support (food, shelter, etc) I would have been dead or homeless a long time ago. My old man will get me soup or frozen food from the food store but otherwise will not spend any time with me.

I live outside of the US in a country with very poor healthcare, unless you get shot or stabbed.....we are very good at treating those conditions.

Symptoms:
can't exert myself at all
Fatigue (don't confuse this with somnolence....I'd pay to have that! No symptoms when I am asleep!)
Insomnia (yes, I've improved my sleep hygiene, no effect)
Sensitive to light & sound
Extremely sensitive to even the most minor of bumps.
Foggy thoughts
Strong lability when symptomatic
Impulse control: I can't keep my mouth shut, I don't know if that's a symptom of PCS or not having anyone else to talk to for the past 2 years.


I was on your vitamin stack for about a year and a half but could no longer afford it and it didn't seem to help me much.

I went to a psychiatrist for about six months until I realised he didn't believe me and was just taking my money.


What symptoms am I hoping to treat? I'll take anything at this stage but if I was given the choice it would be the "sensitivity" to the jolts and stimuli. If I could "freeze" my baseline symptoms then I feel I could live a somewhat normal life but I can't.

If I push against the PCS, it pushes back, hard, until I'm all the way back in bed.

Twice I've come close to ending it all. I'm just to much of a coward to actually do it.

What kind of neurofeedback.....I don't know. Hence why I'm asking around here if thats allright?

I think you would be better off finding a clinic that will take you as a patient to do some diagnostics and assessments and possible treatment. If you have any resources for places/family to stay for an extended period like Boston (Mass General has a concussion program), Pittsburgh (UPMC), Buffalo (University of Buffalo) or near any of the big teaching hospitals, that would be a start.

I've kept up to date with the things Dr. Leddy has done at UB. Got pretty excited and even let myself get hopeful.

When It comes to Buffalo, well I called them and was shuffled around by secretaries until they put me on some answering machine with instructions to briefly describe my symptoms and leave an email address. I did so.

About 2 or 3 days later received this via email


"In response to your telephone inquiry about the concussion clinic at The University at Buffalo, you are not a candidate. Thank you."

I hope you guys at UB read this! Awful way to respond to people looking for help!


Pretty ****ing poignant response to give to someone who is
A) Sick
B) Willing to pay

I guess I can email or call Pittsburg and Boston. I'll have to restart the entire conversation with my old man.


Someplace out in Winnipeg started doing the Buffalo Protocol but I am not a candidate because

A) I do not reside in Manitoba (I do hold Canadian citizenship)
B) Am OVER 18 (youth sports injuries only)
C) Even if I did pay, I'd be differed behind the provincial non paying youth. Said they couldn't guarantee me a spot. At least they were nice on the phone though.



It baffles me that there are places offering treatment but with some strange criteria on how to receive it.

Many clinics focus on return to play and athletes and patients who are closer to the original injury date.

Have you checked with the Ontario Neurotrama Foundation ? They have affiliates that may be able to help.

I don't remember right now but there is a large concussion program at one of the Florida hospitals.

I seem to remember. You are in the Bahamas or Barbados or ? Aren't you.

The Bahamas - I was a pilot once - you PM'ed about Bonanzas' and GUMPS
Back then I believed 'It' would all go away in a few months. I now know I'll never be a pilot - or anything for that matter.

I'm hesitant to deal with Canadian Health Care - it's a bit too much of a circus that you can't simply pay your way through - government is too involved. The US is simpler - capitalist society....you get what you pay for and if you don't like it........leave and find another.

I've looked around at all sorts of treatments and most of them seem like snake oil....there's that one quack injecting steroids directly into people's brainstems. He patented it in an attempt to give it some legitimacy.

Someplace in Guelph that sticks magnets to your neck......seems quacky

The Buffalo Protocol seemed to hold some weight but alas, they only want to treat the few.

In year one I tried a chiropractor but he only got angry at me when I told him it wasn't helping me.

Recently
Somebody on reddit.com/r/TBI posted:

Washington Post Article

This silly article gave me some hope that it might help me.

I thought I should ask others thought before jumping down the rabbit hole. I will only have one shot at this.

My old man is not going to pay for every little strange treatment that pops up. You shoulda heard the arguments "The Ghost In My Brain" caused.




Father: "HOW CAN FUNNY GLASSES HELP YOU!?!?!"

Me: "I don't know, but isn't it worth trying??? This endless attitude of "just work it off" is NOT WORKING!"

Father: "Whenever I'm not feeling well, I just accomplish something and I feel better"


If I survive long enough until his health starts to fail from age, I WILL MAKE HIM EAT THOSE WORDS.





I'll give this thread a few days - hopefully someone will chime back in with positive or negative experience with neurofeedback.
Otherwise, I'll ask you for a suggestion as to where to go.

Not that I'm hesitant to take your advice, it's just (and I know it's childish) part of me wants to believe that this might actually work.

The problem with neurofeedback is it is a broad term. There are many different types. Lots of snake oil and some worthwhile for specific symptoms. Dr Walker in Dallas TX has had some success but it takes weeks.

If you have $10,000 to risk, Cognitive FX | Premier Cognitive Imaging and Therapy may be worth a try. I am skeptical but...... They are in Utah by Salt Lake City.

Is the Guelph place http://www.mmtrphysiotherapy.ca/ ?

Yeah - that's the one in Guelph. Just didn't make much sense to me.

Looking around the forum, I'm starting to see what you mean by "broad term"

Cognitive FX USA would be a tough sell.......
Why do you suggest them? Has anyone posted good results?
I get nervous when a group says "Results in 1 week!"
Do you know what their approach is in a sentence? It's very "marketing" style of text on their page.


This is all starting to feel hopeless again.....

There is Carrick. It has a hit or miss result. Some get a good result. Others get no benefit.

Cog FX would at least do some fMRI imaging to confirm a brain that is out of balance. But, they are full of marketing hype. I don't like that either.