Great recovery blog!
 

This guy had the right idea on how to heal. Good recovery blog.

http://postconcussionsyndromerecover...ome-story.html

This blog is a long read. Likely too much for many trying to recover.

It is actually written by a man. I bet he and his insurance company likely spent close to $100,000 for all of his treatments and travel. Everything he tried, whether it worked or not has been suggested and used both successfully and unsuccessfully by people on NT. UPMC, Buffalo, neurofeedback, neuro-ophthalmology, PT, vestibular, etc. One needs to find the right mix of these diagnostics and therapies. Remember, every brain injury is different and will respond differently.

An important part in his blog was the advice to stop tracking and grading symptoms. A more general approach to dealing with the pattern of symptoms and improvements reduces anxiety.

I'm surprised there was no mention of B-12, folate and D-3 to help nerve fibers heal.

Isn't the part about expose and recovery contrary to what is preached here a lot?

I also received similar advice from the head of the concussion clinic at Dartmouth. It seems the brain needs some stimulation and exposure to uncomfortable settings or it will readapt to its new way of life.

Yep
 

Seems like everybody and anybody who has recovered has had to expose and recover. Rest is best at the start but, not sure how it's going to fix anything if you get stuck like this, vestibular therapy, vision therapy, graded excercises, and slow exposure to your triggers plus staying positive seems like the key to healing.

As much as I love the vitamin regimens, they haven't really done anything for me other than change the color of my pee. For me, personally the depression has hurt, screen time is my other big problem, I need to start going out of the house. Start on the buffalo protocol and stop searching for answers on the internets.

Mark his dedication is what sets this guy apart, he follows all of his doctors advice religiously and it seems like it paid of. Doing therapy all day everyday for 13 months in a row, while staying optimistic. I have a feeling that most people on NT have not done that. I know I haven't.

Qtip, how and which part of your brain did you injure? My main trigger is screen time and it's really frustrating and depressing. Especially in winter, when there is literally nothing to do. Concentration is a problem also, so that pretty much rules out any other activities. It's the nightmare that won't end, but I've kind of got used to living in it. Weird as that sounds.

Expose and recover is controversial for PCS. I think it's value is mostly psychological, not physiological. Realizing that we can be exposed to a trigger and recover and survive is empowering.

To me, the valuable part of expose and recover is short exposures. I know my limits. I don't have to avoid the exposure. I just need to know I am approaching my limit of the exposure. It is not a formulaic time. It is understanding when my brain is starting to be negatively impacted. And, I don't look for that negative impact. I am just able to notice it when it happens. My wife can recognize it in me, too.

My sound sensitivities are as bad as they have always been. I am just better at tolerating them by not adding to them with an anxiety response. Our psychological response can feed a physiological response. What might have been an annoyance becomes a crisis if we let our mind get away.

Dr Norman Droige's book is full of these 'recoveries' that take hundreds of hours of disciplined therapy. Most do not have the time, resources, or concentration to maintain these levels. The intellectual OCD it takes to keep up with these is exhausting in itself.

That's my blog!
 

Thanks for posting my blog here. I had so many unanswered questions during my recovery and very few resources and I'm happy to see the things that I learned getting out, and hopefully to the people who it can really help.

Three months ago I participated in 6 week concussion clinic that uses this emersion philosophy (expose yourself to everything that bothers you). The program I was in was very similar to what was described, and included vestibular, occupational, physical, psychological, and neuropsychological components to it.

I've been reluctant to post my personal thoughts as I haven't been doing very well. Keeping this short, this emersion philosophy did not work. At all. Outside of doing some physical activity and talking to people other than my family, this program had an escalating and wholly negative impact on me. By the end of the program I was an utter mess. I was back and continue to need narcotic analgesics on a daily basis, I had increased anger and frustration problems at home, nausea and disorientation issues were back, sleep disturbance became the norm (again), and, worst of all, my ability to tolerate any kind of stimulation was significantly diminished.

Fast-forwarding 3 months post clinic, things have not improved. I am more sensitive to noise and conversations, and my constant headaches are worse and more easily intensified.

So, when I see clinics and people touting these success stories, I think it's very important to remember that every concussion is unique. It will work for some, and it may not work for other. Whilst I'm glad that I tried it and saw it through, I cannot say it was beneficial to my recovery per se.

That really sucks to hear MicroMan, I hope things turn a corner for you soon.

There's got to be some kind of predictor for how a particular concussion case will respond to these two "camps" of concussion recovery, right? Absurdly complicated, I'm sure, but if you had enough detailed histories and outcomes, shouldn't fancy statistics be able to pick up something? It seems clear to me that both camps work for some, but not for others. There's gotta be a reason why.

The researchers have been confounded by the lack of a statistical pattern. They cannot even find a way to grade impact force or symptoms immediately after the impact and connect them to recovery timelines.

What they are starting to see is a possible genetic component. But, they have not yet developed a treatment to the genetics-based response to the impact. Nor have they found an affordable way to identify that genetic component.

Well with the plummeting (relatively) cost of sequencing and the advent of CRISPR gene editing technology, perhaps someday they'll have an effective treatment. That someday is a ways off though, here's to hoping we'll all be much better by then!

The problem is even if they fully identify the genetic issue, monoclonal antibody therapy costs a small fortune. Large market products (MS and other autoimmune conditions) can cost $1200 to $8000 per month and more. They need to be administered within the first 12 hours or less. No medical funding system will support treating every concussion with such an expensive treatment.

I don't know much about monoclonal antibody therapy, but CRISPR is a new genetic technology that is in the process of revolutionizing research, both basic science and disease genetics research. It's a biomolecular system that can target with exceptional precision any DNA sequence and edit it. We're a far cry (both technologically and ethically) from using it on adults, but maybe sometime in the future.

http://www.scientificamerican.com/ar...use-in-humans/

Hi MicroMan,

Very sorry to hear the immersion program didn't work for you. I'm the guy who wrote the blog at the top of this thread, and I totally agree that what worked for me, won't necessarily work for everyone. Every injury is different. My hopes and prayers are with you! I know how bad it can be.

-Martin

Danny,

Thanks for reading my blog. I love your comments. They're right on the money for how I recovered (rest first, then expose and recover, etc.). The vitamins did nothing noticeable for me either.

For screen time, the big thing for me was finding an ophthalmologist with a clue, lowering my glasses prescription, giving my nerves time to heal (6-7 months), and using the string and beads (brock string) for my severe convergence insufficiency. And even with all of that, my new normal is that I have to wear computer eye glasses and I never had to before.

-Martin

Doozer,

Screen time was just the worst for me originally. For about 6 weeks or so, I had to rest my eyes every other hour for a full hour. It's depressing and just really hard to deal with.

My opthalmologist (Dr. Lowell Singman) said my nerves were yanked bank and forth and stretched during my roll over car accident because our brains are sort of floating but they are wired to our eyeballs, along with a bunch of muscles. So during the accident while my brain was bouncing around in my head (so to speak) it was yanking on the muscles and nerves.

Anyway, his solution for my vision problem had several parts. First, I had this terrible headache and pain that radiated from behind my right ear over my head and into my right eye. This was actually occipital neuralgia and I had to go to a pain doctor for that. Luckily, I was able to get better with a few treatments (a steroid and pain med injection couple with similar topical cream). Controlling the pain was crucial. Then he lowered my eye glass prescription so that I would put less pressure on my muscles. Essentially, things were blurry for a while and I wasn't even squinting to try to see things clearly. I just got used to things being blurry. Then I started a home program for my convergence insufficiency. The brock string is what worked best. So all of this plus a lot of time is what helped me get back to normal. I wound up having a new eyeglass prescription every 6 weeks until I was back to normal. I guess this was happening as my eyes were healing. The glasses would just stop working or start giving me a headache. The changes in prescription were small and drove the optometrists crazy, but they made a big difference for me. And then one day, the prescription was about what I had before.

Anyway, that worked for me, but everybody' injury is different. Stay strong!

Hi Mark,

The guys at UPMC have a solution for the anxiety. If they think that's a problem, they put you on Zoloft so you can take the anxiety out of the equation. I was on it for 6 months and I'm sure it helped, though for me by the time I got there the only issue I had not tackled was my very subtle vestibular problems, so I might not have needed it.

My vestibular problems, by the way, were not at all apparent to me and they had been missed by every other doctor. The same was true for my lingering convergence insufficiency. Solving those two things took me from 50% better to 100% better (new normal). And that's why it was a mystery to me and other doctors for so long as to why I wasn't fully recovering.

Anyway, looking at it now in hindsight, I had five or six serious injuries at the same time, all of which were hard to diagnose and treat. Each injury was not healed until I found the right doctor. This meant trial and error on my part (trying different doctors) and not taking every doctor's word as gospel unless he or she actually fixed the problem. And I wasn't fully better until all of the injuries were addressed.

Microman,

One other thing comes to mind here. For me, expose and recover worked, but if I had tried it at the beginning or before I had other problems solved, I think it would have been a disaster. I tried the "buck up little camper" approach early on and each time I wound up in a worst state and each of those experiences made it more likely for me to stay holed up in my bunker (bedroom) with the lights out.

But after I had solved my headache problem (occipital neuralgia) and my eye problems, which took about four months and a trip to Johns Hopkins, I think I was then ready for expose and recover because my remaining symptoms (though I didn't know it at the time) were mostly vestibular and psychological (mild PTSD?). And those respond well to expose and recover. In fact, I think for those symptoms, expose and recover is the answer.

Anyway, those are my 2 cents...

Best of luck on your road to recovery!

Mrico:

Could you explain what you mean by your convergence insufficiency and vestibular problems were not evident to you? How ere they diagnosed (specifically)? What symptoms were you facing before they were diagnosed? What were the treatments?

Thanks
InjuredButRecoverin'

Hi injuredbutrecoverin,

For convergence insufficiency, I had gone through a computer-based therapy and thought I had taken care of that. But when I went to the UPMC concussion clinic and was re-evaluated, I still had trouble. They gave me the bead and string system (brock string) to do at home and that worked much better. A month later on my follow up, they didn't detect any CI and I was feeling much better.

As for the vestibular problems, I never felt dizzy or had motion sickness. In fact, I was tested at Johns Hopkins by a great neurologist (who did not specialize in concussions) and he gave me a clean bill of health in terms of my vestibular function. But then at the UPMC concussion clinic, where all they do is concussions, a physical therapist and a vestibular therapist were both able to make me dizzy in certain weird situations, like during different step aerobics moves, walking backwards, and shaking my head side to side while looking at the center of a checkerboard image on the wall.

So it turns out, I did have vestibular problems, so they gave me an at-home program to follow in which I had to keep making myself dizzy twice a day. Eventually, my brain re-wired itself and those things didn't make me dizzy anymore and that is the main thing that helped my last major symptom clear, which was fatigue.

-Martin

Hi Martin,
Could you please explain what you mean by you still had CI? When they measured your convergence after the computer program you were able to converge at nearby distances but the folks at UPMC did the same test and found you could not? If they did a different examination, how was it different?

Regarding vestibular stuff: what home exercises did they prescribe to you? I understand the looking at a letter and shaking your head to restore your vestibulo-ocular reflex. What else did they do to evaluate you and treat you?

I'm trying to determine if the evaluations I have undergone are sufficient or if it's worth a trip to UPMC.

Thanks

Hi injuredbutrecoverin,

The computer program I was on for my convergence insufficiency was an at-home program. I went through the full thing and "passed it" but I was never evaluated by a doctor again until I went to UPMC. They didn't use a computer, they just stuck a pen in front of my face. They also moved it around and did fast motions (if I remember correctly) and that's how they decided my convergence insufficiency was still not good enough. Also keep in mind that although I don't remember the number, it was originally really bad. So after the computer program I was much better, but I was still not really fully back to normal. So I noticed a big improvement and thought I was better, but I wasn't.

As for the vestibular stuff, it was a 1 hour evaluation with a physical therapist and a 1 hour evaluation with a vestibular therapist, so it's hard to remember everything they did.

For physical therapy, it was a series of exercises that involved a lot of going up and down and turning my head from side to side and walking in different directions. Then I was put on two different cardio machines. Each step of the way they would ask how I felt (dizzy? rubber band around the head feeling? nauseous? etc.). I wish I could be more specific.

The home exercise routine was 2 different kinds of step aerobics, one in which I was just going up and down and another where each time I had to touch one side of the floor and then the other. There were also lunges, Russian twists, running, and probably a few more I can't remember.

As for the vestibular, I was checked out by 2 people and I really can't recall everything they did. They checked my convergence insufficiency. And they did the test with the checkerboard on the wall. I had to do the brock string at home and the checkerboard. There were also some other things I did while lying on the floor, but I really can't remember how that went at the moment.

I'll have a look around and see if I still have the documents they sent me home with and post the information if I find it.

Hope this helps!
Martin

Hi Martin,
Thanks very much for responding. if you do find it, posting it would be a great help. It sounds somewhat similar to the protocol I underwent but definitely not exactly the same. I just spoke with them today and am going to see if I can make it over there but there are always questions of logistics.

Again, thanks very much for your help.

Hi Martin,
I know you have covered this on your blog. Once you were cleared from Occipital Neuralgia, Did mental fatigue became the only symptom as a result from convergence insufficiency and vestibular problems? Or did you experienced your occasional tension headache? or other, etc.?
I believe I have the same problem, and they have not been properly diagnosed. Thank you for helping us!

any chance you can explain that buffalo protocol, or give me a better understanding, it really is alot for me to read at this time,

my understanding exercising about 20 minutes, monitoring your heart rate to a level where you feel somewhat uncomforatable with your symptoms ?

The Buffalo Protocol does not focus on time. It tracks heart rate. When you find your symptoms threshold, you stop exercising. Next time, you exercise to a heart rate that is 10% lower than threshold. Stay at this lower heart rate for a couple weeks before increasing your heart rate target.

Hi Javier,

Once the occipital neuralgia was gone and my vision was back to normal I could half way function and returned to work part time. I was actually in my office resting every other hour. And yes, I'd say mental fatigue was the main symptom that remained. What I was told is that it was caused by lingering anxiety from mild PTSD and my vestibular problems which made my brain feel like I was always falling a bit even though I did not notice any balance issues.

I don't think I had much in the way of headaches, but it took a while for the occipital neuralgia to fully resolve - probably 4-5 months before I was totally off of the pain cream I was applying to the affected areas (where it hurt on my head) and my regular dosage of etodolac and Tylenol. After that I don't think I had headaches associated with the concussion. And the pain cream that I got at Hopkins was diagnostic. Once I applied it, the headache went away miraculously - for a bit. That told them that it was very likely occipital neuralgia and that the injections would probably help.

Hope this helps!

Hi Sohitd,

Here is the summary from my blog post. I've shortened it as much as I can. And keep in mind, I didn't start it until almost 3 months after my concussion, after my vision had started getting better and my headaches were under control and on the mend.

____________

1. First I had to get a baseline test for myself, so I got a polar heart rate monitor and a used treadmill from Craigslist for $250 (yes, I am cheap!) with an electric incline option. This is important, because as I got more in shape, I needed a major incline to get my heart rate up. Also, keep in mind that the heart rate monitors on treadmills are mostly worthless and inaccurate (the kind where you hold onto a bar to get a reading, etc.).

2. My baseline on my first time out was 150 BPM, meaning that at that heart rate I started to feel the "rubber band around my head" feeling and got a little dizzy. So I set my target heart rate at 120 for 20 minutes (80% of max). To get there, I would walk for about five minutes to warm up, then increase the speed and start jogging. Once I saw my heart rate at 120 BPM, I would start the timer and go for 20 minutes. I'd have to slow down every once in a while and tried to range between 115 and 125 so that my average over the 20 minutes would be about 120.

3. To keep my BPM at the right number, I wouldn't increase or decrease the speed usually. I'd just change the incline. That affects your heart rate a lot more.

4. My schedule was to do this twice a day, six days a week.

5. The recommendation is to re-evaluate yourself after about two weeks, find your new baseline, and set a new target BPM to get you out of your comfort zone.

6. My goal for increasing my BPM wound up being to go up by 1 BPM every fourth day (e.g. 3 days at 145, then 3 days at 146). In retrospect, the big jumps suggested by Dr. Leddy would probably be a better way to go - more like jumping from 120 right to 130 or 140, etc. That would have really gotten me out of my comfort zone and made me feel bad, but possibly would have been more effective. I can't say for sure.

7. After about 3 months, I made it 80% of my max suggested heart rate (BPM). Dr. Leddy suggested I go to 90% of my baseline rather than 80% since I had not fully recovered. I was 40 at the time, so it was 180 BPM * 90% = 162 BPM.

8. By January, 2015 I was at 162 BPM. But I still wasn't all the way better. By mid-February, I was at 166 BPM or 92% of my total max. But, again, I still wasn't all the way better.

9. In the end, doing the Buffalo protocol on my own without direct supervision from Dr. Leddy or anyone trained in the Buffalo protocol, I wasn't able to fully get better. But it did help me a lot and I did see progress, which is really helpful because otherwise, things can seem hopeless.

10. Once I decided I had gotten all I could out of the Buffalo protocol, I started looking for other options and that's when I found the UPMC concussion clinic and that is where I got fully healed.

Hope this helps on your road to recovery!
Martin

thank you appreciate that!,

Thank you Martin!

Hi Martin,

Can you please help the few of us who are considering going to UPMC in the near future, What would be your recommendation’s on what to expect? Like:

How long was the first evaluation? One day?

How treatment is managed if you're from another area or from another state?

How much was your initial deductible or total cost? At least if you can, give us a ballpark, so we can have an idea of the cost. That would help us a lot.

Feel free to add any other suggestions.

Thank you.

I can tell you that your deductible will be based on the health plan you have . Many plans will not cover out of network evaluation and treatment like UPMC. Some plans have a stricter definition of 'medically necessary' than others.

Some plans have a very high deductible for out of network care compared to local, in-network care.

So, your first effort should be to read your Health Plan Benefits manual. Pay attention to medical care vs mental health counseling/therapy vs physical/occupational/vestibular therapy. A Neuro Psych is not usually considered medical care. The deductibles and co-pays can be higher and have a limited benefit amount.

It can get very disturbing to see bills after the fact when one did not plan ahead. Even planning ahead can leave one in a mine field.

Totally agree with you, Mark. It is complicated to calculate the cost of health care, especially for therapy, etc.

You can still manage to get an estimation of the cost from a former patient. What we all know is that UPMC must be expensive, but how much?

Hopefully we won’t get sticker shock with the answer…lol

I suggest you call UPMC and talk to them about the common services and treatments they provide to someone with your range of symptoms. They should be able to give you the CPT (procedure) codes. Then, you can call the billing department and ask what the fees are for those codes.

Many never see the direct costs, just the part they need to pay. Plus, the costs they may see are the 'list prices' that can be twice what the real amount they accept as payment are.

I've been dealing with three surgeries in the past 4 months and making sense of a bill takes an accounting degree. EOBs (Explanation of Benefits) will show the gross (list price) amount, what the insurance paid and the amount owed by the insured. So, you need to add up the amount the insurance paid and the amount the insured owes to get the amount the provide will likely accept.

If your insurance is not good, you can check out the prices Medicare pays for the various CPT codes and expect to have to add 60% to that amount to get to an amount they will likely accept. There are health plans that do not use networks, that use this Medicare plus 50, 60 or 70% price structure to pay providers. Here is a link to the CMS fee schedule. Click ACCEPT and the next page has a CPT based fee lookup. Choose all modifiers. You can look up your locale and enter it, too. This can give you a starting point.

Called today a few times with no luck and left a message. I know the drill with clinics, so I know it will take patience and a little luck to talk to the right person.

Nevertheless, I will follow your approach. Thanks.

Mark you had three surgeries? Or a family member? Wow! Either way, I hope everything is ok.

Two surgeries for me in October. A nasal rebuild (deviated septum and turbinoplasty) and a shoulder scope and repair. Both went fine except the shoulder is still a problem. Sorting out the nasal bill was easy but cost me $200 more than I was told it would. The shoulder surgery bill was a mess.

My wife had one surgery in January and is headed for a second surgery next week. Had to change health plans to get the specialists she needs. Prior health plan refused to refer her to an out of network specialist. Fortunately, she had an open enrollment period that ended Feb 29. We took advantage and got her better coverage.

So, I have become an expert at understanding how providers bill and how insurance companies pay. I also learned a lot about how insurance companies define medical necessity so they can avoid the specialists.

Wow, thank God you seem to be ok after all those health challenges. I will keep both, you and your wife in my prayers.

You’re definitely the go to guy.

The deviate septum was likely from my concussion bike accident in 1965. It was causing trouble with our Idaho dry humidity during the winter (nose bleeds, etc). Now, I can finally breath without restriction. The shoulder was an accumulation since the 1970's and an injury 2 years ago just pushed me to get it fixed. At this point, that was a mistake. I was better before the shoulder surgery. Maybe more time will help.

Thanks for your prayers. We need them.

wow..No problem!

Hi Javier,

Yes, I can help with this.

-------
How long was the first evaluation? One day?
* Yes. It takes about 5-6 hours to see everyone. Bring a lunch!

How treatment is managed if you're from another area or from another state?
* I was given an at-home physical and vestibular therapy program to follow. I am attaching the physical therapy instructions I got. I don't have a copy of the vestibular. But keep in mind, that every concussion is different and these exercises might be totally wrong for you. It should give you an idea though.

How much was your initial deductible or total cost? At least if you can, give us a ballpark, so we can have an idea of the cost. That would help us a lot.
* I paid about 3 copays, which for me were 35 each. I had already met my deductible for the year, so that was all I had to pay. When you call them they will ask for your insurance and make sure you are covered. Between them and calling your insurance company (my wife did it for me because I was in no shape to figure that out), you should be able to figure out your total out of pocket costs.

Hope this helps!
Martin