New Game Plan!
 

I have been trying and trying to come up with a game plan to get out of this PCS. But rest and more rest and drawing and excercise and eating healthy and then getting anxiety, spending too much time online, losing hope, smoking a cigarette , crying about my life, I was so happy, so happy, how can I be so sad, so sad? Its getting a schedule that has been so hard, no job, aimlessness, no discipline, pain....god I have failed at trying to recover... really I have. I always think it might be too late to start trying everything I say I will try.

Whining, crying, whining, doing nothing, Internet, research, anxiety. This has got to be one of the hardest things to deal with. The medical system says go figure it out yourself...At least people with more severe injuries get to go to rehab. THere is no rehab, we are going crazy and there is nothing to do but wait. The anxiety builds and spills all over me, the ringing rings. THe thing I realize is that I need care, everyday care, anything to focus me on my recovery.

So here goes...my new crazy game plan. 3 months of intense rehab....I am going to Colorado, gonna do 40 hyperbaric dives, while doing these dives I will do three accupuncture sessions a week and will see an upper cervical chiro to readjust my neck. I will ice my neck, do vitamins, eat healthier than all the people on this planet. My thinking is that placebo or not during this care my mind will be in the mode of healing. I know hyperbarics increase wound healing so it must have some benefit. Doing everything else together will give this the best chance to work. Heck being in that state of mind will promote healing.

Than I have one month of wait and see the results of the dives, I will continue accupuncture and upper cervical work till than, and then I have 40 more dives. 80 dives, acupuncture, upper cervical chiro, vitamins, yoga, meditation, and hopefully some sort of improvement. We can't stay like this forever, can we? Good luck on your recoveries, the great thing is that that 80 dives are costing me only $4000 because I got helped by a non-profit. I will spend another 2 or 3 on acupuncture, chiro, and food and lodging. So it will be under $10,000 for this intense rehab, lets see if I am burning money or if I am going to get better. I will give you all an update after month 3 on how it all went. I am at 9 1/2 month mark, I am better but nowhere near recovered.

Based on advice given by a brain injury rehab specialist at our Brain Injury Support group meeting last month, I suggest adding one more thing to your plan. Accept that this is the new you. Then, work at the other protocols as was to improve the new you. Rather than constantly looking at yourself as less than you were, look at yourself as injured/damaged and making an effort to improve. Your brain needs the reward of seeing improvement, even if it is a little bit. It does not need a constant "When will I get the old me back." Positive emotions will cause a release of dopamine. That is helpful to the brain.

Do you have a plan for occupying your time between treatments ?

My best to you.

Great Advice!
 

I have been working on that! This is the new you! This hte New You! Its sort of like a mantra but it is so hard for it to settle in. Yes, this is great advice, following this advice, accepting, moving forward, controlling emotions, if someone can figure out how to do that in the first months of their injury they probably see a much better recovery.

Me on the other hand being a competitive rock climber, world traveler, just married scuba diver. The emotions destroyed me, they destroyed my soul. I told myself, that if all my passions are gone than who am I? Do I even want to have a passionless existence? Passions is what defined me! I wish I could have put that energy into trying to get better, instead I gave up, I used the computer till my head hurt, smoked cigarettes, cried like a little boy with no mommy, every day. Its when I realized that even through all the turmoil I was putting my body through it was still healing, that is what put my brakes on. No there is hope. Get serious about this! Is it too late to get serious? No..it isn't.

So here I am getting serious about this, leaving my house was the first step, being in a different environment puts me in a different mindset. Mark I will be drawing, slacklining for balance, walking, meditating, and doing yoga for my free time. Drawing will occupy most of it, while listening to Bach or Mozart. I rented a place super close to the hyperbaric place, so no driving, walking half a mile there half a mile back. The chiro place is 15 minutes by bus. Ear plugs, sun glasses, and whole lot of determination to accept who I am and move on to make him the best he can be!

Hi there
Just wanted to say best of luck to you and that your experience with healing seems similar to mine. Through much of the first year, I was not able to accept that my life had changed and I would need to put everything on hold to let my brain heal. I feel like that set me back. Now on my second year, I am finally realizing what I need to do - reduce everything and focus on healing.

If you are having problems with the anxiety of all this, I would recommend focusing on that too. Once I was able to get past the anxiety, I was able to understand what my body needed.

Please let us know how it goes.

Your story sounds similar to mine! I used to go mountain biking and do every sport imaginable. I was in university and having the time of my life. after 28 months of recovery I just started taking a single class at university and man its tough but Hey i'm back in school! and I got a job! its only a dozen or so hours a week but its a good job! I can't watch movies or tv and I can't play sports anymore and its really tough man. I'm glad you are starting to do yoga, I find it awesome to at least be doing something that is improving me physically.

Some other things I also tried was painting (I got some cheap supplies from the dollar store to start with) and it went well, I made crackers the other day from scratch (super easy btw), I learned to make bread, I learned to make a dreamcatcher from vines and yarn and i've been learning to knit. It is still hard because I still want to go to the gym and play sports but at least now I have things that i'm doing that I can be proud of and that has been very helpful in recovery. I spent my first year sitting in my chair doing absolutely nothing and thats a terrible way to live.

It's not just going to go away!
 

Here is another trial being done one hyperbaric so by Joe Namath for people in the Florida area. They are saying up to 120 sessions to see improvement.

http://namathneurocenter.com/tbi-clinical-trial.html

The group for this study is very selective. "To be eligible for the trial, patients must be diagnoses with brain injury as demonstrated by loss of consciousness due to the injury that is a minimum of 1 year old."

Not many of us have suffered a loss of consciousness. For those who have, it looks like a great opportunity.

Hmm..
 

I had an loc of less than a second, but to me it counts. Also, if I was in Florida suffering from PCS I would prolly lie to get into the study that could possibly heal me. Spect scans will show my injury loc or not.

Also, people please try to get into these studies, whether he one by Harch in Louisana or this, we need some testimonials with data proving this works so the FDA can approve it. Namaths Spect scans after 120 hbot treatments gives me hope that it will have a similar effect on my brain. Fingers crossed!

I don't understand the part saying

"You sustained a traumatic brain injury (TBI), as demonstrated by a loss of consciousness, at least one year ago"

I wonder why the emphasis on LOC?

I saw the price - $75,000 USD. :eek:

All the best to anyone if you're going to do it.

Edited to add:

Sorry I meant to ask... when do you start your rehab qtipsq?

The LOC requirement is likely just to set a severity of initial impact qualifier. Clinical studies need to set standards so that the results can not be discounted due to weak study parameters. Some of the previous studies done used weak parameters and are discounted.

The SPECT scan is done early in the process to see if the subject is showing improvement in capillary growth. It sounds like if no capillary growth is imaged, the subject will be removed from the study. This could be to also determine if capillary growth parallels cognitive and other PCS symptom improvements.

It is important when reading study parameters and study results and summaries that specific details are very important.

The $75,000+ cost is quite alarming. This sounds more like a program to generate income for the clinic. A package price for 120 HBOT treatments could cost as little as $12,000.

I'd be tempted to spend the $12,000 if there was more science already.

The other studies I have seen do not charge for the HBOT and assessments. The participants only need to pay for transportation and any lodging, food etc. to stay near the clinic.

Hopefully going forward and with more research into the subject recovery from concussions will become more mainstream and part of the medical system. As of now unfortunately that's the reality of this awful condition.

yes!
 

Yeah the medical system is a joke when it comes to neurological disorders. I feel like I know more after doing all this research on how to heal someone with a neurologiacl problem than my neurologist.

Lara I will leave April 4th, my rehab will start the 6th. By the way has anyone heard of Matrix Re-patterning treatment? There is a chiro in Denver offering it for head injuries I was thinking about giving it a shot. I will give everyone an update after my first 40 dives, till than I have taken a vow of being off of any screens.

These are some of the things I will be doing during my free time to enhance recovery.
Mozart Therapy (basically listening to a lot of mozart)
Walking three miles a days
Tai CHi (Joined a local Kung Fu School)
Slack lining (its a long line you balance on it) even though my balances all messed up my muscle memory helps me keep my balance
A Ketogenic Diet
Mindful Meditation
A strict sleep schedule
Vitamins Galore
No Screens
Accupuncture
Stretching a lot with Thera BAnds.
Vestibular Excercises
Aroma Therapy
Drawing

The idea is to use all my senses to activate as much of my brain as possible without overloading it. Hoping it will help healing and maybe a little bit of neuro plasticity.


After 80 Dives I will see If I want to dive again for 40 more. 120 dives seems like the number where you make all the gains that you can get. I might just do it for the peace of mind.

another healing site
 

http://www.onehitaway.org/ Its a parents journey through PCS, they end up giving their sons over 133 hyperbaric dives, mixed with good nutrition and Chiropractic Neurology to get their son better.

If I had to do it all over again, I would head straight to a hyperbaric chamber to try to avoid the cell death that happens. I mean this guy sounds like he was way worse than me but with proper care he recovered way faster than me.

Also, if anyone has the money and can get themselves to an Amen Clinic, that is what I would do if I had to take this journey all over again. Those guys know what they are talking about.

One could easily spend $50,000 to $100,000 chasing treatments. Dr Amen's clinics focus on treating the wealthy, usually within the human potential industry. Anecdotal accounts aside, his overall track record within the mTBI community is weak. The Amen branded supplement packs look OK but are a bit lacking in some nutrients.

The important thing to remember is every brain injury is different. Not everybody responds the same to a specific treatment.

I hope you have the money to try all of these treatments and report back. I wonder how one can tell which treatment is providing a benefit when multiple treatments are done concurrently.

HBOT was extensively studied in more severe TBI's. Early intervention did not show a difference in long term outcome. Subjects returned to a more normal Glascow Coma Score quicker but their long term results did not change in a statistically relevant way as a result of immediate treatment with HBOT.

I hope this holds true for mTBI so there is not a need to rush to HBOT after every bump. Some of the studies do not start the HBOT until the symptoms have lasted a year or so.

Hi qtipsq,

Hope you are seeing improvement! Have a question regarding the acupuncture-- did you pursue that? Any benefit?

The numbness in my feet is only accentuating the other balance/vestibular issues, so wondering if anyone else has gone this route...

Thanks,
Grace