Can I help anyone?
 

In my first hockey game as a senior in high school I received two major concussions in the span of approximately 30 minutes. I had major cognitive problems initially. (I couldn’t read or write, speech was difficult for the first few days and a lot more.) It took me a good 12 months to feel right again. I’ve subsequently recovered, and am fully back to where I was before the accident. Although that was many years ago, concussion recovery is something I feel passionate about having lived through it. I really believe it’s not something a doctor or anyone else can fully understand and help with unless they’ve lived through it. I’ve got a number of tricks and strategies for better more fulfilling recovery and I’d be happy to share all of them. None of these are medical in nature. They’re psychological. For example, I recommend buying a Nintendo DS and one of the brain training games. Play it every day. What’s nice about those games is that they track your progress every day. You will be able to literally observe yourself getting better.

I’m not here to offer medical treatments, nor do I want money or anything else for advice or answering questions. I’m someone who lived through a horrible experience with concussion and I’d like to give back. Through my recovery I think the person who most helped me was Pat LaFontiane, the New York Rangers forward who eventually had to retire due to concussions. We spoke on the phone approximately once a week and his messages of hope and recovery were instrumental in helping me get back to normal. I’d like to do the same in this forum.

Hi Sackler99,

I'd love to learn more about your tricks and strategies for recovery. Did you have other symptoms besides cognitive loss?

I definitely agree that doctors are of little help if they haven't gone through it themselves. I was told by one neurologist that my tingling, numbness, and headaches were likely psychosomatic. He later acknowledged it is likely PCS. It makes recovery even more difficult when you can't find anyone who really understands.

I'm very encouraged to hear that you had a full recovery after about a year. I'm just coming up on one year since the concussion and am still having headaches and other symptoms. I am doing everything I can think of to focus on healing and recovery.

Don

Hi Don,

I suffered from lingering headaches (which my doctors called a good sign of healing), bad depression, and extremely disrupted sleep. These PCS symptoms lasted long after the cognitive stuff faded. I think cognitively I was 80% of the way back after 2 months. I could read, write etc. But those other lingering symptoms and an extreme problem of lack of concentration endured for around 12 months. I was fortunate to get into college early as that application was already in when I got hurt. I went from being at the top of my class to dropping all but 2 courses and graduating high school simply based on the generosity of my school administrators and teachers. My parents were great at fighting my battles, but there were times in classes I used to ace that I just wanted to cry.

I think the first thing to understand about recovery is that it will occur. It’s slow, tedious, and discouraging at times, but given sufficient time, rest, and patience you will get better.

PCS is one of the worst types of injuries someone can endure because it is so hard to measure and understand. Most people look fine. All physical injuries have likely healed. It’s bad for athletes because teammates really don’t get it. You look fine, you move fine, so why can’t you get back out there? Teachers, employers, etc are all the same story. Even doctors don’t get it. People think just because you look fine and don’t exhibit major psychological symptoms you’re healthy and should just “get over it.” If you had PTSD from combat you would wake up screaming, be incoherent at times or something like that and people would know there’s something wrong. PCS robs you of more of yourself than PTSD, but it’s less pronounced so people don’t understand what it’s like for you. Even a significant other at times may ask if you’re faking it. Doctors calling symptoms psychosomatic are horrible, but not much of a surprise.

So the first thing I would suggest is just accept the notion that people will not understand what you’re going through unless they’ve been there. Don’t expect much of anything, even from doctors. PCS takes a piece of you that’s far worse than losing a finger or hand. Where you once excelled you are often average or even unable to complete basic tasks. No one understands how frustrating that feels as there’s very little that can rob someone of their cognitive abilities and still leave them coherent and mostly there.

Besides the Nintendo DS thing, I would say to just be patient with yourself. It’s hard to do. You want everything back, headaches to stop etc. But over time they inevitably will. Every doctor and patient I talked to said the same thing: given the time and support you will get better. When you’re going through it and saddled with PCS depression it’s impossible to feel that way, but it’s the truth.

Get your sleep under control. Stop setting alarms totally. I’m not sure of your age or situation, but every doctor will tell you good deep REM sleep speeds recovery tremendously. It took me on average six or seven hours to fall asleep, even with the drugs. (I had insomnia long before and after the concussions, so my sleep wasn’t good to begin with.) Once you’re actually asleep you need to maximize the REM hours you get. For me they were occurring at 5am and later. I had an alarm set for school at 7am, so I really wasn’t maximizing my REM hours. My advice is if possible turn off the alarm. When I did that I found the pace of recovery, mood, and frequency of headaches all improved greatly.

Try not to get frustrated. It solves nothing, adds to depression, and slows healing. Schedule simple tasks into the day that you know you can complete well. Nintendo is exactly that. What’s nice about it is it tracks the progress and helps you overcome even the most stubborn PCS depression. But any simple hand eye cognitively stimulating but simple tasks will do.

Sorry this is getting a bit long. Hang in there. I’m happy to answer other questions, talk on the phone or whatever. To give you some hope I went from first in my high school class to barely graduating. I ended up going to Princeton, graduating, and I’m in money management today. Given time, patience, and sleep I’m confident you will recover.

David

Hi David,

Thanks so much for sharing your experience and insights about PCS recovery. It really helps me to hear from someone who understands and has good ideas on how to recover. I'm not much of a video game person, but will consider getting a nintendo if that's what it will take.

After joining this group just recently, I have only now learned how important sleep is to recovery. My neurologist never emphasized that. I've been working fulltime every day since the concussion so its very hard to get a lot of sleep. I do manage to get about 7-8 hours a night. And, lately, I've been taking naps when I get home from work. Hopefully, that will help.

As for the frustration, that is the hardest part for me. I'm in my mid-40s and have always been active outdoors. But, since the fall, I have not been able to exercise as much because it makes my symptoms worse. I made the silly mistake of jogging shortly after being released from the hospital because they said there's nothing wrong with me. It wasn't til about 3 weeks after the fall that I started to have PCS symptoms. Now, I'm frustrated because I can't do much physical activity anymore. I'm too young for that! :mad:

On the cognitive side, I do notice some slowing in my processing and occasional brain fog which makes it difficult for me to focus in my work as a software developer. Early on, I noticed that my writing was not so good and I would skip words. However, that has gotten better in the past few months. My thinking is slow, but still very good. I was able to take 3 graduate level courses in the past year and excelled in them. It's more the physical symptoms that worry me.

I am going to keep your encouraging words in mind whenever I feel frustrated or discouraged. :)

Thanks again for your advice.

Don

Sackler,

I am glad to see you have had such a good recovery. I hope you have learned to stay away from concussion risks.

Although you may feel like you have recovered 100%, studies show you have not. Your are now susceptible to another devastating concussion. I have used less technological ways to recover from concussions starting in 1971. In non-stress situations, my recover was very high. If I was under stress, my residual symptoms were noticeable. Research suggests that my experience is normal.

We did not even have calculators back then, except for $395 HP models. I did mental math to retrain my brain. These recovery techniques worked great for many years and many later minor concussions or light head bumps. I graduated high school 23rd out of 350 even after having a full year of dismal grades after a concussion.

I suffered a moderate concussion in 1996 and used Freecell and Minesweeper to exercise my brain and recover. A mild concussion in 1999 was difficult to recover from and a extremely mild concussion in 2001 was not recoverable, no matter what I did.

The studies show that the damage from a first concussion leaves your brain weak and susceptible to future lesser concussions. As a PCS subject ages, their ability to tolerate a concussion diminishes and their ability to recover diminishes, especially after 40 years old.

The important fact to learn is that first concussions at an early age are far more recoverable. They should be taken as a wake up call to avoid impacts to the head. Concussions during puberty can be more symptomatic and spontaneously recover as the brain matures out of puberty.

But, concussions during puberty can also leave one with lifelong disabilities, especially if they effect the judgment parts of the brain. Interrupting this judgment maturing process can be permanent as the brain only develops this maturing in judgment during the 13 to 25 years.

Sackler, I would suggest that you avoid intellectually intense tasks while at altitudes, especially near or above 8,000 feet. The lower oxygen vapor pressure will magnify the residual damage to your brain.

I learned this as a private pilot. I was able to pass my private pilot written exam six years after taking the exam course while in college. As a successful self-employed person, I bought a very nice single engine aircraft ( Beech Bonanza). I did most of my flying at below 5000 feet. Once I started taking longer trips at 11,000 and 12,000 feet, I started making simple mistakes. I was not completing landing checklists properly. This can be deadly. After a few realizations, I parked the plane and eventually sold it.

Years later, I read the study ( Dr Dorothy Gronwall, 1978 and earlier) that revealed that altitude can be a trigger of cognitive problems. My problems had been after two hour flights at 11,000 or 12,000 feet. The study showed that 8,000 feet was enough to cause cognitive decline consistently in subjects who had suffered just one noticeable concussion.

btw, The Federal Aviation Regulations do not require supplemental oxygen on non-commercial flights at less than 12,500 feet. In fact, supplemental oxygen is not required on non-commercial flights of less than 30 minutes up to 14,000 feet. Apparently, the FAA does not have Dr Gronwall's study available.

So, you youngsters, work diligently for the recover that is available to you, and AVOID further risks to your head.

Thanks Mark,

I guess I’m dumber than I thought. :) It’s true that age does hinder recovery of all injuries, brain and otherwise. But I do think with some simple steps Don or anyone can minimize their symptoms and at least feel fully recovered. If they are recovered or not seems to me to be a philosophical question, but I feel fully back to where I was.

I’ve never had the altitude problems you mention. I’ve been a skier all my life, and my body was and is used to being at altitudes higher than 7,000 feet. I think that acclimatization at a young age may have helped me. Keep in mind that flying commercial is like being at altitudes of 10,000-15,000 feet with no oxygen. The pressurization of the plane is far lower than sea level and the air is thinner.

Your simple math, minesweeper, etc are the exact same idea as the Nintendo. The only advantage of the Nintendo is that it tracks progress from prior times in nice graphs. Those graphs are psychologically very uplifting. I found frustration with myself and my limited PCS acumen to be amongst the worst things for my recovery. Any simple exercises or devices that can alleviate that while honing some mental acuity are a plus in my mind.

David

David,

Thank you for your encouraging messages! It's great to see people who have come out the other side better. I know everyone is different, and repeat concussions can take their toll, but it's still great to hear that you've gotten through it!

I'm on month 6 of my first concussion, and month 2 of my second concussion. I haven't seen any progress at all, but I'm managing my symptoms well.

I find that the Nintendo DS, as you brought up, helps me- but in a different way. My son and daughter have them with pokemon games. I find that it helps me tune everything else out around me when I start to get overwhelmed. My husband is going to buy me my own for Christmas this year. Just being able to focus on one simple task while everything else seems like it's too much is helpful for me.

I also use the Wii for rehabilitation when I'm alone in the house. There are balance and mind games that seem to help me feel positive about doing something proactive for my recovery process. The Wii Fit also gives me a little bit of a yoga workout, so that I can keep my weight gain under control. I hate not being active!

I think for me, just feeling like I'm doing something when I feel like I can't do anything helps.

Thanks again for your positive attitude!

ps- Pat LaFontaine is a hero where I live in Buffalo. I got very excited when you mentioned his name. I admire him greatly after watching him play for so many years for my favorite team! Thanks for sharing your story and his.

Pat is a great guy. He really went out of his way to help and support when he didn’t know me from a hole in the wall. I haven’t talked to him in years, but he’s an inspirational guy for PCS.

One thing I found with working out is that endurance type exercises were a nightmare. Running would get me dizzy and leave me with a pounding headache. For some reason I could lift weights without much PCS symptoms. I’m sure everyone’s body is different though. I would say try a variety of things, even stuff you would ordinarily never consider trying. You may find some activity that works for you. The key is not to get frustrated and just keep trying until you find that physical activity that clicks.

I too find that when I run or use the elliptical I have more problems than if I ride a stationary bike. The only problem with that is that I used to be a competitive athlete and I am nowhere near that and may never be that again. I can lift weights with no problems. I used to be able to work out aerobically and not feel bad until the next day. Now, I feel like crap while I am doing it. I try to keep my heart rate around 140 on the elliptical and bike. I am nowhere near that while jogging (well over). I bought the kids a Wii fit for Christmas so I am looking forward to trying some different stuff. I do notice that when we play games that require a quick response, I cannot play. There is a game where you have to pick people who look the same and it only gives you a few seconds to find them. By the time I actually pick them out, the time is over! I feel that the learning curve is well out of my range. The kids think it's funny. I don't feel the same way!

This is a good discussion, both on exercise and brain rehabilitation.

On the exercise, I was a major fitness freak before my accident. Now I have to be very careful to keep my heart rate within a certain range to avoid making my headache go ballistic.

I do a lot of cognitive therapy, but you've finally inspired me to follow my neuro-psychologist's advice to take up video games. He said I should especially try some that require me to accumulate and apply information. I've always hated computer games, so I'm in the dark here. Any recommendations?

Cheers

Hockey,

Check out lumosity.com. It's a good place for brain exercise games.

Hockey,

I would suggest playing Sudoku if you can. The mental math required is a very good exercise. It works on multi-step problems. Simple computer games like those included with Windows, Minesweeper, FreeCell, and some others work on visual perception skills, sequencing, visualization, etc.

The Nintendo DS games may track your progress, but I would not get hung up on tracking progress. Keep in mind that some of the progress noted is due to the repetitions. Other improvements are due to 'learning.' You get better at understanding the tasks and may even memorize some tasks. It is hard to differentiate between recovery of functions and learning new functions.

And, I would suggest being very open to recognize any mental fatigue. Muscles get strengthened by repeated fatigue. This is the opposite for the brain. As soon as you notice fatigue, take a break and maybe a short nap.

If you want a real challenge, check out Posit Science Corporation. They make brain exercises for the very serious. www.positscience.com. Also www.braintrain.com and www.sharpbrains.com.

The tasks that are good to work on are memory, especially mixed and interrupted memory. Memory where you have to recall in a different order and memory that is recalled after interference stimuli. Sequencing, sorting, and any efforts where you have to process the memorized items to come up with an answer. The more abstract the items memorized, the better.

David,
Regarding altitude, commercial flights other than air taxi, are required by law to maintain a cabin altitude of 8,000 feet. The airlines would not pressurize to 8,000 feet if they did not have to. Pressurization uses up jet fuel. If a commercial aircraft flew with a cabin altitude of 15,000 feet, half the passengers would pass out, especially any with heart or lung problems.

Sports at altitude, like skiing, are not even close to the same as neurological conditions at altitude. The blood can acclimate to altitude so that the lungs can better transport oxygen to the muscles. I am confused by what you mean when you said <The pressurization of the plane is far lower than sea level and the air is thinner.>

Any prospective pilot is taught the neurological effects of altitude. It is required for the FAA exams. I used the wrong term, 'vapor' pressure should have been 'partial' pressure. My damaged brain at work. SCUBA divers also need to understand partial pressure theory.

If you think that recovery is a philosophical issue, then the injury would be a philosophical injury. There are psychological components to PCS that, once recovered, make the PCS subject feel much better. The physiological components will recover better if the psychological issues are treated. Stress is a very negative factor to recovery.

The physiological components may heal to a point that, under normal circumstances, feels 100%. Put that same brain under stress, due to oxygen levels, stress chemicals, poor nutrition, illness, fever, etc. and the residual damage will become evident.

Also, there is a vast difference in the healing mechanisms of different tissues in the body. Muscle and bone tissue heal great. This is in part due to the 'remodeling' feature muscles and bones have. They lose cells constantly, as they get old. These cells are replaced with new cells. Some call this a remodeling function. It performs at all ages as long as nutrition is maintained, except for bones.

Osteoporosis is a result of this regrowth of new bone cells being hampered by hormonal irregularities and Vitamin D and calcium deficiencies. Biphosphonate drugs slow or stop the loss of the older bones cells. The women using them end up with dense bones with many old cells.

Although neuroscientists see evidence that there is some regrowth of brain cells, it is slow and not necessarily predictable. Young brains may rewire around damaged areas as the brain cells are continuing to grow and organize, sometimes until 25 years old. There is hope in stem cell therapy but it is still years if not decades away.

So, mind your brains. You were only given one. Use it to protect it for a lifetime of use. As one who has a number of brain damaged friends, erring on the side of caution is a good idea. One study suggests that as many as 60% of our prison population has suffered brain damage, mostly previously undiagnosed, such a PCS.

Thanks for the game link. I just scored 20% in the migrating bird game so I think this is a site that will really help me focus on my weaknesses.

I'm going back to see what else is there.

Thanks Again!

Hockey,

You are very welcome. I really like this program because it is very affordable and it is just as good as any other brain training products out there. Enjoy!

Hey David,

Glad to hear that you were able to make a complete recovery from your head injury. I couldn't agree with you more that people can make a complete recovery from head injuries to lead normal lives and even extraordinary lives. Just read about Abraham Lincoln (my favorite president). He suffered a pretty bad head injury in his youth which contributed to his reading disability in his adult life, and I would say he had a pretty good life...:).

Something you may want to look into when you get older is neurofeedback. Scientists are now discovering that people who suffered a head injury in their younger days start to show memory decline and other symptoms in their late 40's and 50's. They also discovered that doing neurofeedback helped to completely alleviate these symptoms. There is even a case study of a man in his 70's who received a few concussions in college and who was having symptoms of memory loss and confusion. He did 70 sessions of neurofeedback and this completely reversed his memory loss and cognitive decline.

There are a number. I picked Nintendo DS for a few reasons. First it’s cheap. It’s way less than a PS3 or something like that. Second it’s portable so you can play it on the train or bus. Third it uses a touch screen and stylus, so it’s a lot of fine motor controls.

There are plenty of remembering knowledge based stuff. Ace Attorney is one such franchise. But I really think the Brain Age games are the way to go.

I based my 15,000' on using a few different air pressure based altimeters that are all accurate on planes. I calibrated each before taking off and got to altitudes of 10,000-15,000’. You won’t pass out at 15,000’ if you’re sitting in a chair not doing anything. Chacaltaya is above 17,000 feet and I skied there the first day up from sea level. I didn’t feel great, that’s for sure, but I also didn’t pass out. I appreciate the FAA may require 8,000’, but I’ve never had a reading that low. I calculate the effective altitude on probably 1 out of every 2 flights I take.

You confuse me. All altimeters are air pressure based. Radio altimeters are only used for AGL, above ground level. GPS based altitude readings are used for auto-pilot based calculations. Barometric altitude reading are the gold standard.

You must have been flying in South America or such to have such high cabin pressures. You could not get an aircraft altimeter on a commercial flight with current TSA regulations without some kind of special waiver. Maybe a watch based altimeter would work. When an aircraft is going to land at high altitude, the cabin pressure will be allowed to rise to the landing airport altitude.

It is very rare to land at airports above 6,000 or 7,000 feet. Aspen airport is at 7,815 feet altitude. It is not uncommon for the density altitude to exceed 10,000 or even 11,000 feet at Aspen airport. At such density altitudes. Many aircraft can not safely take-off or land with only a 7000 foot runway. Altitude effects the wings and engines of aircraft the same as it does brain cells. Too much altitude means too little performance.

Also, as I said, there is a big difference between muscle function and brain cell function. Higher level brain functions like judgment are seriously effected by altitude. This is no different than how alcohol reduces the supply of oxygen to the brain. Both effect judgment skills. Add altitude to PCS limitations and judgment can go downhill fast.

I used a watch based altimeter and a iPhone app. Just because the FAA mandates a certain pressure doesn't mean that much when you're talking about an aging fleet of planes. Try it sometime and you will be surprised.

True I didn’t try to do an IQ test at altitude.

I would not expect than an aging fleet of airplanes will cause cabin pressures to go above standard. The Federal Aviation Regulations requires all commercial turbine powered aircraft, regardless of age to maintain a maximum cabin pressure of 8,000 feet. If you have experienced a cabin pressure above 8,000 feet, it would likely be a minor deviation from 8,000 feet and either way, would justify a complaint be filed with the FAA.

Operating an iPhone in other than 'inflight' mode, is a serious violation of current TSA/FAA regulations. Apple has programmed the iPhone to disable the GPS function during inflight mode. This is a grievance private pilots have with Apple. Many would like to use their iPhone as a back-up GPS during flight. Operating a cell phone inflight is illegal because it can mess up cell tower networks as the phone can broadcast to multiple towers improperly.

It would be interesting to do an ImPACT test while in flight. It would require a control test at normal ground altitude levels for accurate reference. The ImPACT test can be purchased and downloaded to a laptop computer. It costs $10.00 per test. The uploaded test data is analyzed and the results are relayed to a health practitioner. Purchasing a 2 test license should be a reasonable task.

I have purchased and taken the ImPACT test but have not found a practitioner to have the results forwarded to. I took the test so I could understand the testing methodology. I have taken previous computerized neuro-psychological tests. The ImPACT is just a concussion oriented battery of neuro-psych tests.

There is another computerized test called CNS Vital Signs. It could also be used to check altitude sensitivities.

When I demonstrated problems with altitude, I was not aware of my errors until after I had landed. During the altitude impacted effort to follow a landing check list, I FELT like everything was normal. This is exactly how altitude problems manifest. The subject is usually totally unaware of their difficulties. High altitude climbers rely on others to observe their condition. Self reporting is very unreliable.

One of my problems with PCS is knowing where to draw the line of capability. In matters of safety, I need to be very conservative. When I have not been, Murphy pops up his angry head and stings me. As Murphy says, If something can go wrong, it will. And it will go wrong at the worst possible moment.

I have dodged many bullets, especially driving a car. When the risk is just to myself or my property, the risk may be acceptable. When the risk is to others and their property, the risk is unadvised.
**

Hi David,

I sent you a private message awhile back via this site. Did you ever receive it?

Thanks.
Don

SPECT Scan Information
 

Hi,
My daughter, age 15, has PCS symptoms including non-epileptic seizures. I have recently heard of Dr. Daniel Amen's work with SPECT scans to help pin-point the injured areas of the brain in order to more effectively treat the symptoms. Has anyone had successful treatment with this "cutting edge technology"?
Linda (Mom) in CT

Hi Linda,

I'm glad to see that you are actively seeking treatment for your daughter. Dr. Amen's work with SPECT scans is quit remarkable; however, getting a QEEG will tell you basically the same thing at a much cheaper price. I have also heard that lately the docs in his office use the SPECT scan to mainly prescribe medication like ritalin and anti depressents. There are some studies that have shown that both of these can be detrimental to recovery. So you may want to make sure you ask them what their therapies are after they do the SPECT.

Instead of SPECT scans, you should look into hormone and neurofeedback therapy. A lot of research has come out just in the last two years regarding the use of progesterone to heal and restore function in brains. The sooner the better with this therapy, so you may want to get her into a doctor right away. A lot of docs are not aware of this new therapy, so I would suggest googleing it and taking a research article into your doctor. There are studies also being done all across the country so you may even have a university near you that is doing the study that you could enroll her in. Neurofeedback has been used for years as a treatment for brain injuries. Also make sure that she eats lots of protein or take a branched chain amino acid supplement. She also needs to ensure she is getting all of her vitamins and minerals. She needs to drink a lot of water during the day as well.

Hope this helps. Don't be afraid to ask more questions b/c a lot of people on here are very knowledgable and willing to help.

Good Luck.

Desperate & Exhausted
 

Thank you for your reply, but its been 2 years this January. I can't find the answer. I need a doctor who knows the answer. I've tried everything I felt would help and no one seems to know what to do. We've done the rest and wait. She did 40 treatments of HBO. We tried Bio-feedback - it gave her headaches. She homeschools so the environment is quiet but she still has headaches from concentrating & reading. When her brain gets overloaded she has had 9 non-epileptic seizures - which they are trying to tell me that are happening because she is anxious. She doesn't appear to have any anxiety especially when they happen. She is usually doing something where she is having fun or relaxed. They say it is anxiety that she is not aware of and want her in therapy to convince her that she doesn't know her own feelings. They want her on anti-depressants (low dose) and migraine medication. Although her headaches are not severe but they do stop her from continuing activities like school work or having fun. She needs to be in a quiet dark place. If they get bad they go to the seizures. She only has had 9 in 23 months. I would love a doctor who knows how to treat this with diet, exercise and supplements to support the brain functions. I have not wanted her on anti-depressants because of the side-effects and the fact that they don't usually heal but just add side-effects and maybe work for a short time and they you have to add more or change them. I thought Dr. Amen knew what he was doing but it doesn't sound like it. I'm tired and feeling hopeless to find help for her - I can't keep guessing. I need someone who knows what to do. Please help me. What is a QEEG? She just had an in hospital video-taped EEG which told us that her seizures are non-epileptic. Oh, and they also blame me for them because I'm over protective.

Tai Chi
 

Hi,

I just remember that someone suggested to me that Tai Chi might be good activity. Not too taxing for your heart rate. I'm going to look into it for my daughter who is 15 and has PCS.

Linda

Hi Linda,

Wow, it sounds like you have done a lot of digging for your daughter on possible treatments. As they say in the Southern Hemisphere, Good on ya for doing so.

I would encourage you again to look into neurofeedback. Neurofeedback is a sub specialty of biofeedback that directly trains the brain to operate more efficiently. Some people get it confused with biofeedback which trains muscles to relax, and the two are distinct from each other. Scientists really don't know what is happening physiologically when someone does neurofeedback, but with the discovery of neuroplasticity and stem cells, some scientists are speculating that it aids the brain in repairing damaged tissue.

I would specifically suggest finding a therapist who does LENS neurofeedback and/or Z score training. These are the latest and most advanced forms of neurofeedback available. The LENS is currently being investigated as a treatment in VA hospitals for Iraq war veterans who have sustained head injuries, and Z score training has been producing remarkable results thus far for head injuries.

I would also encourage you to get a full blood panel done on her if you haven't done so already. You guys need to ensure none of her hormones are out of whack and that she is getting all of her proper nutrients absorbed in her GI tract. And again, look into progesterone treatment.

One thing to keep in mind while undergoing treatment is that it isn't going to be easy for your daughter. Her brain has now become very dis-regulated and it is going to take a lot to get it back into a regulated state. So, patience with these different therapies is definitely needed.

Hope this helps and my apologies for belaboring neurofeedback.

Hi Linda,

My heart goes out to you and your daughter as you struggle to find hope during these trying times. Going through the suffering is bad enough, but the uncertainty is even worse. I just want you to know that I'll be praying for both of you.

I just hit my one year anniversary of PCS and am facing similar struggles as your daughter. I also have looked at the Amen Clinic as a possibility for me and am curious to know if anyone else out there has any first-hand experience (good or bad) with that clinic.

Although your daughter as struggled with PCS for two years, I had a very positive thought that I'd like to share with you. Since she is only 15 years old, her brain is still developing and therefore, she has a better chance of recovery than someone of an older age. God created our brains with an amazing ability to repair themselves and reroute neural pathways when needed. Please keep this in mind for your daughter and I think it will give you hope! :)

Also, I admire you for your heroic efforts to help your daughter. She is blessed to have a mom like you who is doing all she can to help her. :)

God Bless!

Don