New member: multiple TBIs 45+ years looking for info & support - Page 2

11-21-2009, 06:04 AM

Donna,

The reason why I asked is because some people are not interested in reading about therapies for their brains. So, instead of spending my time typing out information that falls on deaf ears (so to speak) I thought I would gauge your interest first.

No, unfortunately, there aren't any cures available yet. However, with the advent of stem cell technology, there will be in the near future. If you begin to keep up with the science of it, you will soon discover that scientists are making huge headway towards a cure. For example, there is a stem cell gel that has been shown in animal studies to completely regrow injured brain tissue caused from a trauma to the head. This study is only 3 years away from going to clinical trials. So, it is just a matter of time before a definitive cure is established.

There are therapies available that can help you reduce your symptoms and cope with life better. The brain, even a damaged one, has a remarkable capability of changing itself. I'm sure you've heard of this being called neuroplasticity. These therapies are not considered a cure, just like insulin is not a cure for type one diabeties; however, similar to insulin for diabetics, if done properly by a qualified and experienced professional, these therapies can improve your quality of life.

Here they are, in no particular order. Neurofeedback is one therapy you might try. This is a tricky one because it is only as good as the therapist administrating it. My guess is that you would be considered a 'tough' case which would require more advanced forms of neurofeedback. The one I would recommend is the LENS therapy. Neurofeedback is considered an alternative therapy, but it, especially the LENS, is quickly becoming a conventional treatment for head injuries. The designer of the LENS is actually presenting his research before the VA administration as a theraputic tool to use with Iraqi war vets who suffer from PCS and PTSD. The LENS is also an FDA approved device. There is also research that demonstrated in a population sample an 80% reduction in symptoms.

Another therapy you could look into, although I'm not sure if it would be of any help or not, is Hyperbaric Oxygen Therapy. The results from this therapy are not as consitant as the results from neurofeedback, and it is time dependent meaning the closer to the injuries you do it, the better the outcome.

A third therapy is cranial sacral therapy. I've only tried it a few times and it did a good job of relaxing me, but it never really did much else. I've read anecdotal reports from other head injured folks who swear by it.

Of course, and this goes without saying, you should get on a good diet with low simple carbs/sugar and high protein, vegetables and fruit. You should also get your hormone and vitamin/mineral levels checked. One regular poster on here supplemented some of his hormones and he said that it made a big difference. And, you may also want to supplement the B vitamins as it has been suggested on here that an injured brain's vitamin B requirements are higher than an uninjured brain. You should also look into getting on an omega fish oil supplement.

My doctor recently told me about some new alzheimers/dementia drugs that will hit the market soon that have demonstrated in studies to reverse the symptoms of alzheimers/dementia, and he speculates that these may be beneficial for PCS as well. There are also a couple of drugs that are being used in asia and europe to treat head injuries/pcs, but are considered supplements over here. These are oxiracetam (and any other racetam) and cerebrolysin. I wouldn't recommend using these without consulting a knowledgeable physician. However, most physicians in the U.S. aren't familiar with these. The really good ones are that have a lot of experience treating head injuries though.

I think that is all, at least that is all I can remember at 5 in the morning. Again, these won't cure your brain injury, but they are very likely to reduce your symptoms and definitely improve your quality of life.

Good luck.

Mark in Idaho · 11-21-2009, 10:19 AM

Donna,

In the near future, it would be good to start with the basics. Getting any skeletal issues addressed. Nutrition and hormones need to be considered. And learning to reduce stress levels is very important.

With your age and history of multiple impacts, brain plasticity is not as likely. But once you get the basics working better, you may find that you can learn the work-arounds and accommodations many of us use to live a somewhat normal life.

Your neurotransmitter comments sound like you have had some interesting lab work done. I am interested in hearing about that. I have been on an SSRI for a decade. It helps with one annoying symptoms but has side-effects that I wish to avoid.

Finding a good PT and/or chiropractor will be beneficial. The right ones are one out of a hundred. Rare but worth the hunt. Like Jo*mar said, it you have upper cervical issues, they can cascade into many other problems.

There are a few chiropractors who specialize in the upper cervical issues. They can be more expensive that the garden variety chiros.

The TOS often starts with a good series of x-rays of the cervical to upper thoracic area looking for false cervical ribs. These are rib like bones that can irritate the nerves as they leave the vertebra. Some people have them, most don't. They become more problematic as we age into the 50's. As disc heights lessen due to age or trauma, these false ribs start causing problems.

I can't recommend enough the need to get your nutrition and possibly hormones working correctly. As stated before, many of use find the proper B vitamins are crucial. B-12 and B-6 are the most important. You can get your B-12, folate, D3 and Thyroid and hormones tested with a blood test. DHEA is a hormone that many are deficient in. DHEA is the quarterback of hormone. It regulates the others. My wife has friends who were hormone deficient when in their early 30's. Many physicians think that as long as you are in the suggested 'range,' your hormones are OK. Others have learned that you may need to be in the upper end of the range to function properly. Same holds true for the other nutrition levels. B-12 and folate should be in the upper ranges or even a bit higher.

Omega-3's are good for brain health so a good supplement with EPA and DHA are valuable. I take Carlson's Fish Oil, citrus flavored.

The nutritional issue needs to become a lifestyle issue. Some of its benefits are quick but most are slower. Excluding some substances is also beneficial. Caffeine, MSG and artificial sweeteners, especially aspartame are high on the don't do this list.

Most doctors rarely emphasize the nutritional issues. It is amazing what the brain and body can do with good nutrition. Especially when the body and brain have had a rough life like yours and mine.

So, let us know how you are doing. We're here for you.

11-21-2009, 07:47 PM

Donna,

I wouldn't worry about your age or the number of head injuries you've incurred in regards to doing any type of therapy. Unless you have severely damaged your brain beyond repair, in which case you probably wouldn't be able to type on a computer, you can still get some level of improvement with therapy, especially neurofeedback. Studies have shown that even people in their 80's who have suffered major brain injuries can still get some functioning back after neurofeedback.

Mark in Idaho · 11-22-2009, 11:41 AM

Donna,

I had missed your reply answer. Wow, you have had quite a life experience. I have a cousin with similar head injuries. He fell from a swimming pool slide onto concrete head first.

I got knocked out in 4th grade from a bicycle accident. After I was released from the hospital (My speech was slurred for three days), I got zero follow-up. My up and down academic performances were unexplained until 10th grade when I started having seizures.

I recovered to high functioning but not complete recovery, after each minor bump and decompensation. I had to give up on goal of dental school. The stresses of study were too great. After 25 years of successful self-employment, suffered minor head trauma in 2001 that took driving away. Doctor said my age and multiple head traumas had likely use up the brain plasticity available. he was surprised at my high level of functioning considering my brain dysfunction that showed on the EEG.

With all of your surgical interventions, it is no wonder your body does not respond like expected. I agree with Jo*Mar that TOS is still worth investigating. I wonder if TOS may have been a cause of many of your problems for a long time. I had a Stanford professor gastroenterologist spend weeks trying to find the cause of my gut problems. Then, a chiropractor found a dislocated rib, reduced it and I was symptom free in a few hours.

Finding the magic hands that understand your body can be a lifesaver. I have been touched by about 30 chiros and PTs. Only 4 have been able to help me. Don't be afraid to keep looking for the healing hands, either chiro or PT. I finally found a good chiro for my TOS but eventually, he and his wife moved away. My PT is fabulous but hard to get an appointment because EVERYBODY knows how good she is. Sometimes, a good therapeutic massage can help with TOS.

I agree that you need to get a Social Security Disability Income application approved. You sure sound like you qualify. Your medical leave history should be good evidence of your disability. SSDI is small change but it includes Medicare so it is worthwhile. I was finally approved last March, after three years. Hopefully, your approval will be much faster. Your struggle with ADL's (Activities of Daily Living) are good qualifiers.

btw, Has your husband been tested for sleep apnea. His snoring and restless legs are strong symptoms of OSA. (Obstructive Sleep Apnea). I had not slept in the same bed as my wife for a long time. I finally got started on Bio-identical hormone replacement therapy 3 weeks ago. Now I sleep much better and get to sleep in the bed again. The recliner was getting old.

Look into Bio-identical Hormones. The branded pharmaceutical hormones are not quite the same. I am on DHEA and testosterone. My wife is on DHEA and progesterone. It took her about a year to get the dosage right. It is life changing. Your body sounds like it is screaming for hormone balance. Womens International Pharmacy has a 'find a doc' referral system on their web site. Go to : http://www.womensinternational.com/ or better yet:
http://www.womensinternational.com/r..._referral.html

Your hubby sounds like a keeper. Putting up with people like us is a challenge. My wife struggled to understand me until we finally found a brain injury support group. She learned that she was not alone. At least now, she has others to talk to about this.

Hope you are having a better day.

My best to you.

gershonb · 11-26-2009, 02:38 AM

Hi Donna

Jeez Louise, this sounds really familiar....
I posted a few months ago about all the childhood injuries I had, starting at 11 months when I went out of my crib and was out for 1-2 hours. There were other car accident things (no seat belts in the '50s) and a bad bike accident. Then when I was fifteen I was hit by a car while walking and had a massive concussion and subdural bleeding. After two weeks when they wouldn't let me out of bed, they suddenly let me go home and it was "just get on with it." Of course, it wasn't a nurturing environment. I related to your story of injury #2 (not reporting the head whack because of not wanting to get dad in trouble). When I was 10 and they were exploring the rheumatoid arthritis that had emerged, they X-rayed my right elbow and found that, probably when I was 5 or 6, the elbow had been fractured and the radial head snapped off. Whole incident went untreated.
I'm now 57 and have had problems with arthritis, Sjogren's syndrome (another autoimmune thing), depression, central apnea (brain "forgets" to signal you to breathe), difficulty concentrating, and am now dealing with widespread endocrine strangeness. The biggest problem is fatigue and brain fog--for the last four years I have relied on ritalin if I need to get anything done. The problem is that I just found out that ritalin may be driving one of my hormones to dangerous levels.

I'm glad that you found physicians who took your injuries seriously. I asked a neurologist in the 80's about my string of concussions and he basically blew it off. So I didn't think about it much when I started studying martial arts and continued for 7 years. During that, I learned a lot spiritually, but my brain symptoms got much worse--even though I never concussed.

There's a lot of help for people who are recovering from recent injuries, but I haven't noticed a lot of folks sharing about paying the dues in their '50s for childhood injuries. So I'm really glad you shared all of this. I don't know much about the medical symptoms you mention--I would suggest explaining the acronyms, etc. When I first started posting here, someone requested that I state things more simply and put more white space between paragraphs because some of the readers have visual issues with dense text. I'm a clinician myself, as well as other things, but I try to do that.

I remember when I finally started to share all this all this history came tumbling out in a rush. It's like someone out there is finally listening. That's important if you've come from a background in which folks weren't always listening or observing very well...

Well, it's 0330, which is my usual (sleep disordered) bedtime. BTW, I was able to work and was recently laid off from a position as a hospice chaplain, but I was noticing a real problem with maintaining energy on the job. People 70 years old were getting a lot more done than I was. The brain stuff is at least an explanation of where the energy drained out.

keep writing

Gershon

concussionkate · 11-29-2009, 11:06 PM

Hi Donna,

I'm glad you found this site! I had my concussion 6 months ago, and it's been really a huge source of support for me. I hope you can find some peace of mind and some great advice here.

I'm sorry that you have gone through all that you have in your life. It can be so frustrating at times.

Welcome!

Hockey · 11-30-2009, 06:04 PM

Hi Donna,

I just wanted to welcome you to our little brain boo boo club.

My damage came as the result of a singe, catastrophic injury a couple years ago. My neurologist told me to just go home and suck it up because I was a write-off.

I've learned here that there are treatment options for me and I'm lobbying hard to get them. Seriously, there are folks here who know way more about brain injury than my doctor. Better still, they're willing to explain it over and over in little chunks that I have a hope of understanding. Where else is that going to happen?