It's whine time folks. I am not much for it, but today is just one of those days, so here it is.....

I have been one relatively ****** off individual these past few years.
I never thought about things that way until someone posted a few words about people being angry at the world for the where and why and what and all else that causes someone to be fated to living with severe TBI.

Mostly about the headaches, but then occasionally too about muscle aches, and spasms, and joint issues, and the wobblies and its ever present companion nausea, and memory issues and aphasia and and and and and.......................

For those who have come to NT/PC, and such a life-situation due to a TBI event....well, about all there is to say is that life sure can be a ***** sometimes.....

Standard nothing is what applies to the folks sustaining severe TBI's who for some mysterious reason show a remarkable ability to heal and learn. Doctors just want more tests and to keep you coming in regularly, both so they can think that one day they are gonna be the white hatted hero, and because they know that you are somewhat of a "captive" client. A client that will need, and therefore continue to supply the good doctor with a lifetime revenue stream, a lifetime of observation and consultation and referrals and billings.......
But let's face it, once you have sustained an injury/insult, and have consequently shown what is continuosly considered to be quite some remarkable rehabilitative progress, and have had every test imaginable already done at least twice and none of them ever yeilding even the murkiest of clues, what then is the purpose of going on with it?
The truth of the matter is that all the tests in the world are going to show some sort of anomalies, they are supposed to you know. That's what happens to people with TBI....And chances are extremely high that any such tests are NOT going to locate or signify any sort of meaningful TREATABLE issue, and if the tests do miraculously show a causal effect, there is very little chance that there is ANY thing they can be done to positively impact and negate the symptoms that bother you., especially from a pharmaceutical standpoint!

Say and think what you will, but if have questioned more than a few, like every neurology related specialist I have seen, and NONE of them, that's right, NOT ONE SINGLE NEURO-PHYSICIAN has disagreed with my assessment of my situation. And yet they all want to continue with billing somebody for even more drugs and tests that in the end are useless and stupid to even consider, let alone pursue.

Drugs just won't work right if they effect one part of the brain that in ordinary folks controls such functions/issues, but doesn't any longer in the now TBI person, It's just foolish wishes that such issues be prevented in the first place when the parts of the brain that once managed such a potential causal effect no longer exist as a working or functional entity and are no longer controlled by the specific part of the brain the nature intended it/them to. That's why the neuro's and there psychiatrist buddies insist on one taking everything imaginable until "we find the one that works", which chances are, ain't never gonna happen, short of finding a few psycho-tropics that do little more than make what is left of your brain numb and keep you and you brain quiet and compliant. Keeps you coming for at least 2 months more for every drug they try, and at the very least one more follow up visit, doesn't it ????

I have a neuro appt. next month, if it turns into more of the same, I am washing my hands of all things medical, until shortly after I am officially dead. I'll just learn to live with it all....Since what I say really doesn't seem to matter to any neurologist I have ever seen, and I have now seen plenty, I will no longer grace them with my billable hours. All I any longer want anyway is relief from the headaches, the rest I can deal with quite well, thank you.....And since not a neuro-anything within 100 miles of here sees fit to prescribe me the medications necessary to stop a headache ONLY WHEN I GET ONE and instead all seem exceptionally intent on getting me to take at least something everyday and something new at every appointment, and since THAT WILL NEVER EVER EVER happen again, just exactly what would the purpose be?

One neuro researcher physician even went as far as to tell my wife and I that I was correct and that any further tests or testing regimens will not yield any meaningful results, and that any further treatments or tests centered on alleviating these terrifyingly massive headaches outside of simply taking large doses of narcotics when I get them, would be foolish, and (his words) "in my opinion ill advised"
But that hasn't stopped all the rest of them from wanting more and more billable hours/tests/prescriptions.....They, not a one of them as near as I can tell, are really not interested in what I think or feel about any of my "treatment options", they ALL seem to think that when it comes to such things, they are all right up there at, maybe being is more apt, the right hand of God.

Here is some really good advice for those with what is considered Severe TBI....AND their doctors too.....

Brains, like eggs, once scrambled, can never be put back together again.

That, contrary to whatever the neurolog-whatever you are currently seeing or are being referred to might want you to believe, IS just the way things go for people in TBI land......

The whole neuro-TBI treatment scene, in my opinion and based on my rather considerable experience and never ending research into such things is, with TBI related things anyway, borders on little more than a massive defrauding of the public, the insurance companies, and the government.

Feel free to differ with anything I stated above, state away whatever disagreements you like, you'll be wrong and I am right, and that, well, that's all there is too it.

Well, I certainly feel better now
I feel so much better, I'm gonna take Sasha for a walk uptown!

HAGD!!!!

AHL
Fully delusional, and yet, only semi-psychotic

[cathym]

I hear ya.
Question:
Has anyone ever been to the Mayo Clinic for TBI treatment?

[froglady]

Arthur, keep on venting. I truly think it is what saves our minds from blowing competely! As for myself I seem to want to bang my head through a wall. Thankfully, I do have enough sanity left to not do it...though not sure how much!
Hugs, Gaye

[jeffn]

Hi Auther It looks like you hit the nail on the head and so have a lot of other people who post here. Thank you

I was very fortunate in that my nuerophycologist told me the truth at the first assessment, that being that the system is set up for failure and that the brain would go through it's natural healing process over two years and then you would have to re create new channels in the brain for the neurotransmitters to send there messages.

I'm currently doing my research on neurofeedback a re training program for the brain

2.Researching HEG Hemoencephalogradny which incearses the blood flow, oxygen and glucose to the brain.

3. Oxygen Therapy

None of these therapies are covered by insureance so they are an out of pocket expense.

Thanks for the write up on the opioids and the brain links very useful information to have during this healing process.

Take Care Jeff

[Lucy]

Well said - are you a relation of PCS McGee (that is my attempt at humour for now) Have a look at my post today about the chiropractor under cranio sacral heading and give me your opinion.

Lynlee

[Nancy F]

Arthur,
The only good reason I can see, in continuing to keep appts. is the learning that they get from your experience and your intelligence. It is for the future PCS cases down the road, whether the very distant road or not so distant who will gain from any new therapys or treatments. Hang in there and continue to believe in yourself enough to plow forward with your brain, however scrambled. I personally like my eggs scrambled!

Originally Posted by Nancy F

Arthur,
The only good reason I can see, in continuing to keep appts. is the learning that they get from your experience and your intelligence. It is for the future PCS cases down the road, whether the very distant road or not so distant who will gain from any new therapys or treatments. Hang in there and continue to believe in yourself enough to plow forward with your brain, however scrambled. I personally like my eggs scrambled!

I have considered just that point on more than several occasions.....
There are these neuro research doctors who want me to let them put me in the hospital for 2 weeks, all the while wired up to an EEG lead harness that I cannot stray more than not too many feet from the "terminal", so that they can "get a better idea of how and why you function the way you do". They have spoken with me several times regarding this request.
I have refused, and will continue to as I have no intention of spending two weeks as a "captive" with little or nothing to do and nowhere to go......Oh Yeah, and they want somebody to pay in full for all that time too.....
I did however on several occasions make them what I consider to be a really good offer......
I told them that the technology exists, and even told them who at their sponsoring University could tell them the "what" that would allow them to hard-wire me and my scrambled egg brain up and record in "real time" all the data acquired thru either a transmitter to a remote recorder or to a flash memory device that could be downloaded and the data sent directly to them. Wouldn't matter what I was doing or where I was doing it, the data would be real-time and what is really happening with and to me when and where it happens.
I found, and still find it rather hard to believe, that this offer (and IMHO it's a really good offer too) was each time turned down faster than a dog can eat a hamburger. This that and the other about control and equipment and monitoring and and and and.........
They have told me on more than several occasions how important it is that those who show unexplained rehabilitative abilities allow the research folks to delve into the mysteries of ones inner workings.....I agree whole-heartedly and am more than willing to participate......But, it is going to be on MY terms and no one else's, or it ain't ever gonna happen.....Call me selfish or whatever you wish, but, that's just the way it is, and that's just the way it's gonna stay.....

They, "the research doctors", all seem rather upset that I am no longer a willing participant in any of the tests or "treatments" that they want to try, one of them even having told me that "you read to much, you just need to let us do what it is that we do"
I am not, as the sincere and mis-guided young doctor soon found out, very well disposed to anyone, and I don't care who it is either, ever telling me that they know what is a) better for me than I do and b) how I "need" to do anything that I have determined is not in my best interest to do....

And though selfish may be exactly what it is, I really have no problems with being a guinea pig, as long as it's on my terms...

I like eggs too, scrambled, and, hard-boiled.... go figure.............

[Victorya]

Originally Posted by jeffn

I'm currently doing my research on neurofeedback a re training program for the

My husband went through neuro feedback, and no, our insurance didn't cover the expense, either.

It seemed at the time that the neuro feedback was helping. But after the fact, we both wonder if it was the NF that was helping, or whether he was just feeling better because of time passing.

In the end, I'm glad he did it. We would have tried ANYTHING that sounded like it might help. And maybe it did.

[jeffn]

Thank you for the feed back on Neurofeedback this maybe part of the solution to retraining the brain. Still in the research stage and going through the learning curve on the treatment and therapy for people with TBI/PCS.

It looks to me that the neurofeedback works on two plains in real time, audio and visual and by dis engages the amygdala [ the fear and flight response] the brain can reset the brain waves to their correct frequency.

I'm looking at this as one element of the re training program and see this as a long term rebuiding process as the whole person needs to be treated, body, mind and sprite to rebalance and rejuvenate the brain cells and re create new path ways for the neurotransmitters to communicate.

I'm also researching Hyperbaric Oxygen Therapy as this is a way to get more oxygen into the blood system and the brain. Oxygen is one of the healing elements of the body/mind.

Message Therapy is also part of my long term treatment as this is a natural detoxifier to the nerve damage in the muscle tissue, hypertension, head aches and managing stress.

Brain food supplements of Brewers Yeast and Flex Seed Oil have been beneficial to my rejuvenation and healing process as well as light exercise

TBI/PCS are no fun to deal with at any age and I'm encouraged that your husband experienced some positive results from Neurofeedback.

Thank you Jeffn

[supermansmom]

Originally Posted by arthurhlevine

It's whine time folks. I am not much for it, but today is just one of those days, so here it is.....

I have been one relatively ****** off individual these past few years.
I never thought about things that way until someone posted a few words about people being angry at the world for the where and why and what and all else that causes someone to be fated to living with severe TBI.

Mostly about the headaches, but then occasionally too about muscle aches, and spasms, and joint issues, and the wobblies and its ever present companion nausea, and memory issues and aphasia and and and and and.......................

For those who have come to NT/PC, and such a life-situation due to a TBI event....well, about all there is to say is that life sure can be a ***** sometimes.....

Standard nothing is what applies to the folks sustaining severe TBI's who for some mysterious reason show a remarkable ability to heal and learn. Doctors just want more tests and to keep you coming in regularly, both so they can think that one day they are gonna be the white hatted hero, and because they know that you are somewhat of a "captive" client. A client that will need, and therefore continue to supply the good doctor with a lifetime revenue stream, a lifetime of observation and consultation and referrals and billings.......
But let's face it, once you have sustained an injury/insult, and have consequently shown what is continuosly considered to be quite some remarkable rehabilitative progress, and have had every test imaginable already done at least twice and none of them ever yeilding even the murkiest of clues, what then is the purpose of going on with it?
The truth of the matter is that all the tests in the world are going to show some sort of anomalies, they are supposed to you know. That's what happens to people with TBI....And chances are extremely high that any such tests are NOT going to locate or signify any sort of meaningful TREATABLE issue, and if the tests do miraculously show a causal effect, there is very little chance that there is ANY thing they can be done to positively impact and negate the symptoms that bother you., especially from a pharmaceutical standpoint!

Say and think what you will, but if have questioned more than a few, like every neurology related specialist I have seen, and NONE of them, that's right, NOT ONE SINGLE NEURO-PHYSICIAN has disagreed with my assessment of my situation. And yet they all want to continue with billing somebody for even more drugs and tests that in the end are useless and stupid to even consider, let alone pursue.

Drugs just won't work right if they effect one part of the brain that in ordinary folks controls such functions/issues, but doesn't any longer in the now TBI person, It's just foolish wishes that such issues be prevented in the first place when the parts of the brain that once managed such a potential causal effect no longer exist as a working or functional entity and are no longer controlled by the specific part of the brain the nature intended it/them to. That's why the neuro's and there psychiatrist buddies insist on one taking everything imaginable until "we find the one that works", which chances are, ain't never gonna happen, short of finding a few psycho-tropics that do little more than make what is left of your brain numb and keep you and you brain quiet and compliant. Keeps you coming for at least 2 months more for every drug they try, and at the very least one more follow up visit, doesn't it ????

I have a neuro appt. next month, if it turns into more of the same, I am washing my hands of all things medical, until shortly after I am officially dead. I'll just learn to live with it all....Since what I say really doesn't seem to matter to any neurologist I have ever seen, and I have now seen plenty, I will no longer grace them with my billable hours. All I any longer want anyway is relief from the headaches, the rest I can deal with quite well, thank you.....And since not a neuro-anything within 100 miles of here sees fit to prescribe me the medications necessary to stop a headache ONLY WHEN I GET ONE and instead all seem exceptionally intent on getting me to take at least something everyday and something new at every appointment, and since THAT WILL NEVER EVER EVER happen again, just exactly what would the purpose be?

One neuro researcher physician even went as far as to tell my wife and I that I was correct and that any further tests or testing regimens will not yield any meaningful results, and that any further treatments or tests centered on alleviating these terrifyingly massive headaches outside of simply taking large doses of narcotics when I get them, would be foolish, and (his words) "in my opinion ill advised"
But that hasn't stopped all the rest of them from wanting more and more billable hours/tests/prescriptions.....They, not a one of them as near as I can tell, are really not interested in what I think or feel about any of my "treatment options", they ALL seem to think that when it comes to such things, they are all right up there at, maybe being is more apt, the right hand of God.

Here is some really good advice for those with what is considered Severe TBI....AND their doctors too.....

Brains, like eggs, once scrambled, can never be put back together again.

That, contrary to whatever the neurolog-whatever you are currently seeing or are being referred to might want you to believe, IS just the way things go for people in TBI land......

The whole neuro-TBI treatment scene, in my opinion and based on my rather considerable experience and never ending research into such things is, with TBI related things anyway, borders on little more than a massive defrauding of the public, the insurance companies, and the government.

Feel free to differ with anything I stated above, state away whatever disagreements you like, you'll be wrong and I am right, and that, well, that's all there is too it.

Well, I certainly feel better now
I feel so much better, I'm gonna take Sasha for a walk uptown!

HAGD!!!!

AHL
Fully delusional, and yet, only semi-psychotic

I am confused. I am very new at this so please bear with me if I seem ignorant....I probably am!

Are you saying that once the brain is injured, that the person is never going to really heal? Or are you saying that once you reach a certain healing point, that nothing the DR has in mind is going to work? If the later question, a what healing point would that occur? My son has made pretty good progress over a year and a half after emerging from a vegetative state (48 days coma, 58 additional days vegetative state). He has a long ways to go, and I was wondering in YOUR opinion what I should expect or not expect. He is set to have some testing for abilities/lacking abilities that is suppose to give us a better picture. Are you saying that those test are a waste of time? I am not trying to pick apart your post or point out errors...I am just wondering just what I am suppose to do with my son.