Finding the right Doctors

[Eleusis]

I am a STBI Survivor of 35 Years and the Overwhelming Despair of finding the right Doctor who can do anything besides just guess and prescribe cosmetic Meds is a Trauma worse then my original Wreck.

Dont you think the Brain Injury Association or Epilepsy Foundation or some kind of an Organzation somewhere would have a Directory of qualified Doctors ?    I am ill from going to different Doctors that dont really know what they are doing. 

What about a Society of Brain Injured that have a voice and can express this need to the AMA or whoever in Washington DC ?  Does anyone know anything about this ?  Most of the Brain Injury Associations and Support Groups when asked this, never respond to this vital topic.

[susieq1027]

I know exactly what you mean and I agree. Dr's don't know crap about brain problems and it's like they don't care. Get told to live with it. I wonder what they would do if they had to live with it.

[Eleusis]

after having gone thru this for so many years without any kind of logical support whatsoever.....  I would have thought by now that some kind of an Agency or Organization would be concerned about what its like having gone thru this, so they could do something for other people who are just getting started and havent got a clue......

holistic suolutions actually exist and no one is alllowed to speak.......

ever since the beginning, each time I have seen a Doctor,,,,  all I ask is.....  what does the future hold ?.....  what am I to expect ?

I have never got one single answer., except....  if you arent going to take these Meds, then we arent going to help you !

I dont need any Zombie Meds,,,,  all I want is an answer 

eating P O T so far is the most effective thing I have found.......

[randysdad]

 What things does that help with? Mark

[Eleusis]

What things does 'that help with" ?  mean ?   YOU mean with the POT ?  Go look it up.......  definitely better with Pain than anything.  But most of all the frustration and anxiety of 35 years of leaving no stone unturned for support, or finding work.  Or having a Child and cant afford to ever show or drive him anywhere, or do family things with.....

TBI Survivors have Chronic Hypertension and there are No Meds, or Chemicals that will stop it....  we are faced with a Life Expectancy Issue.  The peril of knowing you are going to die, and never knowing why you were kept alive to begin with ?  (Or just to keep these idiot moron Doctors in BUsiness lliving a life of luxury) 

When you know what the cure is and go to one of the idiot Doctors and no one will listen to you or give you any respect......

Even when you are a survivor....  when people speak to you like you are a basket case zombie.  I think most TBI poeple are probably alot smarter and have more together than regular street people.....

Its a heel of alot better than the Pills,,,,,,,   Mark.....

[randysdad]

Wasn't trying to be a smartass or anything. Maybe i put it the wrong way,been known to do that. I really did/do need to know.  I'm just looking for anything that helps in anyway. That's why i was wondering if it helped with anything specific. Mark

[Eleusis]

what I didnt understan d Mark,  was if you were referring to POT or not, or just what......  your question was kinds of general.  SO I was just guessing.

Assuming that this is what you are referring to......  in Certain Areas where POT is licensed.  One of the qualifications is specifgically for Brain INjured or people with Seizures.  So with that alone it has merit.

I dont care what anyone says......  it something that (in a stress free environment of course)  allows my Mind to be more receptive and spontaneous.  With Pain, I can cope with it alot better.  I can deal with the frustrations of being in a dysfunctional society and come to the sudden realization that I dont need to be introverted because this is what the Doctors insist...... 

If I am not going to get any help from any of these MIRACLE WORKERS that have more trouble coping with life than I do.  That its time to understand that we are on our own and the only way we are going to get anything accomplished, is by going out and doing it and wether we succeed or not.......  at least we have solid fact in front of us, and not basing our lives on mirages and illulsions on TV.

For me,,,,  I dont smoke it.  I eat it.......  much different.  It allows me to veiw things with multiple viewpoints and probabilities.  It halps me make more accurate decisions about my future.  (which the Medical Commuinity miserably fails with)

I got off all the Meds and Neuro Tranqs with Vitamin B12b INjectables,,,,,,  and close attention to my Diet and NUtrients.  I Researched this in U of Cal myself and found this alternative.

HYdroxy Cobalamin and Methyl Cobalamin........  people with Brain Injuries have difficult absornbing Nutrients froim the Food and cannot always get it thru their stomachs either.    Mega Vitamin Therapy is what cured me and lost the Epilepsy !

Now I have Chronic Hypertension.  I am having excellnt results with Milk Thistle and Lecithin.  Also, I am very sensitive to my surroundings and I think TBI people should be given the opportunity to have seclusion when is needed.  Someplace still and quiet, without distrafion so they can get their act together at their own speed and not someone elses.....

People with Brain Injuries, need to have help from other people that have had the same.  Because the Medical Zoo is just a bunch of clowns........  I would like to be proven wrong at this, but 35 years and I havent been proven wrong yet

[Eleusis]

there has been no one from the Medical Field anywhere to be seen on this site......  no Interns no Nothin

dont you think if there were any really concerned professionals or wannabes, they would be here interviewing us to find out what some of the backrgound was like ?

Poeple with Brain INjuries need to have a Voice.  Just like any other minority, they need to have an Active Society or Organization.  the BIA and EFA arent doing anything but scheduling meetings and workshops and support groups....  but only to make themselves l;ook important and garnish wages from the Grants they get to keep them alive.......

We need a Organization run by the Brain Injured for the Brain Injured...... 

A good place to start is a Handbook at the Brain Injuiry Clinics that give your family or whoever is taking care of you.  A set of guidelines and a handbook on what to expect, instead oif just leaving them in a whirlwind of unanswered questions.....

go get the Video "Queen of Hearts" sometime....... 

[swimrx]

Although TBI is not my area of expertise - it is quickly becoming just that.  I am a health professional that suffered a severe TBI 1 year and 3 months ago.  I'm sorry to say that a lot of what you think is somewhat correct.  Neurologists have the background to deal with the physiological implications of brain trauma.  Neuropsychologists are trained to deal with behavioral deviations caused by lesions (in this case "bleeds" and clots or surgically removed areas) in the brain.  It sounds like that is probably the first type of practioner that you should seek.  Any decent rehab facility should be able to provide caregivers with adequate direction.  I realize that 35 years ago is quite a long time ago (the year that I graduated from high school to be exact).  Not nearly as much was known about tbi then but the medical field has certainly come a long way since then.  I think you should probably try to find a neuropsychologist at a rehab facility and see if you can start there.

[Eleusis]

well maybe now you are on the other side of the fence yuou will soon discover more and more of what I am saying to be correct......

Neurologists I have been to are completely oblivious to ESD or Sequelea......  the only thing that makes them happy is if you grovel at their feet and cheer and praise them for the Meds the prescribe..... 

Neuropsychologist that I went to, only knew of Sequela as a Text Book Term....  he was 1:45 mins late to a 2 hour long appointment...  I had to drive about 400 miles round trip on a Motorcycle on snowy roads.....  I had to wait 2 1/2 months for the appointment

what he did was try to encourage me to taking his Meds so he could get me hooked into making regular return vistis

I moved to San Francisco 4-5 years ago and went to UCSF which is a small city of Medical Personel.  It also took several months to get an appointment......  I had to go to the Emergency Room in the meanwhile because I was Blacking out in Public on the streets....  they told me all I had to do was go make an appointment to go see my Primary Care Physician, and made me leave

When the appointment finally came around, they were over 2 hours late also.......  a little girl came into the room, she looked like she was maybe 13 years old.  She was from India and could barely speak english......  I had 3 pages of symtoms, she told me to make an appointment and show her which were my 2 primary symptoms and when I cam back we would deal with them.......

I asked her how long till the next appointment......  she said,"oh, about 2 - 2.5 months !"

I have plenty of more stories

All I need is a Doctor that is familiar with ESD (or Sequelea) and I am trying to find a Chiroprator that can do an Atlas CI Adjustment to get rid of my HYpertension because I am soon to die from it.  It is something new to be discovered.......

if you had a Head Injury,,,,,  I would say within another 1 - 1.5 years you are going to start having the Headaches and some form of Epilepsy if you havbent already........  it would behoove you to look into the Atlas C1 Adjustment too when the time is right....  start monitoring your PUlse and Blood Pressure now so you can notivce when it starts to go up.......

I can say how long because I didnt know until recently that this was for survivors and Sequelea victims....  but you need to know that its on the horizon

As for Sequelea and ESD -  Epileptic Spectrum Disorder for those who havent been following this so far.......  it really doesnt need an Onsite Visit to a Doctor.....  Email is perfect......  to just have someone who can keep track of your symptoms that can advist you is something serious is happening.........

For the Doctors that dont have a clue about Sequelea and ESD......  all they see is reams of Text Books Symptoms and figure that you have all of them lock stock and barrel........  this couldnt be further from the truth.....  each person is going to have their own set of symptoms corresponding to their Impact Zone.........  TBI 101

but what ESD is.....  is a constellation and myriad of symptoms that are always changing.

So if you have some TBI Background in your Medical HIstory, there would be nothing better for you to do than get educated and updated on this, because there is a world of survivors out there that are DYING for support from someone that really knows whats going on.  Hopefully Holilstically in this case........

If you ever go to a Neurologist or Neuropsychiologist (I forget the name of the other one,,,,  Physiologist  HAH !  Mind like a Steel Trap !

have you ever seen any kind of TBI INformation Brochures or anything about local support ?  I know the Hospitals never have any.

Brain Injury Support needs nothing better than Medical Professionals that have had Brain INjuries themselves and could easily start a Major Non Profit Organization eligible for BooKoo Grants.......  I could put you in touch with the right people if you were ever so inclined

What I was told was that NeuroPsychologists (by the one I went to go see) are supposed to give people whatever therapy to get their lives back on track in living Independently and providing for as much of their personal needs as they can possibly muster.....  never said anything about blood clots or lesions.........  but I suppose counseling with behaviorial issues regarding coping with surrounding society and its elements

this is not what I need......  I need something to stop the Chronic Hypertension that Drugs or Meds cannot erase.  I am a ticking timebomb...  with a life expectancy issue

When I am on Pills I just sit and stare with a blank expression drooling all over myself......  but at least with POT, I can smile and carry on a conversation and make other people laugh...... 

If this discussion continues.....  I will tell you about the EFA EPilepsy Fouindation Board Meeting I was invited to 2 years ago, by its Director.......  and the BIA Brain Injury Association encounters.........

If you are a Doctor, you could make alot of difference here and if this Website wont pick you up......  then I have one

People with TBI (among others)  need to have some kind of direction and know if they are on the right track or not.  And most of all what the Future holds......  this is the right kind of website, but it needs some Cards,,,  Lab Mice

Living Dazed and Confused for a lifetime only ads to the misery......  from all I have experienced, I would have easily traded any kind of Drugs, just to know what the hell was supposed to be going on and overcome the misery and agony of living in daily wonder..  someone just to say,"hey you are doing the right thing, or try this,,,,,," 

One thing that helps your memory is when you say what you are trying to remember out loud.....  .... 

ONe trhing this Websiote really needs is a list of qualified Doctors that know what they are doing..... that is, if any indeed exist