[Brainstemmed]

first and foremost, i want to say thank you so very much for those of you that have shared your stories with all of us...

and even more appreciation to those of you that willingly offer so much very good information and advice...

after spending quite a bit of time reading info here on this site, and using the search function to find answers to some of the many questions I have, I am convinced this group can be a very reliable and helpful source of compassionate answers.

unfortunately, you guys speak from experience and i am saddened to hear how so many people have had their life changed instantly...

and i am completely amazed at the lack of compassion and good information that highly paid, highly educated health care professionals pass along to us with confidence, when they are dead wrong so often it astounds me...

needless to say, i am confused and angry, exhausted & scrambled, and i have never been so sick in my life…like you, i just want my life back, and knowing that will most likely not happen is a grieving process that i am currently experiencing...it's just so hard to know so many things in my life are gone forever...

here is what i am hoping i will be able to do here…i would like to share with you my background, and what happened to me, and kinda, sorta keep the thread going with some detailed questions about what I should be doing on a wide range of issues…

i think my case is unique, although i understand all brain injuries are…i have underlying conditions and i am at the end of my rope and need some guidance, compassion and answers to some tough questions that many of you most likely can assist me with due to your unfortunate experiences with TBI And PCS…

would you, as a group, allow me to pick your brains?

hopefully this collaboration will result in some positive improvements over the coming weeks / months / years...

and hopefully sharing my story will benefit another somehow, some way..

sent with 100% of my love and gratitude for all of you that share so much…

thank you from the bottom of my heart to our God and to all of you…

i am so glad to have found this place…it only took 6 months of pain and agony to get here…

Brainstemmed

[Lightrail11]

Originally Posted by Brainstemmed

first and foremost, i want to say thank you so very much for those of you that have shared your stories with all of us...


and i am completely amazed at the lack of compassion and good information that highly paid, highly educated health care professionals pass along to us with confidence, when they are dead wrong so often it astounds me...


Brainstemmed

Hi and welcome.

Just to share my personal experience with the medical profession, I have nothing but good things to say about those that cared for me after my accident and later facilited my recovery. I'll take the liberty to include names as appropriate.

Trauma surgeon Scott Petersen MD assembled the trauma team that stabilized me upon arrival at St. Joseph’s hospital trauma bay. Neurosurgeon Steve Chang MD worked past midnight the night of my accident to complete the craniotomy that literally saved my life.

Clinical neuropsychologist Jennifer Wethe, PhD, showed great compassion and understanding in explaining brain injury and recovery plan to my wife and me (to the extent I could understand at the time). Her NPA was instrumental in identifying specific deficit areas for the rehabilitation team to focus on.

Physical Medicine/Rehab Specialist Christina Kwasnica MD visited be daily in the hospital, shared encouragement and hope, and more importantly led the dedicated team of OTs, PTs, and ST’s that helped me recover my physical and cognitive functioning.

I understand that not everyone has the same experience, but I want to recognize and thank all those in the medical profession that I had the privilege to have on my side through my trauma.

We look forward to you sharing your experience, strength and hope with all of us as well. Welcome again.

[Brainstemmed]

Background:

25+ years of Fibromyalgia, Chronic Fatigue, Chronic Pain, Restless Leg.

prior to my injury, i was slowed substantially by the fibro, and lost a business and 2 homes due to financial difficulties being unable to work thru it all...

we moved to Mexico 5 years ago to a tropical, beautiful, gorgeous place we visited on vacation...we visited 4 times before the move and i always feel better when i am on the island. i want to go back home.

while there, i am able to work online and work at our vacation rental we purchased...and i continued to struggle with neck & shoulder pain as well as over most of my body...but much better than the harsh climate in the US...

a friend of mine visited - a chiro - and offered an adjustment which i gladly accepted...there were no disclaimers, no paperwork...she did the adjustment at the house...

i recall feeling crummy that day, then a lot better then next, and then a downward spiral started, and i was unaware of what was happening to me...

over the course of the next 12-18 months, as she visited the island and i rec'd mroe adjustments, i felt worse and worse by the day...not knowing that each adjustment gave me a slightly worse concussion on my brain stem than the one before...always with the same result: complete crash that day, better the next, then horrid the day after...

the chiro adjusted my upper cervical vertebrae 12-15 times…adjustments were done using the risky and controversial Blair Technique that adjusts the ‘axis’ using blunt force to the side of the neck, just under the ear. The result was a series of increasingly significant concussions to my brain stem.

that diagnosis has been hard to come by, but it has been verified that over the course of 12-18 months i rec'd 12-15 increasingly significant concussions to my brain stem.

i have come to find out that the risk involved with this adjustment is well documented even though many chiro's refuse to do this adjustment.

since i am new to this board, i am unable to post a link to site that has info on this, but the risks associated with this adjustment have been validated by neurologists and others...i will post it if i can soon...

i feel so ashamed that i actually ASKED for the adjustments because even tough i felt horrid when done, i would always feel better temporarily, even if it was only for a day.

i would strongly recommend that anyone thinking of having this done reconsider such a risky adjustment.

What happened:

The last adjustment occurred May 10, 2013. i rec'd an adjustment on May 9 and since the chiro was to leave the island, again on May 10...

the final blow was like a knock out punch in a heavyweight fight...i instantly felt horrid...no balance, as nauseated as one can be without puking, unable to stop the pain in my head, zero focus and zero concentration...

i laid in bed helpless for 7 days until we flew back to the US to seek treatment...

that flight was the worst flight of my life, and up until that day, the worst day in my life...since then, i have had many, many more days that were far worse...

one of them came the next day after the flight where my wife and father took me to the emergency room and i just do not recall much of that day except feeling like i was going to die...

since then i have been to see more health care professionals than i thought i ever would...some have been ok, some have been absolutely cruel...

i have not been able to return to my home in mexico, although there are some serious legal and business ramifications if we do not return soon, and we are trying to decide if we should go take care of that, then return back to the US...

i have had such a hard time fighting my HMO that i even had an injury at all, and care is so very expensive and time consuming...sometimes i just want to try and do this on my own...no one seems to be able to help me...it is such a nightmare...

of course, the flight there is horrifying to me...and i do not wish to spend any amount of time in a mexican emergency room...

as of today, i continue to experience almost all of the symptoms, although some are improved, but some are not...

vestibularly, i am messed up...i cannot handle motion, most especially horizontally...

i cannot read, drive, watch tv or movies and have absolutely zero social life...i spend 24/7 in a dark, quiet room and i move very, very slowly at everything i do...

i eat, sleep, work as little as possible (4-6 hours total in day, spread out over 12-14 hours, but i have no choice, i must work)...that is all i do...it is all i can do...and most days, that is way too much for me...

any time i get into a car, i get extremely nauseated and a huge headache that will last for days...even if it is 5 minutes in the car...it is just unbearable...

Symptoms:

Cognitive dysfunction

Very emotional / crying all the time

I speak, work and move and do everything very, very slowly

I crave dark, quiet and slow

Unable to drive, unable to ride in car

Unable to read, watch TV, movies or any visual stimulation

Unable to go for walks longer than 4-5 minutes.

Immediate, short term & long term memory problems

Difficulty finding...um...how do you say it...um...oh ya: words!

Quick to anger and quick for all emotional responses.

No physical work is possible at all...no dishes, no food prep...

I can only work online via e-mails…I can read them slowly and respond slowly, and when I cannot think of a word, I can come back to it or ask…I can control the pace of work much better this way. i must work or i will lose all i have soon...it is a very precarious situation financially...

i sleep about 10-12 hours a day...any time not spent on a computer (which i try very hard to avoid) i spend praying for help and guidance from God.

zero alcohol, 2 cups of coffee each morning (starting at 3:00 AM until around 10:00 AM each day), no soda, no other caffeine, only water and juice all day.

Questions (the first of many):

Ritalin. i have tried more medicine in my life than everyone i know combined. for fibro, nothing worked except fresh air, sunshine, warm climate and a slow pace...which i found plenty of on the island.

Ritalin seems to be the only thing that has helped me at all...and i recently was prescribed a small amount to assist me...

please bear in mind, due to the fibro, my central nervous systems was shot to begin all this...and medicine to me is not like medicine for anyone else...i am hyper sensitive to all medicine, and i always have been like that...a little goes a long way...

i usually take 1/2 of a child's dose of most medications and such is the case with Ritalin.

i currently take:

5 mg of Ritalin, although i am only prescribed 2.5 by my very uncaring and ignorant neurologist at my completely inept HMO. i may not be correct, but i believe children are generally prescribed around 10-20 mg a day.

1 mg of Valium (down from 5, which did not help me at all, very counterproductive.)

250 mg of divalproex (which i am unsure why i even take it since it is such a small dose and i feel nothing from it)

3 mg of melatonin at night for sleep (up from 1 mg after 15 years)

Lisinopril for high blood pressure ( i cannot recall the amount, but very little).

my HMO doc wrote to me yesterday and told me this exactly:

"1. I think that a higher dose of ritalin is not a great idea unless it were to bridge you to a different medication to elevate the mood. This was intended as a short term medication as well."

so 1/2 of a child's dose is too much according to him. as far as i know, and i could be wrong, that a normal dose for an adult male would be 50-60 mg a day. 100 mg is not abnormal...high, but not unheard of...i would like to know what others know about dosage...

"2. We do not have a specialist in traumatic brain injury but I am very experienced in taking care of it. I do not think that you had a traumatic brain injury. You are always welcome to a second opinion. I do think that your symptoms are somatization, however I have not put this diagnosis in your problem list."

yes. seriously. i rec'd that exact e-mail from him yesterday.

the ONLY med that has helped me to function (i have taken it for only the last 2 weeks) will soon be unavailable to me. he will not renew the prescription.

with it, i can function...barely...

without it, i am non-functional, and that is not possible for me at this point in my life, i mist be able to do at least a few hours each day running my businesses or they will fail...

please Lord, help me.

give me strength to get through all this.

Brainstemmed

[Mark in Idaho]

brainstemmed,

Welcome to NeuroTalk. You story is frightening. The chiro sounds negligent in my view. Upper neck adjustments should be very gentle.

I wish I could help you but there is simply too much information for me to process. I have had to start on a strong med (Klonopin) to settle a brain that was going wild. Maybe when I can get drug free, I can make sense of you needs.

My best to you.

[hopefulmom]

Welcome....I don't have a mTBI but my daughter does so I can relate to what you are stating as your symptoms. She pretty much had all your symptoms except that she could watch movies on a small computer screen. (This made sense to the eye doctor)

She is 2.5 yrs out. However she is improving cognitively month by month--tests scores are increasing. She still can not do vestibular or eye therapy yet

I know more people will reply but as usual you might want to begin Mark in Idaho's vitamin regime. There is a sticky and most people write that it has helped them.

What has helped her...
acupuncture really helped with her headaches,

osteopath helped with the pressure in he head,

wearing sunglasses and hat--24/7,

finding the correct dosage for her depression,

sleep meds,

cognitive behavioral therapy for help with accepting the position that she is in

prism glasses with a dk blue tint (most people want to eliminate the blue but this is the color that soothes her eyes.

This will get better

My best,

[Brainstemmed]

Lightrail:

your story and your info has been helpful to me for sure...thank you very much...

and it is good to know there are health care professionals out there that know what to do and how to do it and most importantly: they care...

of the dozens of care givers i have encountered since my injury (possibly 100's?) i have met 5 or 6 that understood what happened, and actually seemed compassionate and caring.

one of which is a truly fabulous vestibular therapist...she is the best of the best when it comes to knowledge, experience, understanding and compassion...and she is not part of my HMO and my HMO has denied any payments for care from her...

all the while, the vestibular therapist at my HMO nearly killed me...she set me back tremendously by completely over-prescribing ocular exercises that sent me into a tailspin...on follow up appointments, she would berate me (slightly, but seemingly endlessly) for not doing the exercises...i believe what she did borders on malpractice and i have not ruled out obtaining legal advice on the issue...

i have yet to meet anyone at my HMO that knows much about my injury or cares enough to offer more than dart and a dart board..."let's see, which med are we gonna try today? let's play darts! let's throw the dart and see where it lands...oh wow! today it's xxx! now go stand over there in line with everyone else and get your meds...no time for questions...trust me, i know how to help you...i saw this on 60 minutes 3 years ago, so i know what you are going thru...time is up...NEXT!"

the chemistry experiment inside my body is a delicate ecosystem, yet nearly every appt ends with a new drug taken from the dart board...

is it allowable for me to name this HMO and where i am in the hopes that someone here has met anyone helpful? i am obviously disgusted with them and will be leaving them soon, let the great Obamacare experiment begin!

Brainstemmed

[Brainstemmed]

Originally Posted by Mark in Idaho

brainstemmed,

Welcome to NeuroTalk. You story is frightening. The chiro sounds negligent in my view. Upper neck adjustments should be very gentle.

I wish I could help you but there is simply too much information for me to process. I have had to start on a strong med (Klonopin) to settle a brain that was going wild. Maybe when I can get drug free, I can make sense of you needs.

My best to you.

Mark:

you have been so gracious and giving of your time and your knowledge...thank you so much...

i understand you are having a tremendously difficult time right now...

please, my friend, take care of yourself as best you can in these tough times...

there is a lot of good kharma in the bank for your use...

a lot of prayers your way for resolution to your plight...the stress must be overwhelming...

life will be better for you soon.

God Bless.

Brainstemmed