Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


advertisement
Reply
 
Thread Tools Display Modes
Old 04-02-2012, 04:55 PM #11
Klaus's Avatar
Klaus Klaus is offline
Member
 
Join Date: May 2011
Location: England
Posts: 302
10 yr Member
Klaus Klaus is offline
Member
Klaus's Avatar
 
Join Date: May 2011
Location: England
Posts: 302
10 yr Member
Default

Quote:
Originally Posted by nwsmith1984 View Post
So, I shall continue my search for the perfect neurologist...or one that has successfully treated patients with a brain injury. One that actually cares...I'm sure I'll be looking for awhile ...
What is the point of this search, you know everything they might tell you already surely? I think early intervention is where a neurologist should be earning his or her (hefty) wages, once you've worked out what the hell is going on and been on neurotalk for a few months I don't think there's much left for them to tell you.
__________________
mTBI March 2011, spent around a year recovering.

Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
Klaus is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SpaceCadet (04-02-2012)

advertisement
Old 04-02-2012, 05:17 PM #12
SpaceCadet's Avatar
SpaceCadet SpaceCadet is offline
Member
 
Join Date: Oct 2011
Location: Las Vegas, NV
Posts: 756
10 yr Member
SpaceCadet SpaceCadet is offline
Member
SpaceCadet's Avatar
 
Join Date: Oct 2011
Location: Las Vegas, NV
Posts: 756
10 yr Member
Default

Quote:
Originally Posted by Klaus View Post
What is the point of this search, you know everything they might tell you already surely? I think early intervention is where a neurologist should be earning his or her (hefty) wages, once you've worked out what the hell is going on and been on neurotalk for a few months I don't think there's much left for them to tell you.
Before my injury, I was experiencing some pretty weird things...For instance, I was at karaoke with my mom and some friends. After one of my songs, I stepped off the stage and all of a sudden...my body felt like it was leaning to one side and I was having massive trouble thinking. I thought maybe I had a stroke or something. This lasted for about 30 minutes...It was really strange and scary.

There has been other weird things that happened to me before my injury...I can't really remember the details...but I've always thought there was something wrong with me.

So, to answer your question, I want a doctor that actually cares about me...and listens to me when I tell him I'm getting worse. I'd like someone to try and figure out what the problem is and stop pointing fingers at the brain injury. There is a possibility of something else going on, such as a disease, or another neurological condition...Since I've been in a constant decline my entire recovery.

I want tests to be ran on me...like a full blood panel, and whatever else they got besides MRI, CT and EEG. I know there is other things they can test me for...to find out why I'm getting worse.

Yes, I'm under a lot of stress...but usually when something stressful happens, your down for a couple days and bounce back to your normal brain injury symptoms. Well, ever since September, I've been having permanent changes. Such as losing the ability to watch TV and play video games. I used to do that with no problem. November, I lost that ability and it never came back. My brain shuts down instantly, as soon as I lock eyes with the television set. It doesn't matter if it's HD, standard or a mobile phone.

I've always had a little trouble with thinking and speech since the injury. Well, at the beginning of March, I woke up and the spontaneity of my thoughts and speech were diminished. I've also started to get physical symptoms that I didn't have before...such as losing my balance and weird, red colored floaters. Yesterday, I completely lost the ability to express myself. Nothing is coming out right, sometimes it won't come out at all. It's very scary...

I don't know, it's just been one step forward and two steps back my entire recovery. I'd like someone to take the time to diagnose why I'm getting worse and stop telling me what I already know...That's all!

Nick
__________________
What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
SpaceCadet is offline   Reply With QuoteReply With Quote
Old 04-02-2012, 06:36 PM #13
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
ginnie ginnie is offline
Elder
 
Join Date: Aug 2010
Location: Anna Maria Island Florida
Posts: 6,278
10 yr Member
Default Hi Nwsmith

In some respects I see what Klaus is saying. There is indeed alot of information for TBI right here. However you are your own best advocate, and we are not doctors. If you really feel you are not recovering, and are dissatisfied with the neuros, why don't you ask your PCP?. Do you have any kind of relationship with any doctor? When I get into trouble, I go to my PCP care first. I trust him more than anyone, and he usually has some very good advice. Not once has he steered me wrong. He even intervened when I wasn't getting through to my pain specialist. He called him for me. I would seek the doctor you know the best for direction. It must be scarry to have all those symptoms. I hope you recover soon. ginnie
ginnie is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
kkupka (04-02-2012), SpaceCadet (04-02-2012)
Old 04-02-2012, 06:40 PM #14
SpaceCadet's Avatar
SpaceCadet SpaceCadet is offline
Member
 
Join Date: Oct 2011
Location: Las Vegas, NV
Posts: 756
10 yr Member
SpaceCadet SpaceCadet is offline
Member
SpaceCadet's Avatar
 
Join Date: Oct 2011
Location: Las Vegas, NV
Posts: 756
10 yr Member
Default

Quote:
Originally Posted by ginnie View Post
In some respects I see what Klaus is saying. There is indeed alot of information for TBI right here. However you are your own best advocate, and we are not doctors. If you really feel you are not recovering, and are dissatisfied with the neuros, why don't you ask your PCP?. Do you have any kind of relationship with any doctor? When I get into trouble, I go to my PCP care first. I trust him more than anyone, and he usually has some very good advice. Not once has he steered me wrong. He even intervened when I wasn't getting through to my pain specialist. He called him for me. I would seek the doctor you know the best for direction. It must be scarry to have all those symptoms. I hope you recover soon. ginnie
It is scary to experience these symptoms. I'm losing my ability to think and speak...and it's not coming back, no matter how much I rest. I just want some answers.

I don't have a PCP because I don't have insurance. There is a really good nurse practitioner that I was seeing...but it's 50 bucks each time and they send the rest in a bill. She can only do so much...she referred me to the NV Community Enrichment Program.
__________________
What happened: I was randomly assaulted from behind in June of 2011. I was knocked unconscious for an unknown amount of time (less than 30 minutes) and have no memory of the event. CT scan showed contusion and hematoma of the left frontal lobe. I spent 3 days in the hospital. Diagnosed with Post-Concussion Syndrome in September 2011. Currently have Medicaid, Medicare and SSI.

Current symptoms: Brain fog, mild memory issues, problems with spontaneity, occasional spacing out, word finding difficulties, tinnitus in right ear and some other things that I can't explain.

Life after the brain injury: 4 years after the injury, I'm engaged to my beautiful girlfriend of 5 years, I'm the CEO of my own business, Notorious Labs, I've taught myself how to program complex games and apps which is a feat I never thought I'd accomplish and now live a semi-normal life with very mild PCS symptoms.

Slowly but surely regaining my life back.
SpaceCadet is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (04-03-2012)
Old 04-03-2012, 02:15 AM #15
Klaus's Avatar
Klaus Klaus is offline
Member
 
Join Date: May 2011
Location: England
Posts: 302
10 yr Member
Klaus Klaus is offline
Member
Klaus's Avatar
 
Join Date: May 2011
Location: England
Posts: 302
10 yr Member
Default

Quote:
Originally Posted by nwsmith1984 View Post
So, to answer your question, I want a doctor that actually cares about me...and listens to me when I tell him I'm getting worse. I'd like someone to try and figure out what the problem is and stop pointing fingers at the brain injury. There is a possibility of something else going on, such as a disease, or another neurological condition...Since I've been in a constant decline my entire recovery.

I want tests to be ran on me...like a full blood panel, and whatever else they got besides MRI, CT and EEG. I know there is other things they can test me for...to find out why I'm getting worse.
Well that makes sense. Good luck!
__________________
mTBI March 2011, spent around a year recovering.

Since recovery I have achieved a Master's degree with distinction in Neurological Occupational Therapy
Klaus is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (04-03-2012), SpaceCadet (04-03-2012)
Old 04-03-2012, 08:10 AM #16
Dejibo's Avatar
Dejibo Dejibo is offline
Elder
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Dejibo Dejibo is offline
Elder
Dejibo's Avatar
 
Join Date: Jan 2008
Location: New Hampshire
Posts: 7,332
15 yr Member
Default

My neuros sometimes gloss over what I am saying and want to talk about pharmacuetical meds and not suppliments. I finally after 5 visits got them to understand.

CLA (conguated linelaic acid is good (eat a couple of handfuls of sunflower seeds each day. ) they also have good omega fats.

Primrose oil is another goodie. Helps nerve function in fat areas (like the brain)

Dont forget your vitamin D. 2000 units a day is a good dose. Its the only thing we cant make on our own, and most of us are covered in sun lotion now. We need the sun to do it. A 15 min walk each day is helpful. it helps rebalance cortisol (stress hormone) levels and helps anxiety.

dont forget a good multi vitamin.

Eating well is still your best defense to help your brain heal. We need nutrients and real food. Most of the food we eat today is dead food, and dead nutritionally. Eat as many raw foods as you can. Salads, fruits, nuts, eat cooked fish (wild caught salmon is amazing for your good fat.) and try to start to remove as many processed foods as you can. MSG is horrible for the brain, as well as sugars (fake or real) and high fructose corn syrup should be avoided. You must become a label reader in the store which is quite a challenge on days when your head hurts, and you have a fog fall over you and its feeling like you are over stimulated. Hang in there. If you cant finish at the store, at least read them once you are home. Learn about what you are putting in your body.

There is a move called Food Matters on Netflix or even youtube if you like. Just educating yourself on what you are eating will do great things for you.

best of luck ((hugs))
__________________
RRMS 3/26/07
.

Betaseron 5/18/07
.

Elevated LFTs Beta DC 7/07
Copaxone 8/7/07
.



.
Dejibo is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ginnie (04-03-2012), Klaus (04-03-2012), SpaceCadet (04-03-2012)
Old 04-03-2012, 09:34 AM #17
xxxxcrystalxxxx xxxxcrystalxxxx is offline
Member
 
Join Date: Oct 2011
Location: USA
Posts: 225
10 yr Member
xxxxcrystalxxxx xxxxcrystalxxxx is offline
Member
 
Join Date: Oct 2011
Location: USA
Posts: 225
10 yr Member
Default

Hi Nick,

I understand what you're going through. I was discharged from the Head Injury Clinic because they said there isn't anything they can do. I'm going back to see the neurologist who actually told me just to go see the Head Injury program and not him. (in so many words). I dont think he planned on the clinic to discharge me but they did and told me to see him instead. I feel like I was bounced in not so many words.

I am around the nine month mark. I am trying to accept my injury and it's effects on me. I dont think I'm in denial but I do think maybe more should be done. Maybe it's the next step into my acceptance. Not sure. I do know I'm on day seven of a migrane and something needs to be done.

I never had my neck or back xrayed and I think because of the tension I feel in my neck along with the burning sensation in my upper back spine area warrents some looking into. I mentioned this to the head injury clinic and they looked at me like I was crazy. I am also fighting a crummy tummy as well and that hasn't happened since the first month of my injury and it's so much worse when I lay down. Interestingly enough when my head hurts the whooshing sounds goes away. When the headache goes away the whooshing sounds is back. Not sure what that means.

I can accept all this but I just need to be sure that there isn't something we are missing. So Nick I would say do what you feel you need to do. There is alot of wonderful information on this site and for that I'm grateful. Like Nick said no one told him not to drink, what supplements to take etc... I've worked in specialists office so I know what goes on behind closed doors. I know they have to see one patient every 15 minutes in order to bill out and stay afloat.
xxxxcrystalxxxx is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SpaceCadet (04-03-2012)
Old 04-03-2012, 07:59 PM #18
July63's Avatar
July63 July63 is offline
Member
 
Join Date: Oct 2010
Location: Bronx
Posts: 136
10 yr Member
July63 July63 is offline
Member
July63's Avatar
 
Join Date: Oct 2010
Location: Bronx
Posts: 136
10 yr Member
Default

Neurologist do suck.

I can give you a list of names in NYC (one asked me to touch my nose).
July63 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SpaceCadet (04-03-2012)
Old 04-04-2012, 12:03 AM #19
MommaBear's Avatar
MommaBear MommaBear is offline
Junior Member
 
Join Date: Mar 2012
Location: texas
Posts: 96
10 yr Member
MommaBear MommaBear is offline
Junior Member
MommaBear's Avatar
 
Join Date: Mar 2012
Location: texas
Posts: 96
10 yr Member
Default

From bits and pieces that I've picked up over the last few months, my understanding is that neurologists treat "physical" issues, like chronic pain or numbness or sports injuries like bad knees / tendonitis type stuff, you know, nerve damage things. At least that's all the neuro's do in my small rural town. They can diagnose TBI but can do nothing about it. (how about let's try a tens unit for the brain haha!! ...not...) NO help at all, don't bother with them, they can't fix anything.

Neuro PSYCH doctors, on the other hand (neuropsychiatrists and neuropsychologists) are better trained to treat TBI / PCS symptoms -- they are more "mental" oriented and can help much more with thinking problems like the brain fog, flooding, adynamia, anxiety, communication issues etc., that are the result of the injury.

Unfortunately for my son, the nearest ones to us are an hour away. Hoping to find one ASAP and get started!!

So what I mean is that neurologists may diagnose treat a physical injury, but the psychs treat the resulting and often permanent cognitive symptoms of the injury, by teaching other parts of the brain to compensate for the "dead" parts using assistive aids.

Great read -- "Over My Head" by Claudia Osborn.
MommaBear is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Klaus (04-04-2012)
Old 04-04-2012, 10:44 AM #20
Lightrail11's Avatar
Lightrail11 Lightrail11 is offline
Member
 
Join Date: Mar 2012
Location: Phoenix AZ
Posts: 531
10 yr Member
Lightrail11 Lightrail11 is offline
Member
Lightrail11's Avatar
 
Join Date: Mar 2012
Location: Phoenix AZ
Posts: 531
10 yr Member
Default

FWIW my clinical neuropsychologist was awesome. She saw me 4 times when I was in-patient in the neuro-rehab unit in St. Joseph’s hospital in Phoenix. The first time she saw me I hadn’t cleared post-traumatic amnesia so I don’t remember that session, but the following times she provided information to my wife and myself, and gave us hope when things looked bad. More importantly, her evaluations provided the focus areas for the therapists to work on when I was in-patient, continuing as an outpatient and suggesting things for me to work on independently as I recovered at home. Three months later my follow up neuropsych evaluation results were that my cognitive abilities had improved back to what they call “pre-morbid” expectations. I was able to return to work and start driving again about six months following what was described as “severe” TBI.

I still deal with mood problems (depression, anxiety) but because of seeing progress in regaining memory and executive functions, I am optimistic about my ability to recover from these as well. I plan to either start CBT or practice on mindfulness meditation to work on the emotional issues.
Lightrail11 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Klaus (04-04-2012)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
PD sucks jeff1smith Parkinson's Disease 7 01-31-2012 10:22 PM
MG Sucks!!! USMC_with_MG Myasthenia Gravis 5 01-25-2009 01:21 AM
Insomnia sucks. Erin524 Multiple Sclerosis 10 02-16-2008 12:13 AM
It sucks to be me! Taffy Multiple Sclerosis 20 11-19-2007 06:29 PM
It SUCKS! Laurie43 Peripheral Neuropathy 6 02-10-2007 01:01 AM


All times are GMT -5. The time now is 10:01 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.