Does anyone happen to know anything about, or any doctors that could help with a situation with recurrent traumatic closed brain injury that has resulted in a GCS of 8-12?  Of note might be that it's a situation that has been ignored for some weeks/months.

Thanks in advance

Cat

Cat - at what point in this injury was the GCS # arrived at?  What caused the injury?  Those numbers are fairly serious.

Sounds like it would take the expertise of a good neuro.

Keep us posted.

Carol

Carol I honestly can't be sure how accurate the GCS # is - it was done from memory from those present at the time.  

This is the site the doc (a friend of the families) referred me to after me making the comment when I had another 'spell' that the world seemed all wrong and it felt like I was in a time slip.START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


There have been 4 significant injuries, 2 resulting in loss of consciousness, and one that I was completely unaware of where, who, what etc.  At the time of the 2 back to back incidents, the doctors started me on seizure meds and the neuro decided it was far more important to discover why I passed out rather than if any damage was caused.  The techs explained to me it would take at least 6 weeks for the severe concussion to heal, but that was before I went and hit my head again the next day losing consciousness and losing all awareness of reality.

With the clusters and the pituitary tumor, not to mention the suspected stroke before any of this happened has made things rather complex.  It would take a book to try to explain the intricacies of all that has happened.  I've known something was wrong, just couldn't convince anyone else of it.

Unfortunately, the military health care system is putting up several road blocks to me getting in to see the proper docs.  Of the list of symptoms, my mom figures i have them all, I think she's stretching it, but that's what mom's do, they worry.

Anyway, that's the basics.  The GSC was based on eyewitness accounts of my response after the fact, so I'm not even sure if it has any bearing.

Cat

Cat,

I am clueless what you are talking about but it sounds very serious. What is a GCS #?  Knowing what a pain military hospitals can be I hope they let you go some where else. Johns Hopkins is about 10 hrs away and my guess is that they would be able to help. My friend was treated there after being flown shock trauma from a horse accident that left her unconsious. It was a long recovery but she was very pleased with the care. I really am not sure but I do know Hopkins has good nuerology. I hope you feel better soon and are able to get the help you need.  ((HUGS))))

Charlotte

cash5542 wrote on Jan 1^st, 2009 at 10:19pm:

Cat, I hope you feel better soon and are able to get the help you need.  ((HUGS)))) Charlotte

^^THIS!!!  [smiley=hug.gif]

Charlotte and Frank thanks for the hugs :)

The GCS # is the Glasgow Coma Scale, it's 3 ranges are mild, moderate and severe, with the highest number (I think if you reach a 9 you are considered in a coma).  No one is sure how long I was unconscious the 2nd time because only my 14 y/o was home.

This has been a big part of why I keep forgetting to call you :-/  - sowwy - there are days I forget if I had breakfast.  Unfortunately the stress of the holidays seems to have made things much worse and I've had 7 falls since the 20th of December, none severe, and only 2 hitting my head and not hard.  But when I couldn't walk a straight line Emur (the doc friend) about lost her mind and that then sent mom into a tizzy.

Because there is no base here, there are next to no tricare docs here, the neuro I was seeing, referred me to Duke, but tricare denied the referral because he's not a tricare network provider.  

I mean I"ve always been dain bramaged but I think I"ve carried it to extremes this time hehe.

Just wondered if anyone out there knew of someone who might have experience with TBI's (traumatic brain injuries).

Cat

Cat - the following is information used here - perhaps that will give you some insight.  In my area of employment, we don't start to worry unless the number is below a 9.



 The Glasgow Coma Scale
 
   The Glasgow Coma Score is the most reliable of the various coma scales currently in use.  It also requires only a brief examination of the patient and can therefore be obtained early on by professional people, such as paramedics.  Because it is easy and quick to determine, it can be repeated frequently.  Scoring the patient often and regularly can help make predictions about the outcome.  Predictions made on the outcome of the patient are typically very accurate and when they err, they do so on the optimistic side.  
 
   The Glasgow Coma Scale was designed to meet a need for a standardized initial evaluation.  The scale assesses three components: eye opening, best verbal response, and best motor response.  The lower the mark is, the more severe the brain injury.  The lowest mark possible is 3.  The highest mark possible is 15.  As a patient comes out of coma, the mark rises.  The scale is as follows:  
 
Motor Response Example Score
Commands Follows simple commands 6
Localizes Pain Pulls examiner's hand away when pinched 5
Withdraws from Pain Pulls a part of body away when pinched 4
Abnormal Flexion Flexes body inappropriately to pain  3
Abnormal Extension Body becomes rigid in an extended position when examiner pinches him 2
No Response Has no motor response to pinch 1
Eye-Opening   .
Spontaneous Opens eyes on own 4
To Voice Opens eyes when asked to in a loud voice 3
To Pain Opens eyes when pinched  2
No Response Does not open eyes 1
Verbal Response (Talking)   .
Orientated  Carries on a conversation correctly and tells examiner where he is, who he is, and the month and year 5
Confused Conversation Seems confused or disoriented 4
Inappropriate Words Talks so examiner can understand him but makes no sense 3
Sounds Makes sounds that examiner cannot understand 2
No Response Makes no noise 1

 
 
A chart that may be helpful to track a patients' progress may look something like this:  
 
DAY 1 2 3 4 5 6 7
Motor Response              
Eye Opening              
Verbal Response              
TOTAL              

 
If the patient is receiving drugs, it may impair use of the scale.  
 
If the patient rises four levels on the Coma Scale within the first 24 hours, this is considered a rapid improvement.  
 
If the patient rises four levels in the Coma Scales in three days, this is considered a moderate improvement.  
 
If the patient rises four levels on the Coma Scale in the first week, this is considered a slow improvement.  
 
Some patients remain on their original coma score, without a change for weeks. This is called a prolonged coma.  
 
Those patients who do not come out of coma may pass into a vegetative state. This state is often characterized by periods of the day during which the person's eyes are open, giving the appearance of wakefulness, but shows no signs that he or she is aware of the environment around him or her. The person is awake, but not aware.  
 

You can 'google' either Glascow Coma Scale" or another one that is used by some trauma hospitals is the "Los Ranchos Cognitive Scale".

Either of them will give you information.

Most times thought the GCS or LRC are done when paramedics first arrive on scene.

I see them all the time on Ambulance Call Reports.

Hope you find the help you're looking for.

Hugs
Carol

Carol and Cat, Thank you for the information onthe GSC #'s. It's always interesting to learn new things.

Cat, check your pm's

Charlotte

Carol, thanks so much for the info, seems I got my numbers backwards hehe.

I don't know what the paramedics listed as my number.  I know it took them 20 min. to get me to a state they could safely transport me off the deck (based on those present).  I know I didn't know who my daughter was, and that I wasn't responsive to pain other than the one in my head.  As Clark put it, the lights were on but no one was home, I was talking total nonsense (it wasn't nonsense to me, made perfect sense) but apparently it didn't seem to make sense to anyone else hehe (hey there's a first ;) ).

I will check out the info and see if I can't get a report from the EMS that responded to see what GSC they had.  The hospital did not check again, so I don't know what they came up with.  I only know that for well over a week after the 2nd fall (2 days in a row) I was unable to walk a straight line, unable to communicate in a meaningful way and just generally a vegetable.  I also completely lost a month of memory.

Thanks again for the info, that should help!

Cat

Cat... so, what's going on? How are you feeling... and have you received any word from the docs?

You've been in my prayers.

with warm regards,
Tony

Hey Tony,

Not much has changed, I'm still experiencing many of the same problems as before, although having the stress of the holidays behind me has helped considerably.  

I find I get exhausted rather easily now - guess I overdid things over the holidays.  We were able to get a doctors appt with my GP so that we can hopefully start the process of trying to get in to see a doc that will know what to do with this situation - the first available appt was Feb. 2 *sigh*.

Hurry up and wait.  I appreciate your thoughts and prayers more than you know.  I don't know that I've ever been as concerned about a potential health threat as I have been over this.  

Every clusterhead has hit that bump in the road where they simply just give up, (not on life - or not always at least) but rather giving up on any doc existing that can help.  That's kinda where I'm at.  I've just sort of given up on the idea that anyone is actually going to pay attention to me and help me.

Fortunately, I have a wonderful husband who won't give up, and I have the best cluster family in the world offering me their shoulders to lean on.  

What will be, will be.  I have to accept that I have minimal control over any of this and focus my limited energy on the parts I do have control over - a very very wise lady told me that :)

Cat

[smiley=hug.gif]  You know where I am when you need me....


Love you,

Mom (the other one... ;))

Cat, so very sorry you are going through all of this. I do not understand much of what is happening to you but we do know that you sure could use some extra prayers right now and they are on the way to you.

Thinking of you!

 Barry&Angie [smiley=hug.gif] [smiley=hug.gif]

To be honest Barry, I'm not entirely sure that *I* understand what is happening to me - traumatic brain injury covers so much and it's hard to sort through the information available on the net.  Sometimes medical info from the net is more harmful than helpful.

What I do know is that things aren't 'right'.  Some info I have found to be common among all TBI situations is:

Quote:

Symptoms of a TBI can be mild, moderate, or severe, depending on the extent of the damage to the brain. Outcome can be anything from complete recovery to permanent disability or death. Some symptoms are evident immediately, while others do not surface until several days or weeks after the injury. Most patients with severe TBI, if they recover consciousness, suffer from cognitive disabilities, including the loss of many higher level mental skills. The most common cognitive impairment among severely head-injured patients is memory loss, characterized by some loss of specific memories and the partial inability to form or store new ones. Some of these patients may experience post-traumatic amnesia (PTA), either anterograde or retrograde. Anterograde PTA is impaired memory of events that happened after the TBI, while retrograde PTA is impaired memory of events that happened before the TBI.

Then there is a laundry list of symptoms that go with it, I've bolded those that I've been experiencing:

Quote:

Signs and Symptoms Signs and symptoms of neurological impairment caused by TBI depend on which structures in the brain are damaged. Common symptoms include:    * Anxiety, nervousness    * Behavioral changes:          o difficulty controlling urges (disinhibition)          o impulsiveness          o inappropriate laughter          o irritability    * Blurry or double vision (diplopia)    * Depression    * Difficulty concentrating or thinking    * Difficulty finding words or understanding the speech of others (aphasia)    * Difficulty swallowing (dysphagia)    * Dizziness    * Headache    * Incoordination of movements    * Lightheadedness    * Loss of balance; difficulty walking or sitting    * Loss of memory    * Muscle stiffness and/or spasms    * Seizures    * Sleep difficulties (more or less sleep than pre-injury)    * Slurred and/or slowed speech    * Tingling, numbness, pain, or other sensations    * Sense of spinning (vertigo )    * Weakness in one or more limbs, facial muscles, or on an entire side of the body

While I received immediate emergency treatment after the 2 severe concussions that resulted in unconsciousness and convulsive seizures, the doctors dropped the ball IMO as most sites explain how standard imaging techniques don't do a good enough job detecting TBI:

Quote:

X-rays, MRIs, and CT scans can detect fractures, hemorrhages, swelling, and certain kinds of tissue damage, but they do not always detect traumatic brain injury. This is because TBI, especially in its milder forms, often involves subtle traumas scattered among neurons and supportive tissues, stretched or damaged axon membranes (diffuse axonal injury), chemical injury caused by the biochemical cascade of toxic substances in the brain tissues, and cellular dysfunction. These changes often cannot be found with standard imaging procedures. More sophisticated imaging techniques that measure brain cell metabolism, such as single-photon emission computed tomography (SPECT) or positron emission tomography (PET), can help diagnose such injuries.

Bottom line is that at the time of the 2 most severe head injuries, the medical treatment probably wasn't adequate, but what is done is done, and I am not one to go looking for a person/place to blame.  What interests me i=nowis finding the specialists needed to ensure, if not *full* recovery, then the best possible outcome I can get.  The hardest thing for me to deal with is the memory losses - it's difficult to lose an entire month of your life and have no way to know if what you are being told is truth or not, and secondly, the episodes when 'the world just seems wrong' - I don't know how to describe it accurately, it's like a time slip, like the laws of physics and the universe suddenly stop applying to my brain.

So yes, I can use all the extra prayers, vibes, positive energy and support I can get.  I will control those things that I can, and those that I can't I will work to putting aside and not worrying about before I land myself with a full nervous breakdown hehe.

Sorry to ramble on so long and with so much info, thought it might help folks to understand some of what was going on.

Your help is much appreciated, be it from info, prayers or just by being there to listen :)

Luv Cat (I think I can say I'm officially dain bramaged now LOL)