This , is going to one of 4 questions for my neuro when next we met!
I cant understand how, lets say, you have an accident and have a head trauma. The panic to operate and relieve the extra pressure in the brain. Now, I know its not the same but isn't the it the same basic principle?
Any one with high pressure will tell you about the pain and the sensation that our brain is being squished(sp?)

Any part of our body, that has continued pressure on it, must pay a price.
It scares the life out of me, that as you say faith, what about our short term memory problems not to mention all the other things, which of course I cant remember now!
I wonder about MRIs? Can the see any deterioration from the first ones we had done?
This and more I will be asking altho I am not sure I want to hear the answer! Cath

You know Cath.. I really don't think we will get a answer..They don't know..I will bring this up tomorrow at my last follow up visit with the NS. I will put it the way you explained it. He is very well known in our area for brain traumas...

I'm not sure any of the doctors understand what or why this happens... and are trying to treat to the best of their knowledge. I don't know what to think.. sometimes it seems i know as much as the doctor does...

I had wondered this too. But I believe the Docs are focused so much on our weight with this disease they can't see through the ignorance to figure out what is truly going on.

Nicole you are so right about the weight issue and doctors. Could they please just look at whats on the inside instead of always judging whats on the outside? I totally understand health and all of that but come on sometimes is ridiculous. I swear my neurologist is obsessed with my weight and if it even fluctuates a pound or two...OMG. Last time he checked over my clothes and mentioned "well you have a heavy sweater on so maybe that is why." Like really are you for real? Can't stand that.
Now in regards to whats on the inside - Like what Cath said with increased pressure and such I think there must be something going on - some sort of stress. At least I feel it.
I always say I'm donating my brain to science research when I die - I know it will be an interesting one...!
Mandy

I was reading through these resources:

http://en.wikipedia.org/wiki/Intracranial_pressure

(pay attention to the The Monro-Kellie hypothesis. If we have a decrease in venous blood, would it have the same oxygen-starving effects it has on the heart?)

http://www.ncbi.nlm.nih.gov/pubmed/9796606

http://thejns.org/doi/abs/10.3171/jns.1995.83.6.1067?journalCode=jns

(The story embedded in this one is that if we are in an accident and bleed a LOT, we need to make sure they know we have IHH, because our bodies don't defend as well against a big bleed.)


From the reading I think I'm most concerned about a prolonged, low-level decrease in blood supply to our brains. It's not like TBI victims where they have a huge reduction over a short period of time.

Didn't see anything about the effect of squeezing. Would that have the same effect as swelling? I don't think so - swelling causes cell damage...

I know we don't have the same effects as swelling if we did this would be deadly though it really makes you wonder how it all works where if the brain swells it can kill you, but if you have to much around your brain all the time and it doesn't swell your fine? yea just dosen't seem right.

I have finally found a neurologist that somewhat answered this for me. He told me that the increased pressure over long periods of time DOES have the same effect as being in an accident and having major brain trauma. He said this is why I have trouble with my memory, coming up with words, concentrating, etc. He did say that if they pressure is relieved via shunt, meds, etc then the brain can begin to heal itself, but they never know how much will heal and how much is permenant.

Wow! bocchinot, that's amazing on two levels.First that they admitted it, and second, that we were right all along!
It stands to reason, that some damage will be done if the brain is constantly exposed to pressure.
And, that is what is going on with a lot of us now? Some small form of brain damage? That we cant remember words, conversations etc...?
How dreadful.but not unexpected.


Sea Sprite, thanks for the links. It went a long way to understanding why my blood pressure has been so high of late. What a bloody mess! Cath.

We can take some comfort knowing that we can also take some control of this. Interesting article:

http://well.blogs.nytimes.com/2011/01/28/how-meditation-may-change-the-brain/?src=me&ref=general

Well, I asked my doc about PTC and memory issues.. the answer I received is that meds can cause memory issues..and most people with PTC are on meds..uhm..I reminded him..NOT ME !..He asked me .." are you having problems with your memory" I said " yes" he than asked how old I was..when I told him I will be 52 this year.. he smiled and said..next question..but than stated that I really needed to discus this with my neuroligist..uhm..I did not tell him that I don't have one..becuase..I kinda of fired him..but the nuerolgist does not know it.. see my neuro surgeon and my old neuroligist are GOOD friends..so I just smiled and changed the subject.. sorry..I was hoping for a better answer..but truth is ..no doctor really knows what ishappening to us....

I'll jump in here. I have been posting my recent experience with my new neuro. She is really taking things more seriously, instead of blaming everything of my fatassness. She sent me to a Neurophysiologist to have testing. She wanted to establish a baseline to compare to in the future. The results indicated some levels of damage. If anyone is interested I will post the findings when I go for my follow up with the neuro, still have a few more things to do before I go back so it may be a month or so before I can post.

Interesting thing is, for the many years me and all of you have been going to these neuros, and NS, WHY have they not sent all of to the Neurophysiology department for this testing. This should be STANDARD of CARE for anyone dealing with an illness involving the brain! DUhhhhhhhh

Mary

Mary,

What type of test did you have?
I recently had an MRI and it showed only IH and not any other abnormalities. Is this what they use as a baseline?

I have been wondering myself what this is doing to us all.

I have not read anything about long-term, most articles focus on the eyes and not the brain aspect.

Thank you for sharing your experience.

Mary is right - they should have something to use as a baseline.
My brain feels as if it is constantly under stress from these headaches and I'm sure it is.
You think in 100 years they will understand this better? I hope so.

Sorry this is a long post anyone suffering suspected brain damage should have this done, the post should provide info if anyone is interested in these tests, I will tell you why they are nessecary, cost comparison, and availible test/what they check for:

These memory issue are not med or age related, you ARE essentially developing brain damage the longer IIH is present, your docs may not admit it, but when you find one's that will they take it more seriously and will order testing with the neuropsychologist!
Neurological-imaging provides information on structural and physiological aspects of brain injury while neuropsychological testing provides the most accurate picture of patient's cognitive functioning.


Neuropsychological testing is a procedure that measures and identifies cognitive impairment and functioning in individuals. It provides quantifiable data about the following aspects of cognition:

Short-term and long-term memory
Ability to learn new skills and solve problems
Attention, concentration, and distractibility
Logical and abstract reasoning functions
Ability to understand and express language
Visual-spatial organization Visual-motor coordination
Planning, synthesizing and organizing abilities
This data results in accurate clinical diagnosis and a grading of clinical severity.

Neuropsychological testing is viewed by insurance companies and HMO's as medical diagnostics, not as a mental health issue. They reimburse at the same rate as other medical specialties. Using neuropsychological tests early in the diagnostic decision tree can save money by avoiding unnecessary diagnostic imaging.

Compare:

Standard Neuropsychological Battery $ 900 - 2,000
MRI $ 6,000 - 12,000
PET Scan $ 3,000


Intellectual functioning:
Wechsler Scales
Wechsler Adult Intelligence Scale-Revised (WAIS-R)
Wechsler Adult Intelligence Scale-III (WAIS-III)
Wechsler Intelligence Scale for Children-IV (WISC-IV)
Stanford-Binet Intelligence Scale-IV

Academic achievement:
Wechsler Individual Achievement Test (WIAT)
Woodcock-Johnson Achievement Test

Language processing:
Boston Naming Test
Multilingual Aphasia Examination
Boston Diagnostic Aphasia Examination
Token Test

Visuospatial processing:
Rey-Osterrieth Complex Figure Copy condition
WAIS Block Design Subtest
Judgment of Line Orientation
Hooper Visual Organization Test


Attention/ concentration:
Digit Span Forward and Reversed
Trail Making Tests
Cancellation Tasks (Letter and symbol)
Paced Auditory Serial Addition Test (PASAT)

Verbal learning and memory:
Wechsler Memory Scale (WMS)
Logical Memory I and II - Contextualized prose)
Verbal Paired-Associates
WMS-III Verbal Memory Index
Rey Auditory Verbal Learning Test - Rote list learning (unrelated words)
California Verbal Learning Test - Rote list learning (related words)
Verbal Selective Reminding Test - Selective reminding (unrelated words)
Hopkins Verbal Learning Test

Visual learning and memory:
Wechsler Memory Scale
Visual Reproduction I and II
WMS-III Visual Memory Index
Rey-Osterrieth Complex Figure - Immediate and delayed recall
Nonverbal Selective Reminding Test
Continuous Recognition Memory Test
Visuo-Motor Integration Test - Block design

Executive functions:
Wisconsin Card Sorting Test
Category Test
Stroop Test
Trail Making Test-B
WAIS Subtests of Similarities and Block Design
Porteus Maze Test
Multiple Errands Test (MET)

Speed of processing:
Simple and Choice Reaction Time
Symbol Digit Modalities Test - Written and oral

Sensory-perceptual functions:
Halstead-Reitan Neuropsychological Battery (HRNB) Tactual Performance Test and Sensory Perceptual Examination

Motor speed and strength:
Index Finger Tapping
Grooved Pegboard Task
Hand Grip Strength
Thurstone Uni- and Bimanual Coordination Test

Motivation:
Rey 15 Item Test
Dot Counting
Forced-Choice Symptom Validity Testing

Personality assessment:
Minnesota Multiphasic Personality Inventory (MMPI)
Millon Clinical Multiaxial Inventory
Beck Depression Inventory (BDI)
Rorschach Test
Thematic Apperception Test for Children or Adults