Author Topic: Tired ? its OK to be .......its official  (Read 3046 times)

tony

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Tired ? its OK to be .......its official
« on: February 20, 2008, 12:21:03 pm »
I came accross this report
and it covers many aspects of our way of being
There are a number of internet sites showing the full report :

COGNITIVE ASPECTS OF VESTIBULAR DISORDERS VEDA Conference - Portland, Oregon

I guess most of you could have written the speach -without notes
But its interesting to read a full perspective on it
Share and Enjoy !
Tony

tony

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Cognitive Aspects of Vestibula Disorders
« Reply #1 on: February 21, 2008, 11:23:51 pm »
Sorry I was being at little too obscure here
so
http://www.backgroundfacts.com/menieres/COGDIS.htm
This is a transcript of a conference on the :
Cognitive Aspects of Vestibibular Disorders
They talk about fatigue, confused thinking
and changed thinking processes
- it also talks about mood etc.
- any of you who have lost ,or damage to, a balance nerve
will know exactly what they are talking about
Best Regards
Tony

lori67

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Re: Tired ? its OK to be .......its official
« Reply #2 on: February 22, 2008, 09:27:28 am »
Thanks for posting that Tony.  Makes me realize that I'm NOT losing my mind (completely, anyway).

I think I'll print it out and tape it to my forehead so everyone will understand what's going on inside my head for once!!

Now, I'm tired from reading that.  Better go take a nap!  :D  Ha ha.. like that'll happen.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

4cm in Pacific Northwest

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Re: Tired ? its OK to be .......its official
« Reply #3 on: February 22, 2008, 12:37:14 pm »
I am taking much of the article with a grain of salt…

Here are 3 quotes from the article I have a responses to


Quote #1
" Our hypothesis is that the reason you have this problem as a vestibular patient is that your brain stem is affected.  The brain stem is a stalk connected to the spinal cord.   There are nuclei located in the brain stem that attach to your balance system; they are also highly important for keeping your cortex, your thinking areas, alert and aroused and attentive. "

My comment to this is to note that some AN tumor patients had their brainstem pushed into an “s� shape (myself included) but please note that AN tumors does NOT grow into the brainstem. For example my brainstem, post surgery, is now straight . For me the former “s� shaped brain stem was most likely the cause sleep disturbances and I really think my short term memory issues were more sleep deprivation related than vestibular related. Post surgery there is a noted improvement in my sleep pattern and my memory, focus and attention span have improved tenfold… How much was due to balance or simply to sleep deprivation? 6 months post surgery I now think the latter. Now I am sleeping better… I am functioning better… Another improvement we have noticed is in my handwriting, since the tumor was removed, this has improved tenfold… This was not due to the vestibular issues as much as it was from pressure applied to the brain by the tumor. Remember folks- the AN tumor does NOT grow into the brain… but it does apply pressure by pushing up against it.

Quote #2
" Question:  Do you have any help for family members?
Answer:  A vestibular dysfunction affects the whole family because it affects the patient's total life.  Family members need help and understanding almost as much as the patient him- or herself.  In the clinic, we include family members' perspectives because they can sometimes give clues to behavior that patients aren't aware of
.
  We also do counseling with family members .    "

I am sorry but I really feel that this author is trying to drum up business for his clinic.

As with all articles on the internet- “question the source�. I feel there are a many sweeping generalizations in this author's comments that should be questioned.

This one really gets me
Quote #3

" Finally, people with vestibular disorders experience a decreased ability to grasp the large whole concept.   The ability to see the big picture or the forest for the trees is very elusive for someone with vestibular disorders. "

I personally cannot relate to this comment and do NOT agree.

I recommend the book “Seven Blind Mice� by Ed Young that is written for children (but most likely directed at adults)
http://www.amazon.com/Seven-Blind-Mice-Caldecott-Honor/dp/0399222618
(I am not promoting Amazon here- just giving you a link where you can look at the covers of a book ...and sample pages inside)

The author of the article, COGNITIVE ASPECTS OF VESTIBULAR DISORDERS, you posted only has partial understanding and is making sweeping generalizations about all vestibular patients. I “had� an acoustic neuroma tumor not Meniere's disease. One cannot lump all us patents together. I see this author as one of the blind mice telling their own perspective- however I do not see the author as the white mouse at the end of the story putting an accurate picture together.

Below I am going to quote Ed’Young's book (Seven Blind Mice)

“The Mouse Moral:
Knowing in part makes a fine tale but wisdom comes from seeing the whole�


Most likely this author is only seeing the patients that have these issues and is not taking into account the patients that had success and improvements- post AN treatment.

It is a hypothesis with no back up data provided to make his point. It is an article of "opinion" not a valid research paper.

Keep moving forward,

4



4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

jerseygirl

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Re: Tired ? its OK to be .......its official
« Reply #4 on: February 22, 2008, 01:38:48 pm »
This must be a very old article because I remember reading it many years ago before my second surgery and after my first one. I agree with 4 in that the ability to see the big picture does not dissapear after AN surgery; in fact, it is the opposite with me now: I see the forest but sometimes not the trees. The details sometimes drive me nuts or somehow I miss them altogether. However, this is a great article in that it describes potential cognitive difficulties among AN patients which, just like symptoms, ran a gamut and might or might not occur.

It has been my experience, however, that alertness and fatigue are an issue. The author of the article is absolutely correct in saying that doctors can do little about them. That has been my experience as well. I use herbs and acupuncture to increase alertness and reduce fatigue therefore stretching my productive wakefulness to more normal levels.

I wonder if there has been any new, more recent developments in the area. Please, post anybody if you can find something!

                     Eve


Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

lori67

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Re: Tired ? its OK to be .......its official
« Reply #5 on: February 22, 2008, 07:36:38 pm »
4 -

I think you have to take a lot of these articles with a grain of salt.  Some info might be true and some of it might just be the opinion of the author.

I was just happy to have an "official" excuse for my fatigue and general air-headedness!  I guess I can blame the fatigue on the kids... I'll go with the vestibular issues for the ditziness!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

yardtick

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Re: Tired ? its OK to be .......its official
« Reply #6 on: February 22, 2008, 07:53:11 pm »
I could and can relate to some of the points in the article.  As time goes on, your body heals and you mentally and physically you get stronger.  Mind you we all have day to day battles.  This article makes sense looking back to where I was a year ago.  I feel like printing it off and throwing it at my new GM, but that would be very childish of me.  Does it cover childish behavior...........I can't remember ::)
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Jim Scott

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Re: Tired ? its OK to be .......its official
« Reply #7 on: February 23, 2008, 03:46:33 pm »
I agree with 4cm in Pacific Northwest that these articles relating to vestibular disorders have to be taken with a certain amount of skepticism, even though M.D.'s present them them at professional conferences.  Generalizations are always problematic in any medical situation and especially when cognitive functions are being analyzed.  I agree with '4' that Dr. Erickson is likely relying on the patients he has seen and is not being inclusive.  If so, although he may believe he is being helpful, his conclusions are not necessarily wholly accurate.  This is why we should not accept at face value every internet article on AN issues as 'gospel', even though it may be authored by a licensed physician working within neurological disciplines.

At the time I was diagnosed I had a fairly large acoustic neuroma tumor (4.5 cm) that was pressing on my brainstem and yet, although I was impaired, I was still functioning, except for a fairly sudden onset of lethargy and long-term loss of appetite (due to a severely diminished sense of taste) along with a significant loss of equilibrium.  Sound familiar?  After looking at my MRI scan, my neurosurgeon was clearly alarmed by the size and placement of the AN and scheduled my surgery for barely a week later. Following the (retrosigmoid) surgery, the lethargy disappeared, my sense of taste slowly returned and with some practice, my balance steadily improved.  I had a few cognitive 'issues' in the months following surgery (and follow-up FSR treatments) such as deteriorated handwriting (which wasn't very good to begin with) and a tendency to hit the wrong keys when typing.  In time (almost two years, now) these issues have resolved themselves as everything heals and I've worked to regain whatever I lost including dexterity and balance. 

Although I had a large AN, I don't believe I had any serious cognitive issues, which would undercut some of Doctor Erickson's conclusions, although its probably fair to say that he might counter with the argument that I was the exception.  Perhaps.  My neurosurgeon, who has 30 years of experience operating on acoustic neuroma tumors, did say I was in his top five percent of patients in terms of my recovery time and regaining previous impaired functions.  In any case, I wouldn't take this one physicians statements at face value.  This article is dated and is one doctor's opinion - and we know that when it comes to AN issues (cognitive and otherwise), that 'one size does not fit all'.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

tony

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Re: Tired ? its OK to be .......its official
« Reply #8 on: February 24, 2008, 05:32:18 am »
Thank you everyone for your interesting responses
- please note it is NOT exclusively an AN article
Basically some of the patients would be AN - but 80% would have
some other underlying cause - similar symptoms, yes for sure.
Its not really a research paper - its the transcipt of a conference speach
(based on 5 yrs or so clinic practice)
Even then as we know , no two ANs are exactly indentical
so my experiences (good and bad)  are not necessarily everone elses.

I felt that there were really three key points :
1) The issue concerning the meds - maybe making things worse
where there are already balance issues (so care required here)
2) How few medical folk really understand the "cognitive"
issues concerning the condition (or even that they exist at all)
I have found  fully trained and qualified psycotherapists
with 10 yrs practice experiance in the UK - who did not know
(i.e. the Doc will not understand- or will not listen - sound familiar ?)
3) The "ongoing" nature of the changes and the possible effects
-ie  the sense of "lack of closure ?
(if NF2 then there are even more reasons ?)

Others are more generic - ie  the "cant see the big picture"
This might be true for 95% of patients who are
simply "deppressed" (not even phsyically ill at all)

Actually the only bit I would take issue with is the
"Fatigue - your stuck with it" view
I have found... (OK my experiance, not everyones")
That there is a lot you CAN do, which will bring
over time, much improvement
(I suspect Jim might agree with that one)
I guess now I am 98% ishh of the stammina/endurance
I had before
I wanted to write to the Doc - to see if he still thought the same
(can we track him down ?)
Basically things do improve but it needs the application to do so
I will develop on this one - if anyone desires ?
Best Regards
Tony