Author Topic: Cerebellar Retraction / Handwriting Difficulties  (Read 24724 times)

Crazycat

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Cerebellar Retraction / Handwriting Difficulties
« on: December 13, 2006, 04:56:54 pm »
Hello all!

  I Just returned from Dr. Michael McKenna's ( Neurotologist at large) office at Mass Eye & Ear in Boston. For the most part, I'm in extremely good condition since my surgeries last year. I do however, have some issues with left-side impairment that are bothering me. Totally deaf in one ear - left-side - while being, let's say, an "inconvenience" is something I've been living with for five years prior to diagnosis and treatment and have no problem dealing with, even as a professional musician if you can believe it.
 
What's really bothering me is the impairment or lack of control I'm experiencing when it comes to handwriting and even guitar playing. Not only did I have excellent penmanship throughout my life but have also had considerable talent as an artist and illustrator. Now, although I can still get by with these skills, my abilities have been seriously compromised. I'm earnestly hoping and praying that these skills that I "had" will eventually return in full force after diligently and ceaselessly working them.
   
The good doctor spoke of "retraction of the cerebellum" and that typically, most of the healing that we can expect to occur in this area will occur within a year or so after surgery ( I'm now 1 year and 3 months out). It seems that in my case, I have a mild case of this affliction, in spite of the fact that I had a tumor the size of a grapefruit and two shunt surgeries for hydrocephalus. The difficulties that I'm experiencing however, are minor in comparison to how bad it could be, i.e.: problems with movement, walking, or balance.
 
I was speaking with a woman I know that has M.S. a month ago. Out of the blue she complained to me that her handwriting was shot - among other things. I thought that was interesting, not having M.S. yet having a similar malady.

The cranial nerves, while being so close together at the skull base, act as a sort of wiring harness that often gets short-circuited during the course of an invasive surgical procedure and/or from impingement of an invading growth. We've all experienced it, one way or another, whether the problem involves sensation (trigeminal nerve), facial movement (facial nerve), taste (chorda tympani nerve), auditory, vestibular and other problems I can't even think of. The purpose of this thread is to now append "cerebellar retraction" and the resulting problems that may arise from it into our litany of medical grievances.

  Here is a publication that I found pertaining to the subject at hand:

http://www.otology-neurotology.com/pt/re/otoneuroto/abstract.00129492-200207000-00028.htm;jsessionid=FQ9pJJsnhTBKwt2LTQSh541XJfjxQvHM7S3p8p8fLkSsPGvnPyhJ!918851391!-949856145!8091!-1

  If anyone is experiencing this problem with handwriting or has gotton over it after surgery, CK or radiation  please feel free to chime in!

    Take care, Paul
« Last Edit: January 09, 2012, 01:15:35 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

nancyann

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #1 on: December 13, 2006, 05:11:40 pm »
WHAT ELSE IS GOING TO HAPPEN POST-OP ????

Jeez, Paul, & this is your livelihood !!!!!!!     Haven't read the insert yet, I'm still shocked to hear there can be more heading down the pike !

Obviously, at 5 1/2 months post op, I'm not having that problem.  When I 1st tried to play the piano post op (besides forgetting a memorized piece ),
looking at the keys made me whoozy, took some time, still a little off.....  but to hear there can be more of a problem !!!   I write alot at work, I've taken
to copying drs. notes that are too long.

This is just TOO much !     I hope things improve for you - I'm sure more for you than me, MUSIC IS YOUR LIFE,  art also.

Best wishes to you, Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
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Windsong

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #2 on: December 13, 2006, 06:32:40 pm »
Paul,

 I hope these symptoms resolve for you...

I personally have to wonder about "retraction" being the "culprit". If "impingement" is an issue then wouldn't an An  simply by "being" there have an affect on nerves?

There are / can be a myriad of symptoms many of which most of us do not mention simply because they don't seem to be important. Then again, whatever the An sits on, or impinges on,  plenty of symptoms can happen.

Perhaps the best thing to do for all of us is to mention anything new to our doctors?

I, myself. ignore some mainly because they seem unimportant in the "bigger" picture.

I find myself thinking now "wait a minute" i don't remember having that before?

Perhaps if we reported more of them, we'd have better research answers.

I say this as I think, well, Ans grow on nerves, so wouldn't any strange new symtpoms have  a part to play in all this?

Again, it's the diffrence between a macro and micro picture of Ans...

Hope you get answers and better soon,

Windsong

PS short term memory made me forget the bit about handwriting? yes, handwriting which used to be oh so nice is all over the map along with the dyslexic typing....for me
« Last Edit: December 13, 2006, 06:34:52 pm by Windsong »

HeadCase2

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #3 on: December 13, 2006, 07:33:50 pm »
Paul,
  Interesting article.  I've been wondering for some time if cerebellar issues may be involved for post treatment AN patients who have vestibular issues.  I'm not sure that losing a vestibular nerve on one side can explain the whole range of the vestibular symptoms.  We tend to focus on direct damage, like a severed nerve, but damage to the blood vessels supplying blood to parts of the cerebellum would have a similar effect.
Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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Joef

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #4 on: December 13, 2006, 07:40:20 pm »
 Ã‚    I too still have some minor problems with handwritting..  and belive it or not .. I sometimes miss-spell my name! .. not sure why I do it , but you know how your hand just sort of "knows" how to things... well my hand has forgot .. and commonly leaves out a letter ...and the same letter all the time!
 
 Ã‚   I have a thoery! ..

 Ã‚    now think star-trek .. the shortest point between to spots on a graph .. can be shorted if you bend the paper! ..

 Ã‚    now think you brain is the paper ... what was the shortest point (a comressed brain because of the AN). is now no longer the shortest point! assuming we had the AN for a long time ....our brain learned the shortest route... and now its not ... we have to re-learn .. and it might take (another 40 years in my case) ...

4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
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matti

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #5 on: December 13, 2006, 07:41:05 pm »
Paul - handwriting difficulties have been a frustrating issue since surgery. I too used to have nice penmanship, but find it hard to complete certain letters as I am wiriting and it ends up looking like chicken scratch.  While writing in cursive, I find it difficult to complete an "O, S, B" and a few others. If I take it very slowly and concentrate it is much better. Sometimes I will write faster than my brain can process (hope that makes sense) and words are jumbled, as if my brain and hand are out of sync.

What has helped me re-train my brain to some extent is purchasing printing and cursive writing handbooks that grammar school kids use. (The ones that you trace over)

I also used to do alot of fine needlework, but that has also become a challenge.

Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
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Crazycat

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #6 on: December 13, 2006, 08:09:16 pm »
Cheryl,

   I understand you perfectly. It's making those loops on the fly that are especially difficult - Thank god for computers and word processors!
So this has been plaguing you since 1990? This does not bode well for "getting back up to snuff" so to speak! :( At least anytime soon....

          Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Windsong

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #7 on: December 13, 2006, 08:39:26 pm »


well, only with respect to handwriting i hope , Paul...



 ???



handwriting was one of the first things apart from balance and vertigo that i was aware of... (close behind was the head wonky/cognitive aspects)
I at first put down the bad handwriting to being tired, you know the type... from being tired, not like "tired" An-wise now that I know about my An

later came other symptoms.... years before someone acted on my request for an mri
in between i do recall  a bad time for all manner of things that meant punching in buttons on doodads regarding numbers... for a while i had others nearby do it for me...

must be a cognitive and muscle message system gone awry  along with the nerve impulses to them.... ???

W.

about 5 yrs after that I got my An mri diagnosis


Cheryl,

   I understand you perfectly. It's making those loops on the fly that are especially difficult - Thank god for computers and word processors!
So this has been plaguing you since 1990? This does not bode well for "getting back up to snuff" so to speak! :( At least anytime soon....

          Paul

jerseygirl

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #8 on: December 13, 2006, 09:27:25 pm »
I was surfing the net yesterday and discovered something about the cerebellar cognitive affective syndrome. Apparently, damage to the cerebellum creates cognitive and emotional problems. Maybe, that is an explanation why ANers with huge tumors have cognitive and emotional issues!
http://www.conquerchiari.org/subs%20only/Volume%203/Issue%203(10)/Cerebellar%20Cognitive%20Affective%20Syndrome%203(10).asp

http://brain.oxfordjournals.org/cgi/reprint/121/4/545

http://brain.oxfordjournals.org/cgi/content/abstract/129/2/306

Moreover, kids with tumors of the cerebellum suffer from something called posterior fossa syndrome which is similar to the one above. I do not have the link but you can use Google to find out more about it.

I hope the links I posted here work; I tested them on my e-mail. If not simply Google on "Cerebellar Cognitive Affective Syndrome".

           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.

Angieshubbie

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #9 on: December 13, 2006, 10:57:48 pm »
I understand what you are saying.  After my AN was removed and having a blood clot a week later (sinus vein, in the brain), I couldn't eat with a fork (without wearing half of it) and write.  I have been back to work full-time and I have noticed that my writing has gotten better.  I can tell when I'm tired, it looks bad.  (Christmas cards were a typed letter this year).
I just don't know if it was the AN or blood clot!!??!!

I only hope that it will come back sometime, like (HOPEFULLY) everything else.

Angie
My wife Angie 3+Cm Right Side, Retrosigmoid - 8/21/06, Dr. John Lasak & Dr. John Goreki

Windsong

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #10 on: December 14, 2006, 12:28:43 am »
thanks for the sites re the cerebellum and motor and thinking activity mixing up... i found it very interesting reading.... maybe it explains the dyslexic typing.....

wonderful to be picking up info like that as some of the issues aren't all that big that we aners have yet they leave such questions in my mind as long term memory lol tell sme this is not my "normal"...

W.

Lorenzo

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #11 on: December 14, 2006, 02:37:17 am »
Wonderful thread and info, thanks all. I too have problems with hand writing and typing. hand writing went to the dogs years before I was diagnosed with an AN. Typing has gottne progressively worse over the past few years to the present level. Slight improvement lattely. Only when i get tired I need to be really conscious of how I type. Going to read those documents ow. Thanks again!!!  :)
Ciao
Lorenzo

Raydean

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #12 on: December 14, 2006, 05:32:47 am »
Hi Paul

Just a quick note, I'm headed to work, but  Chet also experienced  handwriting problems and at first blamed it on the surgery and retraction, but when we looked into it deeper I discovered that his handwriting had been declining prior to discovery of the tumor. he had to keep daily logs at work.  By the day of discovery it was almost unreadable.  I'll read your posting and all replies to the tread later, but I personally believe that it may have something to do with the size of the tumor and brainstem and damage to the nerves.

Don't give up, the timeline for inprovement is larger then the timeframe you listed.  Chet has never recover the penmanship, but did recover his ability to print to some degree. (slower and more effort needed)  and this happenned way beyond the 3 months,  more like 3 years post op.

Thinking of you
Raydean
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Crazycat

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #13 on: December 14, 2006, 12:35:25 pm »
Raydean,

   The same holds for me as well: I began noticing a decline in my penmanship well before diagnosis and surgery. The growth was so big it began impinging on my cerebellum. At first I had been attributing this decline to not writing as much as I used to before relying on a computer keyboard.
I remembered back when I was in elementary school and resuming class after summer vacation, it was tough getting the writing hand working properly again chiefly because I was still so young and just hadn't deveoped the muscles and nerve pathways enough to function strongly after taking a three month hiatus. Due to my relying on the computer to write as an adult, this is what I thought in principle, was happening.

    Thanks for your feedback and say hi to Chet for me!    Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

TaylorsMom

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Re: Cerebellar Retraction / Handwriting Difficulties
« Reply #14 on: December 15, 2006, 11:39:54 am »


Taylor wrote this just a couple days before her surgery.  I kept it.  She started telling us a month or two before she was diagnosed that she couldn't write or type like she used to.  Yes, her handwriting got much slower and messier after surgery.  That frustrates her a lot.  She can write but must go slow which is a real problem now that she's taking college courses.  She does get help from the special services department there, but wishes she didn't need it.  By the way, she earned a "B" in algebra for the fall semester!!!!!  I'm sure I couldn't do that.  I try to encourage her to practice the handwriting to improve her speed, but she doesn't do it enough.

Happy Holidays everyone!!!!!!

Kathy