Arnold-Chiari Malformation Case History
INTERNAUTBHM at worldnet.att.net
Sat Nov 2 13:37:25 EST 1996
My case history is attached.
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An Arnold-Chiari CerebelloMedullary Malformation Type 1 without Syrinx
I am a 55 year old male with an ACM 1 without a syrinx. My ACM was
detected in 1990 via two MRI scans. The second was used to verify the result of
the first. My GP ordered the MRI scans after normal medication failed to correct
vertigo problems. Warning: The MRI units make a loud noise and can be
irritating to your ears. Not all technicians warn you about the noise. Ear
protection is available. Ask for protection and relax.
After the MRI results, the GP sent me to three specialists, two neurologists and
one neurosurgeon with the following results:
Neuro 1, No operation needed and we will handle your symptoms with drugs.
And you should have a MRI every six months.
Neuro 2. There is this easy operation. You will be playing tennis again in a
month. It is simply a physical thing that drugs cannot help.
Neurosurgeon - It is not a simple operation. I do not recommend it in your case.
My success rate is 80%. Here is a prescription for Prozac, I hear it helps.
After these recommendations, I consulted Medline with the following results:
The decompression operation is only 50% successful and in general symptoms
return. ( No drug treatment was found).
Critique of the medical care-- The GP was great for finding out what I had. The
neurologists were not familiar with the symptoms of ACM. Both had poor
interactive skills and were arrogant. The surgeon was honest but also was not
familiar with the symptoms. His prescription for the Prozac was a big mistake.
One pill and I was climbing the walls. I did not take any more. None of the
doctors to include the GP showed me what exactly the problem was via diagrams or
Based on the above, I went home and lived with my ACM. I am still living with it
and acclimating to it more each year. I do not take any drugs.
I continue to review Medline for information on ACM. However the best
information found ANYWHERE on ACM is posted on the Internet at
http://www.geocities.com/HotSprings/2830. The site is maintained by John
MacDonald, an ACM patient. A MUST READ FOR ALL PATIENTS AND
DOCTORS ESPECIALLY THE SYMPTOM LIST POSTED BY DARLENE LONG
UNDER THE FAQ'S. PLEASE NOTE THAT TINNITUS IS A MAJOR SYMPTOM
OF ACM. I HAVE HAD TINNITUS FOR 25 YEARS. NONE OF THE 10
DOCTORS I SAW ABOUT THIS CONDITION NOR THE THREE NEUROS I
SAW ABOUT THE ACM WERE AWARE OF THE RELATIONSHIP. HOW VERY
DISCOURAGING IT WAS TO FIND OUT I HAD THIS CONDITION FOR 25
YEARS, AND NO DOCTOR SUGGESTED THERE MIGHT BE A PROBLEM. I
BEG DOCTORS WHO CANNOT FIND A REASON FOR TINNITUS TO LOOK
FOR AN ACM. NEURO 1 BY THE WAY STILL DOES NOT BELIEVE IT. HOW
VERY SAD!!!!! ALSO NOTE THAT THE SYMPTOMS COMPILED BY
DARLENE LONG ARE FOR ACMERS WITH MAJOR SYMPTOMS. THERE
ARE OTHER ACMERS WHOSE MILDER SYMPTOMS HAVE NOT BEEN
COMPILED. AN UNOFFICIAL COMMENT BY ONE NEURO WAS THAT ONLY
ONE IN FIVE ACMERS REQUIRE THE DECOMPRESSION OPERATION.
My major symptoms are some imbalance during sudden moves, balance problems
going down stairs, tinnitus (ringing in my ear) and some neck stiffness. I typically can
use a railing for going down stairs. Unlike many ACMers I do not get headaches. To
counteract these symptoms I have developed a number of action items as listed
SOME POTENTIAL NON-SURGICAL/ DRUG FREE METHODS TO ALLEVIATE
ACM SYMPTOMS (9/96)
1. INCREASE FOOT/ANKLE SUPPORT BY WEARING NIKE OR REEBOK
AIR-CROSSTRAINERS(I.E. CUSHION THE CEREBELLUM),
2. AVOID NECK "JERKING"/STRESSING ACTIVITIES SUCH AS FOOTBALL,
BASKETBALL, TENNIS, WEIGHT LIFTING, EXTENDED READING OR
SLEEPING WITH THE HEAD BENT DOWN, (READ YOUR NEWSPAPER OR
BOOK STRAIGHT IN FRONT OF YOU WITHOUT BENDING YOUR NECK)
3. GET PLENTY OF REST AND SLEEP- USE A SMALL SOFT PILLOW AND
EXTRA SIDE PILLOWS TO PREVENT ROLLING TO A NECK-PINCH
POSITION,- SLEEP WITH YOUR HEAD HIGHER THAN YOUR FEET,- A HEAD
DOWN POSITION CAN CAUSE SIGNIFICANT PRESSURE ON THE NECK.
4. AVOID CAFFEINE, ALCOHOL AND ASPIRIN. SALT TYPICALLY
INCREASES BLOOD PRESSURE WHICH IS NOT GOOD FOR A LOT OF
REASONS TO INCLUDE AN INCREASE IN EAR RINGING AND POSSIBLE
INFLUENCE ON ACM'S.
5.STAY IN SHAPE WITH WALKING, EXERCISE BIKES AND OTHER
NON-NECK STRESS ACTIVITIES-STAY LEAN,
6. SIT IN RECLINERS WITH HIGH BACKS AND FOOT RESTS,
7. DRIVE IF YOU HAVE TO BUT USE MIRRORS AND GET SEATS WITH
8. AVOID NOISE
9. RELAX AND AVOID STRESS
PLEASE E-MAIL YOUR OWN EXPERIENCES AND SUGGESTIONS TO
CHIARI at ICUS.COM . THE LIST WILL BE UPDATED AS ADDED
INFORMATION BECOMES AVAILABLE BY BERNIE M. (FROM PHILLY, 55
AND LIVING WITH HIS ACM WO HEADACHES SO FAR).
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