Thanks in advance for your patience in
reading this long posting.
My mother is 87 years old, 5'1", 103 lbs.,
and as sweet and kind as can be!
She has had several episodes of dizziness
over the years, but since 2004 it has
gotten progressively worse, and she has
now been chronically dizzy 24 hours a day
for over one year. She is severely
weakened, her head aches and exercise
makes it worse. She would like to lie
down all the time, but she forces herself
to get up. Her condition is getting worse
daily. She describes it as follows:
• A nagging lightheadedness unrelated
to position, near fainting
• Disequilibrium, feeling of
unsteadiness when standing or walking
• Unsteady when walking
Tests have ruled out any inner ear
problem. Alavert and Meclizine have no
effect on the dizziness. Mother has tried
physical therapy, but is not able to
handle it. After her local neurologist
said that she “will just have to live
with this debilitating problem for the
rest of her life,” we took her to be
evaluated in November 2006 by a dizziness
expert in Chicago. His conclusions
centered on Orthostatic Hypotension and
periventricular damage, and said nothing
can be done about the latter. His
specific impressions were:
1. Marked orthostatic hypotension
without compensatory tachycardiac
response.
2. Distally diminished large fiber
sensation, possibly a manifestation of a
length-dependant large fiber sensory
neuropathy.
3. Mild lateralizing cerebellar system
dysfunction (left upper extremity
dysmetria, left upper extremity checking,
and dysrhythmic left toe tap).
4. Clinical evidence of diffuse white
matter disease (choppy horizontal and
vertical smooth pursuit, frontal release
signs, diffuse hyperreflexia),
corroborated by CT and MRI results.
5. Multifactorial gait instability
secondary to the problems enumerated
above.
Specific suggestions were compression
stockings (thigh high, 15-20 compression)
and sleeping on a 30 degree pillow wedge.
Upon return home, her local cardiologist
confirmed Orthostatic Hypotension, and
said she has a regular heart rate, open
arteries, good circulation at the feet,
and the heart is pumping strong, although
the blood pressure was too high (she has a
history of high blood pressure and high
cholesterol). Her medications were
adjusted and at the next visit, the
cardiologist said the Orthostatic
Hypotension was resolved.
Nonetheless, the chronic dizziness and
severe imbalance continue to worsen.
In February 2007, a new local neurologist
reviewed the results of a previous MRI.
He stated that the MRI shows several
locations evidencing little strokes and
that the bulk of Mother’s disequilibrium
appears to be the result of those little
strokes – of damage to small blood
vessels deep in brain. The following are
excerpts from results of previous brain
scans:
October 4, 2006: A CT scan of the head
with and without contrast noted bilateral
periventricular hypodensities consistent
with white matter chronic ischemic
changes, diffuse cerebral atrophy, and a
hypodensity within the left extreme
capsule.
July 25, 2006: Positron emission
tomography of the brain noted near global
diminished metabolic activity throughout
the brain with sparing of the basal
ganglia, thalami, midline cerebellum, and
visual cortices. This was interpreted as
non-specific global diminished metabolic
activity pattern. In addition, the test
showed evidence of diffuse microvascular
ischemic changes of the white matter on
the CT portion of the examination.
Past Medical Problems:
In 1983, she had surgery to remove an
infected lobe of one lung caused by
Mycobacterium Avium Complex (MAI).
In September 2003, Bronchiectasis was
diagnosed again and this time she was
treated successfully with drug therapy for
MAI.
She has a long history of hypertension.
In October 2004, she had a blood clot
removed from her left elbow and on the
same day developed atrial fibrillation.
Her cardiologist says the A-Fib is not
fast enough to be causing the dizziness.
At night, her left side frequently aches.
It starts at the neck and goes down to the
bottom of the rib cage.
I have read that Periventricular White
Matter Lesions (“PWM”) have severe
consequences and that treatment of the
demyelinating diseases may be possible,
although I have not found anything on what
that treatment might be.
Here are my questions:
1. Can you suggest another course of
action to try?
2. Do you know what research/clinical
trials are being done on this problem, and
where?
3. PBS aired a program on how
researchers are working to get the brain
to repair itself. Do you know if this is
relevant to PWM?
4. Can you direct me to where I can find
out about treatment of demyelinating
diseases?
5. Should we investigate (a) the
wearable balance vest being developed at
Massachusetts Eye and Ear Infirmary
(“MEEI”) which has a motion sensor and
minicomputer, (b) the implantable balance
implant also being developed at MEEI, or
(c) hyperbaric oxygen therapy? Although
the vest is being developed by Dr. Conrad
Wall for mal de debarquement syndrome,
MEEI’s website states that “these
devices could also help the elderly and
others who might be susceptible to
falling.”
