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 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?
5. Can you direct me to where I can find out about treatment of demyelinating diseases?
6. 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.”
Thank you for any help you can provide. This forum is a blessing. -Pam