Just by luck, I ran across this group and I am so glad I found you.

I was diagnosed approximately three months ago with what my
neurologist and neurosurgeon consider as an inoperable capillary
telangiectasia of the pons. I am a 47-year-old, fairly healthy
female, that has developed symptoms that have been ongoing now for
over a year, which I thought were attributable to severe
environmental allergies that I have and/or sinus problems but my
allergist strongly advised I see my family physician who referred me
on to a neurologist.

I saw a neurologist in 11/01 who ordered a MRI and a 5 mm capillary
telangiectasia on the anterior midline of the pons of the brain stem
was discovered; there appeared to be no evidence of multiple
sclerosis which we were suspicious for.

Over a year ago, the symptoms first began as just a tingling under my
left eye which progressed to tingling in various areas on the entire
left side of my face and then a numbness/decrease in sensation on
much of the left side of my face which continues. I also have had and
still do, but to a lesser degree, ringing and occluded hearing in my
left ear and shooting pain which also now occurs occasionally in my
right ear, both on an intermittent basis. I get intermittent shooting
pains in each side of my head. My balance has been off and I feel
dizzy intermittently. I have developed carsickness when on long
rides, particuarly on the freeway. I have had an occasional feeling
of weakness in my limbs on the left side. My memory/thought process
seems impaired also.

The tingling and prickly-like feeling has progressed on to many
different parts of my body, including my hands and feet, mainly on
the left side but now includes the right side. Recently, I have
developed shooting/stabbing, electrical-like sensations in the ends
of several of my fingers and toes intermittently that can last
several minutes now and is quite uncomfortable at times. It has even
awakened me. I am having one form of sensation or another going on
almost continuously now. I am quite concerned about possible
hemorrhage. I do not know yet what treatment options are available to
me, if any. I am planning to have all my medical records, MRIs, MRAs,
etc. sent on to a neurosurgeon who specializes in venous
malformations and has reportedly done over 200 surgeries on the brain
stem for these.

I would be very interested in hearing of other's symptoms that
have/had a capillary telangiectasia on the pons of the brain stem
and/or what treatment they have undergone. Any information at all
would be sincerely appreciated.

Sandi