I was just diagnosed with Partial Susacs… a year and a half ago lost my hearing in left ear. Now 2007 I had a scare with left ear. They put me on steriods for 3 days, and released… hearing is not perfect in right, but a lot better then 10 days ago.
Anyone experience the 2 ear situation?
Kris
Hi
I also lost my hearing but try not to stay on steroids to long b/c I was and then got cataracts and to have eye lazier surgery but they are not back like before 20/20.
I’ve had since 2001 and I have poor walking and as lot of other things I’m dealing with I have a lot of pain in my feet my balance is poor and I have to walk with a cane for support which I don’t like at all but in my house I really never use it b/c my house is very small. I have heard there are some still having IVIG and they got it the same year I have not taken it since 2005, due you know why?
Well keep me informed
Linda Hamilton
15337 Madison Pike
Morning View KY 41063
859-466-9591 cell
859-356-6068 home
lindahamilton@insightbb.com
----- Original Message -----
From: kkeggy susac-cpt4087@lists.careplace.com
Date: Friday, June 8, 2007 14:11
Subject: [susac] Partial Susacs
To: lindahamilton@insightbb.com
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line will be cut off in your reply I was just diagnosed with Partial Susacs… a year and a
half ago lost my hearing in left ear. Now 2007 I had a scare
with left ear. They put me on steriods for 3 days, and
released… hearing is not perfect in right, but a lot better
then 10 days ago.Anyone experience the 2 ear situation?
Kris
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Hi again I lost my hearing in both ears about 80%in the right ear and on the left ear in about 20% I did have hearing aids they worked but my sister broke it the main one so now I have nothing which is a pain b/c I hate not being able to hear things people say sometime I think they due so I can not hear it but I’m hoping that is not true. Dr. Susac told me hearing aids don’t really work with Susac’s but mine did I just knew how to work them. I did not want to scare you about steroids yes they due work but there has to be a better drug out there.
Take care
Blessing
Linda Hamilton
15337 Madison Pike
Morning View KY 41063
859-466-9591 cell
859-356-6068 home
lindahamilton@insightbb.com
----- Original Message -----
From: kkeggy susac-cpt4087@lists.careplace.com
Date: Friday, June 8, 2007 14:11
Subject: [susac] Partial Susacs
To: lindahamilton@insightbb.com
~-
-------------- sent via
careplace.com
~-~ kkeggy posted the message below in the Susac syndrome
Community Forum.
~-~ The entire conversation can be found here:
http://www.careplace.com/forum/topic/4087
~-~ To respond to this message, reply to this email or sign in
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~--------------- all text below this
line will be cut off in your reply I was just diagnosed with Partial Susacs… a year and a
half ago lost my hearing in left ear. Now 2007 I had a scare
with left ear. They put me on steriods for 3 days, and
released… hearing is not perfect in right, but a lot better
then 10 days ago.Anyone experience the 2 ear situation?
Kris
__
To control the emails you receive from CarePlace, go to
http://www.careplace.com/account-notifications
kkeggy
Hi
I also lost my
hearing but try not to stay on steroids to long b/c I was and then got
cataracts and to have eye lazier surgery but they are not back like
before 20/20.
I’ve had since 2001 and I have poor walking and as
lot of other things I’m dealing with I have a lot of pain in my feet my
balance is poor and I have to walk with a cane for support which I
don’t like at all but in my house I really never use it b/c my house is
very small. I have heard there are some still having IVIG and they got
it the same year I have not taken it since 2005, due you know why?
I lost my
hearing in both ears about 80%in the right ear and on the left ear in
about 20% I did have hearing aids they worked but my sister broke it
the main one so now I have nothing which is a pain b/c I hate not being
able to hear things people say sometime I think they due so I can not
hear it but I’m hoping that is not true. Dr. Susac told me hearing aids
don’t really work with Susac’s but mine did I just knew how to work
them. I did not want to scare you about steroids yes they due work bulindahamilton@insightbb.t
there has to be a better drug out there.
Well keep me informed.
Linda Hamilton
15337 Madison Pike
Morning View KY 41063
859-466-9591 cell
859-356-6068 home
Well… I have been going to Mayo Clinic in Rochester. Infact I am scheduled to go back on the 19th for a spinal tap… and another hearing test. My eyes were affected in 2000 but they got better… so now its just the hearing.
But because of the steriods, right now, I am very sore. bruised and sore.
They mentioned the IVIG, but don’t want to take it there unless something else happends… so its kinda a catch 22.
All I know is in the past 10-12 days my hearing in my right ear went from 80 percent functioning… to 30 until they put me on the steriods… not back to normal… but at least 60 percent normal… with a horrible buzz.
kris
kkeggy,
Hi. You said you have Partial Susac. I’m just curious. You mentioned the hearing and the eyesight. But you said the eyesight got better. Do you just not have the brain stuff? Or do you consider it partial because you’re vision got better? And how did your vision get better? It is my understanding that the vision damage is permanent. Althought my hearing did get better. I’m completely new to all this. Sorry for all the questions, and I’m not trying to pry. It’s the vision is my biggest problem. And any talk of that improving really grabs my attention. Thanks.
Hey all,
I just found this article on the net… and thought it might make for interesting reading.
Long-Term Outcome in Susac Syndrome.
Article
Medicine. 86(2):93-102, March 2007.
Aubart-Cohen, Fleur MD; Klein, Isabelle MD, PhD; Alexandra, Jean-Francois MD; Bodaghi, Bahram MD, PhD; Doan, Serge MD; Fardeau, Christine MD; Lavallee, Philippa MD; Piette, Jean-Charles MD; Hoang, Phuc Le MD, PhD; Papo, Thomas MD
Abstract:
Susac syndrome is characterized by the clinical triad of encephalopathy, hearing loss, and retinal artery branch occlusions, mostly in young women. To our knowledge, long-term outcome and impact of pregnancy have not been specifically addressed. We report a series of 9 patients (7 female, 2 male) followed at the same institution, with special emphasis on clinical outcome including pregnancy and long-term sequelae. Clinical, brain magnetic resonance imaging (MRI), funduscopy, retinal angiography, and audiogram data were recorded every 3-12 months. We also analyzed the 92 previously reported cases of Susac syndrome.
Mean follow-up was 6.4 years. Age at onset was 30.4 years. The first symptom occurred between April and September in 7 of 9 patients in the current study, and in 68% of all patients. The complete triad at onset was clinically obvious in only 1 of 9 patients. Brain involvement was heralded by headache and symptoms of encephalopathy. Cerebrospinal fluid was abnormal in 5 patients showing pleocytosis (mean, 24.6; range, 6-85 cells/mL) and elevated protein level (mean, 210; range, 113-365 mg/dL). Over time, quantitative brain MRI analysis showed that the number of lesions diminished and did not parallel clinical flares, and MRI never normalized. At the end of follow-up, no patient had severe impairment, and all but 1 returned to work.
Inner ear involvement was present at onset in 2 patients and occurred in others with a mean delay of 11 months. Initially unilateral in 3, it became bilateral in all. Mean hearing loss was 34 dB (range, 15-70 dB). Hearing loss never improved, either spontaneously or under treatment. The eye was involved at onset in 8 patients, and after 3 years in 1. All had multiple bilateral retinal artery branch occlusions and/or dye leakage with hyperfluorescence of the arterial wall on fluorescein angiography. Over time, angiography normalized in 3 patients. In others, it was still abnormal at the end of follow-up (range, 1.5-10 yr). On late findings, fluorescein leakage was more frequent than true arterial occlusion. Eye involvement was mostly asymptomatic, unilateral, peripheral, and resumed spontaneously to remit in other sites over time.
Corticosteroids were efficient to treat encephalopathy, with relapses occurring when the dosage was tapered. Steroid treatment did not improve hearing loss or prevent new retinal arteriolar occlusions. Anticoagulation had a role in treating encephalopathy and retinal arteriolar occlusions.
Three patients had 4 pregnancies. Two pregnancies needed induced abortion. One pregnancy was uneventful. One pregnancy was complicated with Susac disease flare in the early postpartum period.
In conclusion, at the end of follow-up, most patients had returned to work and none had severe impairment. Pregnancy may affect the course of Susac syndrome, with relapse of encephalopathy postpartum. Our main finding was that the course of Susac syndrome is not self-limited as previously thought, since isolated retinal arteriolar involvement may occur as a very late manifestation.
© 2007 Lippincott Williams & Wilkins, Inc.