Susac's Syndrome

Question

Looking for a support group for Susac's Syndrome; doesn't look like there is much out there. My wife is starting treatment this week and it would be great to have her be able to reach out to someone who is familiar with this disease. Thanks!

Rick D

This discussion is related to Susac Syndrome.

BonnieL1399 · Answer

I was diagnosed with Susac's in Mar. 2007. I am a female 74 years old. Dr. Susac thinks I may be the oldest person with it. I started with headaches, vomiting, very lethargic, bad balance and hearing loss. My neuroligist could not confirm it until the opthomologist saw the occlusionsi in my eyes. I started steroids by IV and IVIG within the first two weeks of my illness. I saw significant improvement in a week.  My hearing loss improved to 50% and I was able to walk without a cane, even though my balance is still not as good as it was before Susac The occlusions have disappeared and the lesions in my brain diminished somewhat . I took IVIG's for 6 months and steroid tablets off and on for 4 months. I also took two IV's of Rituxan. I had no side effects from either the steroids or IVIG. 
I consider my self very fortunate, I can do all of my activities with minimal problems with my balance.

Bonnie

zemer85 · Answer

mia madre ha la syndrom of susac da piu di un anno e in italia nn riescono a curarla,qualcuno mi sa dare informazioni sui dottori o centri che curino questo tipo di malattia 'GRAZIE


GAIA DONATI

gaia_donati***@****

Blessedanyway · Answer

Looking for a clinic who can be a second opinion for the myriad of tests I've acquired since the Swedish MS clinic in Seattle differed to Susac. I've read the informative Calgary articles, but I really need informed medical care. Thank you for any professional  referral.

CB54 · Answer

I appreciate your post.  Your analogy of a "storm going through," and the fact that you regained your vision has given me hope in this new year!  Thank you!

epiresearcher · Answer

I was diagnosed with Susac's in 1995.  I had gone blind in one eye and had a neural loss of hearing almost 20 years earlier.  I regained most of my vision.  The neuroopthalmologist who diagnosed me told me to go off the steroids because there was not evidence they help.  I do not know if there is sufficient evidence from properly designed clinical trials to say that steroids provide help.  (I am a PhD epidemiologist and understand the research that must be done.)   Perhaps those who are told they must take the steroids ask their physicians exactly what research has been done.   If the physician doesn't understand the question, find one who does!  (There are so few with Susac's the proper research might be very difficult.)   I asked Sir Michael Marmot, MD, the stress expert if stress is implicated in the etiology of Susac's.  He told me there was no evidence that stress was important.

My neuroopthalmologist told me Susac's is like a storm going through.  The storm I experienced lasted about one year.
Good luck to all of you diagnosed with it.  It is no fun having a "rare" disease, especially one whose etiology is unknown.

CB54 · Answer

I was diagnosed with Susac's in July after dealing with hearing loss, roaring tinnitus, and a branch retinal artery inclusion BRAO.  I underwent steriod infusions for 6 weeks, and am currently taking cellcept.  My hearing has improved significantly, however my vision loss from the BRAO has not been restored.  Local doctors feel the disease is "stable."  Although my form of Susac's had not affected my brain at the time I was diagnosed, I feel that my short term memory has been affected.  In addition, I get a numbness feeling on one side of my "brain" when I get stressed or have to focus on something small and detailed, particulary if it is moving--such as moving words on the TV (i.e. credits, etc.).  I have termed this feeling I get "neuro-****."  My local retina specialist agrees that it is a good term.  

The biggest side-effects I have experienced have been weight gain from the steriods and cellcept, including swelling.  I sleep with a hand brace to keep my right hand from going to sleep at night due to swelling (carpal tunnel).  My local doctor has added a duretic to my list of RX to help with this.  

My advice is to be as supportive as possible.  Help keep any type of stress to a minimum, as that is a big factor in the onset of this disease, and I believe it is a big factor in fighting the disease.  Good Luck.  I would love to visit with your wife and compare notes.

shan75 · Answer

my hubby has been possibly diagnosed with Susac's Syndrome....we have to get a definate yes or no yet....my main question is this???

we were told that susac's syndrome has to start in your childhood..... but i have yet to see any evidence of it having to start then or any proof...and we had a neuro state it had to start during my hubbys childhood in order for him to have it...BUT... he has all the symptoms and signs of Susac's /.......so WHY would the neuro state that......i mean its possible for it to start at any age right?? i have seen in research it usually hit between the ages of 9-58 yrs old and usually affects women only.......but CAN affect males.... a 3:1 ratio of women to men...
im frustrated.....we really do think he has susacs...we have ruled out tumors...cancer and ms....he has 2 lesions on his brain and white matter also on the corpus callosum of his brain... what next??? am i wrong???? we have been told Conversion Disorder...but my hubby has been seeing a psych doc and she has evaluated him and states he does not have a psych disorder.......i think personally we need to seek a 2 opinion from a neuro that knows what he or she is talking about and does not label my hubby as crazy!!!

frustrated beyond belief!!!

Shannon

Dr_Smita_S · Answer

Hi

Susac syndrome was reported in the year 1975 by Dr. Susac. It consists of a triad of encephalopathy, branch retinal artery occlusions and hearing loss.

I came across an article on the condition by Dr Susac (I presume!!) at the link http://www.neurohaven.com/susac1.htm

The sites also mentions a contact number for further information. You can see if they are able to provide you with more information.

Take Care and do write in if you need more information.

Regards

erinmw · Answer

My brother was recently diagnosed with this and has started the steroid treatment. He has become bloated from the treatment and is suffering from severe psychological problems due to the disease. If you hear of any support groups, clinical trials, etc., please let me know.

Erin