Treatment?

Susac syndrome
#1

Well… after 3 days of steroids… 3 days later my hearing was gone again… was given 1 day of steriods… went back up to hospital… and they started IVIG for 3 days… got home, went for my weekly IVIG on Wednesday… by Thursday… ear was acting up again… by friday… I had 20 percent comprehension out of right ear (lost left year 2 years ago) so… I’m back on 3 days steriods… following by my weekly wednesday IVIG (this week)… AAGHHHH… hearing of course improved since Friday because of the steriods… I just wonder how long this is going to be a rollercoaster.

Has anyone had any other treatment then the above? Cytoxan? Please fill me in… Kris

#2

Please don’t keep using it as all the time b/c if you use it for a
long period of time you will have eye problems Dr. Susac said hearing
problems is common with Susac’s. I know about eye’s b/c I had to have
eye surgery b/c I was on high doses of them for a long time I got
cataracts no fun b/c it is like you are waling around in the fog and
can not see at all reading things. Be very careful. I have had since
2001 so if you have any question’s I will be happy to answer them here
is my home email address lindahamilton@insightbb.com b/c I don’t get
on this group site much.
Take care.
Linda

#3

Hi I have had Cytoxan for about 6 months it seems really long time I really hated it. Like I said before if you need to talk please email me at my home address @ lindahamilton@insigthbb.com.
I have had all the things chemo, steriods, ivig,.
I have aged about 40 years getting women things in there 50’s or 60’s I am 42 and has gone the change of life and can hardley walk with out my cane.
It is really hard for me to except b/c I was a very active person working out at my gym and doing certain exercises in there that now I can not lift my legs up or jump I did so much.
I use to get depressed all the time but I now just tell my self life is to sort to be like this I push my self to due things.
I worked about 10’s hours a day I was a graphic art’s I used to work on computer’s and helping people to due thing I even trained customers to due things on program’s I was sent to there location and also talked them through problem’s over the phone b/c they were in another state.
Well you see how hard it is. I have not worked in over 6 1/2 years I want to go make to work but I have a lot of problems with my feet and my legs with arthritis in my knees that when it is cold I can not fuction quick enough in walking. I had winter time it is the worst time in the year.
Will please email me at my home address.