Does anyone here have experience with Horner's Syndrome?

[swissair81]

In the past few years, my right eyelid has become progressively droopier and the pupil doesn't dilate at all. I went to my ophthalmologist who referred me to an oculoplastic surgeon. The surgeon said he could fix it but he needs to make sure there isn't a medical cause for it first. He sent me to a neuro-opthamologist to see if there are any sympathetic nervous reasons for my issue. The neuro is sending me for a CT angiogram of my head and neck to ensure there is no dissection of my carotid artery. So now I'm not only disgusted with the way I look and I'm nervous that I have a huge problem to deal with. Just wondering if anyone had any BTDTs.

[doberbrat]

I know this isnt really helpful but my doberman had this and it went away on its own. After some very expensive consults and much angst of course!

I'm sure you must be scared - I'll be thinking of you

[essnce629]

I don't know anything about Horner's Syndrome but my left eyelid started getting droopy some time after having DS1 and my doctor noticed it at my physical almost 2 years ago and sent me to an ophthalmologist. I didn't have any neuro symptoms and no medical reason for it was found. It just seemed to be a muscle problem. I had corrective surgery for it last summer, so a year and a half ago. It was a simple 30 minute procedure under local anesthetic. I had stitches in afterwards and they were supposed to take them out after a week, but I had to go to a wedding on day 5 and they were starting to fall out on their own so I pulled the rest out on my own! It was bumpy along the incision line for a few months but then it smoothed out. It definitely looked better after the surgery, but now I'm starting to notice that it's getting droopy again and even my mom noticed. I'm bummed about that! I notice it most in pictures and when I have allergies. I probably need to go back to the ophthalmologist. He said it could reoccur.

[swissair81]

It's good to know that I'm not just an aberration of nature. Thanks!

[wallawala]

My dad had Horner's due to a dissection of the carotid artery. Quite large and inoperable. He was placed on Coumadin for about 9 months until it stabilized. He has been off it for about 7 years now and doing fine. He still has a little eye droop left but only noticeable in pictures.

It is VERY rare, but potentially genetic. Most are found on autopsy as an incidental finding or if the dissection ruptures (bad news...). My dad was treated at a major academic medical center. The neurosurgeon told him that he had only seen two cases in his career prior to my dad. One died, one was fine- so gave him a 50/50 chance. Nice, eh?

My dad is fine, and off Coumadin now. He was told it is so rare that not standard of care to have family members screened- but to keep it in mind as FYI if some one else developed it.

Oddly, my MIL also had Horner's, attributed to a post-viral syndrome (she never felt sick). Apparently not that rare. Hers resolved completely in a few months with no treatment. No big deal except it was while she was getting drivers liscence renewed, so she was I upset about her DL photo. ;).

[swissair81]

So my imaging studies were normal. The neuro-opthamologist said it is idiopathic, but can be from frequent headaches. I guess we go back to the surgeon now. I'm very relieved.

[essnce629]

Glad it's nothing serious! Good luck with the surgeon!