Horner's Syndrome

I'm curious of how many people with Fibromuscular dyslasia that have Horner's Syndrome. Also what symptoms they have with it. I have it due to a carotid dissection. Please respond if you have it.

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Hi I know our very own Pam Mace has that.
http://www.fmdsa.org/patient_support/stories

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I had bilateral carotid dissections and the Horner's Syndrome appeared after the right carotid dissected -my right eyelid drooped and the pupil was very small. It has resolved itself to some extent after over a year and only observant Dr.s notice it- although prior to a migraine the pupil in that eye becomes small again.(kind of an indicator signal!) I still have difficulty reading for extended periods- my eye doctor says both eyes are fine, but the right eye is slightly delayed. Do you have a similar experience?

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WendyFMD, I am sorry about your carotid dissection and resulting Horner's Syndrome. I have a small carotid dissection and pseudoaneurysm "of unknown significance", but do not have Horner's. There was another member who wrote-in about her experience with Horner's Syndrome this summer. Her name is Jackson77 and her journal entry described the onset of her symptoms. She talked about coming off the treadmill and noticing that 1/2 of her face was red and sweaty and the other half was not...like a distinctive line. She then noticed that her right eye had begun to droop.
In the upper right hand corner of the FMD Inspire site is a search bar that says "find". If you have not already used this feature, it is a great way to find other discussions on particular subjects of interest to you. If you type in "Horner's", recent and older discussions will come up for you to browse through. You wll probably get more responses to your question by other members who have experience with Horner's....once the Holiday dust settles.

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Thank you 50Kate for responding. Yes I have similar symptoms. My horner syndrome is on left side. My eyelid drooped pretty bad for a few months but has since just been noticed by doctors or myself. I also had a lot of numbness in my forehead and head for a long time. When I blink my left eyelid is delayed a little. Also my left pupil stays small. It doesn't really dilate. Also that side of my face use to never sweat but when the nerves healed, they didn't heal right. Now that side of my face sweats all the time. Even when I'm not hot at all. Now when I am tired or sick it will droop some. Looks like we have some similarities.

Thank you sks45. I will look up Jackson77. I just haven't heard that many people mention horner's syndrome.

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Aimee77 I hate you had that happen to you. That is something I wouldn't even have thought about happening with thyroid surgery. I wanted to use those eye drops but I was told by a Neuo Ophthalmologist that they can cause your cornea to dry out and separate from the eye. That scared me so I stopped using them but they do work. I think wiith more time you will see a big improvement with your eye dropping. My neurologist was really surprised how much my mine healed. But when I get sick or really tired it will droop some. It's really weird.

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I'm planning to see a neurologist this week, I've debated cancelling this appt. and just waiting it out but I've decided to just go. I had no idea that those eye drops could cause that, it says on the bottle that you can use them up to 4x/day and I've been using them maybe 2x/day. I've heard they can do eyelid surgery as well, but hoping it doesn't come to that. It is definitely so much worse when I'm really tired.

What did the neurologist do at your appt for this? I'm wondering if I should call ahead to see if I'll be able to drive home after, did they dilate your eyes?

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Dear Amie77,
My Neurologist sent me to a Neuro -Opthamologist. She did use drops to dilate and I had to have a ride home- so it's a good idea to call ahead. I also got a wicked headache from all the tests involving harsh lights. I'm hoping your Neurologist can do the tests, but I seem to get sent on to the next dr. each time I see a new one. I was told to just wait it out and it has improved a lot though, like you, it's worse when I'm tired or getting a bad headache. I hope you get answers and healing soon.

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I went through that also. They said I had two options. I could wait it out or have surgery to fix the eyelid. I choose to wait it out and it has improved a lot. I also got a migraine when they would dilate my eyes or put a light in them. I have been thinking that maybe some of my migraines are caused by horner's syndrome. I get them almost everyday. Do you get them often? I'm very sensitive to light.

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50 Kate and WendyFMD, sorry you both have this condition but I'm really glad to hear that you've both seen improvement in time. I have not had any headaches or pain really at all in my face or eyes. The horner's syndrome is in my left eye, at times I will feel like my right eye is really straining and actually looks larger than normal...that symptom has begun to subside. I called the hospital this morning and found out that the doctor I'm scheduled to see is a neuro-opthamologist, so that's good! They also said to bring someone, so I'm glad I called. I'm sure he'll tell me to continue to wait, I don't think I'd consider surgery until at least a year or more. How long have you both had Horner's syndrome and how long was it before you saw real improvement?

I guess I need to just be positive about this, at least I don't have a large tumor in my neck anymore!

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It took about six months to get where it is now. It happened two years ago but hasn't changed much after 6 months. I think you are doing the right thing about waiting on the surgery. I just know I have been through so much already, I just didn't wanna go through any more pain. I do have issues with sight now. When I look forward with my head and cast my eyes downward I can't see downward. It is just black. This just started about 7 months ago. They wanna do surgery and pull the eyelid back because the bottom lid is blocking my vision. I told them I would just live with it for now. They think the horner's syndrome is starting to effect my bottom lid.


50Kate, you and I have a lot of similarities with our fmd. I really appreciate you responding to my questions. It makes me feel like I'm not alone with this disease anymore.

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I had a right ICA dissection in 2008, and felt lucky to come away with only Horners Syndrome. A month later I was diagnosed with FMD. At that point I still had the droopy eyelid. Eventually that went away as did the nagging temple pain. I also have the line down the center of my forehead when I exercise and my right forehead sweats only just above my eybrow, so I'm constantly wiping it with a tissue. Still, I feel lucky the damage was in the ocular area and not my brain!

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I met with the neuro opthomologist this week and he referred me to an oculoplastic md, I'm planning to go and meet with this doctor just to discuss the eyelid surgery, it doesn't sound too bad. I'm assuming that my insurance will cover it since it was the result of the surgery, I'm worried about that and planning to look in to it on mon. Does anyone know if insurance typically covers this procedure in our cases?

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I was diagnosed with Horner's Syndrome first before discovering my carotid dissection and FMD. My symptoms were droopy eye lid and extremely small pupil that occurred on a Saturday. I was diagnosed with Horner's Syndrome the following Monday. It still took a couple of weeks to get the final diagnose. My other symptoms of the carotid dissection was facial pain, very numb temple on my right side and taste aversion which caused a weight loss of 15 lbs in 3 weeks. This was in 2010. Since then, I have been on Plavix (now generic) and have mostly normal eyes. I still have the droopy eyes and small pupil but only occasionally. I am usually the only one who notices the changes. I have no other symptoms from Horner's Syndrome. I feel very fortunate that this was diagnosed quickly and is now manageable.

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Aimee77,
I'm curious what you found out about re: the surgery being covered. It's nice to hear from all of you- I don't feel so alone.
(It's interesting to watch during an exam to see if a new Dr. notices that one pupil is smaller. Most are in too much of a hurry.)
I'm glad Pam Mace and FMDSA are getting the word out there that it MEANS something when someone who goes into the ER has a droopy eye. They just sent me home. It was several days later that I finally found out about my dissections and by then it was very dangerous.
Glad we can help each other with info.

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Hi 50Kate,
After speaking with someone from the oculoplastic md I was told that the blepharoplasty procedure is usually covered for horners syndrome patients. I actually found someone else on this forum who told me her insurance covered the procedure and that she was very happy with it. I'm planning to meet with the oculoplastic in a few weeks just to discuss things, it's an outpatient surgery done with local anesthesia. If mine clears up on it's own I will be happy but if not I'm definitely having this surgery by early summer. If it's something you are at all considering I would look into it.

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Dear aimee77- I was just interested in hearing what you found out- I am not in need of it: my lid is actually pretty good, it's just the pupil that is still wonky. It's good to hear that they only use a local anesthetic. Do you need to be off blood thinners for few days prior to surgery? I'm always hesitant to get routine things done if that is required because I'm on such a high dose and I fear going off.

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I'm not sure?? I'm not on any so it's not something I asked.

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I'm having a very interesting experience. Around Christmas I noticed that my left eyelid was drooping. Just disregarded it--part of the aging process...Then I developed laryngitis January 20. My oncologist sent me home from work. Saw her again last week (sent me home again) and she was very concerned that I was still having problems with my voice. At same time another doc noted that my pupils were different sizes. Anyway I got an emergent consult to see an ENT. That doctor took one look at me and said Horner's Syndrome. My eye and the sweating are minor but it's my voice that is driving me crazy. Was told that I do not have larynigitis...my left vocal cord is paralyzed, I'm now entering week 6, and it's getting worse. The ENT looked at a CT that was done that morning and showed concern that a tumor may be inhibiting one of my sympathetic nerves. He's going to discuss with my oncologist (a PET is now in my future). He also recommended that I have a Cymetra injection into vocal cord. One positive thing...I don't have to chair meetings at work and everyone has been wonderful. Plus my 89 year old mother has decided that it's time to learn how to email (forget texting). :-)

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