Anyone else have this eye symptom?

[CA Marti]

Hi Everyone,

     I've been very stressed and worried that my right eye may be affected somehow. I'll try to describe it as best as I can. Where the upper lid is, the second line above the lash line, seems to sag down more than on my other eye. The left eye's line is a normal arch, but the right one seems to sag with some extra skin and hang lower than the left eye. The movement of my eyebrow is normal, I can move it up and frown, but the skin seems to be sagging (on my AN side) more than my other eye. Maybe the muscle is weakened there? Does anyone know if this is related to the AN pressing on the facial nerve, or could it mean the facial nerve is involved somehow? I brought it up to the doctors at my last consultation but they didn't seem to look closely and just shrugged it off as not being related. I was thinking that maybe I was being paranoid so I didn't push the issue. However, the upper right eyelid definitely looks a little different than my left unaffected side. It also possibly feels a little tender on the upper lid, part above eye and under the eyebrow. It's the area that would naturally be effected by aging and would sag, but the right eye is much more than the left. Any thoughts about whether this is related or not?  I'd really appreciate anyone's input on if they had this, or if you think it's related or not. Thanks so much for your input.
Stressed but hanging in there,
CA Marti

[Greece Lover]

I'm no doctor, but it sounds to me like you might just be hyper  sensitive.  I still, five years out from surgery, have things that freak me out with my face, but if I hadn't had and AN, I probably would never have given a second thought to them.  If you mentioned it to your doctor, then you're covered.  I know it's hard, but try not to worry about it! 

[CA Marti]

Thanks for your reply, I truly appreciate it. I think that symptom coupled with the symptom that a lot of the time when I smile I get that little twitching under my right eye (also a bit under left eye) makes me paranoid that maybe it's a facial schwannoma. I know I have to just trust the doctors I've consulted with who all agree it's a vestibular schwannoma. The fact that some of these could be a facial schwannoma without knowing it is what poses that extra worry. Also the shape of mine is a bit different I believe, more of a nodule that's long and skinny. I really hope I am hyper sensitive and that it's not another symptom. I will try not to worry about it.
Thanks!

[CA Marti]

Hi Everyone,

     I suppose since nobody else replied this means that nobody else has experienced this. Either this is unrelated to the tumor and it's just a coincidence that my right eye is different than my left, or it's related to a facial schwannoma which only a handful of people have had on this forum. I'm going to call the doctor and see what they think and let everyone know what that result is.

Thanks,

[Greece Lover]

sounds good. Could be helpful  for others in the future.

[Cheryl R]

I did have a facial with neuroma with no twitching.   I have heard alot of people  with twitching and regular AN.        I did start to have facial droop not long before my neuroma was checked and thought to be a facial one.      Mr dr also said can't be sure till do get inside.   Any way it was,  Nerve was severed.     My dr does a immediate graft of a nerve from by the ear at same time.  Took a few months for movement to start and have done pretty well.   No movement at eyebrow.     This was in 2006.
                                                           Cheryl R

[Cheryl R]

It would be hard to say.       I don't think it is for sure.  You might just have weaker muscle on that side.      MY symptom from facial neuroma was facial drooping.
  Only way to know for sure is have surgery.                         Cheryl R
       
           

[CA Marti]

Hi Cheryl,

Thanks so much for responding! Could you tell me what size your neuroma was when you first experienced the facial droop? Also, did your eye and mouth droop at the same time? Did you have full eyebrow movement when you had the droop? It's just sort of weird because I don't know what would be considered droop. I have full movement in the eyebrow and eye muscles and my mouth isn't effected at all. It's just my eyelid that falls down lower on the side of the eye (AN side). Also, sometimes when I smile I get a small twitch under that eye, but also a tiny bit under the other eye. Can't tell if it's just stress or something else like a symptom.

Thank you!!

CA Marti

[CA Marti]

Also, the reply from the neurosurgeon was that it would be very unusual for the facial nerve to be affected, but not impossible. They also said that there is no reason to think that this will progress, and there is no reason to change plan of observation. Any treatment undertaken would increase risk to the facial nerve.

So, I suppose this means my facial nerve is not affected and maybe it's unrelated. But, if that's the case, then why would treatment increase the risk to it? Also, I suppose there's still a chance it's a facial schwannoma, which would not then be unusual for it to be affected now. Still stressful and frustrating because if it is a facial schwannoma, I believe it's important to treat it before the symptoms get worse.

Thanks for listening to my rambling,

CA Marti

[CA Marti]

I just had a meeting with a radiologist and they said that the eye twitching or blepharospasm is not related to the acoustic neuroma and that it's likely from lack of sleep or stress. He also mentioned that mine definitely looked like an acoustic neuroma and not a facial schwannoma. His reason was because of where it is located. He looked at my eyes and had me close them very tightly and then said that if they were affected I wouldn't be able to close them tightly like that and there would be weakness. He thought the slightly droopy eyelid was not related at all. I just wanted to update this in the case that it might help someone else.



CA Marti

[Greece Lover]

sounds like relatively good news?!

[CA Marti]

Yes, I suppose it’s good news. It’s hard for me not to worry, though. I do normally have higher anxiety than the average person, so add the tumor in the mix, and my mild hypochondria and it’s not the best combination. It’s hard for me to tell what are “imagined” symptoms and actual symptoms. I’ve found the “calm” app and yoga helpful.

[Greece Lover]

I know EXACTLY how you feel.  I saw a therapist a few times and found it super helpful.  Don't be afraid to seek professional help. It's what they're for! 

[CA Marti]

Thanks so much for your support and suggestion. Yes, I’m sure a therapist would be of great help to me, if only for a few sessions even.

Thanks!

[Cheryl R]

I had facial droop.  The side of my face.        My eye brow not working was after surgery and the nerve graft and several months later.   The facial droop started like 2 weeks before saw the dr. The facial neuroma was probably 2 cm.         I do not believe that all drs really know as much as they think they do.          Many seem to have twitching and is not from a facial neuroma.  An acoustic one.        The eye sagging I am not sure as never had that.              Hard to know what is the best to do.      I never regretted having surgery  as did 3 tumors out over time due to NF2.                                      Cheryl R