Recently diagnosed

[CA Marti]

Hi Everyone,

   I've been reading posts for about a month now as I'm trying to research everything. I was just diagnosed in May of 2021 with a vestibular schwannoma, 10.5 mm X 8.5mm X 6mm IAC and extending partially into cerebellopontine angle. I recently had a middle ear surgery for otosclerosis (a hearing disorder where you gradually have hearing loss). My surgery was in November of 2020. It seemed to go well and I gained a lot of hearing in the right ear. Seven weeks after the surgery I started having weird tinnitus sounds in my operated ear. The sounds were not steady, like morse code but with tones. Then, one month later I had fluttering higher pitch tones in my left, good ear. After this, I noticed some mild face twitches, some on sides of mouth when smiling, and also under my eye.This prompted me to get the mri. Since I have two conditions, it's hard to know for sure if my new symptoms are from my surgery or from the acoustic neuroma which was just discovered.
     I've been very anxious and worried because I haven't been able to meet with a neurosurgeon yet and the tinnitus sounds are very loud and distressing. I've also had some eye twitching on and off and definitely more when I'm stressed. I have met with an ENT, (otolaryngologist) and had Dr.Lunsford review my MRI. I've also sent my medical records to Dr. Chang from Stanford but am waiting to hear from them. Dr. Lunsford confirmed it was a vestibular schwannoma by an emailed letter to me, but I'm worried that either it's a facial schwannoma or that maybe it's pressing on the facial nerve because of my intermittent eye twitches. I'm also concerned that it may be growing quickly because of my progression of symptoms. Did anyone else have eye twitches with an acoustic neuroma similar to mine? Do you think it may be a good idea to get another MRI soon, as in two months after my first one? I was going to get one three months after the first one. Thanks for any help or advice you're able to offer. I really appreciate everyone on this board and their willingness to share information.
Thanks,
Martha

[Greece Lover]

Sorry to hear of your diagnosis.  You're in great hands with the docs whom you've contacted.  I don't think there's always a direct correlation between symptom onset/progression and tumor growth, so I'd cross that off your list of worries.  Also, I had a lot of face twitching, but I think it was more my own nervousness and hypersensitivity rather than caused by the tumor.  I know it's hard, but try to relax until you meet with the experts!

[CA Marti]

Hi Greece lover,

     Thank you for your response and reassurance. I think you may be right about the eye twitching being from stress and I probably should try to relax more until I can get some more opinions. It's good to know that symptom progression doesn't necessarily mean tumor growth. I was able to talk in person today to a top neurosurgeon, so I did find that very reassuring. He was able to confirm that it is a vestibular schwannoma and suggested getting another MRI in 6 months after my first one to check for growth. He also thought the eye twitching is probably more related to stress than to the tumor.
     Oddly he was extremely against radiation, and had a huge preference for surgery. He even mentioned that he knew of two people who had radiation who died from their tumor becoming malignant. I figured he would have a preference for surgery but I really wasn't expecting such a strong reaction against radiation so that threw me. I have been leaning towards the gamma or cyberknife if my tumor grew so now I have to reevaluate my choices and do some more research.

Thanks again for your help!

CA Marti

     

[Greece Lover]

Glad I could help.

One of the things you're likely to find is that everyone has an opinion, the doctors as well. My doc was pro-surgery, partly because he has to operate often on people's tumors who were not controlled by radiation, and then the surgery gets much more complicated.  But I think the radiation is become more and more common and popular.  A lot of it has to do with age and overall health, etc. Some people "want it out" and some don't want surgery.  It's strange to have such a wide variety of treatment options, and it can make the decision making process more difficult.  But, you've got time and you'll have good advice. 

I opted for hearing preservation Mid-Fossa surgery because it gave me the best chance at the best long term outcome, and I'm glad I made that choice. Let me know if there's any other way I can help!.  good luck!