New (mild) facial nerve sensations 2 months post translab

[riabovamd]

Hello, AN fellows!
Can you just share your experiences and thoughts on facial nerve? Before surgery I had moderate (grade 3) facial and trigeminal deficits- incomplete eye closure , dryness of the eye,  could not use straw to drink,  taste distortion with water tasting bitter or sour, numbness of the affected side and tingling of the lips before surgery.  All of this went away after surgery (subtotal translab ), to 99% normal face. Now,  in 2 months some of above feelings are back intermittently: I taste bitter water (sometimes), I feel burning in the eye  (on and off), I have to pay attention when using a straw, and feel lips tingling  (sometimes).  My MRI is planned for May.   Is it a commonplace from your experiences  in recovery process to have some intermittent symptoms back after being symptom-free? 
Thank you in advance!

[ANSydney]

Hi riabovamd, sorry to hear about your symptoms reappearing.

In your post of 17 January 2017, your symptoms appeared to be that you were "dizzy and tired". I wasn't aware that you had HB Grade 3 facial neuropathy and trigeminal deficits etc. Did things get worse rapidly before surgery?

For your 4.7 cm tumor, the cystic component may explain new suddenly developing symptoms before surgery as cystic tumors can grow quite rapidly.

With tumor removal, there is gross total removal, near total removal and sub total removal. It's a balancing act between removing as much of the tumor as possible and preserving the nerves. This article may be of interest to you https://www.researchgate.net/profile/Rick_Nelson2/publication/286445943_Facial_Nerve_Outcome_and_Tumor_Control_Rate_as_a_Function_of_Degree_of_Resection_in_Treatment_of_Large_Acoustic_Neuromas_Preliminary_Report_of_the_Acoustic_Neuroma_Subtotal_Resection_Study/links/57f6856e08ae280dd0bb2c4d.pdf?origin=publication_list

For gross total removal and near total removal, the regrowth rates (for larger tumors) was about 9%. However, for sub total removal, regrowth was about 28%. Given that you had sub total tumor removal, to preserve the nerves, the chance of regrowth is not as good - but then it's only been 2 months.

Did your surgeon say what the chances of regrowth are?

It appears that the preference for treatment following regrowth is radio surgery.

I personally would have an MRI immediately before and after surgery and then another 3-6 months after surgery.

All the best for the future and keep us posted.

[riabovamd]

Thanks for thoughtful response.   I agree with you hypothesis  about cystic component playing a role in facial symptoms.  Being dizzy was my most pressing symptom(not just vertigo but constant seasickness -when sleeping and ataxia standing /walking).  Facial grade 3 was not a priority, then. My MRI was done 5 days before surgery, CT the next day after surgery, and my next MRI will be 4 months after surgery.  So, you are right on my schedule, thanks! As far as waxing and waning symptoms now- looks like other threads are discussing similar predicaments.  I am doing research on genetics and epigenetics of that sucker, and it seems that it will not go without a fight, not with surgery alone at least. It is a defective gene, producing inactive tumor suppressing protein that does not contain the growth. Where are you at with your treatment?

[ANSydney]

Your symptoms were quite severe. I thought they were mild, as I stated back in January, "your symptoms sound mild for that size". Now I hear that there was compression of the brainstem and 4th ventricle causing daily vomiting and blurred vision. This sound terrible. I hope your new symptoms subside soon.

As for me, my treatment modality is observation. My 6 month MRI showed growth of about 0.5 mm so I think I can keep observing until the 2 year mark. This will give me 5 MRIs to establish natural growth. (My subsequent MRIs will be without contrast agent as I just want to determine size.) If symptoms beyond hearing loss or vestibular nerve neuropathy occur that would be cause to move to surgery.

My biggest fear is brainstem compression resulting in symptoms, and hydrocephalus. I'm not sure what the early warning signs are. Do you know if intracranial pressure can be measured non-invasively?

[riabovamd]

Found this one after I had answered your other thread. If you have a good ophthalmologist, you can ask him to examine your fundus- the opthalmic nerve area, paying attn to signs of elevated pressure.  In addition to clinical symptoms nausea, vomiting, blurred vision, and likely severe headache (I never had one) fundoscopic exam will point you that direction.

[ANSydney]

I had to look up fundoscope. I know it as an ophthalmoscope. Basically the thing that shines light into your eye and allows viewing of the retina at an eye examination. Wasn't sure they could "measure" intracranial pressure.

I'm seeing my optometrist on Saturday, so will ask for a close examination of the retina using an ophthalmoscope. Will also get a referral to an ophthalmologist for a more detailed examination.

Thanks for the information. If I can regularly "measure" intracranial pressure, that would be handy.

[ANSydney]

Just came across an interesting wikipedia entry https://en.wikipedia.org/wiki/Non-invasive_intracranial_pressure_measurement_methods . Haven't read it yet, but others may find it interesting as well.

[riabovamd]

Article content- hypothetically can be done, practically not realistic.  Fundoscopy is done by ophtalmoscope, checks back of the eye called fundus. There are signs of elevated ICP on optic nerve disc, that ophtalmologist can see, but they can not measure ICP .

[ANSydney]

Sounds OK, since all I want to know is about elevated ICP, not it's value. That is, basically elevated ICP than may start to cause damage.