Problems with eating

[followingHim]

I was wondering if anyone else has found that their facial paralysis has got worse?

Rob had a surgery to insert a shunt on 9th July and in recent weeks the facial paralysis has got worse and now his face on the left side is completely dead.  This is making eating and drinking quite difficult because he has had to have some teeth out on the good side and is going to have to wait some months before he can be fitted with a denture.

I see from some of the threads here that there are facial therapists but we have not come across this in the UK.  No-one has ever mentioned this option to us. 

I would be really interested in any information or comments.

Blessings

Ley

[Kaybo]

I don't have exactly what you are referring to but it seems that over the years, I have good spells and not so good ones eating.  Don't kid yourself, unfortunately I can still pack the food away!!    I have had complete paralysis for 13 years so I have learned to adapt but it seems like sometimes it just doesn't work as well.  I will literally go for years and then one day I'll start having more trouble.  I am having a "not so good time" right now - for me, it is really just that it is messier or food will "fall out" of my mouth!  Kind of embarrassing - you'd think I'd have figured that out by now!

Hope it gets better and the new teeth help!!

K

[ppearl214]

Hey Ley!

As I can't answer this thread specifically, but I know there are many that should be able to contribute, here's hoping others can provide answers to help the cause.

Please give Rob a BIG huggle for me... and a Radox "Relax" for you!

xo
Phyl

[nancyann]

Hi Ley:  sorry to hear of Rob's troubles.   Have you spoken with the neurologist to find out why his face is more paralyzed ?  I would also ask the doctor
about facial therapists in your area.
I also have facial paralysis,  & eating was difficult (before my T3 surgery).   I still don't chew on my AN side because food gets lodged between
my cheek & gums.  It's probably even harder for Rob since he is missing some teeth on his good side, which is where he would probably do
most of his chewing.   As K said,  it should definitely get better once that problem's fixed.
Sometimes a little food will still come out of my mouth, I guess I've just gotten use to it.
Hope things will work out...
Always good thoughts, Nancy

[followingHim]

Hi Nancyann

Thank you for your reply.  It would appear now that we have seen the consultants since I first posted this thread that the reason for the worsening of the paralysis is that the tumour has swollen since treatment a year ago by 4-5mm and is putting more pressure on the brain stem.  The worsening of the paralysis also means that food tastes awful, particularly bread.  Some foods like meat are very difficult to eat and Rob has no idea if his mouth is empty. 

Unfortunately Rob has also developed hydrochephalus and has had a shunt inserted and he still has a lot of balance problems and needs a stick to walk so he is not having a very good time of it just now.
We will soldier on (one day at a time of course) til the next MRI and take it from there.

Blessings

Sheila

[followingHim]

Rob is going to be starting a course of Carbamazepine, which we hope will help.  A letter from the consultant states that he has quite dense trigeminal numbness with an absent corneal reflex on the left and House Grade VI facial nerve function.  We haven't come across all this technical jargon before.  Rob has also been getting very bad tingling sensations around the left side of his nose the past few days and this always starts when he gets out of bed in the morning.

[saralynn143]

The tingling at the side of Rob's nose may be good news that the nerve is healing. That's the first place I noticed movement right at the three month mark.

For me, difficulty eating ebbs and flows as the various muscles on my face become stronger in relationship to one another. So does drinking. Right now I'm doing well drinking from cups and glasses and need a straw only for small neck bottles. It completely freaked me out when I seemed to regress back to dribbling out of the weak corner of my mouth again, but after a couple of months my muscles found their way back to an equilibrium, at least for drinking purposes.

I know it's hard to be patient, but I'll be hoping and praying for the best.

Sara

[nancyann]

Hi Ley & Rob:  Tingling sounds good to me too since I never had it (my facial paralysis is permanent)...
Just in case you're not already, make sure to keep your AN eye well lubricated to protect the cornea from drying out.
I use lubricant (drops don't work for me) constantly.

Always good thoughts,   Nancy

[Jim Scott]

Ley/Rob ~

I'm sorry to learn of Rob's difficulties and pray they will abate, soon.  

I'm not a doctor but my reseach has led me offer you these definitions for some of the unfamiliar medical terms you're seeing.  'Dense trigeminal numbness' is another way of stating that the patient suffers from Trigeminal Neuralgia.  The loss of taste and feeling are associated with the (compromised) 5th trigeminal nerve.   Rob's 'absent corneal reflex' is a doctor's way of stating that his blinking reflex is not working. This is usually because the ophthalmic branch of the 5th cranial nerve has been compromised by the AN.  The House-Brackmann nerve grading scale was developed by the doctors at the House Ear Clinic in Los Angeles, California, famous among AN patients for their work with acoustic neuroma removal.  The scale runs from 1 to 6, with 1 being normal function in all areas and 6 being no function in the measured areas.   Carbamazepine is the recommended drug for relief of trigeminal neuralgia, which is Rob's condition.  

Again, I'm not a physician and this isn't a 'medical' opinion - but it would seem that Rob's facial tingling is a sign of the facial nerve attempting to re-fire.  Slightly annoying, I'm sure but a positive sign for all that.  

Jim

[CHD63]

Ley .....

So sorry Rob is continuing to suffer.  I pray he will have more good days than bad from here on out!

Just to clarify for others, dense trigeminal numbness is the lack of feeling in the face, whereas trigeminal neuralgia is excruciating sharp pains in the face.  Thankfully Rob is not dealing with neuralgia!

Clarice

[followingHim]

Thank you to you all for your interest and responses.  We do appreciate it.  Rob will hopefully see his GP tomorrow if he can get an appointment and then he can get started on the new meds.  I will keep you posted.

Blessings

Sheila