Facial paralysis

[madison]

Hi. I had translab  a month ago and I have r sided paralysis. My tongue is numb on that side as well.I was told they stimulated my face and it reacted we'll,but it will take awhile for my facial nerve to regenerate and that it will be longer for me since I had gamma knife.  Has anyone had paralysis that went back to normal?  I was also wondering if you experienced anything as the nerve was healing?  I feel like things are happening below the surface sometimes so I try to take it as a good sign. Just today my teeth on that side were really achy,almost like I had dental work done and the novacaine was wearing off. I also get sensations on my tongue that I can only compare to eating the candy "pop rocks" when you were younger.I would love to hear any comments you have regarding the subject of facial paralysis,etc thanks so much..it really helps.

[LakeErie]

I never had paralysis, but did have some post-op facial weakness which resolved almost completely over time. Of course, I did have tumor ( 3 to 5%) left on the facial nerve and the brain stem so my facial nerve was protected by sub-total removal.
I also had throat involvement which is taking longer to resolve. Both my surgeon, who has performed over 600 AN removals and over 1000 meningiomas, many in the C-P Angle, and an ENT I consulted, told me cranial nerve healing requires as long as 12 - 18 months. Sometimes they see improvement out to 24 months.
The right side of my tongue is still numb, 9 months post-op, but I am so used to it that it doesn't really bother me anymore. I have numbness on the lower right side of my face and get periodic tingling on the entire right side of my head. But I am used to that as well. I have 9 more months to go to reach 18 months when I will consider myself recovered as far as possible nerve regeneration.
I am 3 months from my 1 year follow up MRI to check the size of the residual tumor which will tell me the rest of how well I have recovered. All we can do is be patient. Good luck

[mindyandy]

Hi Madison
I am 4 months post op. My story is a long and strange one...but anyways I don't have facial paralysis or weakness but I do have facial twitching or pulsating whatever it is it is continuous and vurtually non stop. At times its strong and at times I hardly notice. Nobody else sees it unless I stop and point it out to them. Dr. Schwartz says its not doing any harm and hopefully it will go away. I've learned to adjust. I know what you mean by novacaine wearing off feeling. I was really numb after surgery. It is still there mildly. My tongue also gets the weird pop rocks sensation.....I chalk it up to nerve regeneration also. You are not alone.

Mindy

[alabamajane]

Hi Madison,
Congrats on getting through your translab successfully,, you will find patience is your greatest "friend" now as you continue to heal. ,, it is going to take time and you can't rush it..

I had my translab 9 mo.s ago and did have facial paralysis due to losing the facial nerve. I also had the 12/7 nerve graft, grafting the facial nerve to the tongue nerve on that side.. so I have a lot of healing to deal with,, I had an ENG test several months ago to determine that the nerve graft did  "take" successfully so now it is just a waiting game for entire regeneration to take place which as has been noted can take from 12-18 mo or longer... it is VERY hard to deal with and patience has not been easy!!
I still have numbness and tingling on that side of my head, ear still is numb somewhat although MUCH better, jawline is numb and tingly still.. most of the numbness on that side of my face is gone and some movement is noted.. I have a weight in my eyelid to help it close and that is getting very "tiresome" to deal with , I have a Dr appt in Sept. for followup MRI and plan on asking when I can get weight taken out,, I feel like eye is closing and opening pretty well on it's own and maybe it is time to take it out,, we'll see... may be wishful thinking....light massage on your cheek area may help some as the numbness starts to "move" off of your face and ear...

My tongue is "dead" on one side due to graft of that nerve.. so I probably have a few different symptoms than you will have,, but am learning to deal.. the tingling you are feeling, I believe is mostly due to nerve healing and in my case regeneration, but I am not a Dr.. but there is A LOT of healing taking place in your brain and skull and nerves due to the translab itself.. as I say,, it is so hard not to try to rush things but it won't help to overdo... and most of the time ,, I can only do so much anyway before "body/brain" says STOP and rest for at least 15-20- min.... naps are a "life" saver!!

Sorry to ramble, but I am going through most of what you are experiencing,, if you would like to PM me I will be glad to talk more,, it has been a very overwhelming ordeal to say the least,,, and many have been through it I know, but it still is each of ours own journey and we all "deal" differently... some days are OK and some are not,, I strive for more of the OK days...
Hang in there girl,,, your days are going to get easier,, I wish you the best .....Jane

[madison]

Hi.thank you for your replies.it's very hard to be patient but I'm doing ok. I have my first outpatient
Therapy visit tonight..well,the actual first one was Monday but it was mostly evaluation to begin.I am having lots of sensations so I take that as good. I go to see the neurosurgeon tomorrow,so we will see what he says. I just don't see a light at the end of the tunnel because I probably have to have a meningioma removed after I recuperate. I tested negative for nf2but i truly believe I have the mosaic form of it. I Try to live my life as normally as possible and my recovery from the facial nerve paralysis would really help me.  I'm so glad I have this forum. Last night I was reading old posts that were so relatable about biting your lip when eating sandwiches and asking for extra napkins and drinking my coffee through a straw! I actually had a good laugh about it because it all was so familiar!thank youneveryone for your stories and support.

[missdiaz]

Hi Madison,

I had my translab 8 months ago and I still have left side paralysis and numbness on half my tongue. At about month 4 I started to feel some pain around my mouth and eye on the left side. I got slight movement back in my eye and in the corner of my mouth. I am able to get a slight smile on the left side, but it is no where near normal to me. But really that is the only change I have had in the past 8 months. Everyday I pray for my face to go back to normal.

My doctors at Stanford recommend that I do nothing for at a year and they say I should see improvements over the next year. Since the facial nerve was not damaged during surgery I was told I should regain movement. Only now at my 6 month appointment was I told that the movement I should I expect to gain may not be the same as before surgery. So in other words, the doctors really have no idea how long it will take me to heal and there are no guarantees that I will look and feel the way I did before surgery.

I do not at all want to come across as negative toward your experience. I just wanted to share my experience and let you know I understand what you are going through. It feels like FOREVER when waiting for improvements and for your sake and mine, I keep out the hope that this someday will all be just a distant memory.

Best of luck,
Melissa   

   

[nancyann]

Hi Madison - it sounds like things are moving along as they should be - I think you will find more and more movement -  sorry, but you have to have patience with this, no way around it. Always good thoughts, Nancy