Facial & swallowing issues...now?

[anissa]

I am 5+ months out from surgery and as some of you know the story, no facial weakness but the surgeons did leave a bit of tumor on the facial nerve because it wouldn't come off.  So...

in the last week or two I've had two bits of facial twitching, I don't think visibly noticeable but enough for me to say "wow".  Also, I am having a choking feeling when I eat or drink sometimes which I had before surgery but not since until now.  Like I'm swallowing food and all the sudden my throat forgets what to do, so I wait just for a second or two.  Again, nothing big but its there, you know?  Also having some numbing on the AN side of my face, top of my cheekbone, close to my earlobe and down my jawline. 

So, if an AN presents itself with hearing loss and balance problems and I have neither of those nerves then the only way I'll know if its back is with my face, right?  I'm trying not to borrow tomorrow's troubles, I promise, but I am worried.   

Anissa

P.S. I'm not sure where this post goes so if you need to move it...

[ppearl214]

Also, I am having a choking feeling when I eat or drink sometimes which I had before surgery but not since until now.  Like I'm swallowing food and all the sudden my throat forgets what to do, so I wait just for a second or two.  Again, nothing big but its there, you know? 

Hey Anissa!

Re: the quote above, pls double check with your docs to see if this is Chiari related. I have the same issue and recently discussed with my CM1 doc.  Just a thought......


Sending those healing hugglez to you! You know it!

Phyl

[sgerrard]

the only way I'll know if its back is with my face, right? 

I think the only way is with another MRI.

If they left a little bit on the facial nerve, it doesn't surprise me that your facial nerves might be acting up a bit. They are pretty sensitive to any sort of disturbance (they are nerves, after all), and surgery plus a dead scrap of tumor seems like enough to me to cause a few symptoms. The throat effect might be due to another cranial nerve in the area getting annoyed, I can't remember which ones do what.

I would just keep track of whether the symptoms get stronger, and get those periodic MRIs for a while. Maybe try some Aleve to see if it is inflammation that can be controlled. I am hoping it is just part of the extended recovery weirdness that seems to be part of the AN experience.

Steve

[Cheryl R]

I agree with Steve.   I had a true facial neuroma and no symptoms until maybe a month before surgery and then just some droop and we think it was probably 2 cm in size by then.   This was not a regrowth.            I wouldn't be surprised if there could be some long term effects which we can feel.         My last surgery on the other side had no paralysis and I get occ twitches by the eye and the mouth.      The tumor all removed I was told.                  The swallowing could be something you ask about if it gets worse.                 I think if any regrowth would be much farther down the road.                    I do know it is very easy to wonder about any thing which doesn't feel right and we hope for no more problems.             
                                                             Cheryl R       

[moe]

Aw Anissa, I'm so sorry to hear about those symptoms.
We are SO in tune to any changes and that's a good thing and maybe a not so good thing too!
So yea, back to the surgeon I would go. Keep a journal of your symptoms. I know how organized you are!
And try not to think of the worst case scenario. Hopefully just a little inflammation around the nerve that can't be treated, but the MRI is probably in your future.
Are you supposed to get one at the 6 month or 1 year point?
Maybe up the date.
Hang tough, your're a busy mom.
Maureen

[Vivian B.]

Hi Anissa,

I am sorry to hear you are having these issues. They could be temporay, but I would definitely report it to the Drs you are following up with and also have an MRI just to be sure. It might be that the remaining piece of the tumor is just acting up, but it's better to check. Good luck.

Vivian

[Patti UT]

Anissa,
   Try not to panic. It could be the facial nerve healing since it was traumatized during surgery.  Call the doc,  you know, that doc.
I would check with your local doc as well maybe get an MRI through him and send it down to ...the doc.  (private joke)  I have been having the swallowing /choking thing lately as well and we know I have tumor on the facial nerve as you do since they left some on yours
Your in my thoughts and prayers as always

patti ut.

[anissa]

Thanks guys!  Phyl, I hadn't thought of it possibly having to do with the Chiari, I'll keep that in mind.  I thought it was sweet of you to remember that about me.    I am just going to go on for now and chalk it up to surgery/recovery and if things act up again then I'll call...the Dr.  Patti, I'd hate to wait in the waiting room for two hours (after a 4 hour drive) to have him tell me its nothing!  Oh, and Moe, we are in tune to our bodies!  I've never been so in tune to every ache and itch, its annoying sometimes!  My first MRI is at a year, so next April.  Hopefully I can make it until then to find out that everything is A-Ok. 

[sher]

Hang in Anissa.. I know I haven't had surgery, but waiting and wondering with every twitch for next MRI after CK or surgery can be unnerving. I hope all is well with you and next time you all go to dinner or lunch I will be there.
Hugs,
Sherry

[alicia]

Could be the whole 40 thing 

Just kidding...I have had a few small twitches lately in my upper lip...not sure why.

I was going to ask you  - do you have an estimate on the size of tumor left in?  My doctor said smaller than an MRI would detect, but when I went in for my 3 month MRI...5mm!  He called to talk to me about it...and of course, he is not concerned!  Feels it won't do anything and if by chance it does...we'll just zap it.   He says that with such ease - it's frustrating!

How are you recovering other than the new pesky face stuff? 

[anissa]

I'm pretty convinced that this all stems from turning 40!!!   

They also told me, smaller than an MRI could pick up so...we'll see.  If your doctor isn't concerned then thats a good thing, right?  When is your next MRI Alicia? 

I am feeling great other than the "post treatment weirdness".  I have had an incredibly busy summer with my kids and survived!  I know when I over-do it and need to take it easy and the dizziness is becoming part of life.  SSD was new and interesting at first, then annoying, and now it downright bugs me some days but then there are other days I don't even notice it.  I guess it all balances out in the end. 

How has your recovery been?

[alicia]

Anissa -  let me start by saying I can bug you about turning 40 cuz I just had my big 4 0...3 days ago!

I was scheduled for a 3mo, 6mo, and 1yr MRI...they gave me the wrong MRI at 3mo, so it turned into me having another at 4mo!  So I am not sure if I will have a 6mo. or not.  I am - just by chance - going to California next week with my husband for a work trip, so we are flying into LA first to have a check up.  My doc just always says the right things to make me not worry, but sometimes that attitude makes me worry more!  He and my husband are like two peas in a pod with "don't worry" or "it'll be fine."

I am doing well.  I agree the SSD is "interesting" at the beginning, but it is somewhat annoying now.  I feel I am getting used to it, but I am so tired of saying "WHAT?"  I have been getting some mild headaches after working out, but at least I can workout!  I think I felt normal again at 3 months. Like a fog had been lifted.  Minor balance issues that people don't notice. 

You are dizzy??  All the time?

[wendysig]

Annisa,

Sorry I'm a little late coming in on this, but hope you plan to see your doc soon.  These symptoms sound like they should definitely be investigated.  Hopefully, since it does sound like  your facial nerve acting up it will stop on it's on and not be anything serious.

Best wishes,
Wendy