Face seems to be falling

[Tod]

Hi gang!

I noticed tonight that my left nostril is about a third the size of my right. When I talk, the left side of the lips turn in, etc...if you have been through facial paralysis you know what I mean. It is not severe yet, but it is noticeable.

I'm 13 months post surgery and I have had 80-90% function last summer. The only things that I can think of is muscle fatigue. For the last few weeks I have been exercising a lot more. I've also been talking  more. This is especially true since after having to postpone a planned vocal cord injection for next week, it seems that my voice is finally returning! (It's bit like being 12 again the way it goes in and out.) It is still not much of a voice, but it is stronger, and I sound less like a mobster.

I don't want to be paranoid and email my docs just yet since fatigue seems likely, and I have my Baha fitting on the 8th and my neurotologist will be present; I see my vocal cord ENT on the 7th; and then an MRI and neurosurgeon consult on the 11th. Thus, all my docs are already lined up in a row (hmm, like my ducks) and rushing seems unnecessary.

Thoughts from those of you with more experience with facial issues?

Thanks in advance,

Tod

[Brewers7]

So excited to hear about your vocal cord!  I spoke to a lady from my church recently who had vc paralysis for 7 years and then regained her voice.  Now, you would never know that she had a problem.  I was amazed.  I have had some improvement with my facial paralysis but so far I can't tell much difference with vc.

I have not had the nostril changes that you described although there have been all sorts of other changes along the way.  I have read posts about the nostril issues.

[Tod]

Thanks Susan. I am not positive yet that it is recovering, but people are noticing a change in my voice.

Now, the interesting thing is, and I should have figured this out a year ago, is that if I turn my head where my chin is over the right shoulder, I can make a significant improvement in my speech. If I reverse that to my AN side, the opposite happens. So I have a new stupid human trick.

now, the reason I feel I should have figured this out long ago is that when I was still in ICU, that is how they taught me to  swallow to avoid choking. It makes it easier for the active cord to close the gap.

-Tod

[Brewers7]

I wish someone had told me to turn my head to swallow.  I finally figured it out, but it took me about a year!  Stupider Human Trick.  FYI, I am singing some now - but only to my grandchildren.

[yardtick]

Tod,

My left nostril is so much smaller than my right, this is causing all kinds of issues for me now.  I am almost 5 years post surgery, I found out yesterday I need a "nose job" because I've blown most of the cartilage out.  For the longest time I was having problems breathing at night, now I just have problems breathing all the time because of the collapsed nostril.  I'm being referred, so I should see the specialist in about a month and surgery should follow in another month. 

Do you feel like your nostil is stuffed up all the time?  Is it worse when you have a cold?  With allergy season approaching take care of your nose, don't let it get to the point of mine.

Anne Marie

[Tod]

Anne Marie, It does feel stuffed and restricted. This is just recent though. There is a tightness across the cheek that I believe is related. I appreciate the words of warning because this does seem like it could become a problem. Like I said, I have appointments coming up, so this will be seen by docs soon.

Susan, I'm glad to read you are sing some now. I know that was important to you. I am now at the point where I can almost sing a few words.

-Tod

[Tod]

Brief update: Took a webcam pic of my face highlighting my nostrils. Sent it to my docs with a description of the symptoms. Neurotologist got back to me today and also forwarded the info to colleagues in NY. The developing consensus is that botox may be appropriate in order to avoid surgery later. He's checking with a local neuromuscular neurology specialist to get her opinion.

At times, the muscle over my cheek is quite painful, so while I would typically prefer to void something like botox, I probably don't mind so much.

-Tod

[Suu]

Tod and Anne Marie
When I lay on my good side I feel as though my nostril has collapsed so I put my hand on my cheek and push toward my ear and it opens it up for breathing again. During the day I feel that it's blocked most of the time and especially if my glasses have slid down my nose.

It's getting worse so will follow what you've both said and get it checked at my next appointment.

I was even thinking of duct taping my cheek at night! 

I absolutely hate the idea of any more surgeries other than the graft in a few weeks so if you come up with ideas please post them.
Thanks heaps,
Suu xxoo
 
 
 

[moe]

Sorry you have to go through surgery Anne Marie
Stupid question, but have you tried those  breathe right things that go over the nostril? I bet Anne Marie has, how bout you Suu?
Helps a lot, I have just some mild stuffiness in the AN side nostril.
Maureen

[Suu]

Hi Moe
I've been looking for the plastic ones that go inside the nostril and make them spread. Snorers used to use them to keep the airways open.

Might go for a check around ebay or our local pharmacies today and let you know.

Hugs,
Suu xxoo

[Tod]

I'm on CPAP with a full mask, so my sleep does not seem to be a problem....altho I am very tired this week, but that may be from work and a 2400 mile four-day road trip for my parents' anniversary hootenanny.

I would have your nose checked out, Suu. It is probably better to be safe than sorry.

Also, in my case, they are going to want to shove a camera in my nose and down my throat again before too long...I'd probably like to breathe while they are doing that.

-Tod

[doody73]

I spent years suffering from migraines that felt as though the right side of my face was falling off before they discovered my tumor. Since my surgery it LOOKS like it felt-falling off. I've tried exercise and massage. My speech therapist wants to try e-stim (electrical stimulation) or have me see an acupuncturist to reduce the paralysis.

I sometimes have to sleep in a recliner because my nostil collapses and makes it hard to breathe when I lay down. And the first time post-surgery that I tried to use my neti pot, I poured water in that nostril and nothing came out the other side like it is supposed to.

[Tod]

Well, no Botox for me. The specialist I saw yesterday doesn't think it worth the risk. Basically, I have hemifacial spasms that are pulling parts of my face different ways, and synkenesis. Instead we are going to try three different courses of muscle relaxants over the next six months. If none of those work, eventually it will be surgery to reconstruct my nose. She is not optimistic at all and doesn't think the drugs will work or that my body will ever self correct. My neurosurgeon is not willing to give up hope or the thought that massage and facial retraining might work.

We'll see what happens. My money is on being patient working on my facial muscles.

To reinforce what the real issue is (it is certainly not vanity), if I inhale deeply through my nose, especially while running or if the right side is stuffy, the nostril will close and seal itself momentarily. She has also ordered a new sleep study to determine if this has affected my sleeping ( I have sleep apnea).

Fun stuff, eh?

I did suggest to her that her patient intake survey needed to be rewritten. For example, questions like "My life is: Unsatisfactory/unhappy/Boring/Satisfactory/Other" I checked "Other" and wrote "Great" - because that is the way I feel.

I hope this is helpful to others in some way.

-Tod

[Jim Scott]

Tod ~

I'm sorry about your struggles but I admire your attitude.  I truly hope that between the drugs and facial (self) therapy, you'll obtain the results you seek.

Jim

[Suu]

G'day Tod

I saw the ENT specialist yesterday and I posted to this other thread as well - http://www.anausa.org/smf/index.php?topic=15039.0

The doc got me to pull some faces and he jolted (literally) when he saw a movement/twitch in my cheek! (So much for those nerve conduction tests that I'd had saying there were no messages getting to the facial nerve.)

BUT..... he saw that my face was actually drooping to the right side with my nostril closing off when I leaned that way.

Instead of the 12/7 graft and sling he was to do next Thursday the 16th, he's just going to do the sling to mainly bring symmetry into my face and move my nostril back into position. He's going to wait until December to see if there's any more face movement and we'll go from there on the next course of action.

I did a search of what he said he was going to do and found the following that I cut and pasted here for you.

Static facial slings lift the midfacial region to a more neutral position, but are immobile, or static.  In these cases, the face does not move, but does appear more natural as the corner of the mouth and nasolabial fold (the fold from the corner of the mouth to the nose) are restored.  Surgically, there are several variations, the essential idea is that a material (tissue from my leg) is used to 'sling' the corner of the mouth and nasolabial fold into a more neutral position.

Your post has been very helpful to me as I thought I was alone and it was all in my head  .  Maybe a sling can help you too?

Warmest wishes mate,
♥ ´)
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(,.•´ (.♥ •´ *Suu xxoo