Author Topic: Resting Face , Tumor Side Mouth Higher?  (Read 4434 times)

saratrehan

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Resting Face , Tumor Side Mouth Higher?
« on: June 19, 2020, 08:18:01 am »
Hello,

I have noticed when my face is in resting face, my tumor side mouth appears higher than my non tumor side. Its not totally noticeable to people, but it frustrates me. anyone else have this? Anything that can be done to correct it?
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #1 on: January 02, 2021, 04:03:01 pm »
I know there has been some time, but I am now seeing the same thing myself.  I am 3 months post radiation and now my AN side is the same as you describe.

Have you done any facial exercises or anything that might help with the nerve?
Thanks
GB

Boise Jim

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #2 on: September 17, 2021, 03:23:44 pm »
Yep, six years (almost seven) out from radiation and it's been that way ever since. Hardly think about it anymore.

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #3 on: November 07, 2021, 07:40:35 pm »
I have been researching botox vs Acupuncture.  Both seem like they might be a good way to go for our issues.  I would be interested in if anyone has done either and what they have for recommendations.
I have an appointment in January, so it will be awhile before I can update on results.
v/r GB

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #4 on: February 04, 2022, 10:09:11 pm »
Good evening all, I wanted to pass along my latest update.

Seems I have synkinesis on my radiation side.  Was able to get in with the doctors and they have recommended and administered botox to calm my face and get my eye to be more open.  I am 2 days into the botox and I can already see and feel a difference, but max results seen 3 -4 days.
10 shots in neck to relax the banding - now smooth
1 shot into chin to relax the dimpling in chin, still slight dimpling, but better and still not to the 4 days.
1 shot in upper lid and 1 shot in lower lid to help keep the eye open.  The volume was minimum to ensure no dry eye.  But might happen, but have had dry eye for a good part of this, so ops normal.
1 shot in my check and still tight so might need to get a little more, but not going to worry about it until the next dose.

My biggest thing that I wanted addressed was the eye not staying open.  I was very conscious of it and now much better.
 
I also start PT for my face in a few weeks and with the combo hoping to re-train my muscles.  I also have one more treatment of botox in May so I will keep you all posted.

Good luck and great option if anyone is looking to even out their face.

taylor123

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #5 on: March 10, 2022, 04:35:58 pm »
Thank you for sharing this update and how things have been progressing!

I had full facial paralysis after surgery (grade 6), but was very lucky to have slight movement at 4 months and things moved rapidly after that. I have tons of synkinesis at this point (6 months) which I attribute to the rapid return. Resting face = my mouth sitting higher!

SO thrilled to hear they were able to help you with botox. I have an appointment in May where I'm hoping for the same treatment :)
Vestibular Schwannoma 2.7 cm. Right side.
Translab Sept 14 2021 (90% removed)
Hearing loss, delayed onset facial paralysis, synkinesis

donjehle

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #6 on: March 10, 2022, 05:41:39 pm »
I gain so much inspiration from gbly!  Your story is amazing!

And taylor123, please post again after your appointment in May so that we hear how things are going for you in your recovery from this.  Hopefully, you will continue to do well!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #7 on: March 14, 2022, 07:28:52 pm »
donjehle,
Thank you but I like you all found the forum and it helped with decisions and what I ultimately decided on.

I think all of them come with different risks, but all are very personal.
I don't remember if I saw it in another post, what size is your AN?  What are thinking you want to do?  This is the phase with all of the research...I will say I was pretty sure I was going to do surgery and at the last minute asked to see the radiologist.  To the point even my husband was surprised at my shift. 

The funny part was I was worried about facial nerve impact, and still got some...hahahaha.  But in the end still very happy with my decision.
I just started facial PT, and got to admit I think I see some change, or maybe wishful thinking...

please keep us posted.
GB

donjehle

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #8 on: March 15, 2022, 02:19:15 pm »
Hi GB,

You really have no idea how helpful your posts in this forum have been to me.  Thank you for sharing your experience.

My AN was only 3.9 mm in November, so the treatment plan has been to watch and wait.  While waiting, I lost all of my hearing in my AN ear, and I had to be fitted with a CROS system.  My ability to taste has become worse while waiting.  I still have occasional ear pain.  And my balance was bad for a while; I fell a few times and resorted to the use of a cane to prevent additional falls, but I had great success with vestibular therapy and only struggle with my balance now when I am very tired.  The neurosurgeon I saw at Emory told me that having surgery was overkill for my small AN, and he declared that we would monitor it.  He did not ask me for my opinion or even offer radiation as an option.  So, he made the decision for me.

Like you, I would have been concerned about the facial nerve impact of surgery.  I am so sad to hear that you still have some.  My understanding was that it was quite rare to have facial problems with radiation, but now I am wondering where I heard that?

I sure hope that the facial PT truly is helping you along with the other botox treatments.  Even if I don't end up having facial issues, I may still ask for the botox if it would make my face look younger!  ;D

Again, thank you for all your posts!  You are a great contributor to these forums!  Keep posting!
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #9 on: March 17, 2022, 09:41:55 pm »
donjehle,
Thank you, but just passing it forward.  This forum helped me as well.  There is never one answer for an AN and that is why this is so nice to see what everyone has done. 

Now I will say this, if I knew then what I know now....I think I would have pushed to have it radiated when it was small.
Mine turned into a rapid growth and then it was almost too late and surgery would have been the only option for me. 

Facial issues with radiation are very rare as I have read too, that just tells me I still made the right decision for me, cause this puppy was wrapped around the nerve, or I assume so...ha!

I read about one lady that did WW for 10 years then finally had surgery, so for her it was perfect.  You just never know. 

Questions I pose for others to help them decide:
1. my hearing was gone overnight.  Why?  could have been because it was a rapid growth and that is why it happened so fast.
2. dizziness came on quickly, but also balanced out quickly.  But I was doing some of the PT I found for it too.
3. should have realized that my AN side looked less wrinkled at the time, but thought I was getting lucky on that side. Now I realize it was cause the AN was on the facial nerve.

I wish I would have seen a post like mine, I would have asked to radiate sooner than later.  Cause the sucker is going to grow, that we all can agree on, get it while it is small and kill it!

I was really tested on this cause I am like get it out of you...well I had to really change that train of thought with the skull. 
still very glad I did the radiation, just wish I would have done sooner, but then would not have had the doctors I had.

Dr. Jaboin just moved to Oklahoma City, and would recommend him every time.  Absolutely wonderful.
Good luck.
GB

donjehle

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #10 on: March 18, 2022, 07:45:37 am »
Wow! GB, I was becoming very discouraged, and your post is exactly what I needed to read today in order to motivate me to keep fighting.  As you stated, there is never one answer for an AN, and I truly respect the choice that each person on this forum has made regarding their AN.  I will never criticize another person's decision.  I read somewhere that there are several ways to get to the number 9.  It could be 1 + 8, or 2 + 7, or 3 + 6, or 4 + 5, etc.  No matter which way you go, you still reach 9.  And I think that is true with much of life.  We take different journeys, but in the end, we make it to where we need to be.  So, thank you for acknowledging that there is not one right approach for everyone and their AN.

I have my second opinion video conference scheduled for one week from today with the Mayo Clinic.  I know going into it that they are going to recommend WW (as did Emory and as did my ENT), and that is a perfectly fine option for many. many people including the woman you mentioned that did it for 10 years before she had surgery.  But I am not comfortable with that option for me anymore.  I appreciated how you said you think you would have "pushed" to have it radiated when it was small.  That word struck a chord within me.  I think I am going to have to "push" for what I want done when I meet with them next week.  If I do not push for it, I am afraid I will be stuck with the option I really do not want.

Your post has given me the courage to push to have it done sooner rather than later.  I am now going to write up a list of reasons why that is the best option for me now (while I am still in good health, while I still have good insurance before I am retired, etc.).

Thank you for your encouragement and help, GB!  I really appreciate all that you do on these forums.
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #11 on: May 10, 2022, 10:36:40 pm »
Don,
Sorry it has been a busy month, but wanted to catch up and see how your appointments went?

You got this and yes so many directions to go.

So I go in next week to get my 2nd round of botox.  It worked very well and I think I might only need one more.  I have been seeing my face slowly recovering and very happy with the 1st round.  My eye is better but still has a slight shutting when I eat, they say continues facial exercises and the botox I should be good to go.  I will keep you posted.

You are too kind, and you are just as inspirational.  You are asking the questions, doing your research.  it can get overwhelming, but you are in the right place to help you get to the answer that is best for you.  You are doing the hard work, and that is deciding. 

I would be interesting in hearing if in hindsight others would have pushed to move forward sooner or stay with the timeline they did.  I just wanted to put it out there for others to think about. 

The funny part and talk about getting tested, I was always one of those that said cut that stuff out if you have something.... well the man upstairs really tested me on this one.  I told him you are a funny guy and point taken.  I don't need to  always cut it out!  But I said it before and still wish I would have made a decision sooner, might have gotten in a little earlier and maybe slightly less facial issues, but who knows.  Still very blessed with the out come and I appreciate the wake up call I received to enjoy life and embrace the little things. 

If there is another take away is that we only get so long and enjoy.  I look at this as my reminder and feel blessed everyday.

Please let us know what you are thinking and we are here.
v/r GB

donjehle

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #12 on: May 13, 2022, 11:53:52 am »
Hi GB,

First of all, it is so wonderful to hear how your face and eye are doing!  I'm looking forward to hearing how your second round of botox went.  I'm praying that it is as good, if not better, than your first round.  It sounds like you are dealing well withwhat you feared the most.  And that is very encouraging!

I will tell you later how my appointment went with the Mayo Clinic.  They wanted me to have another MRI this month, but I couldn't get it scheduled at Emory until June 10.  After that MRI, I will share more.  All I can say now is that I'm very blessed.

And I love what you said about how God has changed things for you, and you ended up being blessed with the outcome you were not wanting.  I think each of us need to embrace the little things in life and appreciate the time we do have on this earth with our family and friends.

Again, let us know how the second round goes!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

gbly

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Re: Resting Face , Tumor Side Mouth Higher?
« Reply #13 on: May 17, 2022, 10:35:39 pm »
Don,
Will do!  I go tomorrow and will keep you all posted.

That is awesome, an appointment with Mayo, fantastic facility.  June 10th will be here before you know it, yes please keep us posted.
GB