Author Topic: Newly diagnosed and a bit nervous!!!  (Read 2539 times)

Carver55

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Newly diagnosed and a bit nervous!!!
« on: January 24, 2022, 02:55:09 pm »
Hello every one I was diagnosed with AN 1/24/22 had an mri done 12/15/21 and found out I had a tumor. I started hearing my pulse in November and went to the ent and he said it was probably nothing. A week and a half later I woke up and couldn't hear out of my left ear I went back and he got me an mri which should the tumor. It was very sudden. I have two babies and trying to adjust to this. I'm going to emory to get my surgery in late February. He said that surgery is my only option being so young. That the tumor is already in the space where the brain is.  I'm very nervous about waking up and possibly having facial paralysis. Did anyone get it from the surgery and how long did the surgery last?? And can the facial facial paralysis go away ?? Or do you have to have more surgeries?? I'm 24 years old and have a 1.8 cm tumor.
translabyrinthine Done on 3/29/22 at emory in atl. No facial paralysis. Lost a bit of taste on left side and balance and walking issues. Ssd left side.

MariettaJoker

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Re: Newly diagnosed and a bit nervous!!!
« Reply #1 on: January 24, 2022, 06:07:56 pm »
Carver55,

I may be able to help alleviate some of your fears. I just had surgery for a 2.3cm tumor at Emory and I had a great outcome as far as the tumor removal. The doctors at Emory are wonderful and experienced. My guess is you may be seeing Dr. Vivas and/or Dr. Pradilla?

In my case the surgery went well and lasted about 7 hours. I had some facial paralysis PRIOR to surgery since the tumor had really started to compromise my facial nerve and as a result I do have facial paralysis post surgery. I doubt you will have this problem based on your comments here. My issue was driven by the fact that I had significant facial paralysis PRIOR to surgery.

You will get through this surgery better than you think and you will be surprised at how fast you start to recover. Stay positive and exercise as much as you can before and after the surgery, that was the secret to my recovery in my opinion. I walked 3-4 miles daily as soon as I got home from surgery.

I will likely have to have additional surgery to correct my facial paralysis, but we’ll wait a few months to decide. I just had my surgery on 11/30/21.

Good luck and stay in touch since you are a GA neighbor!
« Last Edit: January 24, 2022, 06:24:46 pm by MariettaJoker »
"If we couldn't laugh, we would all go insane" - Jimmy Buffett
Vestibular Schwannoma 2.3 x 2.5 cm. Right side.
Surgical approach was translabyrinthine on 11/30/21 at Emory Hospital in Atlanta, GA.
Total right side hearing lost and facial paralysis on right side
Phonak Audeo CROS-P hearing aids

Greece Lover

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Re: Newly diagnosed and a bit nervous!!!
« Reply #2 on: January 25, 2022, 08:06:24 am »
Sorry you had to join the club.  It's easier said than done, but do try to stay calm and positive. I think it can help a lot through the process.  sounds like you've got a good place for treatment.  It never hurts to get a second opinion.  You can get a free consultation by sending your info to the house clinic in California.  Even if you don't get treated there, it could be good just to know you're getting the right advice.

As for the face, many people do have temporary  facial weakness after surgery.  I had it pretty bad for a couple of weeks.  In most cases, it resolves on it's own over time.  Facial outcomes also can correlate with which surgical approach your surgeons will use.  Do you know which one they recommend?  If you've already lost your hearing, it's probably trans-lab, which is good because it has the best facial nerve outcomes.

good luck!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

Autumnbird

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Re: Newly diagnosed and a bit nervous!!!
« Reply #3 on: February 01, 2022, 12:00:37 am »
I totally understand your nervousness. I had brutal anxiety after diagnosis. I can assure you about one thing: preserving the facial nerve is a huge priority for the surgeons, and they constantly monitor facial nerve functions throughout the surgery. I had facial numbness/movement issues for a few weeks even though my facial nerve was preserved. I was told that this is very common and resolves (if the nerve is not damaged) on its own over some weeks/months. I sent my MRI and audio reports to UCSD and House Institute (LA, California) for opinion. Their opinion was very valuable and reassuring. You can do that too if you wish to get second opinion. I can honestly say that the anxiety I suffered before the surgery was far worse than the recovery-related physical and emotional setbacks (including grieving the loss of hearing in my left ear) after the surgery.
47 yr female
Progressive hearing loss, tinnitus since 2017
AN diagnosis left ear September 2021
1.5 cm width x 2.5 cm length
Translab November 2021
@ Univ of Iowa (Dr Marlan Hansen)
SSD, facial nerve preserved
Recovery slow but steady

donjehle

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Re: Newly diagnosed and a bit nervous!!!
« Reply #4 on: February 01, 2022, 06:55:13 pm »
Hi Carver55!

I am a newbie as well, so I'm probably not the best one to give you any advice.  However, I also went to Emory after being diagnosed by my ENT, and I am currently seeking a second opinion from what the neurosurgeon at Emory told me.  The second opinion may agree perfectly with what the neurosurgeon at Emory said, and if so, then I will feel much more confident that I am following the approach which two neurosurgeons at different facilities agreed is best for me.  Yet, if they differ in their opinions, then it would cause me to re-evaluate my options.  Several specialists across the country can do telemedicine conferences with you where you don't have to travel anywhere, but can stay in the comfort of your own home.  That's what I am doing.

Best wishes!
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.  Stable MRI on 7/29/22
No treatment yet.

Carver55

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Re: Newly diagnosed and a bit nervous!!!
« Reply #5 on: February 07, 2022, 08:32:57 am »
Thank you for all your help! Surgery is the best opinion. The tumor is in the space where the brain is. Just wait to find a surgery date
translabyrinthine Done on 3/29/22 at emory in atl. No facial paralysis. Lost a bit of taste on left side and balance and walking issues. Ssd left side.

donjehle

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Re: Newly diagnosed and a bit nervous!!!
« Reply #6 on: February 07, 2022, 03:44:01 pm »
As your surgery date approaches, Carver55, how is your anxiety now?  Sometimes gaining more information helps calm us down a bit.  On the other hand, sometimes knowing more about what can potentially go wrong only increases our anxiety.  So, I'm curious about how you are doing emotionally through all of this at age 24?

Best wishes for a successful surgery with no facial paralysis!
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.  Stable MRI on 7/29/22
No treatment yet.

Carver55

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Re: Newly diagnosed and a bit nervous!!!
« Reply #7 on: March 19, 2022, 11:48:42 pm »
I'm only a week away and very nervous. I never had a surgery ever in my life. I'm still adjusting to the total hearing loss. It does get a bit aggravating because drive through and almost every person wants to stand on by bad ear (left ear). I don't like socializing to much cause I can't understand people in loud places so o don't go out with my husband and our friends, which definitely sucks. I definitely have a bit of depression but I think it's nothing I can't over come I have too! I've already looked into hearing aids to help.
translabyrinthine Done on 3/29/22 at emory in atl. No facial paralysis. Lost a bit of taste on left side and balance and walking issues. Ssd left side.

MarlaB

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Re: Newly diagnosed and a bit nervous!!!
« Reply #8 on: March 20, 2022, 12:27:17 am »
Trust that you have made the right choice, with the right doctor. Emory is a great place. Your confident attitude will help. No, that won't make the "scared" go away, but whatever happens, we'll all be here on the other side...wishing you the very best outcome!!

Marla B

donjehle

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Re: Newly diagnosed and a bit nervous!!!
« Reply #9 on: March 20, 2022, 10:44:49 am »
Hey Carver55!

I will be praying for you and a successful surgery this week at Emory.  I believe that prayer works, so I'm looking forward to a good report here soon.  Even though you have never had surgery in your life the good thing is that you are young, and young people generally do much better in their recovery from surgery.

I know what you mean about the drive-through.  I had a difficult time hearing what they said -- whether they were saying, "You can order when you're ready" or "Please wait a moment."  I ended up going to my audiologist in Cartersville, GA, and she fitted me with a CROS system so that whenever anyone speaks on my left side, I hear what they say in my right ear, my good ear.  After being fitted, the first thing I did was go to Taco Bell and order something from their drive-through.  I knew the CROS system was working when I could hear perfectly!  So, after some time following your surgery, I would encourage you to consider one of the CROS hearing systems.  Then you and your husband won't have to avoid social interactions with your friends.  It truly makes a big difference.  The biggest downside is that they are not cheap. 

Best wishes for your upcoming surgery!
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.  Stable MRI on 7/29/22
No treatment yet.

MariettaJoker

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Re: Newly diagnosed and a bit nervous!!!
« Reply #10 on: April 08, 2022, 03:45:54 am »
Carver55,

I also purchased the Phonak CROS hearing aids and I've been very pleased with the performance and I do recommend as well. As far as the depression, I thought about being depressed too with my ongoing facial paralysis, but I decided to just keep walking right through the depression and kick it's butt! I suggest you do the same. Keep your head up....
"If we couldn't laugh, we would all go insane" - Jimmy Buffett
Vestibular Schwannoma 2.3 x 2.5 cm. Right side.
Surgical approach was translabyrinthine on 11/30/21 at Emory Hospital in Atlanta, GA.
Total right side hearing lost and facial paralysis on right side
Phonak Audeo CROS-P hearing aids

 


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