Author Topic: Acoustic neuroma for a 24 year old dancer..  (Read 7094 times)

sheren

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Acoustic neuroma for a 24 year old dancer..
« on: January 31, 2016, 10:00:02 pm »
Hi,

I'm 24 years old and I just found out yesterday that I have AN and that my tumor is slightly more than 3cm and it is too big for gamma knife. I have bad hearing loss and ringing on my right ear, some facial numbness and my right vision is getting blur. I don't have a balance problem right now but i was wondering if i would have it after the surgery
How long would it take for me to be able to start dancing again? I was also told about the facial paralysis risk and am still unclear about it... as a 24 year old dancer, the loss of balance, hearing loss and facial paralysis would be devastating...

I live in Singapore but I am applying my visa to go to the States for treatment. I'm still confused between which doctors i should go to. I've heard of
Dr Friedman in LA
Dr Schwartz in LA
Dr Sisti in NY
Dr Roland and Golfinos in NY
Dr Berger in SF (He is an exteremely good and reputable neurosurgeon but I am not sure how he is with AN cases)
Dr Chang in SF

Any recommendations on the best surgeon? ): Please help I am so scared of the post surgery risks as my tumor is already large and it is the first surgery I've had in my life..

Thank you guys so much for helping, it is still a shock for me..
Translab surgery done on 24th february 2016 when I was 24 years old.
3.4cm tumor on the right
Dr Friedman & Giannotta of Keck Hospital USC

Anyone who needs to talk, get informations or needs support please don't hesitate to email me (: sherenhl@hotmail.com

michellef08

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #1 on: February 01, 2016, 09:35:48 am »
Hi! I was 27 when I was diagnosed almost 3 years ago.

I would highly suggest sending your MRI to both House Clinic (Dr. Schwartz) and USC (Dr. Friedman) for a free phone consult:
https://www.houseclinic.com/consultation/acousticneuroma
http://acousticneuroma.keckmedicine.org
I had both of them remove my tumor (back when Dr. Friedman was working at House, but he has since moved on to USC), with extraordinary results! They preserved my hearing and I had zero balance or facial issues. They are extremely experienced with ANs!

You can send your MRI to them and discuss your options while you wait on the visa process. Hopefully once you start gathering information about your individual tumor - location, size, and symptoms and risks, you may feel less scared as you become more informed. I know I did!

As far as balance - the surgeons may recommend you do VNG test, which tests if your tumor has caused your balance to be compromised in any way. In my opinion, as your tumor is larger - I would think it may have already compromised your balance, and your body has adjusted along the way to mainly use the other side's balance nerve. If this is the case - the surgery may not affect your balance very much as you have already compensated. At House, they cut my balance nerve on my tumor side during surgery - they believe that your brain will recover quicker by learning to only use your good side, rather than having to fight off mixed signals coming from a compromised balance nerve (from the tumor side). My tumor was small and the VNG test showed my balance was not compromised in any way pre-op. However, post surgery, I honestly was very surprised how fast my brain re-learned how to do everything with just one balance nerve. At House, they have vestibular therapists visit you as early as 2 days post-op to get you walking around to re-train your brain for balance. By day 3 post-op, the therapist had me doing balance exercises (stand on one leg, walk sideways, stairs). Before I even left the hospital, they highly recommended that I didn't jump or spin, but being the 27 year-old I was, and I was so confidence in my balance, I told everyone, "watch this" and jumped and spun around. Needless to say, my mom was not happy with me, but I pulled it off perfectly, and didn't fall! 

I honestly think being so young helped me recover quickly and I would assume you will be the same way. I'm not a dancer, but I did buy my first road bike after surgery, and have had zero balance issues riding it, skiing, or walking on a balance beam afterwards. It may take a little bit of time to adjust, but hopefully you can be just as great of a dancer you are now!

As far as hearing and facial nerve - that will always be a risk. In my opinion, the best you can do for that is to be in the hands of the most experienced surgeon you can find.

As far as time to start dancing again - I took the recommended 6 weeks off work to fully allow my body to rest and heal after surgery. At 6 weeks, I went back to work 9-5 with no issues at all. I would recommend not rushing the recovery time, as it will pay off in the long-run.

As always - this is just my personal story, and even the surgeons told me that my "results weren't typical", but as long as you are in the hands of experienced surgeons, a great outcome can happen!

~Michelle
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

v357139

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #2 on: February 16, 2016, 07:06:45 pm »
I had Schwartz for my 3.5cm and he and Slattery at House did an amazing job.  If they cut the balance nerve, then it takes time for the other side to compensate.  Right after surgery my balance was not good for a few days.  After several months it was quite good.  Not as good as it was before, but maybe 90%-95%.  I hardly notice the difference.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

areles

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #3 on: February 29, 2016, 07:00:01 pm »
hi - i'll try to respond with more detail this evening, but my son - age 22 - had a 2.8cm tumor removed just seven days ago via translab by dr. schwartz and dr. miller at house.

dr. miller assured us beforehand (several times) that since the tumor was so large and he'd probably had it for so long, that he was unlikely to suffer from any serious balance issues afterward, as the brain has already compensated.  dr. schwartz echoed this.

that has indeed turned out to be the case, at least so it appears at this point.  walking post surgery isn't exactly easy (least being said) this soon in post-op, but he has been able to do so unassisted since the day after surgery.  further, his pt just a few hours ago told us that his balance is better at this stage than most others he's seen, and attributed it likewise to the size of the tumor and his particular sport of choice - surfing, which he's been doing for seven years.

as a young dancer with such a large tumor, based only on our anecdotal experience and what our physicians told us prior, i suspect your balance will bounce back rather quickly.
« Last Edit: February 29, 2016, 07:02:57 pm by areles »
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

areles

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #4 on: March 03, 2016, 08:48:38 pm »
i'd like to add, pursuant to my earlier comment:

now 11 days post first op, this is where my son was three days post second-op.

https://www.dropbox.com/s/4xo1f6jjq1g8rby/20160302_131952.jpg?dl=0

not perfect, but pretty good, especially on the third shot.  the first, you'd have never known (but my camera wasn't ready).

he walks unassisted with seemingly perfect balance.  he reports some dizziness as he's walking, but his surgery was just 11 days ago, so i have to think (and hope) that's common and temporary.

« Last Edit: March 03, 2016, 08:50:14 pm by areles »
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

sheren

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #5 on: March 13, 2016, 12:59:28 am »
Dear all of you who replied to my previous thread,

thank you so much for all the informations you guys gave. Just wanted to update that I had my surgery done two weeks ago by Dr Friedman (thank you michellef08 for the great recommendation!) and Dr Giannotta. I'm extremely pleased with the result and I can now read, write, and watch TV without being dizzy! (: I have no facial weakness, little balance problem now (you were all right about the compensating of my left brain) and the right side of my face isn't numb anymore. The only thing is that I only cry on my left eye and I can only hear on that side as well but it is nothing that I cannot deal with. They are such excellent doctors! I am currently doing Pts and practicing very hard at home as well in the hope of going back to dancing soon.

areles, your son is doing so great too! I hope he will be surfing again in no time. (:

I have been very down before my surgery but this website has given me so much information and also hope. So thank you all.
Translab surgery done on 24th february 2016 when I was 24 years old.
3.4cm tumor on the right
Dr Friedman & Giannotta of Keck Hospital USC

Anyone who needs to talk, get informations or needs support please don't hesitate to email me (: sherenhl@hotmail.com

ANGuy

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #6 on: March 13, 2016, 08:15:25 am »
Great results and great mindset!  No doubt your background as a dancer prepared you for the tough physical effects of major surgery and recovery.  That is why my kids are involved in athletics, not to get a "scholarship" like all of there teammates' parents are hoping for, but to give them strength to handle the challenges that life gives us.  Dancing is physically challenging like sports and builds character.




Dear all of you who replied to my previous thread,

thank you so much for all the informations you guys gave. Just wanted to update that I had my surgery done two weeks ago by Dr Friedman (thank you michellef08 for the great recommendation!) and Dr Giannotta. I'm extremely pleased with the result and I can now read, write, and watch TV without being dizzy! (: I have no facial weakness, little balance problem now (you were all right about the compensating of my left brain) and the right side of my face isn't numb anymore. The only thing is that I only cry on my left eye and I can only hear on that side as well but it is nothing that I cannot deal with. They are such excellent doctors! I am currently doing Pts and practicing very hard at home as well in the hope of going back to dancing soon.

areles, your son is doing so great too! I hope he will be surfing again in no time. (:

I have been very down before my surgery but this website has given me so much information and also hope. So thank you all.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

michellef08

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #7 on: March 14, 2016, 10:16:49 am »
YAY, that is so great to hear!! And you are only 2 weeks out, so I'm sure your recovery will keep getting better!
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

mcrue

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Re: Acoustic neuroma for a 24 year old dancer..
« Reply #8 on: March 22, 2016, 09:17:23 am »
Awesome news. Being physically fit obviously places you in a better position for microsurgery as opposed to being morbidly obese. It's great that you could "stack the deck in your favor" with a world renowned team of experts.
« Last Edit: March 22, 2016, 09:21:35 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan