Author Topic: SCARED, Just Diagnosed  (Read 759 times)

CraftyOne

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SCARED, Just Diagnosed
« on: June 04, 2019, 05:52:44 pm »
Hello All,
I was just diagnosed today with a 2.1 cm AN.  It started about two weeks ago, when I suddenly lost hearing in my right ear.  I thought I got it clogged in the shower that night, as I often did.  This time felt different though so I went to my PCP, who referred me to an ENT.  Then I got an MRI with the results.  At first my whole body felt very weak and numb, then I cried, then I started researching.  This could be very good or very bad.
My only symptom is the hearing loss, and mild dizziness at times.  I have no facial paralysis, which scares me more than the hearing loss. 
My ENT referred me to Barrow Neurological Institute, stating that I am a good candidate for surgery, but I am so scared of the residual effects.  Is all or partial facial paralysis a "given" post-surgery?  Are there people who never have that one symptom?

Thank you

kestes

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Re: SCARED, Just Diagnosed
« Reply #1 on: June 05, 2019, 07:12:58 am »
Very sorry you have been diagnosed, but glad you found the group!  There are Facebook groups also if you are interested.    I was diagnosed  a year ago and My initial symptom was instant loud tinnitus and hearing loss, but like you said it felt different and thus sent me to the doctor.  Then took about 7 months for finally someone ordering an mri.  12mm was found.  My only symptoms were the hearing loss and occasional balance issues.  One of the best first pieces of advice was to take my time.  Mine was not urgent, was not pressing on brainstem.  So I decided to watch the tumor for 6 months as sometimes they don't grow.  Unfortunately mine did grow.  I used that 6 months to consult with 5 different doctors re: surgery and radiation.  I felt comfortable with radiation and had treatment at UVA in Charlottesville, VA with Dr. Sheehan.  All is well so far... with radiation, tumors swell and can cause balance issues and vertigo and I am experiencing that right now.  But I did a 25 mile hiking trip in Utah just 5 weeks after radiation and we hiked to waterfalls in North Carolina last weekend.  I have flown on a plane half a dozen times in the 6 months also.  Fortunately throughout this whole process my facial nerve has not been affected BUT this tumor affects everyone so differently, symptoms are all different.  There are commonalities among us all, but location, size, etc. all are different for each.   Best wishes in your your journey.  It is scary once diagnosed. 

I was also fortunate in that my best friend was diagnosed 7 years before me and had gone through radiation treatment.  and yes we were all shocked when I was diagnosed with the same tumor.  I kid her and tell her she gave it to me!    Then another good friend reached out to me in the same town and she was diagnosed with AN  and yet another good friend's mother has same diagnosis.  I am surrounded by 3 others with AN - that is VERY uncommon and probably will never happen again but we all support each other. 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
MRI May 2019, slight swelling of AN but showing necrosis - experiencing vertigo issues
Columbia, South Carolina

samanthalambert

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Re: SCARED, Just Diagnosed
« Reply #2 on: June 05, 2019, 11:49:09 am »
Hey Crafty -
I'm sorry about your diagnosis. I remember the feeling when my ENT showed me the tumor. I started trembling. It is scary! The good news is that these tumors are benign and yours is still small enough where you have options. Mine was big and needed to come out. Definitely get other opinions and do you research. My tumor was 3.5 cm and sticky. My facial nerve was stretched and I woke up from a 10 hour surgery with facial paralysis. But a few days ago I was able to pull up my cheek muscle and make a small smile! Everyone's situation is different and you may not have any facial weakness, but even if you do, there are things they can do. Besides being deaf in my right ear, I am pretty much back to normal now and living my life. My advice is to stay positive! You are not alone and you will get through this. Best of luck as you navigate through your options.
3.2 cm AN (right side) diagnosed in 10/2018
Only symptom: mild hearing loss
TransLab surgery 1/2/19 @MUSC w/ Drs. Lambert & Patel. Sliver of tumor left.
Rt. Side facial paralysis (nerve stretched), tumor was "sticky", SSD, getting platinum weight implant 6/13/19
Doing fine otherwise!

v357139

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Re: SCARED, Just Diagnosed
« Reply #3 on: June 19, 2019, 06:27:26 pm »
Hi Crafty,
It is the opposite of what you are afraid of.  The majority of AN surgery patients do NOT get any permanent facial paralysis.  The complication rate for permanent facial issues is somewhere like 10%-15%.  That means 85%-90% suffer no permanent facial issues.  The key is to go with an experienced team.  Do your research and write down your questions, like this one.  And ask the surgeon when you go meet him.
Rich

PS: At that size, radiosurgery may also be an option.  As well as wait and watch.  The Member site has lots of information.  Read up and get educated.  Then you can ask your doctors educated questions.
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!!

CraftyOne

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Re: SCARED, Just Diagnosed
« Reply #4 on: June 22, 2019, 02:01:01 pm »
Thank you all for your replies, I appreciate it.  I am reading more and more about how individualized AN's are per person.  I did meet with a neurotologist, who suggested surgery.  I am still doing lots of research and coming up with tons of questions to ask the other neurosurgeons I plan on meeting with.

v357139

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Re: SCARED, Just Diagnosed
« Reply #5 on: June 23, 2019, 06:51:55 pm »
That is good.  Do you  have any interest in radiosurgery?  If so, you will need to talk to an experienced radiosurgeon.  You cannot always count on a surgeon to advise you well on the other options, such as radiosurgery.  I just want to point out that you have options.
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!!

ANSydney

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Re: SCARED, Just Diagnosed
« Reply #6 on: June 23, 2019, 07:47:24 pm »
Speaking of options, there is always observation.

KeepSmiling

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Re: SCARED, Just Diagnosed
« Reply #7 on: July 24, 2019, 09:21:46 am »
 See my posts under Keep Smiling for details about a possible radiation option called Proton Beam. See my profile and posts for all details. It is now 2019 and  are still pleased with the outcome of 2013 Massachusetts General Hospital treatmen/team of docs led by Dr. Jay Loefler.AN has gotten smaller as time elapsed. Tinnitus at times but no other issues. Continues to work full time job with heavy intellectual expectations.  Suggestion: Read up and research the most recent innovations with Proton Beam Therapy. Hoping good things for you and all of the AN patients!
12/O6/2O12: 1.5 cm lesion.Proton Therapy-July/Aug, 2013 Massachusetts General Hospital. 2/23/2018 MRI: 1. Small .5 cm x(AP) x .8 cm (TV) x .8 cm (CC )left intracanicular acoustic schwannoma) Completely deaf in one ear. Occasional tinnitus. Zero side effects.

Enri

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Re: SCARED, Just Diagnosed
« Reply #8 on: August 02, 2019, 07:41:23 pm »
I am so sorry to read about your diagnosis.  It is scary but i found a lot of useful information in this forum.  Mine was 1.5cm x .8cm in the right side.  I experienced partial hearing loss.  Yeap, the feeling of water after shower.  I thought it was my allergies acting up, but after a couple of visits to the allergy doctor I ended up at the ENT and with the MRI.  I chose surgery - retrosigmoid.  Pre-surgery symptoms were partial hearing loss and some tinnitus.  Post-surgery is the same.  My face and balance were not affected.  I had my second post MRI and still showed the magic words: no residual or recurrent VS.  Everyone’s experience is different.  Back in nov 2016 I posted a long note about my surgery.   I did have a CSF leak and meningitis a few days after surgery which landed me in the hospital for a second visit but it all got handled nd resolved.  I was home by Thanksgiving and life has been great since then.
----
Diagnosed Oct. 2015 - mild tinnitus, partial hearing loss - Right ear
1.5 cm x 0.8cm
Retrosigmoid Nov 2016 - Houston Methodist - Drs. Vrabec and Britz

Anne S B

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Re: SCARED, Just Diagnosed
« Reply #9 on: August 03, 2019, 06:46:41 am »
I am so sorry to hear about your diagnosis.  The good news is that your tumor is small.  Just a word of caution, although I am an exception.  I had Cyberknife at Johns Hopkins in 2013.  All was well until my last (recent) MRI, which showed a 2mm growth.  My tumor is now 1.7cm.  Now I must decide between watching and waiting and having surgery.  I am in my 70s and not eager to have surgery.

Greece Lover

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Re: SCARED, Just Diagnosed
« Reply #10 on: August 06, 2019, 03:19:13 pm »
Sorry to hear of your diagnosis.  one of the "good" things about these tumors is that they grow slowly and so you have time to make a decision. 
To answer one of your questions, lots of people come through this with no facial paralysis.  It depends on the location of the tumor and the skill of yours surgeon and probably some luck.  But at 2.1 I don't think long term facial paralysis would be a big concern.

Did your doc say which "approach" for surgery?  There are generally 3 "ways in."  Each with its benefits and drawbacks.

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 not tumor.  No MRI for four more years!

 


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