Author Topic: 3 YEARS TINNITUS- MRI shows AN- surgery imminent  (Read 8374 times)

stacey4574

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3 YEARS TINNITUS- MRI shows AN- surgery imminent
« on: July 20, 2016, 02:40:54 pm »
Hi everyone-
I have struggled with tinnitus in my left ear for 3 years.  I never followed up even though I knew there was more to it.  I finally started getting dizzy spells about a month ago so I went back to the ENT.  An MRI was performed and the following morning, I was asked to come back in to the ENT office to review the results.  I have a 2.5cm AN and visited with my first neurosurgeon today.  I am having a hard time believing that this is happening.  I am trying to focus on the fact that it is a benign tumor but the thought of an IV for the MRI makes me want to faint (hence why I put it off for so long)  Now they have to cut into my head and remove a tumor.  How did/does everyone cope with the "what ifs" aside from the obvious worry of recovery?  I have an amazing husband, 2 kids (12 and 9) and wonderful family & friends that will be there every step of the way but I'm really driving myself insane here and don't know how to shake it.  I don't want to at, socialize or work.  Best wishes to all in progress and congratulations to those who have this behind you already xo
2.5cm AN diagnosed 7-14-16
Currently meeting neurosurgeons to decide on surgery date

Greece Lover

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #1 on: July 21, 2016, 10:24:25 am »
I'm so sorry you got this bad news.  There are many stages to this process, all of them different, none of them easy.  But patience, endurance, calmness, and you can get through it.  The most important thing for you right now is to get the best medical care you can, and make sure you have a team that is competent, that deals with AN a lot, and that you are comfortable with. This makes all the difference in the world. I had surgery a little over 2 months ago, and while some of it has been tough, I just went for a 1 hour bike ride in ungodly heat and I feel great!  There is light at the end of the tunnel.

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.

WhatnotGems

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #2 on: July 21, 2016, 10:58:36 am »
stacey4574
Living with a tumor is stressful as is any major surgery and recovery. I have lived with a Pituitary Adenoma the last 11 years with annual MRI's the Pituitary Adenoma is also slow growing.
I found out about my Schwannoma on June 29th I have my first appt with a surgeon is on August 12. by then I should have my walking cast off. Since I have lost hearing in my right ear, I will walk in with the knowledge the Acoustic Neuroma will most likely be removed. The Pituitary Adenoma is still in the watch and wait mode until it interferes with my vision.
I found making a list of what to do and have done has helped me. I hired a handyman to finish off my summer to do list. I am also planning to have someone come in and clean for me. My added stress is I am my husbands caregiver, while we have family none live near us.
I found a list questions for your surgeon
https://www.anausa.org/pretreatment/questions-for-your-physician#questions-for-the-acoustic-neuroma-surgeon

I just watched these videos
Mark Ruffalo Video Academy Award nominee actor and AN patient, Mark Ruffalo discusses his acoustic neuroma journey.
https://www.anausa.org/resources/videos/mark-ruffalo-story
Acoustic Neuromas: Latest Treatments | Dr. Issac Yang - UCLA Neurosurgery
https://www.youtube.com/watch?v=ZbS4K9ENMAg

I wish you well we both stumbled on an excellent site for information.
June 2016 diagnosed Acoustic Neuroma is 11 x 7 mm
2005 diagnosed Pituitary Adenoma now 16 x 6 x 7 mm

researcher

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #3 on: July 21, 2016, 12:27:53 pm »
It definitely stinks but here is a fun video from YouTube.

My Schwannoma - David Minnick Version Sung to the tune of My Sharona

https://www.youtube.com/watch?v=52yucjy_Q8s

Take care.

WhatnotGems

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #4 on: July 21, 2016, 03:56:18 pm »
researcher I loved it it is a great way to find a way to relax during this time.
June 2016 diagnosed Acoustic Neuroma is 11 x 7 mm
2005 diagnosed Pituitary Adenoma now 16 x 6 x 7 mm

researcher

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #5 on: July 21, 2016, 08:00:41 pm »
I hear you! Well, one ear does!

We all earn our "doctorate" in the study of acoustic neuromas. All this learning about CK, GK, RS, middle fossa, AN vs Vestibular schwannoma, etc., ad nauseum. It's enough to drive you bonkers!

We all need a little levity. Take care of yourself. The folks on this site are such a wealth of knowledge. I have learned so much from them.

stacey4574

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #6 on: July 22, 2016, 11:08:16 am »
Thanks very much for your replies- I will view the video when I'm not at work lol.  I'm starting to feel a little better but then snap back to reality and feel like I shouldn't be in a good/ decent mood.  I'm a wallower I'm afraid :-\
2.5cm AN diagnosed 7-14-16
Currently meeting neurosurgeons to decide on surgery date

Sheba

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #7 on: July 30, 2016, 08:16:53 pm »

Hi Stacey - at 2.5 cm I believe the docs will say it needs treatment soonish rather than wait / watch. 

You will see on this site, people recommend you send your MRI to both House Ear Clinic and USC/ Keck in LA, for a free consult.  They both treat a lot of ANs every week, surgery or radiation;  if you go with microsurgery, you want a surgical team that does it several times a week (not month, not year) and you should find what what approach they recommend (middle fossa, retrosig, translab) and ask them how often they do that approach / what outcome stats they can share. 

I just had mine done at Keck (traveled from Texas) and I am so glad to have it behind me.  I am 1.5 weeks post op and I feel great.  The first several days were hard. I did lose right ear hearing, but I can cope with that.   My balance is coming back quickly, I needed walker first 5 days but am taking long walks outside now, no cane or walker needed.  I still look funny when I stop to look left and right before crossing street.

Anyway - ask lots of questions and take notes. 

This site is an excellent resource.  And join ANA as a member to see lots of videos they post for members only.  Check out a local support meeting if there is one in your area. 

Good luck !  It consumed me for 12 weeks til I got it taken out. 
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

stacey4574

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #8 on: August 31, 2016, 03:15:27 pm »
Thanks very much for your reply-- I'm 2 weeks from surgery today and really starting to freak out at the thought of someone cutting open my had and fishing around in there :o :'(
I just wish everything was over and I was 3 weeks FROM NOW INSTEAD OF 2.
Any advice to a speedy recovery or things you used to aid in your comfort when healing?
2.5cm AN diagnosed 7-14-16
Currently meeting neurosurgeons to decide on surgery date

Greece Lover

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #9 on: August 31, 2016, 04:51:39 pm »
Are you having translab or retrosig? 
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.

tonyc

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #10 on: August 31, 2016, 04:58:59 pm »
Hi Stacey,

Just like many of us in this forum experienced postop, the first few weeks are very tough. We couldn't do a lot of normal things we used to do fairly easily.  It's easy to get tired and frustrated. Be patient and focus on the things to recover. You may seek therapist for help if there are balance issues. Day after day, you will see the improvements and adjust to the new normal. You will get there like many of us do.

Everyone had different symptoms and may take different durations to fully recover. I can share some of my stories. My main challenges in the first few weeks were balance issues, wonky head, fatigue. I knew I need to be very patient to do things step by step. My two most important things were walking and sleeping continuously like many people in the forum suggested, but I never overdid and always followed Doctor's instructions and warnings to avoid CSF leak. Things did improve a lot and I went back to work in the eighth week.
08/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
01/2016,  AN increased to 13mm.
03/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved.
09/2021, MRI showed no regrowth.

DOUG62

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #11 on: September 02, 2016, 08:13:44 pm »

Hi Stacey - at 2.5 cm I believe the docs will say it needs treatment soonish rather than wait / watch. 

You will see on this site, people recommend you send your MRI to both House Ear Clinic and USC/ Keck in LA, for a free consult.  They both treat a lot of ANs every week, surgery or radiation;  if you go with microsurgery, you want a surgical team that does it several times a week (not month, not year) and you should find what what approach they recommend (middle fossa, retrosig, translab) and ask them how often they do that approach / what outcome stats they can share. 

I just had mine done at Keck (traveled from Texas) and I am so glad to have it behind me.  I am 1.5 weeks post op and I feel great.  The first several days were hard. I did lose right ear hearing, but I can cope with that.   My balance is coming back quickly, I needed walker first 5 days but am taking long walks outside now, no cane or walker needed.  I still look funny when I stop to look left and right before crossing street.

Anyway - ask lots of questions and take notes. 

This site is an excellent resource.  And join ANA as a member to see lots of videos they post for members only.  Check out a local support meeting if there is one in your area. 

Good luck !  It consumed me for 12 weeks til I got it taken out.

Did you ever consider treatment at MD Anderson in your home state?
Thanks.

Sheba

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Re: 3 YEARS TINNITUS- MRI shows AN- surgery imminent
« Reply #12 on: September 03, 2016, 04:15:23 pm »
Hi all

@Doug - re: Texas - we do hear a lot of good things about Houston / MD Anderson.  My preference was to go with doctors where I could first read a lot of first-hand stories about the results, there were so many about both House and Keck, so I decided to go to LA.  I did meet with some doctors here in Dallas but one team said they do not do many retrosig surgeries (and everyone said I needed restrosig), and the other team, the neurosurgeon was not in my health plan network - I considered paying extra for out of network but chose LA instead.

@Stacey - re: surgery coming up:  I could not believe how calm I felt as the surgery got close.  I really did trust that I was doing the right thing with the right doctors and I was not nervous.  Hopefully you will find this as well. 

As to what helps with recovery - we found that Peppermint Oil helped reduce nausea - I had problem with that for first ~5 days. 

Another thing that helped is, after we left the hospital, my husband made me nice smoothies every day with fresh fruit, protein powder, added fiber.  was good to have those every day. 

Some people get one or two wedge pillows to help with keeping the head propped up at night.  I had a memory foam pillow plus a large firm down pillow to keep elevated.  It is best to stay propped up and not bend your head down below heart for many weeks - the dura does not heal very fast and you don't want to spring a leak - no bending, no lifting, sleep propped up etc.

I did a huge amount of walking and found it was nice to listen to Audible books or various podcasts on my long walks.  There are many interesting things out there to listen to!  You can set your smart phone to "mono" audio, if you lose one ear like I did. 

At first I needed a chair for the shower - we were still in LA so we bought a folding camping chair and used that in the shower with a towel under its feet to protect the tub.  that worked fine, cost $10.  I did not need it after the first week.

If you color your hair or need a hair cut, best to do that like a week or less before surgery, so it can stay looking good for a while - you won't want anyone touching your head probably for a while.  I am 6 weeks post, and will wait another 6 to get my hair done again.  They don't take off much hair for surgery so don't worry about that, and it's good to have enough to hang down over the scar while it heals, when you go out.

Good Luck !!  Focus on sleeping, relaxing, eating right etc.  Try not to waste energy on anything that is not "urgent" to take care of.  Good to build up lower body strength for stability post op.

My two cents !
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.