Author Topic: Update: 8 weeks post-retrosigmoid  (Read 7038 times)

Gr8fulDad

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Update: 8 weeks post-retrosigmoid
« on: July 21, 2016, 12:35:11 pm »
Hi all,

I had retrosigmoid surgery 8 weeks ago today to remove my acoustic neuroma.  I will preface my update by saying that after I was diagnosed, I went a little nuts doing research and reading about other people's experiences.  In doing so, I got caught up in all the scary risks and focused on these risks, the possibility of a poor outcome and everything that was negative.  I watched all kinds of testimonials on youtube from people who had complications and I read all kinds of stories from people that suffered from complications and it really freaked me out.  I guess maybe it's just a human failing to worry and focus on the negative.  When you're about to go through a major operation that entails very real risks, it's hard to stay positive, especially with all the scary information that's out there.

The reason that I'm providing an update is so that others out there with an AN or awaiting AN surgery hear good stories with positive outcomes too.  The mathematical chances of a positive outcome is much greater than a poor outcome and I encourage you to try and focus on the positive.

I had a pretty large tumor (4.2x3.5x3.7).  To make matters worse, the tumor I had was highly cystic.  It's rare to have as cystic a tumor as mine and it makes the surgery a little more complicated with greater  chances of risk.   Today, 8 weeks post surgery, I feel pretty much back to baseline.  I'm back working and feel settled into my old pre-op routine.  I've even started back at Karate.  I have no facial weakness.  Not only did I retain hearing in my right ear, it's actually better than it was before surgery.  Before surgery, I couldn't use the phone with my right ear and now I can with ease.  While I did have headaches for a few weeks after surgery, the headaches are now gone.  I have no balance issues and no dizziness or vertigo.  I get lightheaded if I stand-up too quickly, but that's about it.  I'm riding my bike without problems and I even climbed a ladder without incident to get some house chores done.  Life is normal again.

When I woke up from surgery, I was expecting that I would  be throwing my guts up because that's what I had heard others say.  However, I wasn't nauseous at all.  In fact, one of the first things I asked for when I woke up was for my wife to go downstairs and get me a slice of pizza.  I woke up absolutely starving.  I mean forget the jello and get me a bone-in Rib Eye.  Within a few hours of waking up, I was out of bed and went for a little walk through the ICU and had the catheter removed.  My surgery was on a Thursday and they sent me home from the hospital on Monday.  I did end up back in the hospital about a week later with a CSF leak.  It was a tiny leak out of my incision and they tried seeing if glue would work to avoid needing a lumbar drain.  I had to spend the next 24 hours lying completely flat.  That was incredibly uncomfortable.  The glue worked and no lumbar drain was required.

There was definitely a recovery process.  I think the worst part was the pain in my neck and upper back.  As part of retrosigmoid surgery, they have to cut through your neck muscles.  If you're a sturdy and solid person like me, cutting through your neck muscles is not the most pleasant experience.  It made sleeping very difficult and I rested a lot with ice against the back of my neck.    The headaches certainly weren't fun, but they were completely manageable with Tylenol.  Sneezing really sucked....it felt like my brain was going to shoot out of my head through my eye sockets. My surgery lasted about 14 hours and my side was all sore and bruised from lying in the park bench position for that long. It was really uncomfortable and quite painful.  It also made sleeping really difficult because I couldn't lie on my side.  The steroids they give you for brain swelling can also cause problems sleeping  - so between my head, my side and the steroids I was really having trouble getting any sleep.

The great thing is that it all went away.  It took some time and you really need to have patience, but it all went away.  There were times that it was all very frustrating, but everyday got just a little bit better. Recovering from AN surgery isn't something I'd wish on anyone, but it really wasn't horrific or terrible.  I certainly wouldn't classify it as fun, but it's totally manageable.

Today, 8 weeks later, I'm really feeling great.  As I mentioned above, I have no deficits from the surgery and I didn't experience any long lasting complications.  I'm back to my normal routine and I'm enjoying all that life has to offer.  Now that I've been given a second lease on life, I intend to enjoy every moment and not take so much fro granted.  I found that there was so much negativity out in the internet and the stories of risks and complications really scared the heck out of me before the surgery.  I really hope that those of you who are reading this and facing treatment of their AN are feeling just a little less scared from reading about my positive outcome and success story.  There are lots of stories like mine and there are lots of people who had AN surgery that went back to their normal lives after surgery like nothing happened.  There are more people out there that have had positive outcomes than negative outcomes.  The only help or advice that I can give is to just stay positive and know there are thousands of AN patients that ended up with really positive outcomes.

Good luck to everyone!!

David

 
Diagnosed March, 2016 with a 4.2 cm AN

Surgery (Retrosigmoid) May 26, 2016 by Dr. Gelareh Zadeh at Toronto Western Hospital.  Hearing and facial function in tact.  Home 4 days later.
Bed of tumour left on the 7th and 9th cranial nerve but watch and wait for now.

Greece Lover

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Re: Update: 8 weeks post-retrosigmoid
« Reply #1 on: July 21, 2016, 01:29:12 pm »
So glad for this update, and so glad you're doing well!  I'm at about 10 weeks post-op, and have many similar thoughts.  I went for a long bike ride today in some ungodly heat, so I must be doing OK!
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.

ANGuy

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Re: Update: 8 weeks post-retrosigmoid
« Reply #2 on: July 21, 2016, 04:16:06 pm »
Your entire post is a public service.  From a WW'er who will very likely get surgery if it grows, thank you from the bottom of my heart!
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.

WhatnotGems

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Re: Update: 8 weeks post-retrosigmoid
« Reply #3 on: July 21, 2016, 04:35:35 pm »
Thank you. I will find out next month August 12, what we will do. I am finally able to remove my walking cast for short periods every day. Yes I had to wait longer, but with my reading walking is a great part of the recovery, limping with a cast is not.
Your post has lifted my spirits, just the comment that you can use a phone is great.
Things I have accomplished while waiting, home repairs are done I will not have to worry about them.
Hearing test, eye exam are finished
Teeth cleaning and blood work are next.
Hopefully, our daughter can come for my doctors visit and perhaps my birthday a few days later.

Again thank you. To many people only post when they have scary things happen, and the ones with no problems are able to blend back into their lives faster.
June 2016 diagnosed Acoustic Neuroma is 11 x 7 mm
2005 diagnosed Pituitary Adenoma now 16 x 6 x 7 mm

InnerGrace

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Re: Update: 8 weeks post-retrosigmoid
« Reply #4 on: July 21, 2016, 07:14:23 pm »
Bless you, David.... good to hear from you and that you are doing very well... :)  Your concert is soon, if I remember correctly???
Diagnosed 4/28/2016
2.4 x 2.0 x 1.9 cm AN
Symptoms:  Mild Hearing Loss, Mild Tinnitus, Mild Balance Problems, Possible Vision Issues, Some Vertigo.
Retromastoid Craniectomy 05/30/2016. UPMC Presby
Dr's Gardner and Hirsch
Left SSD. HB 6 Facial Paralysis.  Waiting for the nerves to wake up...

researcher

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Re: Update: 8 weeks post-retrosigmoid
« Reply #5 on: July 21, 2016, 08:03:37 pm »
Excellent news!! So happy for you!!

mac84

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Re: Update: 8 weeks post-retrosigmoid
« Reply #6 on: July 22, 2016, 07:05:33 am »
Thanks for the update David....I thought I was firmly in the GK camp if/when I have to make a move, precisely because I've seen all of the bad stuff out there. Thanks for letting us know about your positive experience. I hope all continues to go so well!

Cary
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

Jet747

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Re: Update: 8 weeks post-retrosigmoid
« Reply #7 on: July 23, 2016, 11:31:25 am »
David,

Glad everything has worked out so well for you too!!!

I echo your experience and wish there were a few more positive stories to peruse.

Take care and as life goes on please post an update.

Best to you!!!
Jet747
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

UpstateNY

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Re: Update: 8 weeks post-retrosigmoid
« Reply #8 on: July 23, 2016, 11:21:28 pm »
David,

Thanks for sharing your story.  It is very good to see you have had successful results as well, especially given the larger size of your tumor.  I wish you continued success.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

Gr8fulDad

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Re: Update: 8 weeks post-retrosigmoid
« Reply #9 on: July 25, 2016, 03:45:09 pm »
Hi everyone!

Thanks so much for all your kind words. 

My concert was on July 7 and yes I did make it!!

I forgot to mention in my original post that my tinnitus is also gone following my surgery.  Right after my surgery, the tinnitus was roaring.  However, after a few weeks it was gone and it's never come back.  I used to stand out on a busy city street as the noise from the traffic would provide relief.  I didn't hear the ring over the traffic.  Now it's completely gone.   

I'm glad what I wrote was well received and lifted some of your spirits and made some of you feel a little more positive about things.  I really hope more people out there share their success stories.  I remember how down I was when I was first diagnosed and the more I read, the worse I felt.  If it wasn't for the support of my wife, I wouldn't have gotten out of bed in the morning. For me, it was a really hard thing to go through psychologically and mentally. Jet 747's success story was real inspiration for me and it really helped to read about success stories of others.  Thank you, Jet!!

The acoustic neuroma association of Canada holds support group meetings in Toronto once every two months.  The next meeting is tomorrow and I will be going to share my story with other AN patients and their families.  The group helped me a lot and hopefully I can pay it forward. If there are any Torontonians out there reading this, I highly recommend attending.  If you contact ANAC through their website, they will give you the details of the meetings http://www.anac.ca/support-groups-0 
Diagnosed March, 2016 with a 4.2 cm AN

Surgery (Retrosigmoid) May 26, 2016 by Dr. Gelareh Zadeh at Toronto Western Hospital.  Hearing and facial function in tact.  Home 4 days later.
Bed of tumour left on the 7th and 9th cranial nerve but watch and wait for now.

rm516

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Re: Update: 8 weeks post-retrosigmoid
« Reply #10 on: July 25, 2016, 10:12:02 pm »
David..congratulations on your remarkable recovery. I thought I held the record for "retained hearing" with 3.5 cm AN (non-cystic). Mine's success story is similar to yours except for wanting a slice of pizza in ICU (instead, I just kept throwing up till morning) and didn't have any CFS leak ! What next ?? I had my 2 years MRI on Feb. 2016 and there was a pleasant surprise as Radiological report read:  Further interval decrease in size the residual right cerebellopontine angle vestibular schwannoma. The patient is again noted to be status post right retromastoid craniotomy with for debulking of a vestibular schwannoma. There is residual tumor within the cerebellopontine angle that measures 1.6 x 1.3 cm x 1.2, decreased from prior where it measured 1.9 x 1.4 cm x 1.5."
Please keep inspiring more AN friends for a similar positive experience! :)
« Last Edit: July 25, 2016, 10:13:35 pm by rm516 »
Diagnosed AN in 2008,  3.2 cm CPA round, retrosigmoid surgery performed by Dr. M. Sisti, Columbia Pres.Hospital  NY, in Jan 2013, After surgery no major issues, Hearing retained (>50% ). However, 2 YRs post surgery MRI shows a further decrease in the size of residual AN! No GK or any therapy needed.

JLR

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Re: Update: 8 weeks post-retrosigmoid
« Reply #11 on: September 29, 2016, 04:50:43 pm »
Dear David wow do I feel less nervous!  Scheduled for surgery Nov 1 and yes there are a lot of scary stories out there but there's also a few post surgery ones like yours that are very successful and very matter of fact. I feel relaxed and will remain positive and confident for a successful surgery with very little fan fare. Thanks again, Joan

Bomberman

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Re: Update: 8 weeks post-retrosigmoid
« Reply #12 on: September 30, 2016, 09:43:16 am »
David! Congratulations! You made it.

I am considering doing surgery. I'm hearing a bunch of people with good outcomes. Would you be able to tell me your age, your neurosurgeon, and the procedure you chose?

Thank you.

Bomberman

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Re: Update: 8 weeks post-retrosigmoid
« Reply #13 on: October 02, 2016, 05:10:40 pm »
David also... I heard that retro with large tumors >3cm have 1% chance to save hearing.

Can you tell me what do you think attributed to your hearing being saved?

Thank you!