Author Topic: 20mm X 14mm Retrosigmoid surgery Aug 10, 2016 -- my story as of Sept 3, 2016  (Read 8865 times)

highsierratrekker

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On March 16, 2016 I was diagnosed with a “14mm” acoustic neuroma (what the heck is that?) in my left ear. I had been losing my hearing in my left ear and my ENT ordered an MRI "to check for this rare condition" just in case. My ENT called me immediately with the diagnosis (benign? Thank God) and recommended I consult with Dr Wilkinson at House Clinic and Dr Harris at University of California San Diego (UCSD.)

I got in to see Dr Wilkinson in less than 2 weeks and got the rundown: this isn’t urgent, wait and watch, etc. He suggested I go meet with his surgeon partner Dr Schwartz up in Los Angeles which I did. Dr Schwartz is first class and worked patiently to help me understand the situation.

I consulted with Dr Harris on May 4th. He too was patient with me and gave me all the time I needed to answer all my questions. He strongly encouraged me to consider Gamma Knife and recommended I meet with Dr Alksne the gamma knife expert to discuss this option. I also met with Dr Harris’ partner Dr Carter (neuro-surgeon).

I am very blessed to have access to such distinguished AN experts within an hour of my home. All five of these doctors are first class and took all the time I needed to get my questions answered (they even gave me their cell phone numbers just in case.)

I had a follow up MRI in June to check the rate of growth. It measured out at 20mm X 14 mm (I believe the initial 14mm diagnosis was sloppily measured.) It turned out that my tumor was cystic and that the growth rate was “on the high side.” Instead of growing at the “normal” 1mm/year, mine was growing at a rate of 5mm/year. All of my doctors recommended I get it treated soon due to its growth rate.

I decided to go with retrosigmoid surgery because I still had decent hearing that I wanted to try to save (my take on gamma knife is that I would 100% lose my hearing within 2-3 years) and psychologically I wanted the tumor out of my body.

I decided to go with UCSD because I felt a closer personal connection to Dr Carter and Dr Harris. Additionally, UCSD is only 35 minutes from home, which would make it easier on my family to visit.

On August 10 I had my initial surgery, which went well. I woke up the next morning (day 2) feeling great. On the second morning (day 3) I woke up at 3:30am with metallic taste in my mouth: CSF leak. First effort to stop leak was to give me spinal tap to lessen pressure to allow for clotting. Long story short, the CSF draining didn’t work and it was decided that a second surgery would be required to stop the leak. So on day 9, I went back for a second surgery, which fixed the problem. I was discharged on day 13 and came home to recuperate. I’m home now and am released to go back to work on Tuesday, Sept 6. My stitches were removed on Tuesday August 23, 12 days after second surgery.

After reading several accounts in this blog about many issues and struggles other people have experienced, I know that I have been lucky. The only thing that is giving me any trouble is my incision is aching if I try to do too much in a given day. But considering the many other serious possible complications, I have no complaints.

TAKEAWAYS

1)   I am very blessed to have been able to consult with Dr Wilkinson and Dr Schwartz at House Clinic and Dr Harris, Dr Alksne and Dr Carter at UCSD. It’s important to get many perspectives and meet with as many top experts as possible.
2)   Take charge of your case. It was my idea to get a second MRI to gage the growth rate. Had I not done that I would not have learned of my 5mm/year rate which significantly moved up the timing of my course of action.
3)   Learn about CSF leaks. I did not study up prior to my surgery and it was pretty stressful for me. I expected 5 days in the hospital, but ended up with a 13 day hospital stay. There is an 8% chance of a CSF leak. Spinal taps are very serious. Know what you’re getting into before you sign the release to let them do one to you.
4)   Get the latest “up to date” (uptodate.com”) information on vestibular schwannoma. This information is objective, timely and invaluable to your understanding of the latest information regarding vestibular schwannomas. You need to have a connection to get this info. It is not available to us common folk. Ask your doctor to get it for you.
5)   I made a point of NOT reading about everybody’s personal experiences on this blog (or on the web) prior to my surgery. I think that going in with a strong positive attitude is the best approach. Reading about all the varied positive and negative experiences can plant seeds of doubt and stress (this is my personal belief – yours may be different.) Gaining solid advice and information from experts and having a positive attitude was my strategy.
6)   As of right now I have lost most (almost all) of my hearing in my left ear. My facial nerve function is 100% preserved and my balance is better now than before the operation.

Overall? I consider the operation a success and am glad to have it in my rearview mirror. Feel free to ask me any questions and I will try to answer in a timely manner.

[Background: I work as a product manager (marketing) for an aerospace firm at a desk job which is 90% phone and email. I play guitar and sing vocals in a band. We play 3 to 5 gigs a month. My surgery caused me to miss our four August gigs. Our next gig is a 4 hour gig on Sept 25 which I intend to play. We had a 3 hour rehearsal last Tuesday, Aug 30 (which went really well.) I may need to make an accommodation for my new single sided deafness (maybe an in-ear monitor), but otherwise I love playing music and intend to play for as long as I can.]
« Last Edit: September 04, 2016, 09:41:21 am by highsierratrekker »
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

UpstateNY

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thomaslemenager, thanks for sharing your story.  It is always good to see positive outcomes and will certainly be helpful to others in the decision phase.
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

mcrue

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I decided to go with retrosigmoid surgery because I still had decent hearing that I wanted to try to save (my take on gamma knife is that I would 100% lose my hearing within 2-3 years) and psychologically I wanted the tumor out of my body.

Dr. Schwartz said I would likely lose all my hearing within 10 years regardless of which treatment plan I selected. I'm curious, had you known you would be SSD immediately following Retrosigmoid surgery, would you have reconsidered Gamma Knife?

I think the stats are closer to 50% retention after 5 years post-GK, according to Dr. Lunsford. They're even better with smaller tumors under 1.5cm

I'm very fond of Dr. Schwartz, and as you know many of us are impressed with the high volume of AN's successfully treated at the House Clinic with positive outcomes. A lot of people would be envious to have so many AN specialist in their backyard.

It's unfortunate you had to go through "very serious spinal tap" procedure and spend additional weeks in the hospital. CSF leaks certainly aren't fun. The good news is your facial nerve was spared and you're back to playing guitar and singing vocals so soon after major brain surgery.

Best wishes with your recovery. Perhaps we will hear your CD on the radio one day.
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

highsierratrekker

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I knew going in that SSD could and probably would happen immediately. My hearing has been degrading rapidly over the past 6 months. The two biggest factors for my decision to go with retrosigmoid are: 1)wanting this rapidly growing tumor out of my body and  2)my confidence in my Dr Harris/Dr Carter team. In general I am a bit squeamish about radiation (though this feeling may or may not be totally rational.) Dr Harris made a solid pitch for gamma knife and I'm glad he did. His pitch made me research that option thoroughly. I did struggle with my decision, no doubt. But I'm not interested in Monday morning quarterbacking. 100% facial nerve preservation makes my surgery a solid success story.
« Last Edit: September 04, 2016, 05:16:17 pm by highsierratrekker »
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

mcrue

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I knew going in that SSD could and probably would happen immediately. My hearing has been degrading rapidly over the past 6 months. The two biggest factors for my decision to go with retrosigmoid are: 1)wanting this rapidly growing tumor out of my body and  2)my confidence in my Dr Harris/Dr Carter team. In general I am a bit squeamish about radiation (though this feeling may or may not be totally rational.) Dr Harris made a solid pitch for gamma knife and I'm glad he did. His pitch made me research that option thoroughly. I did struggle with my decision, no doubt. But I'm not interested in Monday morning quarterbacking. 100% facial nerve preservation makes my surgery a solid success story.



Thank you for posting your story and answering our questions.

Feel free to ask me any questions and I will try to answer in a timely manner.

I believe you indicated one of the reasons you selected Retrosigmoid surgery instead of Gamma Knife was because, in your words, you wanted to save your hearing.


I decided to go with retrosigmoid surgery because I still had decent hearing that I wanted to try to save (my take on gamma knife is that I would 100% lose my hearing within 2-3 years)

That's why I was so intrigued you selected Retrosigmoid instead of GK, if you knew retro would likely result in immediate SSD, when Dr. Harris shared the facial nerve and hearing stats with GK.

Anyways, thanks again for answering questions. I understand not wanting to Monday morning quarterback, and wanting the tumor out of your head. I'm glad you consider your outcome a success. At the end of the day that's all that really maters. Best wishes.
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

JLR

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Thanks so very much for posting your success story. I appear to have a failed CK after 6 years. And looks like I'm heading into surgery sometime soon. Your story is an inspiration for me. JLR

highsierratrekker

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JLR. You raise another issue that came into play for me (which I forgot to mention in my initial writeup:) A failed GK could result in my needing surgery later. I'm 55 years old. I'll never be younger or stronger than I am now. If I'm going to need surgery, then now is better than later in terms of having the strength to get through it. Believe me, I was second guessing my decision after I got my CSF leak, but all's well that ends well.
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

mandihester

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Thank you for sharing your story!  I am in the decision making process for my AN.  I'm leaning more toward surgery rather than radiation for similar reasons as you did.  My biggest symptom is the dizziness/wonky headed feeling.  I was told at my dr appointment this past Friday that radiation will not help this and likely make it worse.  The surgeon suggested translab which will cut those nerves, prompting the other side of my brain to compensate which will help with this issue, but also leave me deaf on that side.  I am going to inquire about retrosigmoid and my chances of retaining some hearing as long as he thinks it will be functional hearing. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

highsierratrekker

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mandihester: I too suffered that "dizziness/wonky headed feeling". My personal experience after surgery was that my right side (my non-AN side) almost immediately took over and my balance is great. There was one evening about 3-4 days post op when I laid down in my bed I got the spins really bad about 4 times. But other than that I have been solid on my feet. Which really surprised me. I used walking sticks for my first walk around the neighborhood just to be safe, but it became apparent to me very quickly that I did not need them. Yesterday (19 days after my second surgery) I took a 5 mile hike up a dirt road without hiking sticks. I still have a ways to go to get all my stamina back, but I'm pretty happy that I can hike 5 miles.
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

highsierratrekker

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Update: I am now 5 weeks away from surgery number two to fix CSF leak (6 weeks and 1 day from my retrosigmoid surgery.) Had my follow up appointment yesterday and my doctor says I am "out of the woods." My incision is healing up nicely. My balance is pretty good, but not as good as prior to surgery. Metallic taste on the left lower side of my tongue (AN side) comes and goes. Headaches come and go too -- sometimes intense, but most of the time not bad. Walking more and more every day to get my strength back. Got a ways to go but making good progress. Been back at work full time since Sept 6. Have a business trip planned to UK and France middle of October. My band played a 1 1/2 hour gig last Friday. Have another gig planned for Sunday which will be 3 hours long. I suspect I will have issues with my endurance, but am optimistic about the gig. All in all I am very pleased with the outcome so far. I have no complaints, especially after reading about many of the major struggles that some of the other folks in this forum are going through. Got that wonky feeling that so many people mention as well.
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

ccooper

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Re: 20mm X 14mm Retrosigmoid surgery Aug 10, 2016 -- my story as of Sept 3, 2016
« Reply #10 on: September 24, 2016, 08:48:25 pm »
I appreciate reading your positive story. People need to read that life can resume as close as possible to normal. We all make small adjustments, but with a positive attitude, physical activity, and mental stimulation, life turns out to be pretty grand.
37 yr old female
3.4x3x2.6
Retrosigmoid February 2016 at UC Health
Oops they forgot to tell me tumor was left behind
Doubled in size
Re-do Retrosigmoid at House July 2016
SSD, Facial Paralysis but almost recovered

highsierratrekker

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FYI: had my one year MRI follow up yesterday: "Tumor free." This in spite of having to leave some specs of tumor on my facial nerve in the original operation. When the surgeon was trying to remove the last specs of tumor the facial nerve was "chattering" so they had to stop.
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

mandihester

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How's your hearing?
I too have a "sliver" of tumor left on the facial nerve.
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues

highsierratrekker

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Completely lost my hearing on my AN side. Been adjusting to my new audio world where all sounds come from the same direction at all times. Very challenging to converse in a noisy environment like a restaurant, factory, subway or bar. If anybody has any suggestions for coping with SSD I'm "all ears."
March 17, 2016 diagnosed with AN "14mm"
June 7 MRI showed growth to 20X14mm
August 2016 tumor removed via retrosigmoid

mandihester

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I think there is a type of hearing aid you can get to transfer sound to the non hearing side. 
I did retain some hearing and it still seems to be improving but I still struggle to hear well in loud and crowded scenarios. 
AN right side found August 2016- grape size
Retrosigmoid microsurgery October 2016
Before surgery- minor hearing loss, major balance and dizziness issues.
After surgery- severe hearing loss (it fluctuates), no dizziness, minor balance issues