Author Topic: God Bless Roberto Cueva Bill Mastrodimas  (Read 3839 times)

ibfuelish

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God Bless Roberto Cueva Bill Mastrodimas
« on: October 26, 2016, 09:55:47 am »
I am about two months post surgery and quite frankly am having a difficult time taking the time to relate my story of my AN here on this site.  You see, I'm busy doing things.  Which is a whole lot better than what I was thinking my status was going to be after surgery.

I put my surgeons names in the subject matter because, well, this accounting is really about them and I wanted to be sure that anybody who was seeking out info on microsurgery, doctors who do it and want an opinion from an absolute Professional and Godly man, these are the guys to go see.

Dr. Cueva and Dr. Mastrodimas are a team that works in San Diego Kaiser.  Dr. Cueva, I believe does surgery elsewhere as well.

Heres how I came to find these very special doctors...

I am deaf in my left ear due to mumps at age of 8.  I achieved my life long dream of flying commercially at age of 35.  Everybody told me I couldn't do it because of my deaf ear.  At age of 34, I did the research myself and trained and became an Airline Pilot.  Anyways, imagine my dismay when I was diagnosed with an AN in my RIGHT ear (only hearing ear) at the age of 50.  Now I was at a quandary.  After having worked as an Airline Pilot, I can't imagine doing anything else.  So the thought of losing my hearing all together was devastating.  So I did what pilots do... Find all the options.  My Kaiser ENT immediately referred me to Radiosurgery department in San Francisco.  That radio surgeon gave me a 50/50 chance of losing my hearing.  I didn't like that option.

I listened to an interview of Dr. Chang from Stanford.  I corresponded with Dr. Changs office regarding my options.  I went to see Drs. Brackman and Shwartz(sp) at the House Institute.  They reviewed my MRI and discussed with me my options.  I was put through a three phase interview in Redwood City in the Bay Area (CA) with Kaisers Radiosurgeon, Microsurgeons and Head of Neurology.  They spent a Friday afternoon reviewing their notes and came to the conclusion that to make this decision, I needed to remove my dream of flying from the equation and make my decision.  They said watch and wait made the most sense as my tumor was small 10mm and these usually grow slowly.  I didn't like that option either.  I was 50, even a 1 mm growth rate had this tumor at 2.5cm by age 65.  However, something did come out of all those interviews.  One doctor asked if I had been down to San Diego to see Dr. Cueva.  I didn't even know who Dr. Cueva was.  So I asked my Kaiser ENT about him.  He said he would refer me down there and also asked if I had talked to Dr. Balough in Sacramento.  So at this point, I was on information overload.  I had a phone appt with Dr. Balough and he said Dr. Cueva would be the guy who he would let cut into his head.  Dr. Balough was a naval flight surgeon so his opinion weighed in heavily.     I asked him why he would recommend me to Cueva instead of his own team who does these as well.   He indicated that while his team was more than capable, in his opinion when it is the only hearing ear we are talking about, every card needs to be stacked in your favor.  He further explained that Dr. Cueva and Dr. Mastrodimas had been doing these Skull Based surgeries for 25 years... with the same surgical team, who know what the Drs need before they need it.  So I got the hint that the Cueva and Mastrodimas circus was more of a Cirque De Soleil than Ringling Bros.  Thats what I needed... a clear indication of where to get surgery.  However, I still wasn't sold that surgery was my only option.  There had to be another option other than wait and see, radiation and surgery.

I have stacks of paper on research regarding AN's.  Pro Surgery, Pro Radiation, Pro Wait and See, all of them flawed in one way or another.  Then i ran across a small study of NSF-2 in Sweden I think.  This study used a drug call Avastin to treat the NSF-2 tumors.  Why would I look at that research? well I presented much like those patients.  I was already deaf in one ear.  So risking the other hearing ear in surgery wasn't the greatest option.  Avastin is a monoclonal antibody that is designed to reduce or eliminate the tumors recruitment of blood vessels to feed the tumor. 

So, Off to Cueva and Mastrodimas' office I went to interview them and ask them about Avastin.  They spent an hour and a half with me. We bantered back and forth about who I had already been in contact with, what my goal was, what their statistics were in relation to other researchers statistics.  They said one very important thing to me;  They said, based on your tumor, its size, position in the ear canal, symptomology and my overall health, they put my chances of keeping my hearing at pre surgery levels at 70%.  They indicated that the unknown variables are how the tumor presented when they got to it.   Was it on top of, behind or underneath any of the cranial nerves?  That was the unknown.  I said great, I finally have someone who is speaking my language and using not variables from 25 year old research articles, but variables from my own anatomy.  These guys were spot on.  I immediately began to envision these guys doing the surgery.  As a last question, I threw out kinda Columbo like... what about Avastin?  They both looked at each other with a confused look.  Dr. Mastrodimas said, well thats for NF-2 patients (well, actually its developed for breast cancer and colon cancer, but this comment meant he knew the research article I was referring to as it was the only one)... Dr. Cueva said... true, but he essentially is an NSF-2 patient as I had already lost the hearing in my other ear.  They hooked me up with an avastin specialist in LA and that specialist literally said "What could it hurt?"  We give it to people all the time.  Its well tolerated and you could do it for 6 months to a year and see if it shrinks the tumor.  I went back to my Kaiser ENT and discussed avastin with him.  He was less than enthusiastic, but understood my predicament and referred me to an oncologist.  That oncologist basically made me sign my life away because this was an extreme off label use of Avastin and he questioned whether it would do anything other than make me extremely tired.  I said I wanted to try.  So off to the infusion lab I went.  6 months later, I was indeed exhausted, felt like Bilbo in The Hobbit, not enough butter spread across too much bread. (or whatever that quote was).  I was tired, achy and very aware that I couldn't do the avastin for much longer.  Basically, Avastin got me to the point of I didn't care, I needed that tumor out of me and I didn't care if I lost my hearing... which was exactly where I needed to be to pull the trigger on surgery.  But that was very expensive for Kasier.  I had an MRI and the avastin essentially did nothing.  The oncologist explained that the benign AN and the NF-2 AN were two different animals on the microbiological level.

I called Dr. Cueva's office and said schedule it!!!!  I had to wait two months to let the avastin leave my body, so the surgery date was Aug 31, 2016. 

during the two month wait... i reflected on all my research and my discussion the Drs. Cueva and Mastrodimas.  Something started to stick out in my mind.  After my consult on the way out of the office, Dr. Cueva said something strange to me.  I don't think I've ever heard it from a doctor or scientific type.  He said simply, "God Bless You!"  I heard it but didn't even register it until a few days later.  That simple statement began to take on a life of its own.  My wife and I began seeing the "signs".  I had been so engaged in fighting this thing that I hadn't invoked my faith.  I was so busy swinging my sword at almost anything that got in my way, that I missed the signs God had laid out for me.  The doctor in Redwood city that asked if I had seen Dr. Cueva.  He risked his position with his surgery group in referring me there.  We would have never known the name Cueva if it wasn't for him.  The radio surgeon giving me the crappy 50/50 statistic, the redwoods city surgeons saying watch and wait, the sacramento dr. giving a glowing review of Drs. Cueva and My ENT hooking me up with doctors outside my Kaiser region.  All these and tons more signs indicating go to Cueva.  On top of that, Dr. Cueva was a God Fearing Christian.  My wife and I began to relax just a little.  I even had a dream where I was fighting in a sword fight and I was asked to put my sword down.  I did and the person who told me to put my sword down laid waste to my opponent.  (I don't dream like that.... ever!)

So, it was no surprise when on Aug 31, 2016, Dr. Cueva came into the preop to explain the surgery one last time and then asked if he could Pray over me.  Of course, I said.  we closed our eyes and I could hear him begin to choke up.  It took him a good minute to recompose himself and craft a well thought prayer.  I could tell immediately two things.  Dr. Cueva had skin in the game.  He had prayed this prayer about my case before and had come to the conclusion that only God could get us through this.  It was this thought that was my last though before the anesthesia took effect.

I awoke to being transferred from the surgical table to the rolling bed.  I was gangly and dizzy.  Things were echoing, loud and raucous.  BUT!!!!! I could hear!...  now, I'm not a real "PRAISE JESUS" kinda guy.  But after the onslaught of getting to the ICU and fighting for some normalcy in my thought process, I definitely gave the nod to my God and His power.  God was instrumental in my being able to deal with this process.  Thoughts that weren't very self preservation oriented had crept into my mind prior to surgery and God was there for me.

How am I now!!!!  Well, lets just say this.  I woke up today, pissed off.  I'm feeling sorry for myself because 8 weeks post op, I have a pretty regular headache that I am sure is a neuralgia from the facial nerve (no weakness though).  My balance is off, kind of a bouncing vision thing and I'm really quite tired of being stuck at home and not flying.  My audiograms show my hearing at just the level needed to pass a flight physical.  So if I can just get this stupid balance squared away, I can try to get my medical certificate back and get off the disability rolls that have been paying me for the last year.

I hope this helps someone, even if just one person.

Trust in God, He is always there for you.

mcrue

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #1 on: November 01, 2016, 07:48:16 am »
...  now, I'm not a real "PRAISE JESUS" kinda guy.

:)
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

mac84

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #2 on: November 02, 2016, 12:10:27 pm »
Ibfuelish, Well done!  Appreciate the detail.  Glad all went well and good luck on getting back to where you can fly.

A humble surgeon is EXACTLY what you want.

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

alabamajane

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #3 on: November 02, 2016, 05:11:57 pm »
Ibfuelish,
GREAT post ! I am sure that will help people who may be in the decision stage even if they aren't able to use these two doctors. Just hearing your journey and how the depth of your faith walk helped you and your wife is so uplifting. You don't have to be a "praise Jesus " kinda guy to have a deep abiding faith.

Wishes for continued recovery and getting your balance issues under control so you can fly again! ( my Dad was an airline pilot so I know just how important that is to y'all  ;) )

This forum is all about relaying our personal journeys in hopes of helping others.
Peace,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ibfuelish

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #4 on: April 20, 2018, 07:08:15 pm »
Well, I was bored sitting in a hotel.  Nothing on tv.  Decided to Google myself... came across this post and realized it could probably use an update. But before I did so, I had to reread what I said in the first post...

I’m literally ugly crying.  So much for being a mature adult.  Reading that initial post was really tough.  As I read each phase of that journey, I relived it emotionally.  At one point the hair stood up on my forearms, when I read where I transitioned from Avastin thought process  to needing surgery.

So, here I sit bored.  Nothing to do.  I guess it’s a good time to check out the ole Ana USA website.

Here’s an update for you all.

As I left you in the previous post, I was fighting with balance and headache issues.  The tumor had been removed without killing my only hearing ear, but it did take a couple weeks to be able to walk and drive.  I got all that under my belt pretty fast though and was looking forward to getting back on my motorcycle.  My wife of course refused to get on with me and I could not blame her.  So I continued to go to the gym, work on balance exercises and finally enlisted the help of a local balance therapy group for people who have had stroke and traumatic brain injuries.  Lots of “focused head turns”, lots of ball throwing exercises, etc.  all designed to retrain my balance and my eyes to focus and follow things adequately. 

Unfortunately, as I ramped up the physical therapy, my headaches got incrementally worse.  To the point where I had to discontinue PT.  Realizing that I am dealing with this headache 24/7, it was difficult to be productive during the day without pain meds on board.  I was taking 3 doses of 800mg if ibuprofen a day.  Luckily my stomach tolerates that.  Without the meds, my headache was reaching a 6-8/10.  With them I could keep it at a 2/10.  But still there.

Still being on disability and having a good reason, the head ache and balance issues, I settled in to a new normal.  I began to spend more time on the computer and being withdrawn.  One weekend there was a get together with friends which led to my wife and I being asked to donate to an elementary school fund raiser auction.  We were promised if we donated we could come to the auction dinner party  for free.  My wife was ecstatic to be invited and we participated.  We were sitting st a table for 8 and I was introduced to someone’s husband who was a physical therapist.  Everybody asking me about my surgery, etc.   the therapist asked if I knew “Peggy Trueblood”. I said never heard of her.  Evidently she is a Fresno State PT professor who runs the “Balance Lab” at CSUF.  Her lab had all the equipment the college uses to treat and rehab both older patients and athletes who have had a concussion.  I contacted Peggy and enlisted in her program.  See, at this point I was thinking that if I could sharpen up my balance, my headache would go away.

I spent about 6 weeks in this program doing all kinds of balance stuff.  The best task I did was a moving platform that you stood on and used the platform to control an airplane flying through what  looks like a forest.  It was hard work, and I was always exhausted when I finished.  I did real well and started to feel like I could actually justify applying to the FAA for my medical certificate again. 

So, I started to google “FAA Vestibular aviator”. In doing so, I found a dr had posted a 52 page power pint presentation about Vestibular (balance) rehab in the aviator.  The presentation actually was a seminar given to other FAA doctors about what they should be looking for in evaluating the professional aviator presenting with vestibular dysfunction.

I crafted a two page narrative about my situation and sent it to this doctor via email.  I had a response from him in about 24 hours with an attachment that included all the forms and tests required to be sent to him directly as He was the actual FAA doctor who would be reviewing my case.   I gathered the two inch thick stack of documents and FedExed them to him.  Most airman I’ve talked to who deal with the FAA note that it takes 6 weeks for a turn around on simple communications let alone a stack of medical documents so I wasn’t in a hurry.  Plus I had to finish my balance training I had paid for.  Either way, about a week later I emailed the FAA dr again and simply asked what his time line was on his next list of document requests.  He returned the email immediately and said that my preliminary approval for a medical certificate had been approved and that I only needed to go to my local medical examiner and apply formally for my certificate and let him look at me. 

I was dumb founded.  All of a sudden, I was staring at going back to work and I was totally unprepared.  I had not even entertained that this would happen, let alone this quickly.  So I held on to the letter and began wrapping up my PT balance training. 

One Saturday morning about two days after a vigorous training session, I awoke to what felt like a spike through my left shoulder blade and my left arm strength was compromised.  This quickly progressed to narcotics to sleep and an ensuing cervical spine MRI. 

Yup!  I had compromised the c5-6,6-7 cervical discs and one of them had ruptured out and impinged my nerve root at c6-7.  Either the balance training or the gym did it.  Probably the gym.

Either way, I was headed for surgery again.  On January 30, 2018 I had a two level anterior disc replacement.  Look it up on YouTube... ACDR PrestigeLP is the search term.

Fast forward February and March and my neck feels great.  My headaches are reduced to needing daily ibuprofen and nothing more (I had graduated to 3 naproxyns a day).   Once I got things recovered from the neck surgery... I made an appointment with the local FAA medical examiner.  It was a tough case for him, but he issued my certificate and I’ve received my confirmation letter from the FAA in OK that my certificate is valid.


So, here I sit bored... trying to relax in a hotel room... after a decent training day back at my airline!

Thanks for reading to the end!  I hope and pray that you all find this post helpful, encouraging, and most of all I pray that you are all as blessed as I am and that through God, I have been able to weather the storm.


Moderator please consider placing this somewhere visible


ColleenS

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #5 on: August 08, 2018, 03:36:16 pm »
Love reading about your journey! Thanks for sharing.
5/2/17 @ Vanderbilt Translab approach with Drs. Haynes & Chambless
Readmitted on 5/7/17 for CFL, lumbar drain; CFL repair surgery 5/14 & sprung on 5/15
10/18 5 Radiation treatments for tumor regrowth
3/19 Pain, swelling, facial paralysis
5/19 Facial paralysis, numbness

Patti

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #6 on: August 09, 2018, 05:39:01 am »
Love the detailed story!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

Alyssa

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #7 on: November 29, 2018, 10:57:49 pm »
Your experience is wonderful.

jami

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Re: God Bless Roberto Cueva Bill Mastrodimas
« Reply #8 on: November 30, 2018, 09:07:31 pm »
Thank you for sharing! Nice to end a week with a smile.
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

 


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