Author Topic: Surgery December 20th at USC-KECK by Friedman/Giannotta  (Read 2483 times)

bird33

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Surgery December 20th at USC-KECK by Friedman/Giannotta
« on: January 04, 2017, 06:56:15 pm »
I recently had surgery on December 20th at USC-Keck with Drs. Friedman and Giannotta.   I want to share my experience as this site has been very helpful.  A little background leading up to my surgical decision and my recovery to date (has been 2 weeks and will continue to update).

I am a physician (surgeon) practicing in Florida.   When I was diagnosed over two months ago presenting with primarily disequilibrium symptoms, I was initially relieved that I had a serious but curable or manageable problem.  I had a 1.2cm vestibular schwannoma that was only mildly affecting my hearing, and having mild and inconsistent symptoms.  I am 40 (which apparently I was told is not that young :)  As many on this forum know, with this size tumor I had all three options available (microsurgery, SRS, or watch and wait).   Great to have options, but did not feel like it once I starting getting opinions!   

The good and bad about being a physician is within two weeks I had gathered opinions about my case from many experts in this field, both radiation oncologists and surgeons alike.  That's good but also bad because I became overwhelmed.  I was having more stress about the decision than the problem itself!   I was told microsurgery has risks where radiation, although does not remove the tumor, could control it and was less risk and invasion to my life.  Being a surgeon, people were acutely concerned about my time off from surgery, and that radiation would allow me practically to not miss any work.  Ultimately I told everyone all I cared about what was best for me long term. 

Depending where you live, Microsurgery is done so infrequently and on the largest of tumors that do not respond to SRS, or salvage operations after failed SRS.  These are the more complex cases and they  are often performed by those locally that do not have extensive  experience.  Clearly this scenario can lead to a higher complication rate (facial nerve injury, longer surgery times, and longer recovery times).  These outcomes further the excitement for SRS.  I am not bemoaning SRS, as it is extremely important for the management of this tumor in many situations.  And yes, being a surgeon, despite the encouraging 10 year data of SRS, I wanted it out so I can "move on".   Ultimately, I told myself that a successful surgery was best for me.  So, like all of us, I wanted to find the best place for that successful outcome.  Knowing my personality, after SRS I would hate the constant monitoring and concern that any new symptoms or having a bad day would scare me that i would need salvage surgery.  And although not evidence based, I was concerned about irradiating my "young" brain as we on this forum should all have a normal life expectancy. That means potentially for me 40+ years after radiation. 

Now about the surgery.  If you want a hip or a knee replacement, chances are someone within 30 miles has a high volume and excellent multidisciplinary approach with reproducible outcomes.  For rare problems and shrinking surgical volumes secondary to the benefits of SRS, that is not the case for vestibular schwannomas (Or acoustic neuroma).   I cannot make this point strongly enough.   If you are able, you really need to find a team that has high volumes and a consistent team.  Let me expound a bit on this point.

A team commonly is an ENT specialist (Neurotologist) and Neurosurgeon.  These two surgeons, with ancillary support is crucial.  Should be a systematic approach with vestibular therapists and a hospital used to treating this problem.  Volume cures a lot of problems, and when there is volume everyone gets better and the outcomes become more predictable.  Also, ideally the surgeons should work together consistently.  There are efficiencies gained in and out of the OR.  If your surgeon does 3 of these a year, I would be surprised if they can get these kinds of efficiencies.  I am speaking not based on fact, but I suspect if you want all surgical options available to you, you may need both surgeons on the team.  Based on the size and location of the tumor and your hearing impairment, your surgical options may change.  To have all three primary options available to you (retrosig, translab, and middle fossa), you may need both on the team as some approaches are more familiar to some disciplines. 

My experience follows.   Surgery on December 20th by Friedman/Giannotta.  I met them the day before, but I spoke extensively to their coordinator Kris who could not be more amazing and accessible.  I also spoke to Dr. Friedman as well.  I left the hospital December 22nd.  My surgery was around 3 hours which, I believe is a little shorter than average but tend to be 3-4 hours almost every time.  The shorter anesthesia time reflects time savings that can only be found by experience and consistent personnel.   The surgeons were great.  I could not be more comfortable with my visits with Dr. Friedman and Giannotta.  They are both incredible. 

First night in the neurosurgical-ICU sucked.  No other way to put it.  Trouble getting comfortable ( I am a big guy too which didn't help!) with headache issues.  Next day I was walking the halls and went to the floor (so much better there).  Then left the day after.   Stuck around for my postop appt and then flew home.  I was able to experience LA during my time there as I was walking very well.   Currently 14 days out and I am getting my energy back (walked 4 miles today!) and still have a very mild headache but managed by tylenol every 12 hours.  Oh, and by the way, as a bonus I kept my HEARING. 

So, basically not to jinx myself but I am having the recovery we all wish to have.  Any questions please reach out.  I will say it one last time.   If you are considering surgery or want an opinion and you are able to travel, please go to one of  the very few high volume centers around the country.  Consults can be done remotely (surgery not so much :)  I am clearly biased, but I cannot imagine you will find the consistency of outcomes like you will find at USC KECK with Friedman/Giannotta.  They really care too and was so great to see.  The day of my surgery they did 3 and when Friedman  found out they preserved my hearing I can tell you I saw the happiness in his eyes.  I will be a better doctor based on what I observed with Drs. Friedman and Giannotta.   

Questions I would ask your prospective surgeon(s) that were important to me being a surgeon.
1)complication rates
2)what do YOU define as a successful outcome
3)Anticipated OR time (this you will find will vary significantly as one surgeon told me 8-10 hours where Dr. Friedman told me 3.5 hours.  Almost hard to believe but this kind of surgery is like that)
4)Do you guys work together all the time (same surgeons or do they alternate)
5) anticipated Length of Stay (mine was 3-4 days although I was able to walk sooner than average so left in 2)
6)Do you do all three primary approaches? (this could be important depending on your particular case.  they need to have both experience and the ability to do all three to answer this question)
7)Why do you think the approach you recommend is best for my particular case?

Good luck to everyone and I will update you as I progress.  Sorry for the long post!   
 

CHD63

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #1 on: January 05, 2017, 06:14:15 am »
Hi bird33 .....

Thank you for sharing your experience and thoughts with this forum.  Most of the people who come to this discussion forum for the first time, are at least rattled with their diagnosis or at worst, terrified.  You outlined very well how you made your decision.

As you say, high volume AN surgeons normally have the best outcomes.  And, as you pointed out, this was the right decision for you, but each of us must make our own decisions.

Thanks for the objective comments on your experience.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jet747

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #2 on: January 05, 2017, 06:34:02 am »
Bird33,

Great post good luck in your recovery!

I'm approaching 2 years from my RS surgery and had a great/speedy recovery as well.  I need to verify with my wife but I think I was under for no more than 4 hours.  Besides having a great surgeon, I do think the limited time under anesthesia helped facilitate a quick recovery.

Best wishes to you in 2017!
Jet
RS Surgery May 2015

GK Radiation October 2015

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

Enri

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #3 on: January 06, 2017, 03:05:13 pm »
Thanks for sharing.  I had surgery Nov 2nd.  I am keeping my fingers crossed but so far  I am pleased with the results.  I do wish you the best for your recovery and my very best for this new year.


Tobeycat1134

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #4 on: January 11, 2017, 04:12:53 pm »
It is so wonderful to finally read a positive result.  I just found out December 29th and have been reading everything I can find to try to make a decision.  My greatest fear is making the wrong decision.
5mm x 12mm X 5mm
Dia. 12/29/2016

Tobeycat1134

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #5 on: January 12, 2017, 08:53:18 am »
Which of the three surgeries did you have?
5mm x 12mm X 5mm
Dia. 12/29/2016

bird33

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #6 on: January 12, 2017, 10:44:09 am »
I had a retrosigmoid approach.  The three primary approaches to address  this tumor surgically are retrosigmoid, middle fossa, and translabyrinthine.   The first two can be used for hearing preservation cases, whereas the last approach is used when hearing loss is already significant or the likelihood of preservation is so low (usually larger tumors).   For hearing preservation cases, whether to use Retrosigmoid or Middle Fossa usually depends on location (how far does it extend into the brain or CPA), size of tumor, and surgeon comfort.   For my situation, I had good hearing preoperatively and a somewhat smaller tumor (1.2 cm) so hearing preservation was attempted (and fortunately for me successful).  Why the team used Retrosigmoid, instead of middle fossa, was because my tumor extended well into the CPA or brain stem, so they opted for that approach.  I am simplifying this algorithm somewhat (this is the extent of my knowledge!).  This is why going to an experienced team can guide this decision.

To clarify, when I mentioned that you had all three options available, I was not referring to the surgical approach, but to the treatment options of 1)microsurgery 2)SRS (radisurgery/therapy) 3) Watch and Wait.

I suspect with your size tumor and moderate severe hearing loss (your description) they surgically would approach your tumor with translab if your hearing is not very good (it will not improve with surgery), or if hearing preservation of your current hearing is to be preserved with either Middle Fossa or Retrosigmoid. But as ANSydney mentioned, it depends somewhat on whether your tumor is Intrameatal or extends significantly into the CPA.

Additionally, I know you have strong feelings about SRS because of your history, but I suspect many will advise against surgery with all your factors of moderate severe hearing loss, small tumor, and age (52 is not old!)    But in the end it will come down to what is best for you, and you should have a successful outcome regardless.  But I do want to mention that hearing loss that you have now is very unlikely to improve no matter what you do.  But as we all know on this forum that is a very mild problem in the spectrum of life!!

Hope that clarifies somewhat!!   

bird33

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #7 on: January 23, 2017, 09:33:42 pm »
Update:

5 weeks postop tomorrow.  Doing well.  I am back to work and I just ran on the treadmill.  I am not yet back to my pre-surgery stamina, of course, but I am excited that I am seeing normalcy again in my life. 

The mild headaches I had the first couple weeks are gone and I no longer need tylenol.  The majority of the day I do not even notice I had surgery.  The mornings I have some residual fatigue that improves within an hour of walking around and having a cup of coffee :)

I will keep updating my progress but could not be more happy to date.  Hopefully for those pending surgery I can be a reminder that great outcomes are possible with a little bit of luck and a great surgical team!

Any questions please do not hesitate to ask.

Regards,
Bird33

ColleenH

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #8 on: April 08, 2017, 07:57:45 am »
Thanks so much for sharing your journey. I am awaiting surgery and of course nervous but wanting to get the beast out and resume my life. Actually, I have not stopped anything really - my symptoms are mild compared to so many here, mainly loss of hearing and mild balance issues. I also run so I am glad to see you have resumed running fairly quickly. I was worried about how long before I could run - mainly because of the complication of CSF leak. I am traveling for my surgery - I completely agree about going to a high volume center. Hope your life is back to normal by now.  :)
 
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

Bee123

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #9 on: April 08, 2017, 08:29:11 am »
Thanks for sharing , it means alot .
Sudden Hearing loss in left ear in 2/8/16
MRI Contrast :3/9/16
AN diagnosed : 3/14/16
Right now 11m*5mm*6mm

bird33

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #10 on: April 10, 2017, 01:39:48 pm »
ColleenH,

good luck with the upcoming surgery.  Yes, I am very fortunate to have had a great recovery and no issues. I am 3 1/2 months postop and am fully back to my normal, working hard, being a husband/father, and able to resume my normal activity level of running, etc.

Life is busy as ever, and although my wife claims I drink more coffee than I used to (I find that debatable!) I am happy to report that everything is great!

Looking forward to you recovering.  Your doctor will let you know about lifting precautions, etc, with your concern for CSF leaks.  It is likely not the same for every patient, but for me I was able to run within a few weeks of surgery.  I did not lift heavy weights for 2 months.  Not sure that was told to me, but thought it was common sense :)

Keep us updated

Best of luck,


ColleenH

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #11 on: April 12, 2017, 03:49:18 pm »
Thanks so much Bird33. Because you are a doctor did that alleviate your pre surgery jitters? OR make them worse? I am so ready to be on the road to recovery!
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

bird33

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #12 on: April 12, 2017, 08:53:10 pm »
Thats a great question!   I think because I am a surgeon I am a control freak by nature.  So, like all patients undergoing surgery, it is scary not having control during surgery.  But I kept reminding myself I did have control.  I chose the surgical team and did my homework.  I knew I was confident in my decision, and let things happen the way they were meant to be. 

Gave me new perspective about being a surgeon as well.  Operating is my routine, but it is not for those that have trusted me to do the best job I can and to get the desirable outcome.  I have a new level of empathy in my own profession, a result of this experience.  Just wish it was a hernia repair or something easier :)


tinkin3

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Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #13 on: May 19, 2017, 12:19:42 pm »
Thank you so much for posting about your journey!  I am scheduled to have surgery with Friedman on August 1, and am traveling from the DC area.  After speaking with Dr. Friedman, I cannot imagine anyone else doing the surgery (my AN is just a little over 1 cm, but growing at what I am told is a fast rate (4 mm in 4 months!).  What he told me was so positive as compared to the doom and gloom I was getting from the local surgeon.  It's great to read these positive stories, and I'm glad you had such a great outcome!

ColleenH

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  • Do not fear, for I am with you. Isaiah 41:10
Re: Surgery December 20th at USC-KECK by Friedman/Giannotta
« Reply #14 on: May 22, 2017, 06:33:08 pm »
Thats a great question!   I think because I am a surgeon I am a control freak by nature.  So, like all patients undergoing surgery, it is scary not having control during surgery.  But I kept reminding myself I did have control.  I chose the surgical team and did my homework.  I knew I was confident in my decision, and let things happen the way they were meant to be. 

Gave me new perspective about being a surgeon as well.  Operating is my routine, but it is not for those that have trusted me to do the best job I can and to get the desirable outcome.  I have a new level of empathy in my own profession, a result of this experience.  Just wish it was a hernia repair or something easier :)

Thanks for your honesty! I think it is always good for us to have more empathy for others in all we do. I am recovering slowly since I ended up having 3 surgeries. But each day I am getting stronger. Your strides give me much to look forward to.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

 


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