Author Topic: I have done enough research to open my own lab  (Read 4147 times)

ANER

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I have done enough research to open my own lab
« on: November 08, 2015, 11:59:49 am »
After being diagnosed on 10/22 with a 11-8-7mm AN I was/am scared like I am sure all of you were/are. I had been having unilateral ringing in my AN ear and the ENT had scheduled an MRI.  After getting the news I found your website, sent my stuff to Keck and House and scheduled other local (Boston) opinions.    I have already received an opinion from Dr. Freidman out of USC and he recommended a retrosigmoid approach to removing my tumor.  From what I have read he is one of a few of the dream team Dr's out there.  Being from the Massachusetts though, I am also lucky enough to be I the medical center of the universe.  I saw a specialist last Thursday who recommended either watch and wait or Retrosig surgery. The choice is obviously mine. In questioning his experience he doesn't seem to meet my expectations.  States he does 12-15 AN's a year and this was the only Doctor that I didn't schedule but was referred to me by my PCP. He is super nice, compassionate, and even humorous but, I'm just not sold on the experience part.  Since I'm 37 no one seems to be recommending radiation and I don't think I am into that either.  Tomorrow I get to see Dr. McKenna (MEEI) and Thursday Dr. Barker (MGH) who seem to be the east coast dream team. I am actually excited to see what they have to say so my family and I can make a plan already!  One thing this AN has done though is put everything in perspective for me.  Life is still good, and my wife and kids (7 & 4) are great.    :)
Diagnosed 10/22/15  11-8-7mm
Watch and Wait as of 11/9/15
Had a ride in the MRI on 5/2/16 with no new growth.
Riding this Watch and Wait Train until May 2017.

Kerrybr92

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Re: I have done enough research to open my own lab
« Reply #1 on: November 08, 2015, 06:31:26 pm »
I am from New England and I decided to have my surgery done at Mass General.  My doctors were Barker and McKenna.  I had the surgery in November 2011.  I was very happy with both doctors and Mass General.  You may find as I did that Dr. Barker does not ooze charm.  Dr. McKenna is the opposite.  I decided to have surgery with them because of their tremendous experience.  Although I would have loved to have a warm fuzzy feeling from Dr. Barker I realized he did not need to be my best friend.  What he lacks in bedside manner he makes up for in skill.  I strongly recommend them.

The other part I liked about Mass General was it was close to home and that made my followup care easy.

Good luck with your decision.
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

v357139

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Re: I have done enough research to open my own lab
« Reply #2 on: November 21, 2015, 11:53:43 pm »
The ANA recommends going with a team that has substantial experience.  Lots of experience is very important.  Barker and McKenna do have a great name up there.  I'm in NY and I did consult with them.  If you do want both great bedside manner and experience I recommend Dr Slattery and Schwartz at House.  I went there from NY.  Great to talk to, and extensive experience with a great track record.  Good luck and keep us posted.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

ANER

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Re: I have done enough research to open my own lab
« Reply #3 on: November 24, 2015, 09:27:03 pm »
I just got off the phone with Dr. Slattery from house.  SO, so far I have had the local (Dr. Sillman), The West Coast teams Slattery/Schwartz, Friedman/Gionatta as well as the Boston team at MCH McKenna/Barker.  Dr. Slattery is the first one to suggest I get an ABR as that is a good predictor of hearing preservation. Dr. Slattery is also the only one that wants to go the Middle Fossa approach which I also know is the best way for saving hearing.  SO,  I am gonna get on scheduling the ABR right away. Then, if my ABR is Good I think I will probably Fly out to LA to have Dr. Slattery and Dr. Schwartz get rid of this bugger.  If the ABR is bad I mine as well take my chances and go with the MGH Boston Doc's...
Diagnosed 10/22/15  11-8-7mm
Watch and Wait as of 11/9/15
Had a ride in the MRI on 5/2/16 with no new growth.
Riding this Watch and Wait Train until May 2017.

v357139

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Re: I have done enough research to open my own lab
« Reply #4 on: January 05, 2016, 08:19:35 pm »
I had an ABR also.  In my case there was no chance.  How did your's go?
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

ANER

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Re: I have done enough research to open my own lab
« Reply #5 on: January 09, 2016, 07:44:24 am »
I have yet to receive my ABR results.  Although, the day I went, I had two Dr's who concurred that I do have an ABR and I would be a candidate for an attempt at hearing preservation.  I have been meaning to call the office but have just been to busy. I will call on Monday though and keep you updated.  I am interested in the results!
Diagnosed 10/22/15  11-8-7mm
Watch and Wait as of 11/9/15
Had a ride in the MRI on 5/2/16 with no new growth.
Riding this Watch and Wait Train until May 2017.

mcrue

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Re: I have done enough research to open my own lab
« Reply #6 on: January 10, 2016, 05:29:12 am »
The ANA recommends going with a team that has substantial experience.  Lots of experience is very important.  Barker and McKenna do have a great name up there.  I'm in NY and I did consult with them.  If you do want both great bedside manner and experience I recommend Dr Slattery and Schwartz at House.  I went there from NY.  Great to talk to, and extensive experience with a great track record.  Good luck and keep us posted.

Dr. Schwartz and Dr. Slattery are the team I was going to chose if I didn't opt for radiation. Glad you had a most excellent outcome.
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

michellef08

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Re: I have done enough research to open my own lab
« Reply #7 on: January 11, 2016, 10:42:50 am »
ANER,
I highly recommend Middle Fossa with Dr. Schwartz! He is a genius! He (along with Dr. Friedman) preserved my hearing, and I didn't have a single balance or facial issue!

Dr. Schwartz recommended I do an ABR, VNG test and a closer MRI the day before my surgery. Based on those results they decided I was a candidate  for Middle Fossa (instead of Retro Sigmoid). That made me feel confident that they wanted to make sure they knew exactly where my tumor was, and what it had affected before selecting a surgery approach. 

Obviously, my results aren't typical (Dr. Schwartz even walked out of my post-op appointment saying that very line), but it can happen!
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

v357139

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Re: I have done enough research to open my own lab
« Reply #8 on: January 11, 2016, 06:52:17 pm »
I can also attest that Dr Schwartz and Slattery are top notch.  I had a large one and a great result.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

 


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