Author Topic: interviewing doctors  (Read 4877 times)

manderson

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interviewing doctors
« on: August 29, 2006, 05:16:39 pm »
I am heading down to California in 3 weeks to meet with Dr Jackler, Stanford Medical, and Dr Friedman, House Clinic.  My acoustic neroma is 1.6 cm and I have opted to go with micro-surgery because I am 38.

I would like suggestions of questions to ask.  I am trying to compile a list before I go.

Thanks

Maelynn Anderson
right-side AN
surgery 12/6/06
HEI-Dr. Freidman, Dr Hitse;berger

mellowrama

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Re: interviewing doctors
« Reply #1 on: August 29, 2006, 06:34:42 pm »
Hello Maelynn,

I know I saw a list of questions posted somewhere, and I think it was on the ANA archive link somewhere...
http://www.anarchive.org/#Acoustic%20Neuroma%20treatments

I just got back from a "research" trip myself at Barrow Neurological Institute.    I was convinced prior to the visit (had also visited a CK site in OKC) to have CK, then surgery after several docs feedback, and then CK again after more feedback!  I would be open to what options are available and be sure to ask the Doctors your going to see what they think.  By the way, I'm 42 with a AN over 2 cm and plan to have CK, if my decision doesn't change again.  ::)

Melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Mark

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Re: interviewing doctors
« Reply #2 on: August 29, 2006, 06:54:56 pm »
Hi Maelynn,

I'm not sure why you feel being 38 eliminates radiosurgery as an option, but if you're choosing surgery certainly both Jackler and Friedman are excellent choices.

Normally, the first question to ask a surgeon is "how many have you done, but in this case both have done well over a 1000 so I would move to outcomes / risks / recovery time

What is your percentage of useful hearing preservation ( assuming you have it currently)? I would guess they would put it around 30% for a 1.6 cm

What are your statistics on preserving facial nerve function? Focus on function, not whether they cut the nerve. Most facial nerve deficits result from damage to the nerve not having it severed

What is your percentage of tumor regrowth

What risks do I face with surgery and how likely are they (CSF leak is most common)?

Jackler is one of the most published surgeons on AN's and I'm sure he'll give you copies of his studies if you ask, he did for me. Personally I liked him and would have selected him if I hadn't gone the radiosurgery path

Some of the surgery folks can certainly offer other questions from their experience , but those are the big ones to me.

Good luck

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Larry

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Re: interviewing doctors
« Reply #3 on: August 29, 2006, 11:44:59 pm »
Maelynn,

Your dilemna is very common.

At 1.6cm, you may be better off watching and waiting but that depends on the severity of any symptoms.

Surgery does not offer guarantees for succesful outcomes. I had middle fossa almost 4 years ago and suffer debilitating headaches as a result of the surgery. Worse though, it has re-grown. I am now in watch and wait mode and will definitely be going with GK. I can't consider CK because that is not offerred in Sydney Australia.

I have done a lot of research and listened to some very informed posts such as Mark's above and believe that the risks with radiation treatment are less than surgery.

I suggest you get multiple opinions both from a surgery and radiation view. You are still very young for surgery. Unless you have any real symptoms, I would watch and wait for a bit to see if it grows any more.

Questions around post op issues such as dry eye, facial paralysis, headaches, meds to help you cope with the surgery, will you lose all your hearing (translab approach does sacrifice your hearing). Middle fossa and retrisigmold will preserve some hearing.

Do some searches on this type of question on this site because this info has been posted a lot of times.


Larry
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

BevM

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Re: interviewing doctors
« Reply #4 on: August 30, 2006, 07:02:09 am »
Hi Maelynn:

I am on the same journey of treatment or no treatment and so far have talked with  three surgeons, two suggest wait and watch for my 9.5mm tumor and the third feels very optimistic about middle fossa surgery.  My next stop is Stanford with Dr. Adler on 9/19 for CK/GK? consult.
Since you are already scheduled for Stanford, I suggest asking them to compare the two treatments and the risks.  Since we all seem to vary greatly in the symtoms we present with regardless of the size of the tumor and then the reports on symtoms that either remain or are new after treatment, I've decided that those are the questions I am focusing on.  Stanford has a good reputation for both treatment choices so I think you are on the right track.  Since I will be consulting with them also, I will be very interested in what they tell you so hope you will let me know either on the forum on by private e-mail.

Best wishes,
Bev

manderson

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Re: interviewing doctors
« Reply #5 on: August 30, 2006, 11:12:59 am »
I appreciate all the input so far.  My reason(s) for not considering radiation is because of a gut feeling (and prayer) that it is not the right answer for me.  Cancer is not a fear.  I already have moderately severe to severe hearing loss.  Middle fossa surgery is were my gut is telling me to go with the hope of retaining the hearing that I have.  I do not like the thought of having surgery in my 60's if the tumor decided to begin growing again after radiation.

Thanks
Maelynn
right-side AN
surgery 12/6/06
HEI-Dr. Freidman, Dr Hitse;berger

Captain Deb

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Re: interviewing doctors
« Reply #6 on: August 30, 2006, 12:15:20 pm »
Maelynn--I am one of Dr. Friedmans patients and would be happy to talk to you by phone if you'd like. Message me just (click on the  IM icon under my name box) and I'll message you back with my phone #.  HEI is one of the best in the world.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Jim Scott

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Re: interviewing doctors
« Reply #7 on: September 04, 2006, 04:21:49 pm »
Maelynn:

My neurosurgeon (Dr. Issac Goodrich) had over 30 years of experience with AN's and had removed thousands.  He had an excellent reputation with other area surgeons (including my wife's nuerosurgeon, who performed a spinal fusion on her in '05) as well as the hospital nurses I talked to.  He was a past president of the state Medical Society.  So far, so good.  He did not take on everyone who wanted to engage his services, as he is quite busy, another positive 'sign'.  During our first consulation, we immediately 'clicked'.  I felt that Dr. Goodrich was almost eager to 'get at' my large (4.5 cm) AN tumor.   I had absolutely no sense of being 'rushed' or that he had sometjhing more 'important' to do.  He gave us plenty of his time.  Most importantly, Dr. Goodrich listened to my concerns (many) and responded with clarity and a certain level of empathy.  At Dr. Goodrich's urging, due to the size of my AN, I had the 'retrosigmoid' surgery (with 'fractionalized' radiation to follow).  Dr. Goodrich carefully and fully explained every aspect of the surgery, it's risks and benefits as well as describing the recovery process and the 'fractionalized' radiation process that would come later (30 radiation treatments over 30 days - six work weeks).  'Insurance' (as he called it).  He never 'ducked' a straight, difficult question and was very single-minded about successfully removing the tumor as quickly as possible with minimal nerve damage and a rapid recovery.  Dr. Goodrich did a remarkable job.  I was out of the hospital in 5 days with almost no residual complications and I was pretty much back to 'normal' within about 6 weeks.  I feel very blessed.

Experience[/u] is the primary issue you want to address with any neurosurgeon you may be considering.  Many neurosurgeons have a lot of experience with spinal surgery but only see a few AN cases in a year and so, have only limited experience with them, despite otherwise sterling medical credentials.  That (relative) inexperience can cause complications and post-op problems .  You want an 'expert' in AN removals.  For instance, when I asked my NS about possible CSF leaks, he replied that he hadn't had a AN patient with a CSF leak in 'years' - and he fully explained why not (I won't bore you with the details, here).  This was very reassuring and proved to be absolutely true, in my case.  No CSF leaks - and no headaches, either.  I don't believe the surgical method used to remove the tumor (retrosigmoid or otherwise) is quite as important as the skill and experience of the operating surgeon. 

Following the surgeon's experience with Acoustic Neuroma removal surgery, I would want to know exactly what he plans to do, the expected makeup of his surgical team (my NS refused to use any hospital Resident physicians or interns on his surgical team...only 'pros' he fully trusted to know exactly what they were doing, right down to the scrub nurses....and that impressed me).  He didn't feel that his patients were on the operating table for surgical residents or interns to 'learn' on, although her did allow them to observe.  I appreciated that attitude.  I would also expect my neurosurgeon to be very clear about possible nerve damage, surgical complications and how he or she intends to avoid them.  Do not be 'shy'.  These are the kinds of questions I had.  Asking them paid off.  I got a very AN-experienced, caring neurosurgeon who did a remarkable job and I've had an equally remarkable recovery.  In addition, I'm 25 years older than you and had a much larger tumor than yours, Maelynn.   That should be encouraging to you.

AN's are a real minefield but their removal can[/u] have a 'happy ending'.  I trust your case will be one of those, as mine was.

« Last Edit: September 15, 2006, 04:03:25 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Obita

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Re: interviewing doctors
« Reply #8 on: September 04, 2006, 05:52:09 pm »
Hi Maelynn:

I just wanted to say hi and tell you that the majority of people feel 100% better once the decision is made re: treatment.  I have heard many stories like mine.  I can't speak for wait and watch but surgery or radiation can't come soon enough once it is scheduled.  I was at peace with my decision and wanted it over and I never looked back.  I had no anxiety about surgery after it was scheduled other than wishing my surgeons could have done it the next day. 

Best of luck in the comming weeks,  Kathy

ps:  I am deaf in the left but just fine -

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

MLB57

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Re: interviewing doctors
« Reply #9 on: September 09, 2006, 04:25:54 pm »
Hi Marilyn--I know it is a difficuklt choice--most likely the most difficult  (I hope) you will ever have to make in your lifetime regarding your health. I was 50 when, in 2001 I had a 1 cm rt An totally removed (retrosigmoid). Five years later it is re-growing. Whether you haave microsurgery OR radiation there is a 5% re-growth chance.. I now have done hrs of research and will have GK done. If you choose microsurgery and they tell you it will be retrosigmoid ASK about post-op headaches--I had none due to (according to one of my surgeons)  packing the hole and putting the bone flap back. I've read that "bone dust" from drilling the bony canal can cause headaches if they don't suck it all out. Don't mean to scare you, but retrosigmoid approach (from my research) has the most incidence of headaches.
  Now regarding radiation--The Univ of Pittsburgh had the first GK in 1988. They recently got CK, but on the website there is one line that states  they still prefer GK for ANs. I know the GK headframe looks terrible, but GK has the longest track record and I think if it weren't for that headframe anyone doing their research would go for Gamma. This is of course my layperson's opinion. MY neurosurgeon prefers CK due to the frameless technology but the Prof Of Radiation Oncology I met with for a consult said Gamma would be his choice. In fact he wrote on my behalf and helped get my out of state (not out of network) Refferal to Dr Noren at RI Hopsital (NE Gamma KNife) approved. I'm awaiting to be scheduled for the consult.
  I had microsurgery first time as I was relativley young and healthy and just wanted it out of there--I do not regret that decision because if it hadn't re-grownn I'd be okay. I have barely usable hearing in right ear and lop-sided smile, alth so many people never noticed it before I told them.. Another thing you might ask--I do have tight neck muscles on AN surgery side--feels some days like a tight rubber band. I don't take any anti-inflammatories and probably should. Might want to ask about those neck muscles for your knowledge.
  I know we are all scared about having radiation sent into our brains (of all places) but this is not experimental and the incidence of getting cancer is so remote (from what I've read).
  Regarding microsurgery--ask how many they have done and what are the percentages for preserving Facial Nerve and Usable Hearing. House Clinic has the best neurosurgeons for ANs so if you live on the West Coast that's where I'd go!!!
  Whatever choice you make just have the BEST people/facility (most experience) do your treatment, 'cause remember this truly IS brain surgery!!!--Best wishes and keep intouch--Mary from MA...
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

ppearl214

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Re: interviewing doctors
« Reply #10 on: September 09, 2006, 05:21:13 pm »
*waves hi to Mary in MA, local neighbor*

Hi Maelynn,

So many choices, so many options, so many inputs.  All fantastic in their own right.  Me, I'm 45 and choose CK right here in Boston, for my own reasons, just as everyone else here have their reasons.  There are terrifics points here made on all options but please remember one thing.  You decide what you feel is best for you, after all of the research, after all of the conversations.  There are those like me and others that have great outcomes thus far (regardless of what path was chosen) and life is certainly moving along... there are those that have not (again, regardless of which path), so bottom line... nothing is guarenteed in life, as you know. 

All I ask is that you take a deep breath... sit back, weigh out your lifestyle, your current quality of life.  Sit back and ask yourself, out of all of the procedures, which will be most benefical to you and your lifestyle.  Sit back and remind yourself that regardless of treatment choice, know that you chose what was best for you, at the time you made your decision.

You will hear many success stories here (for micro and radio-surgeries) and you will hear not-so-good stories (again, both micro & radio-surgeries). Just know that whatever your decision is.... you are doing what is best for you.

Nothing more for me to add except... as you can see,. you are certainly not alone... hang in there.

Phyllis
« Last Edit: September 09, 2006, 05:22:57 pm by ppearl214 »
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Rex

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Re: interviewing doctors
« Reply #11 on: September 14, 2006, 12:40:12 pm »
Hi Maelyn,

You may have already been to this website, but www.anworld.com has alot of good background info and also has a good list of questions to ask your physician at;

http://www.anworld.com/questions/

I had translab surgery performed by Dr. Jackler and Dr. Harsh in Aug '04.  I am doing well and recommend both of them very highly.  The surgery is typically performed by an ENT and Neurosurgeon so if you have a chance I would suggest seeing both physician to make sure you are comfortable with them.  While you are in the bay area you may also want to visit Dr. Pitts and Cheung at UCSF.  When Dr. Jackler's was at UCSF, Dr. Pitts was his partner on AN surgeries and Dr. Cheung was trained by Dr. Jackler.

Rex