Author Topic: Need physcian at UCSF  (Read 5273 times)

Ric

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Need physcian at UCSF
« on: May 09, 2007, 04:32:12 pm »
Hi all,
I have recently been diagnosed with an AN at Stanford.  My AN is 5mm, and my doctor has given me info on microsurgery and radiation.  He does both so is not biased for or against either.  I want to get a second opinion and wonder if anyone knows someone good at UCSF in San Francisco.  Apparently my doctor thinks I could go with either treament, but at this point they both scare the hell out of me!  I am not yet leaning toward one or the other and am hoping a second and third opinion will help.  My Doctor has suggested also Dr. Brackman at the House clinic down in S. CA.  but that is much harder for me to arrange and get to.  Appreciate any leads I can get. 
Thanks
Ric

Mark

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Re: Need physcian at UCSF
« Reply #1 on: May 09, 2007, 10:43:27 pm »
Ric,

I would echo Bruce's comments and I am also curious who you saw at Stanford. Also, an opinion of one doctor at Stanford, is just that, the opinion of one doctor at Stanford. There are a lot of world class docs in the neurosurgery department, but that doesn't mean they all speak with one voice so that it requires going to another facility to get a second opinion. UCSF is certainly also a top 20 facility in neurosurgery, but since Robert Jackler moved over to Stanford, I'm not aware of any physician there that is particularly focused on AN's. I would also follow Bruce's suggestion to set up at appointment with Dr. Steven Chang who does both treatments about equally, although given your small size I would wager he would suggest CK over open surgery. Another suggestion is Larry Shuer who is the department head. I actually went to him about having surgery and his assessment of my situation was that radiosurgery was a better option. HEI is an option if you are committed to surgery, but in my opinion they are not an unbiased place to get balanced views of all options

Good luck

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

gregsh

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Re: Need physcian at UCSF
« Reply #2 on: May 10, 2007, 06:40:25 pm »
Ric,

As always, Bruce's comments are right on the mark.  Today, I spoke on the phone with Dr. Adler at Stanford conerning treatment of my AN.  Dr. Adler invented CK and might be biased towards radiotherapy.  I contacted him based on the information I found on this website.  Surgery scares me and I am leaning towards radiation and I know that Stanford is one of the best places to go.  I live in Florida but am willing to travel to get the best treatment.  You are lucky you have great doctors in your backyard.

If anything, you have plenty of time to come to a decision on your treatment method.  Good luck!!!

Greg

Ric

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Re: Need physcian at UCSF
« Reply #3 on: May 10, 2007, 09:00:58 pm »
Dear Bruce, Mark and Greg,
Thank you for your kind words.  It is good to hear people say that Stanford is one of the best.  I am lucky in that regard.  I am seeing noDr. Robert Jackler at Stanford.  On Tues. I have an appt. with radiologist Dr. Iris Gibbs, and a neurosurgeon whom I can't remember the name, I think adler or chang.  My memory is so bad lately, i thing due to the stress, and that this is always on my mind.  It is tough to concentrate.    Mark, you referred to HEI,  what does that stand for.  I'm so new at this I have not yet got the lingo. :-\  I think after I see the docs at Stanford I'll try UCSF. I guess I have some time to decide, although even though my AN is small, It got diagnosed b/c I woke up one morning with vertually no hearing at all in the right ear.  I had no speech recognition and the right side of my head felt like it was under water, which all lasted 2 weeks.  It cleared up with prednisone, but Dr. Jackler says it is an active tumor that will not get better with time, only worse and since I have tinnitus all the time in that ear, I'm feeling like the wait and see mode is not so great.  Bruce may I ask why you choose to wait, and if you have any symptoms?  The whole quality of life issue is big for me too, as the options are not great.  I hear for a living, and have a almost 4 year old son.  If I can't hear I can't work, no benefits. 

I will look into Dr. Larry Shuer, was he at Stanford or UCSF?  Thank you so much for the referrals.  It is just so helpful to talk with people who are going through this too. :-\.  I would love to hear more about your own personal experiences with your choosen treatments.  Good luck to all of you as well.  Thanks for the support.
Ric

Mark

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Re: Need physcian at UCSF
« Reply #4 on: May 10, 2007, 09:23:45 pm »
Ric,

Well, I'll give myself two points for guessing that your initial consultation was with Jackler, but the misinformation on radiation was just too typical of him from my personal experience when I consulted with him at UCSF 6 years ago. He is a great AN surgeon having done over a 1000 when I saw him and trained at HEI ( House Ear Institute in LA, BTW, sorry for the acronym). I had heard from Chang that he was training on the CK but I guess his surgical bias is still there.

Dr. Shuer is at Stanford and I believe he is still the neurosurgery department chair. As I mentioned before, there are a lot of good neurosurgeons at UCSF, but I'm not aware of any that have a specialty with AN's so you're probably better off at Stanford. Dr. Gibbs was my radiologist when I was treated and she is a very nice and competent doc but she will clearly be explaining the radiosurgery aspect. I would hope that the neurosurgeon in the consult is Steve Chang as he is my neurosurgeon as well and he is pretty active with AN's both in the OR and with CK. I have the utmost respect for Dr. Adler and as Greg noted he is the inventor of the CK. If you knew you wanted GK or CK he is a great guy to have, but since you are still exploring your options, Chang would be the most unbiased.

Your AN is very small and you do have a lot of time to research your options and determine which you are most comfortable with. The small size also increases your probability of a good outcome with either surgery or radiation.

If it is helpful to you, you can read my story on the CK patient support forum at http://www.cyberknifesupport.org/mark.html. Also, I live in the Bay area, over in Danville, so if you want to talk by phone at some point, let me know.

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

OTO

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Re: Need physcian at UCSF
« Reply #5 on: May 11, 2007, 05:35:43 pm »
Ric,
HEI stands for House Ear Institute also known as House Ear Clinic.  It's located in LA.  The Dr. Brackman you mentioned in your first post is with the House Clinic.  The House Clinic is very well known for AN surgery.   If you do an internet search, you can get their address.  Send them a copy of your MRI film or Cd-rom.   Ask for the free phone assessment.   They will call you a couple of days after they review your MRI to give you an opinion.   The hospital where you got your MRI should give you a free copy.   You can take it with your for your second or third opinions.
Since you are in NorCal, rather than going to LA, it might be an option to go to OSHU (Oregon State Health University?).    Members of the forum mention this hospital/medical school too.   They have an internet site with info too.   OTO
   

neal r. lyons

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Re: Need physcian at UCSF
« Reply #6 on: June 01, 2007, 11:33:59 am »
hi ric, it's been a few weeks since your post  perhaps you,ve contacted someone by now   here is a name that was given me for ucfs  i believe he may be the head of neurosurgery at ucsf:  DR. MITCHELL BERGER
                                                                                    UCSF MEDICAL CENTER
                                                                                    400 PARNASUS AVE  (A-808)
                                                                                    SAN FRANCISCO, CA.   94143
 best of luck, neal                                                                                   bergerm@ucsf.edu
AN 2.6X2.0X2.8 (right side)                                           June 22, 2007
House Ear Clinic/St. Vincent's Hospital@ Los Angeles, Ca.

Translabyrinthine(5 1/2 hr.):  Dr.Brackmann-neurotologist    Dr.Schwartz-neurosurgeon    Dr.Kutz-incision@stitches    Dr.Stefan-internist

betty

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Re: Need physcian at UCSF
« Reply #7 on: June 06, 2007, 09:16:33 pm »
Dear Ric,

I see Dr. Pitts at UCSF. He is extremely experienced with ANs and does both radio and micro surgery. You can check out his background on the UCSF website. I had GK at UCSF in 2004. I am due for my 3-year MRI, but as of last year my AN remained the same size after some swelling (happens to about 35% of radio surgery patients) in the first year. I feel great. No side effects. After being so anxious about how to deal with my AN, the GK procedure itself was really no big deal.

Good luck!

Betty

NF-2er

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Re: Need physcian at UCSF
« Reply #8 on: July 18, 2007, 06:02:45 pm »
Hi;

   Maybe email Dr. Jacklar ar Harvard. He just left UCSF several months ago.   -NF-2er

Mark

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Re: Need physcian at UCSF
« Reply #9 on: July 18, 2007, 06:57:52 pm »
You'll have trouble getting a response from Dr. jackler at harvard since hemoved to Stanford from UCSF. Here is a link to his profile with contact info  ;D

http://med.stanford.edu/profiles/neurosurgery/frdActionServlet?choiceId=facProfile&fid=3947

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

NF-2er

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Re: Need physcian at UCSF
« Reply #10 on: July 21, 2007, 06:25:27 pm »
Hi;

   Just to mention my Mayo Clinic Otologist still consults with Dr. Jacklar and has via telephone even while I was in the exam room.
   Dr. Driscoll at Mayo worked with Dr. Jacklar when he was still at UCSF for a full year just on ANs.
   Best wishes!

   NF-2er

 


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