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Joined: 9/16/2009
Posts: 4
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After 4 years of going to various doctors and specialist trying to find the cause of my hearing loss and ringing in my left ear, I went to the California Ear Institute. With a MRI, I was recently diagnosed with a 1.5cm Acoustic Neuroma. I am a 50 year old male living in the San Francisco Bay Area. I have access to some great medical facilities, and have been steered toward Stanford and UCSF. The California Ear Institute recommended that I have Middle Fossa approach surgery at Stanford Medical Center. After consulting with my primary physican, she referred my to UCSF. After much research , I am considering fractionated stereo tactic radiotherapy. I have no balance issues, but have tinnutis and some loss of hearing. Although my physician considers my hearing still good. I am hopeful to retain the hearing that I have at this point. Microsurgery seems to have too many drawbacks. I have been seen by Dr. McDermott and Lustig at UCSF. At this point they have recommended to wait six months and follow up with a MRI . I hope that there is no further growth in the meantime. Further loss of hearing is a concern to me as well. My questions are:
. Are there any additional specialist in this area that can be recommended?
What are your opinions on the various forms of treatment ( surgery, microsurgery, cyberknife, gamma knife, proton therapy)?
Any and all information is greatly appreciated
Sergio
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Joined: 10/10/2008
Posts: 81
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Hi Sergio and welcome! I'm a post-CK patient for AN so I can only offer info based on what I have learned over time (I'm also a website Moderator on the ANAUSA discussion forums). If you are in N. CA, then Stanford CK with Dr. Stephen Chang is the place to go. As you have already been inquiring at Stanford, hoping you check into Dr. Chang (and team) at Stanford. It is highly recommended that patients seek out highly trained and most of all, experienced drs in the field of treating AN's, so, from a CK standpoint, no more experience and such as Stanford. I will only speak as a CK patient and leave the kind drs here to help with comparisons to other forms of radio treatments that you mention (ie: proton, GK, etc) as that is their specialty. Much like you, I had a small AN (1cm at time of treatment) with over 90% of my serviceable hearing. My personal goal was to save my hearing (and kill the AN, of course!). I am now over 3-1/2 yrs post CK on my AN... saw my CK team 2 wks ago and they are confirming that the AN is a "done deal"... and as of last hearing test (a few mos ago), I still have over 90% of my serviceable hearing, thus, my personal goal was attained. The CK radio doc on my team (once again) noted to me about "fractionated" radio approaches in order to help save the hearing. By doing lower doses each day (I had 5 days of 6Gy total for 30Gy total), it was to help the surrounding structures. So, that is my story, which is not far off from your's. Again, welcome to the site and will let others (ie: docs, etc) add more to this...... they get paid the big bucks for it (ok, they don't... they are kind enough to volunteer their time and energy here, but we try to make them think they are big shots around here.....  ) Be well and good luck. Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 10/10/2008
Posts: 1435
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I agree with Phyl. There is no need to do surgery.
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 9/16/2009
Posts: 4
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Thank you for responding to my concerns. Yes, Dr. Steven Chang seems to be highly recommended by many neurologists in my area. Phyl, I am happy to see that your outcome was so positive with the Cyberknife treatments. I am hoping for the same. I am scheduling an appointment with Dr. Chang soon. Thanks again.
Sergio
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Joined: 9/16/2009
Posts: 4
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Dr. Medberry,
Thank you for the response. I was feeling the same. It is nice to know that you concur
Sergio.
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Joined: 10/10/2008
Posts: 1435
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To paraphrase Caesar:
I came
I saw
I concurred
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org
Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102
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Joined: 10/11/2008
Posts: 525
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Now, THAT is corny!
Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828 Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Joined: 10/28/2009
Posts: 1
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Hi, Sergio...just completed 3 days CK treatment in Tampa for a 1.4 cm AN. Experiencing a little fatigue, sleeping great at night. The tinnitus has increased as the tumor swells after radiation (I'm told), but headaches are not as severe. Balance issues still with me. I highly recommend CK treatment. I'm a 70+ year-old, and was not about to have invasive surgery at this stage of my life! The CK treatment was quick, efficient, and I'm sure has "done it's job". (Besides, I can always use the mask for Halloween!) ;) Best wishes to you!
Barbara
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Joined: 10/10/2008
Posts: 81
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Hey Barbara! Phyl from the ANA site. Great to see you here! Thank you for sharing your update re: your CK treatment at Tampa and sending wellness wishes your way! BTW, TOTALLY agree about the mask's use for Halloween! I also find it works great as a wall plant holder and a terrific item to hold the dog's toys.  Continued wellness wishes to you! BTW, you have mail on the ANA site. Sergio, here's hoping you are doing well. Will be looking for updates to see how you are doing! Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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Joined: 9/16/2009
Posts: 4
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Barbara,
Thank you for sharing your information with me. I am scheduled for Cyberknife treatment on November 16th-18th at Stanford Medical Center in California. I will keep everyone posted how my treatment goes.
Sergio
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Joined: 10/10/2008
Posts: 81
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Hey Sergio, Will have to note the November dates and you are in fab hands at Stanford..... what a way to bring in the Thanksgiving holiday... by giving thanks that your CK will be done and on the road to wellness (and the bugger dying its fugly death). Will continue to watch for updates! Be well! Phyl
=============================================== 1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of April 2006
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