©

Patient Directory
of the Acoustic Neuroma Patient Archive^©

This directory is for AN Archive visitors, where you can read about those who have traveled the AN path before you -- to know you are not alone, to see that others have been through it before, and to benefit from their experience. Underlined names are linked to the patient's story, as an additional resource.

• Wait-and-watchers

• Radiosurgery patients (GK, FSR, Cybernife, and others)

• Microsurgery patients

• Both radiosurgery and surgery

Feel free to contact anyone listed here if their AN experience is relevant to you. Countries currently represented: Australia, Brazil, Canada, France, Great Britain, Italy, Israel, Japan, South Africa, USA. We know that finding out about your AN treatment options is a struggle - we want to help!

If you are a newly diagnosed patient looking for an on-line support group rather than individual stories, we recommend  the AN patient mailing list: http://www.anworld.com/mailinglist/

Note:  All e-mail addresses are in brackets;  to protect from "web harvesters", the @ sign in the addresses is replaced by " AT "; sometimes, the "." dot is replaced by " DOT". Please change it back before sending mail!

Wait-and-watchers: an exercise in patience

• Jake B. - Waiting and seeing, Dr. Irving, QE Hospital, Birmingham, UK.
  Diagnosis: 12/99, 8mm. Symptoms: Noticed 3/99 that I couldn't hear watch ticking on left side. Progress: hearing test 2/00 indicated further hearing loss; was told this is likely to indicate tumour was growing. Repeat scan 7/00, no detectable growth, no further hearing loss. Next scan 2001. Contact: <jake AT on-edie.net>.
  Comments: Went to see Mr Moffat in Cambridge, (GP refused NHS referral, it would appear that this could be legally challenged if one had nothing else to do). He recommended translab as hearing loss likely regardless of approach and is less intrusive in brain area. Went to see expert in radiotherapy at Sheffield (on NHS), he said either gamma knife or translab. My consultant recommends retro, he also agrees to use of steroids if hearing suddenly deteriorates. Following Sid's lead I too take 10g of vit C a day. Also Chinese medicine. Too soon to say whether it has any effect. As estrogen has been possibly linked to AN growth, I avoid dairy produce and hormone treated meat, as around half the estrogen comes from dietary sources. I accept all this might be ineffectual or misguided, but I doubt it will do me harm.
• Sid Beinart - taking "enormous amount" of vitamin/supplements
  Diagnosis: 10/94 1.3 cm. at age 72. Symptoms: 60% loss of hearing (rt ear), slight balance problem.  Progress: Every six months I have MRI to see if there is any change.  (10/01) There has been no change in size of tumor or in any of the symptoms, after six and a half years. I have been taking enormous amounts amounts of supplemements especially Vitamin C, E, Selenium, glutathione, and NAC (for research check out Linus Pauling, Robert Cathcart, Gary Null, and Inez Petersen). (4/02) My recent MRI shows no tumor growth; this is after 8 years. Also no change in any symptoms.  Still taking large amounts of supplements. (9/25/03) MRI today revealed no change in size of AN tumor, after nine years. There is also no change in any of previously reported symptoms; in fact, balance is improved. I continue to take enormous amounts of supplements previously noted. I have recently added quercetin and ginko biloba in generous amounts. Comments: I was in the military in World War II, serving in N. Africa and Italy. I would welcome any questions and will repy to all e-mails, though I am not a medical doctor. Contact: <sidbeinart AT aol.com>. 
• Marilyn Bush - after five years, turns out to have a petrosal vein rather than an AN.
  Diagnosed: 4/98, at age 50, 1cm. Symptoms: High frequency hearing loss, tinnitus.  Progress: (11/99) There has been no change in the size of the AN or my hearing. I am relieved. I feel that the longer I wait, technology will continue to improve. Who knows, they might even develop a medication to target these Neuromas. (11/00) My hearing test is just the same as a year ago. My ENT also said he could not see any change on the MRI... I would prefer to wait and watch for a while longer. Two more years and I will be a retired school teacher. (11/02) After 5 years the radiologist reported that there was no sign of an AN and instead it was a petrosal vein! I am shocked to say the least. I have emailed a Neurosurgeon, Dr. Barnett, at the Cleveland Clinic that I went to in 1998 for a second opinion and also a Dr. Neff. Both say a petrosal vein is a natural structure requiring no further treatment. This is one for the books. Contact: <MJBush AT aol.com>, (716) 632-2708
• Kenneth Carpenter - has written a booklet on ANs to educate his ENT
  Diagnosis: 1/99, 15 x 12 mm. Progress:  no change 6 months later.  Contact: <kvc2 AT cox.net>. Comments: I enjoy helping others research their particular situations regarding Acoustic Neuromas. I have volumes of information no my hard drive and will be more than happy to share this and attempt to answer any question other ANers may have.
• Anne Dongas
  Diagnosis: 11/90 2 cm at age 49.  Symptoms: none in 1990.  Progress: now tinnitus, guessing at 95% hearing loss.  Contact: <alan AT talon.net>.  Other: White female, upper management, 3 children, 6 grandchildren.
• Bob E.
  Diagnosis: 12/99, 1.3cm AN in main portion but tumor is in two parts; discovered during MRI for migraines. Appears to involve the 9th and 10th cranial nerves more than 7th and 8th. Symptoms: No symptoms other than extremely minor, infrequent, dizziness which doctor says may be unrelated. Headaches are gone thanks to Zomig migraine medication. Progress: As of 10/00 there is debate as to whether there is any growth - in other words not enough to notice. Comments: From the beginning, I took an analytical approach to the situation. I have copies made of all MRI's and have learned how to read them and how the MRI software works. Even found a mistake in size measurement due to MRI magnification change! I am getting plenty of exercise, drinking lots of water and green tea, and taking decaf green tea extract. EGCG in green tea is thought to be an antiangiogenesis chemical. I feel very lucky to have been spared symptoms for the last year. I've travelled, emailed and researched. It has been an interesting experience. Have visited IMRT (peacock) facility, FSR (Johns-Hopkins), and surgeons. If treatment is necessary I will probably go with FSR or IMRT. I would be glad to correspond with anyone about what I have seen an learned over the last year. Contact: <ROBERT.E AT prodigy.net>
• Carolyn Freeman
  Diagnosed: 4/94, 1.5 AN.  Progress:  no change on the MRI in August 1999. Contact: <Spiritwlk AT aol.com>
• Andrew Gregg - knows how to read his own MRIs; <gregg AT alpha.fdu.edu>
• Don Guy - may have a meningioma
  Diagnosed: 4/98, 5mm AN at age 59. Progress (11/02): the tumor still shows no sign of further growth. Contact: <dguy4 AT cox.net>.  Lives in Tulsa, OK.
• Dave Keyes - Tumor's on the right, but hearing and ringing are worse on the left side.
  Diagnosed: 7/00, 3mm right AN at age 47. Symptoms: mild hearing loss and tinnitus; hearing and ringing are worse on the left side. Comments: I'm scheduled for a 2nd MRI in 3 months to see if it's growing. If it isn't I'll probably continue to monitor. Contact: Feel free to e-mail with questions or suggestions to <Davekeyes AT home.com>. Lives in: Birmingham, Alabama.
• Minda Lazarov - have had cancer 5 times and have had neurofibromas removed from my head.
  Diagnosed: age 43, AN 2.2 cm; treatment not yet decided. Contact: <sullaz AT edge.net>. Lives in Nashville, TN.
• Joe Lockwood - retired engineer/project manager in good health
  Diagnosed: by CAT Scan in 3/89, 1.5x2 cm, at age 58; by MRI in 6/97 1.0x1.0 cm.  Symptoms: Musical distortion (see story). Contact: <pinol AT bellsouth.net>
• Lynne Shewmaker - weighing all information on surgery and FSR
  Wrote an essay on the "patient's mantra" for the Archive.  Diagnosed: 8/97, at age 48, 1.4 x 1.0 cm - not at brainstem yet.  Symptoms: 88% hearing in affected ear - slight ear pressure. Progress:  (2/01) no change. Contact: <ausprim AT charter.net>.  Lives in St. Louis.
• Nancy McDonald-McComas - was scheduled for surgery, but the brother, a general surgeon, insisted against it. Progress: No change after 9 months. Contact: <McComas AT rcn.com>
• Mike's father
  Diagnosed:  Fall '96, 2.5 mm, at age 57.  Progress:  grew to 7mm, then stopped growing.  Contact: <m101971 AT gte.net>.  Lives in Wichita, Kansas.
• Martha Nunn
  Diagnosis: 10/01, 1x2 mm rt side.  Symptoms (4/02) vertigo, full feeling, heaing loss and tinnitus. Contact: <martha-nunn AT webtv.net>
• Ray Olsen - had mid fossa decompression to buy time
  Non-AN ear deaf from birth; AN shrunk from 12 to 7 mm. Diagnosed: 9/96, at age 45, 1.2 cm AN.   Symptoms: hearing loss, balance problems. Progress: (11/00) AN seems to be growing again, may choose to be treated (by proton beam radiosurgery) soon. Contact: <Lokas47 AT aol.com>, tel. 801-282-5352. Lives in Salt Lake City, Utah.
• William Peters - retired systems/navigation engineer
  Diagnosed: 3/98 MRI with 1mm slices showed tumor size of 3x7 mm, at age 74. Symptoms: First symptoms 6/97, unsteadiness; 8/97 some hearing loss. 10/97 100% hearing loss right ear.  Tinnitus is in my right ear, as a function of noise environment. Progress:  My unsteadiness improved (decreased) when I had upper eyelid surgery to improve my vision. Good, supportive shoes also help. Comments: (10/97) MRI showed indistinct tumor; (3/98) the second MRI took 2 1/2 hours! I suffer from claustrophobia and overcome this by closing my eyes and keeping them closed throughout. Contact: <wpeters AT suffolk.lib.ny.us>
• Mary Rode
  Diagnosed: 1994 at age 46, 4mm. Symptoms: Noticed that I was unable to hear on the phone. Hearing has gotten much worse, but the tumor has not grown at all (I have an MRI every year). I have some tinnitus, especially at night when I first lie down. Slight loss of balance occasionally. Comments: I did a lot of research in the beginning and saw 5 doctors. Very few recommended anything except traditional surgery. However, when one told me that if I were his wife he would advise me to wait and see, it seemed like the right answer to me. I hope the symptoms will not get worse and that no treatment will be necessary. However, I have decided that if the tumor starts to grow, I will have some form of FSR. Hopefully if that time comes, there will be more long-term research available on the various options. FYI on estrogen: I have taken estrogen for 10 years. It appears to have no impact on my tumor growth for me. Contact: <Mary.Rode AT TCCD.NET>, tel. 817-485-0123 (evening). 
• Bob Seanor
  Diagnosed: 9mm AN (right side), 11/96 at age 45. Symptoms: hearing loss (noticed using telephone at work) and a very slight ringing noise... I thought I had wax in my ears. Results:  for 3 years, no growth and no hearing loss.  Now I notice that my ear ringing (tinnitus) seems louder and my balance is getting worse. But no other symptoms, headache, numbness etc. etc.  Comment: I am glad I have waited this long and hopefully my tumor will continue to not want to get bigger. Contact: <bsganemo AT aol.com>
• Barney Sherman - hoping he'll never need treatment
  Diagnosed: 1994, at age 67. Comment: (3/05) It is now over 10 years that my Acoustic Neuroma was diagnosed and my hearing is still good and I am still a Wait & Watcher. The AN has not grown and may have actually shrunk a bit.  I will be 78 in Sept. of 2005 and I think that I will not take any more MRI's. "My story" may not be typical but before anyone rushes out to have surgery, etc. on a newly discovered AN, make sure to get the best medical advise and do not put your trust in just one Doctor. I am happy that I never had any treatment; and to think that the surgeons were ready "to cut", back in 1994. Lives in CA. Contact: <bnsherman AT aol.com>, phone 925-933-2048.
• Beverly Tinkham
  Diagnosed: 5/97, 3mm AN at age 51.  Symptoms: Hearing normal for age, tinnitus since 12/97.  Progress: 3rd MRI - 12/98 still 3mm, no change in hearing. Increasing tinnitus, occasional balance problems and more episodes of BPPV since the second MRI. Contact: <Bev189 AT aol.com>. Lives in Chicago.
• Elizabeth Turner
  Diagnosed: 12/98, 4mm. Symptoms: loss of hearing, balance problems. I went to answer the telephone and heard nothing but static. Regained 60% of hearing. Progress: still same as of 7/99. I do not want to have surgery. Contact: <et19401912 AT tsixroads.com>
• Barbara Weizer
  Diagnosed: 3/98, 7 mm. Symptoms: tinnitus. Contact: <Justputtn AT aol.com>
• Don Wiggins -
  Diagnosed: 11/96, 8mm AN at age 66. Symptoms: Tinnitus, chronic minor dizziness, and room-spinning dizziness 3-or-4 times per year. Progress: Recent loss of hearing now at 40%. No growth of AN as of 8/98 MRI. Contact: <jodowig AT aol.com>.  

Radiosurgery Patients: taking the alternate route

GK |  Single-session |  Cyberknife  |  FSR   |  Fractionated GK  |  Radiosurgery followed by surgery

Gamma Knife patients

• Dick Barker - GK (1991), Dr. Ladislau Steiner in Virginia
  Dick contributed a piece on AN's symptoms; Dick's wife June, a physiology researcher, wrote an essay on radiosurgery. Diagnosed: 1.2cm right ear, age 61 at the time.  Result: tumor has shrunk 33% since treatment, no problems since, now monitoring at 2-yr intervals.  Contact: <RBarker465 AT aol.com>
• Audra Bradshaw - GK (2/99), Dr. Kondziolka, University of Pittsburgh Medical Ctr
  Diagnosed: 10/98, left 2.5cm AN.  Symptoms: 50% hearing loss in left ear.  Result:  hearing has remained the same, and no side effects from GK. Contact: <rosarosa AT swbell.net>.  Lives in San Antonio, Texas.  Comment: I would be happy to answer any questions about my GK treatment.
• Marjie Coopersmith - GK (1/95), Dr. Dade Lundsford at Presbyterian Hosp., Pittsburgh
  Went on TV to talk about her treatment.  Diagnosed: 2cm AN. Result: tumor has shrunk, 92% hearing discrimination.  Contact: <MMCoop AT aol.com>
• Jeanne Edwards - GK (9/98), Dr. Robert Morantz, Research Medical Ctr, Kansas City,MO.
  Diagnosed: 5/98, 24 x 35 mm, left side at age 51.  Symptoms: Loss of hearing, tinnitus, facial numbness for a least a couple of years before treatment.   Result: No change after GK treatment. Followup MRI will be 9/99. Lives in: Tipton, Missouri. Contact: <edwards4 AT iland.net>, tel. (660) 433-2311.
• Rosalie Goldman - GK
  To contact: <rtg AT ecentral.com>, lives in Englewood, CO.
• Michael Del Grande - GK (11/96), Dr. Georg Noren, Rhode Island Hospital.
  Successfully appealed the decision of his HMO not to pay for GK, has a photo with story. Diagnosed: 9/96, 2.4cm left-sided AN. Result: 1.8cm AN. Had temporary balance problems, still has hearing.  Contact: <avenger AT yesic.com>. Lives in Toronto, Canada.
• Ron Guerriero - GK (8/97), University of Pittsburgh
  Diagnosed: 6/97, right side AN 2.8cm.  Symptoms: trigeminal neuralgia (face pain).  Result: facial pain stopped within 45 days. MRI 2/98: reduced to 2.4cm; MRI 8/98: reduced to 1.9cm; MRI 3/99: reduced to 1.3cm; 12/99: my AN has been reduced to approx 1/2 its size and I've had very little side effects... just an occasional "twinge" episode lasting for a few days (most likely as the tumor shrinks and pulls away from the nerve). Contact: <guerriero AT mediaone.net>, tel. 617-543-6316. Lives in Boston area, MA. Comment: please feel free to get in touch with me.
• Peter Jackson - GK (3/02), Cromwell Hospital in London.
  An Englishman who was diagnosed in Texas. Diagnosed: 3/99 at age 43, 0.5x0.5x0.4 cm AN. Symptoms: temporary, partial hearing loss, slight tinnitus, fullness in left ear. Progress: (3/01) Still small, but growing at 1.5mm/year! Hearing fine, tinnitus mild and continuous, tingling left side of face, rare brief dizzy spells, occasional balance problems. (2/02) AN more than doubled in size and continuing to grow, but no serious symptoms. Result: Clearly I will have to wait quite a while before seeing a result and I will keep you posted. Comments: I would be pleased to correspond with anyone especially about 'the waiting game!'. I am always very happy to exchange emails etc. Contact: <jackson.miltonhouse AT btopenworld.com. Lives in: England.
• Andrea Kennedy - GK (4/97), Dr. Georg Noren, Rhode Island Hospital.
  Story has a good description of the treatment. Diagnosed: 3/97 with a 2.1 x 2.8 cm at age 57.  Symptoms: loss of hearing in left ear and a little balance problem.  Result: The 1 year MRI showed a large black spot which shows that it is dying. The tumor shrunk 3 mm.  Contact: 1 Old Dodgingtown Rd., Bethel, CT 06801-3213. <Pelican AT aol.com>
• Bob Kretow - GK (10/98), Dr. Dade Lunsford, UPMC
  Diagnosis: 10/98, 0.5mm AN left ear, at age 55. Symptoms: some hearing loss, slight dizzyness, tinnitus both ears.  Result: almost complete hearing loss in left ear, dizzyness gone, tinnitus worse in left ear and same in right ear. Comment: I am an epoxy resin chemist, had polio 1949, lyme disease 1988.  Anyone have something similar in their history? Contact: <rakretow AT aol.com>
• Howard Little - GK 5/98 at Royal Hallamshire Hospital in Sheffield, England.
  Diagnosis: 12/97 at age 66, right-sided AN. Symptoms: Deterioration of hearing. Lives in: Preston, England. Contact: <carl.crook AT virgin.net>
• Josephine G. Lowell - GK (7/98), Dr. William Gormley at Hermann Hosp., Houston, TX.
  Diagnosed: 4/98, right-sided 8 mm intracanicular AN, at age 55.   Symptoms: Gradual loss of hearing (over 12 years), tinnitus.  Contact: 11703 Neff St., Houston, TX, 77072-2425 <dklowell AT iapc.net>
• Dick McCaughin - GK (2/96) in Pittsburgh; L. Dade Lunsford, M.D.
  Had an Arachnoid cyst and and AN. Diagnosed: 7/95 at age 57, 1.x1.5 cm. Symptoms: mild tinitus, 50+ % hearing loss. Result: tumor is smaller now, tinnitus a little louder, hearing about the same. Comment: I work as a sales and marketing rep for the Albany Open MRI; I'd be happy to talk to anyone about my experiences. Contact: <Dick583 AT aol.com> or call me at the MRI Center at 518-435-1234.
• Jack Miller - GK (3/98) in Miami
  Diagnosed: 1/98 at age 50, 5 mm left-sided.  Symptoms: lost hearing left ear 6 years prior, and four years prior, both times recovered after steroids. Result: lost hearing again early May, followed again by steroids. No complications other than side effects from steroids.  Contact: <JMillerCPA AT aol.com>.  Lives in Miami Fl.
• Gianni Patrito - GK (6/00) in Verona, Italy. [Italiano]
  Diagnosed: 2/00, 1.5 cm AN in left ear.  Symptoms: hearing loss. Contact: <m.giann AT tiscalinet.it>.  Lives in Italy.
• Bill Shaw - GK (5/99) Prof. Christer Lindquist at Cromwell Hospital, London
  Diagnosed: 3/99, 2.2 cm at age 53. Symptoms: High frequency hearing degradation, first noticed 10 years ago, but put down to service in the Royal Navy; has deteriorated in last 12 months. Results: First MRI scan after treatment showed tumour had enlarged considerably as was predicted. Now some 40 months later, the AN appears to be much reduced in size and the previous symptoms of tinnitus and headaches have disappeared. Comments: I feel strongly that Gamma Knife should be the first choice for all AN sufferers. Contact: <bill AT chutecadley.fsnet.co.uk>, tel. (44)1264-730-328, fax (44)1264-730-742.  Lives in England.
• Lynn Skousen - GK (6/98), Dr. Kenneth Ott, Neurosurgeon, San Diego GK Ctr, La Jolla, CA
  Diagnosed: 4/98, 2cm x 1cm AN at age 53. Symptoms: Tinnitus continuously for 5 years, some hearing loss at that point, could still hear using the phone. Result: lost most hearing in that ear, can no longer hear on the phone. Around 6 months post-treatment, experienced several attacks of trigeminal nerve pain, each lasting from about 10 hrs to 2 days. (6/02) My AN now measures 1.4 x 0.6 cm. My hearing loss remains the same, as does the tinnitus and slight balance problems.Contact: <LSko590387 AT aol.com>.  Lives in Phoenix, AZ.
• James Thompson - GK (2/03) Prof. Christer Lindquist, Cromwell Hospital, London; 12 Gray
  Diagnosis: 11/02 at age 57, diameter 3cm, volume 7.7cc. Symptoms:  Tinnitus, high band hearing loss, minor problems with balance. Contact: <james.thompson AT ucl.ac.uk>, tel. 0044 7860 911 589. Comments: I am a clinical psychologist and a University lecturer (professor).
• Bobbie Towbin - GK (9/98), Dr. Herb Fried, Gamma Knife Ctr at St. Anthony's Hosp., Denver CO.
  Diagnosed: 7/98, l.5 cm right-side AN at age 59.  Symptoms: high-frequency hearing loss, tinnitus and slight balance problems.  Results: Following radiosurgery I had a headache that lasted about 4 weeks - although I am prone to migraines and tension headaches anyway. I also experienced fatigue for about 4 months and slight depression for about the same period of time. No other problems. Contact: <ebtow AT aol.com>.
• Sherman Watkins - San Diego Gamma Knife Center, fall 1997.
  Diagnosed: fall 1997 at age 42, 1cm.  Symptoms: vertigo, fullness in ear, sudden hearing loss.  Result: no growth, no dizziness.  Contact: <SWatkins AT 24hourfit.com>.  Lives in Carlsbad, CA.

Single-session (not Gamma Knife)

• Two patients who had single-session LINAC radiosurgery can be found in the "Both Radiosurgery and Surgery" section of our patient directory.

Cyberknife patients

• John Baransy - Cyberknife 9/03, Dr. Chang at Stanford, Palo Alto, CA.
  Story has good description of Cyberknife treatment. Diagnosis: 5/03 at age 64, 1.1 x 1.7 cm AN on left side. Symptoms: profound loss of hearing in the left ear, vertigo attacks. Results: fatigue right after treatment. Comments: I will update at 6 months and one year. Lives in: Chicago, Illinois.

• Tony Boxer - FSR with CyberKnife 7/00, Dr. Steven Chang at Stanford
  Diagnosed: 4/00 at age 53, 2.7x1.8x1.8 cm AN, mostly extra-canicular, pushing on the brain stem.  Symptoms: Hearing loss and fullness in my right ear, balance problems, tinnitus, can't hear in noisy environments, difficulty understanding some people, mostly women and men with soft voices. Result (at 5 months): Slightly improved hearing (very subjective assessment). Much improved balance (almost back to pre-AN symptom state); tinnitus back to pre-FSR level. Contact: <tboxer AT pacbell.net>.  Comments: I'm a computer consultant and an optimist.

• Mark McLaren - Cyberknife (11/01), Dr. Steven Chang at Stanford, Palo Alto, CA..
  Diagnosis: 2 cm right ear AN in 4/01 at age 44. Symptoms: Moderate high range hearing loss over 10 year period before diagnosis. Result (at 6 mo): Treatment had no significant issues and no interruption of daily lifestyle. Only after effect to date was a 2-3 hour bout of vertigo six weeks after treatment. 6 month check up showed that AN had darkened indicating necrosis and had shrunk approximately 12% in volume. Result (at 1 year): The AN is slightly smaller compared to the 6 month status. As Dr. Chang expected, it went from darkened to white on the MRI and he felt 99% sure that it was dead. Balance and facial function continue unaffected at 100% functionality. Hearing test essentially unchanged from pre-treatment levels, but speech recognition in the treated ear increased to 100% from a pre treatment level of 92%. The micro hairs on the nerve showed an improvement which indicates that it tolerated the radiation very well. Comment: I would be happy to share my experience with anyone. Contact: <Calpedaler AT mindspring.com>.

• Deb Vellines –  Cyberknife (8/05), Dr. Adler at Stanford, Palo Alto, CA.
  Diagnosed: 2/03 at age 62, a 12 x 7 x 4 mm acoustic neuroma on the right side. Symptoms: 2 days of severe vertigo about a month apart with other days of light-headedness and feeling a lack of balance. Tinnitus. Result: In February of 2006 I had my 6-month post radiation MRI.  It showed the tumor to be 1 mm smaller and very slight darkening in the center.  I have had some hearing loss 6 months after treatment, but am hopeful it will improve. Comment: I have prayers and Bible verses that are helping me deal with this diagnosis.  They can be found in A Time to Heal with my hope that they help others on their AN journey.  Contact:  <dahvellines AT ameritech.net>.

FSR patients

• Debie Aniol (mother of ANer Ben) - FSR 7/97 by Dr. Hall (neurosurgeon) and Dr. Cho (radiation oncology) at University Hospital, Minneapolis.
  Diagnosed: 6/96, 10mm AN at age 13.   Symptoms: tinnitus and deafness in one ear.  Results: at 1st follow-up MRI at 6 months after the FSR, there appeared to be some slight enlargement, which Dr felt was due to inflammation. 2nd MRI at 9 months showed slight decrease and definite darkening of the tumor. 6 months later (10/98) another MRI showed more darkening, but no decrease in size. Ben is scheduled for his next MRI on June 1, 1999. Contact: <maniol AT worldnet.att.net>
• John Armitage - FSR 2/99, Dr. Jeffery Williams at JHU.
  Good description of facial mask (for positioning during treatment).  Diagnosed: 11/98, right-sided 2cm AN at age 63.  Symptoms: Hearing loss and tinnitus.  Results: temporary tingling and numbness of skin. Update (12/02) According to 3.5 year post-FSR MRI, the AN has died and shrunk from its original 2.0 cm to 1.2 cm. I now hardly notice my balance impairment, which is objectively the same as pre-FSR. My hearing in that ear seems about the same. Comment: I am very happy with my choice to go to Johns Hopkins. Contact: <johna AT gj.net>
• Will Babetski  - FSR Jul-Aug 2000, Dr. Jay Loeffler at Mass. General Hosp., Boston, MA - 30 fractions.
  Diagnosis: 2/00 at age 42, 2 cm CP-Angle AN on left side. Symptoms: before: 30 db hearing loss, 90% speech recognition, tinnitus; symptoms present for 6 months; during: very occasional mild headache and mild fatigue; after: 35 db hearing loss, speech recognition slightly worse, tinnitus, very occasional slight vertigo. Result: at 18 month MRI, tumor has decreased in volume by 54%. Occupation: Electrical Engineer. Continuing Hobbies: Golf, Skiing, Biking, enjoying life! Contact: <babetski AT attbi.com>.
• Del Barwick - FSR 3/01, Dr. Robert Smee at the Prince of Wales hospital, Sydney, Australia.
  The story by  Del's husband John is a must-read for Australian AN patients! Diagnosis: 11/00, 27x 22x16mm AN. Result: (after 18 months) The neuroma has not increased in size, and the MRI shows it is duying. Del has not had any side effects from the treatment. Contact: Del's husband John at <bowyang AT appt.net.au>.  Comments: I have photos of all the treatment and equipment.  If anyone would like any more information or photos I took please let me know by e-mail.  Lives in: Australia.
• Eric Bauer - FSR 3/97, Dr. Robert Behar, Columbia Spring Branch Medical Ctr, Houston, TX.
  Eric is a private pilot, FAA approved to continue flying. Diagnosed: 12/96, 1.8 cm. Symptoms: slight decrease in hearing and constant ringing, which had started only the month before (11/96). Result: (1/99) speech recognition in the bad ear has improved from a low of 40% to between 60-90% (depending on the volume). The MRI shows no change in size. I continue to fly and do other sports. The only problems are reduced hearing and tinnitus in the left ear. (1/03) In 12/02, I had an MRI and hearing test. Both essentially unchanged since the last tests in 2/01. I have retained about 40% hearing in the affected ear. I continue to participate normally in sports and other activities. Contact: <bauers AT usa.com>. Lives in Houston, TX.
• Mike Boudreaux - FSR 10/98, Dr. Jeffery Williams at JHU.
  A very good description of pre-treatment research.  Diagnosed: 8/14/98 at age 47, 2cm AN. Lives in Tulsa, Oklahoma, working as President of an Advertising Company.  Contact: <mboudre981 AT aol.com>, tel. (918) 746-7000.
• Jim Clarke - FSR 10/99 at SIUH with Dr. Lederman. 4 sessions over a week.
  Diagnosis: 2/99, 9x11x11 mm AN at age 59. Symptoms: Sudden loss of right side hearing along with tinnitus and fullness a year before being diagnosed with an AN. Result: Still has tinnitus, hearing has remained the same (poor on the right). The first (3+ month) MRI shows that the AN is dying. Comment: I was originally scheduled for surgery but at the last minute I decided to look around at other options. The treatments themselves were totally without pain, almost as though nothing was happening.  I flew home the day after my last treatment and was playing golf the next day. Contact: <Jzc00 AT aol.com> and/or 650.948.1725. Lives in Los Altos, CA, retired.
• Keenan Davis - FSR (2/98), Dr. Gil Lederman at SIUH
  Wrote an essay on "informed concent" for the Archive.  Contact: <davis AT sii.com>. Lives in California.
• Patrick Elliott - FSR (6/03), Dr. Chen at the UCD Cancer Center in Sacramento, 28 sessions 180 rads each
  Diagnosis: 3/02, 12x10x12 mm, right ear. Symptoms: dizziness in the morning, hearing loss and tinnitus in the right ear. Progress: In December of 2002 an MRI indicated the AN was now 16x 12x 14 mm. Result: I expect to get an MRI in December, 2003.  So far my hearing is about the same as it was before treatment. Contact: <Maincouple AT yahoo.com>
• Daniel J. Fox - FSR 8/00, Dr. J. Williams, Johns Hopkins Medical Ctr, Baltimore, MD
  Diagnosis: 7/00 at age 48, 2.5 cm. Symptoms: Sensations of pressure/fullness/stuffiness in right ear. Noticed that with a telephone in my right ear, I had difficulty hearing! For 2 years, experienced sensations of mild numbness on the right side of my face, tingling sensations in my lips, numbness and cold sensations in my upper right gums, sensations of dripping/draining, etc. Result: The symptoms remain essentially the same. My expectation is that, in time, the facial symptoms will disappear and the fullness/stuffiness in the ear will go away. Contact: <Foxoutdoor AT aol.com>, tel: 800-523-4332 (Office toll free telephone!).  Occupation: Business owner. Lives in: suburban Chicago. Comment: I want to share my experience with other patients who have been recently diagnosed. I arrived at the decision to undergo FSR,  strictly through my own assessment. In the process, I discovered that the medical profession is driven by economic and political considerations andladen with conflicts. If a person has a medical condition that does not have a definitive treatment plan, i.e. acoustic neuroma, the process that one goes through to determine a treatment plan can be difficult, painful, & stressful. Please contact me, and maybe I can shed a light, and hopefully eliminate the kind of anxiety and stress that I encountered!
• Kyoko Furukawa - FSR (8/00) Dr. J. Williams, Johns Hopkins Hospital
  Diagnosis: 6/00 at age 51, 9x18 mm, left side. Symptoms: (before) deafness, gradually deteriorating for 2 years, tinnitus. Comment: Kyoko's husband, a pediatrician, couldn't find doctors or specialists on the radiosurgery in their country (Japan). He knew that this country (US) has more than 10 GammaKnives and 2 CyberKnives and innumerable LINACs, just in case.  Contact: <fathersu AT po.sphere.ne.jp>. Lives in Japan.
• Alan Friedman, PhD - FSR (10/97), Dr. Jeffery Williams at JHU
  Contact: <AlFreedo AT aol.com>, lives in Portage, MI.
• Sandy Gilbert - FSR (8/01), Dr. Williams at JHU.
  Her husband Bob's story has an excellent discussion of pre-treatment research, and of FSR.
  Diagnosis: 5/01, 2.2 x 1.9 x 1.8 cm AN. Symptoms: decreased hearing in her right ear, slight facial numbness, some light headedness, fatigue. Comments: Convenience should not be a consideration when it come to making your choice of where to go for treatment. If anyone would like more detailed information on any of my research I will try to supply it in a timely manner. Contact: <alwaysakid AT aol.com>.
• Dina Goldin, PhD - FSR (8/95), Dr. Jay Loeffler at Brigham&Women's, Boston, MA
  Dina is the editor-in-chief of the AN Archive.
  Diagnosis: 3/93, 8mm right-sided AN at age 29.  Symptoms: fullness in ear, decreased speech comprehension (temporary), some tinnitus. Result: tumor shrinkage, decreased hearing. Contact: <dqg AT aya.yale.edu>.  Lives in Boston area, MA.
• Bonnie Greenspan - FSR (1/98), Dr. Dr. Jeffery Williams at JHU (5 treatments, 500 R each)
  Diagnosed: 5/98, right-sided 1.2 cm at age 76.  Symptoms: Unsteady gait, loss hearing in right ear. Results:  Radiotherapy was very well tolerated, the only symptom being some fatigue after the treatments. Contact: <n520 AT itsa.ucsf.edu>, telephone: 415-751-7570, address: 59 Manzanita Ave, San Francisco, CA, 94118. Comment: The setup at J Hopkins was very professional, very pleasant to work with.
• Louis H. ^{EDITOR'S CHOICE} - FSR 7/01, Dr. Gil Lederman at SIUH (after wait-and-watching for 2.5 years)
  Louis is a physician who became an AN patient and an AN student.  What he learned made him go against the advice of his colleagues. Diagnosed: 1/99 at age 34, left-sided 7x13mm AN. Symptoms: hearing loss. Update: (12/01) slight decrease in hearing. Lives in New Jersey. Contact <lh1969 AT hotmail.com>
• Charles Gruber - FSR (2/00), 5 treatments 500 rads each, Dr. Williams at JHU
  Diagnosed: 1/00  at age 55, right-sided AN 1.7cm x 2.0cm. Symptoms: slight balance problems, complete loss of hearing in right ear, tinnitus. Result: same as before. Contact: <cgruber AT cgruber.com>, tel. 785.766.3400, address 1425 New York St., Lawrence KS 66044. Comment: I have collected my story on the internet at http://www.cgruber.com/baltimore.html. I'd be happy to have anyone read the story and to check out the pictures included.
• Judy Habib - FSR (6/99), Dr. Gil Lederman at SIUH.
  Diagnosed: 3/99 at age 58, right-sided 2cm. Symptom: some hearing loss in right ear.  Result (11/99): Hearing loss continues; tumor shrank 20%; Dr. Lederman expects the shrinking process to continue in the foreseeable future.  Comments (11/99):  The treatment was so totally painless! In fact, between my second and third fraction, we gave a party at our home for 26 of our son's college friends, 12 of whom slept over. The day after my final treatment, my sisters came to visit from Florida and we did the town. I was fine... enjoyed both the party and the visitors!  Update (7/03): I have had my followup MRI's done locally.  My most recent MRI local report in November 2002 states that the "overall size has not changed dating back to 10/29/99." The radiologist told me that the tumor was still alive.  I do not have any other symptoms except additional hearing loss in the affected ear. Comments (7/03):  I go again in November 2003 to see what is going on now. I feel I am back in the "wait and watch" mode. Lives in: New York. Contact: <ejhabib AT aol.com>
• Joe Hersh - FSR (4/99), Dr. Jeffery Williams at Johns Hopkins, Baltimore, MD
  Diagnosed: July 98, right side AN (1.1 x 1.7cm) at age 35.  Symptoms: Right side hearing loss/ Tinnitus.  Contact: <joe.hersh AT bms.com> Day (336)547-3721 Night (336)852-5461.
• Don Hesser - FSR 10/99, Dr. Lederman at Staten Island Univ Hospital, 4 treatments over 8 days
  Diagnosed: 1.7 cm AN in 8/99 at age 60. Symptoms: slight balance disorder, headache, hearing reduction. Result: during treatment - no change, after - headaches eliminated. Comments: follow-up MRI scheduled in late January, 2000. Other: works full time as department director at university; owns and rides horses, runs on treadmill, lots of outdoor activity. Contact: <hesser AT colostate.edu>, tel. 970-472-1874 home, 970 491-5491 work
• Marvin Kelly - FSR (1/98), Dr. Gil Lederman at SIUH
  Diagnosed: summer'97.  Result: tumor has shrunk by 20% in 1 year and I have incurred no side effects - not while I was undergoing the 4 treatments and none since.  Contact: <Fletchkell AT aol.com>
• Jerry Kemper - FSR (4/98), Dr. Gil Lederman at SIUH
  Story has a good description of the treatment.  Contact: <Pangloss AT sybaweb.co.za>. Lives in South Africa
• Rony Kess-El - FSR (3/98), Dr. Gil Lederman at SIUH
  Rony is a conductor of the Kiryat Bialik Youth Wind Orchestra. He has an in-treatment photo and a collection of poems about his AN experience. Diagnosed: 1/98 at age 49, 3.3 cm. Result: In 10/98, had hydrocephalus and had a shunt operation in Haifa, Israel. Now, the tumor has shrunk 50%. Lives in Kiryat Haim, Israel. Comments: Rony is very active in the Israeli AN patient community. Contact: <kess-elro AT barak-online.net>, tel. (972)54-599-3193.
• S. B. Lewis - FSR (2/98), Dr. Gil Lederman at SIUH
  Symptoms decreased the week of FSR. Diagnosed: 1/98 Left sided 6 mm intra-canallicular AN.  Symptoms: 25% hearing loss, plugged feeling, pain, tinnitus.  Result: Plugged feeling, pain - gone; tinnitus, hearing vary, about the same.  Lives in New Jersey.
• Bill Lively - FSR (9/97), Dr. Jeffery Williams at JHU.
  Contact:  <LivelyB AT aol.com>
• J.P. McDonough - FSR (3/00), Dr. Williams at JHU
  Military officer, FSR paid for by the government. Diagnosis: 3.0 cm AN Jan 2000 at age 27. Symptoms: Tinitus in ear, minor hearing loss, only discovered when getting physical for employment screening for FBI. Results: Hearing has gotten better, some sickness after the radiation but none since. Comments: Treatement has not affected me or my job at all. Contact: <kjbmcd AT hotmail.com>.
• K. Morris - FSR (11/2000), Dr. Gil Lederman at SIUH, New York City, New York
  K. Morris' story has great tips for monitoring your hearing. Diagnosed:  10/2000, about 1 inch. Symptoms: completely deaf in that ear for  five to nine months; one episode of imbalance that  lasted only a few seconds; pain occasionally radiated down my neck. Result: the symptoms are gone, except for tinnitus; the hearing has improved.
• Robin Moyer - FSR (2-3/99), Dr. Andrews at Thomas Jefferson Hospital, Philadelphia, PA.
  Diagnosed: 11/98 at age 46, 1cm right-sided AN.  Treatment: 5 days a week for 5 weeks.  Symptoms: Before - slight hearing loss in right ear, mild tinnitus,vertigo; during - slight swelling in ear, increased tinnitus. Results: (8/03) According to my hearing test 2 weeks ago, my hearing has gotten better; my MRI from July shows a dead tumor. Comment: Please feel free to e-mail me anytime. Contact: <robin.moyer AT verizon.net>. 
• Ben Neideigh (pronounced NY-dig) - FSR (1/98), Dr. Jeffery Williams at JHU
  Diagnosed 5/22/97, at age 45, left (phone ear), 1.2cm x .8cm. Symptoms: tinnitus; high-frequency hearing loss; some degree of full sensation. Progress: Slight growth between 5/97 and 10/97; no subsequent growth. Result: decreased gadolinium response; some tumor shrinkage. Preserved minimal hearing. No facial or balance symptoms. Contact: <Ben AT SpencerMedia.com> (work); <BensAds AT aol.com> (home); tel. (717) 509-9402, lives in Lancaster County, PA.
• Dennis O'Connell - FSR (10/98), Dr. Gil Lederman at SIUH.
  Story includes documentation submitted to the HMO for approval of treatment.  Diagnosed 3.2 cm.  To contact: <bitofwit AT aol.com>. Lives in Ventura, CA.
• Chris Ottewell - FSR (4/98), Dr. Gil Lederman at SIUH
  Diagnosed 6/97 at age 50, left side, 2-3 cm. Symptoms: Frequency dependant hearing loss (about 60/70db down from mid range upwards), tinnitus, headaches, facial numbness, "cotton wool" feeling. Contact: <chrisottewell AT onetel.com>, <chrisottewell AT onetel.com>. Lives in England.
• Roberto Procopio - FSR (12/98), Dr. Gil Lederman at SIUH.
  Diagnosed 9/98, 2 cm AN at age 46 (and pressing the brain stem). Symptoms: severe balance problems; pressure in the back of the skull; a mild hearing decrease in the affected left ear; some dizziness/sickness; loss of facial skin sensation, due to the trigeminial nerve affected. Worsened tinnitus. Results: Four months later, I am feeling sometimes better, sometimes the same as before, but never worse. I still work as a salesman, in fact I am working much more than before the AN.  (9/03) Developed hydrocephalus, requiring a shunt. Contact: Tel +55 11 846-9389. E-mail: <roberto_procopio AT uol.com.br>.  Lives in Sao Paulo, Brazil.
• Kathleen Renfroe - FSR (10/03), Dr. Gil Lederman at Staten Island Univ. Hosp., 5 treatments on alternating days.
  Diagnosis: 1/03, watch and wait until 10/03. Results: I still have my hearing.  Very satisfied with treatment. Hoping for good outcome with 6 month MRI. Contact: <llwoodstn AT aol.com>
• Tom Roth - FSR (12/98), Dr. Adler at Stanford Univ. Hospital
  Diagnosed: 11/98, 2x3cm, left side at age 42.  Symptoms:   good hearing remaining.  Contact: <globalout AT aol.com>.  Lives in San Francisco, CA USA
• Gary - FSR (10/00), Dr. Jeffery Williams at JHU.
  1.7 cm AN. Contact: <STORMDUD AT aol.com>
• Nita Shuhart - FSR 9/00 right ear, 6/01 left, Dr. J. Williams, John Hopkins Hospital, MD. 5 sessions, total 2500 rads
  Having FSR 2 times within the same year. Diagnosis: 8/96 at age 65, bilateral acoustic neuromas, NF2, right 1.5cm, left 1.7 cm. Symptoms: Sudden loss of hearing in the right ear.  Observation: Waited and watched for over 4 years, MRI's showed 1-2mm growth each year. Have worn 2 hearing aids since 1997. By 5/99, right caused hearing drop to a 55% normal hearing level; left retained 85% normal hearing level. FSR outcome: No pain, no reaction. Word recognition and hearing level improved 10 decibels in right ear. Progress: The left ear had sudden hearing loss 12/00; got new Digital Resound 5000 hearing aids. Will have FSR on that side 6/01. Contact: <allentravel AT earthlink.net>, phone 1-972-390-7610. Comment: I still work full time at my agency (Allen Travel Service) to keep my mind active and young.
• G. Charles Spray Jr. RN, BSN. - FSR (5/99), Dr. Jeffery Williams at JHU, 10 sessions
  Homehealth nurse & Masters of Social Work student.  Diagnosed: 3/99 at age 43.  Symptoms: tinnitus, pressure, fullness, dizzy spells, positonal vertigo, distorted/garbled hearing in affected ear. hearing tests near normal, with affected ear slightly abnormal.  Results: fatigue right after treatment. Comments: After a consult with a Micro-Surgeon and a Gamma-Knife Radio-Surgeon at Emory, we discovered that my tumor was two irregular in shape to use either procedure, and both gladly refered me to JHU. Dr. Williams and his team are very professional, and I have no reservations in recommending the JHU team to anyone needing an intervention of this nature. Being a nurse, I speak the same language as the doctors and the insurance company, and it helped faciliatate the process. If I can assist anyone in the future, feel free to contact me by way of e-mail.  Contact: <gcspray AT surfsouth.com>, tel. 912-263-8794. Lives in Quitman, GA.
• Sarah - Proton Beam (1/98), Loma Linda University Medical Center, CA
  Diagnosed: 1/95, a 2cm AN, at age 43. Symptoms: 100% useable hearing. Contact: <SHANE5768 AT aol.com>.  Lives in central CA.
• Roy Smith - FSR (1/99), Dr. Gil Lederman at SIUH
  Diagnosed:  5/98 Symptoms: deafness and dizzy spells. Lives in Southhampton, England
• Wesley (Wes) Stillwagon - four-week FSR (9/98), Dr. Silverman at SIUH
  Diagnosed summer'98,  3 cm at age 58.  Symptoms: I was falling over and at times could not coordinate enough to put myself into bed. I was put on Diamox to relieve the symptoms and it worked quite well. Results:  The symptoms have not gotten any worse.  Follow-up MRI indicates progress as expected. Full recovery isn't expected until about one year.  Contact: <wstillwagon AT hallowquest.com>, http://www.hallowquest.com/wes.htm
• Julia Scott Tew - FSR (early 2000), Dr. Gil Lederman at SIUH, 3 months of weekly sessions
  After treatment for huge bilateral ANs, horrible side effects that are now gone. Diagnosed: 4/95, 3cm bilateral ANs, at age 20. Symptoms: Headaches, hearing loss. Results: Although my hearing is completely gone, I am feeling great and living a full life; have begun looking for a job. Comments: If anyone has any questions, please write me! Contact: <julie-tewlie AT cox-internet.com>
• Yvonne Tommis - FSR (9/'97), Dr. Gil Lederman at SIUH
  Diagnosed 9/95, 1cm AN. Progress: 1 year later, AN grew to 1.2cm, then no further growth. Symptoms: 4/97 symptoms started to worsen: major headaches, lack of coordination, fatigue. Results: (9/00) headaches largely gone, coordination normal.  Contact: <yvonne AT mcmail.com>.  Lives in Great Britain.
• Jack H. Venner - FSR (4/98), Dr. Jeffery Williams at JHU
  Diagnosed 1/96, 1.5 cm at age 71. Symptoms: dizzy, unsteadiness and balance problems, reduced hearing in one ear, feeling of fullness in one ear, tinnitus. Result: same level of reduced hearing in one ear; tinnitus remained at the same level; no other problems. Contact: <jac2073 AT pinehurst.net>, tel. (910) 295-0054.
• Stewart Walden - FSR (8/98), Dr. Gil Lederman at SIUH
  Stewart has NF2, and tumor had displaced the brain stem. Diagnosed: 6/98, a 2.4cm AN at age 49. Result (9/02): Tumor shrunk to 20% of its original volume, brain stem returned to normal position, some improvement in hearing. Contact: <stuwald AT aol.com>, tel. 516.599.7544. Lives in Malverne (NYC area), NY.
• David White - FSR (1/02), Dr Jeff Williams at Johns Hopkins
  Diagnosis: 8/01 approx. 2cm at age 56. Symptoms Before: 10 years of tinnitus, slight hearing loss (noted only after diagnosis) slight balance problems started a few months after diagnosis. Symptoms During treatment: no problems, a little fatigue that increased during the week of treatment, but was able to walk for up to an hour and a half around Baltimore each day following treatment (in January!.) No recovery time. After: A bit of fatigue during the month following treatment, but no change in schedule or activities. At the 4-6 month period following treatment, some sense of pressure, discomfort, tingling in that side of the face, some increase in dizziness with sudden head turns or quick movements. Nothing that interfered with any activity. No treatment for these temporary symptoms. Result (12/02) 11 month MRI shows tumor shrunk to 15x13X10 mm. From JHH: "there is no evidence for toxicity or adverse effect in the surrounding normal brain." Balance about the same as before treatment, hearing has not been tested yet, no major change.  Contact: through Kathryn White <kgwhite AT aol.com>

Fractionated Gamma Knife

• Robbie Wigley - FGK 10/00, Dr. Georg Noren, Rhode Island Hospital.
  Good story; photo album from treatment is included. Diagnosed: 7/00, 2.5 cm left AN.  Symtoms: balance off, tingley mouth, spots of numbness, hearing degradation.  Result: facial function, trigeminal nerve are unaffected; the quality of sound I hear in my left ear seems to be better.  Contact: <robbie AT gofast.net>.  Lives in Minnesota.
• Victoria Paige Meyerink - FGK 5/99, Dr. Georg Noren, Rhode Island Hospital.
  Victoria helped Dr. Noren develop this new protocol.  Diagnosed: 12/98, 2.5 cm AN at age 38. Symptoms: fullness in ear, facial numbness, dizziness. Comment:  No further growth, stable hearing.  My progress is also being followed by Rick A. Friedman, MD PhD. Contact: <vpmeyerink AT hotmail.com>.  Lives in CA.

Patients who had both radiosurgery and surgery

• Ya'akov Almor - surgery (1/97), Israel, then single-session radiosurgery
  planning to take no chances at a long recuperation the second time around
  Diagnosed:  2.5 cm left AN.  Lives in Herzliya, Israel.  Contact: <mrktdrct AT netvision.net.il>
• Marion Donehower -  FSR (3/99), Dr. Lederman at SIUH; partial surgery (11/99) at UCSF.
  Marion's post-FSR story describes the typical symptoms of a gigantic AN, and illustrates the risk of treating very large ANs with radiosurgery alone. Diagnosis: 4/98, 3.8 AN at age 52.  Result of FSR: hydrocephalus, life-threatening compression of brain stem. Result of surgery: facial paralysis, dry eye, weakness and dizziness -- all slowly improving.
• Ellen Farfel - Surgery at NYU by Dr. Noel Cohen in 1988; FSR (7/99), Dr. Gil Lederman at SIUH, 4 sessions
  1st diagnosis: 1988, 7mm right-sided AN at age 57.  Result of surgery: Hearing improved, headaches everyday for three years.  2nd diagnosis: 1999, 1cm regrowth.  Symptoms: Balance problems, dizziness, no useful hearing in right ear.  Wear hearing aid in left ear. Update: I am writing to tell everyone about the new hearing system I am wearing. My right ear is deaf because of the acoustic neuroma and I wore a hearing aid in my left ear. Now with the new units (behind the ear type) I can hear on the right side! The unit on the right side is really a radio transmitter and picks up sound on the right and transmits it to the left ear hearing aid. I can hear much better all around me now. I heard of a cros hearing aid but I expected it to be a wire across my head. There may be such a system but it is not the one I have. The units are manufactured by Telex. I am very pleased with the set up and hope others benefit from the same thing.  If I can help others with more information I would be glad to. Comment: after surgery, no one warned me it might grow back. Contact: tel. (732) 914-1450 or e-mail <ellenl AT webtv.net>. 
• Grace E. Foote - right surgery 8/97, left FSR 10/98, right FSR 5/00 (at SIUH)
  NF2 patient, bilateral ANs treated by FSR (one at 4cm, the other as regrowth after surgery). Diagnosis:  6/97, diagnosed with bilateral AN's (NF2). 1st Treatment: (8/97) Surgery for the right one. Result of surgery: total loss of hearing, facial paralysis to this day. 2nd treatment: 10/98, left AN measured roughly 3x4x3cm and was treated at Staten Island. Result of FSR:  no loss of hearing or facial nerve function. 3rd treatment: 5/00, right AN decided to grow back (still tiny but already causing problems) and was treated at Staten Island. Progress: Now I am "watch-and-see-if-anything-new-grows" status; though I have NF2, thankfully the only tumors in my brain are the two AN's and they have both been treated and are stable. Comment: Anyone looking for an objective opinion of the surgery vs. FSR approaches may contact me. Keep your heads up and wear your smiles. There is hope out there :-) Contact: <imflying71059 AT hotmail.com>. 
• Carol Hacker - FSR (7/98), 5 fractions, Dr. Gil Lederman at SIUH; surgery at HEI, Los Angeles.
  Carol is a motivational speaker and an author of nice books.  Diagnosis: Fall 1996, at age 47. Result: tumor failed to respond to radiosurgery, required microsurgery. Lives in Atlanta, GA. Contact: <GaonMind AT aol.com>
• Byron Jones - FSR 6/99, Dr. Jeffery Williams at Johns Hopkins University Hosp., Baltimore, MD, USA; surgery 5/06 at the House Clinic in Los Angeles, CA, USA.
  Diagnosed: 3/99, 2.4 cm AN at age 45. Symptoms: Hearing loss, tinnitus, disequilibrium, slightly altered taste. Results (as of 1/07): Almost seven years after FSR, the tumor has grown significantly and I had surgical removal of the tumor. People are still saying that FSR  is successful 95% of the time. I hope that's true. I say if you choose any radiation treatment, you should repeat MRI every year. Comment: E-mail questions and other messages welcome. Contact: <beedj AT atnex.net>. Lives in Georgia, USA.
• Chuck Knorr - bloodless suboccipital surgery (fall'78), Peacock bilateral FSR (summer'98), Dr. Mei-Chang Cheng, head of the Guthrie Clinic, Robert Packer Hospital, Sayre, PA.
  Chuck has bilateral ANs with a family history of ANs, he also has Guilian Berra Syndrome. Diagnosed: 8/78, left AN 3.5 by 1.5 by 1.2 cm, at age 34; 4/98 right AN and recurrence of left one. Symptoms: hearing loss, tinnitus, headaches, mild balance problems. Results:  facial paralysis after surgery, corrected by hyperglossal facial anastomosis and gold eye implant.  No tumor growth after FSR. Currently on Disability. Contact: <lampligh AT uplink.net>
• Bill Macdonald - AN surgery left ear ('86), no recurrence; AN surgery right ear; FSR right ear 1.4 cm AN (2/00), Dr. Gil Lederman at SIUH
  Bill is a 42-year old (in 5/00) NF2 patient who provides an NF2 perspective on the treatment decision process. Results: some tingling and numbness 3 months after FSR treatment, controlled with steroids. (4/05) Hearing has declined, no other side effects. Comments: Please feel free to contact me with any questions or comments. Contact: <BMac2358 AT aol.com>
• Susan McCreary - 6/99, one-shot radiation (not Gamma Knife) by Dr. Oyesiku, Emory Univ. Hosp., Atlanta, GA; then, translab surgery in 10/01 through House Ear Clinic in Los Angeles.
  Diagnosed: 4/99 at age 49, 2.3cm. Results: (2/00) 5th & 7th nerve paralysis on left side from "radiation effects"; only partial lid closure requiring round-the-clock eye care to protect cornea ("eye bubble" at night, eyedrops and moisture chamber in eyeglasses during the day); difficulty drinking/eating; balance problems; fatigue; nerve pain; spasms at tumor site (muscle under ear); headaches. (3/00) Fell and broke left ankle, had ankle surgery. (7/00) MRI shows some cell death. (7/01) MRI showed 10% tumor growth -- now 2.6cm; neurosurgeon recommends surgery by end of year. (10/01) Had surgery through House Ear in Los Angeles at St. Vincent's Hospital. All of the tumor removed using translab approach without severing facial nerve; however, 5th and 7th nerve damaged from earlier radiation. Total loss of hearing in left ear; balance problems. Had spring surgery on October 29 for eyelid closure and cornea protection. (1/02) Also have ischemia from tumor pressing on brain stem -- fine motor skills affected (particularly, handwriting). No headaches or dizziness. (6/02) Ischemia resolved; handwriting back to normal. Still no headaches or dizziness. I feel better than I have in years. Working full time as editor. As long as I get enough rest, I am fine. Seeing facial reanimation therapist for paralysis and balance. Comment: I highly recommend House Ear -- the highly skilled surgeons there gave me my life back! Contact: <smccreary AT yahoo.com>
• Lisa Probst - GK (5/92 and 1995, Stockholm/Sweden), microsurgery (6/98)
  Lisa contributed an article on Gamma Knife. Diagnosed: 9/91, 2.9cm AN, left side.  Symptoms: started with numbness on the left side of my tongue, extending to the left corner of my mouth and rest of face. Contact: <Lisa.Probst.lprobst AT nt.com>
• Gary Washmon - FSR (8-9/99), Dr. Jeffery Williams at JHU; surgery (4/03), Dr. Jackler at UCSF.
  Gary's AN was the largest ever treated with FSR by Dr. Williams; the treatment was not successful. 
  Diagnosed 6/99, 3.5 x 3.8cm AN at age 43. Symptoms: High frequency and deficiency in left ear. Slight balance problem. Double vision when playing racquetball. 1st treatment: FSR (8-9/99), Dr. Jeffery Williams at JHU, 20 sessions of 4,000 rads total. Result: A little more fatigue at first. "Only missed work while I was in Baltimore". Update - 3 months: MRI shows 2mm decrease and substantial necrosis (darkening) of my AN. "I am feeling stronger and have resumed all activities with my usual obsessiveness". Update - 1 year: 9 month MRI showed no growth, no swelling, no additional shrinkage, and continued necrosis of the tumor. Update - 7/03: this winter, Gary was experiencing side effects including edema; steroid treatment was not sufficiently helpful, and this spring it was decided that the tumor needed to be surgically removed.  The tumor was removed on April 2, 2003, very successfully, at UCSF. (We found out about Dr. Jackler from Marion's Story in the AN Archive.  He is one of the few surgeons with a lot of experience doing surgery post FSR on large AN's.) Gary's facial nerve was preserved, for which we were very grateful.  He did develop hydrocephalus, likely due in part to the prior radiation damage, and he did require a shunt.  It has been about 3 1/2 months since that second surgery and he is doing better every day. Occupation: University Art Professor and Department Chair. E-mail: <GWashmon AT twu.edu>
• Harry Whitmore - surgery (suboccipital) in 1996, Univ. of Washington, then GK (C Model) on 10/9/00 at Harborview Medical Ctr, Seattle, WA.
  Surgery:  I lost hearing and balance on the right side. Follow-up MRI in 2000 showed regrowth of the tumor. It was 1 cm long with 3 lumps. Further surgery was considered too risky so the Gamma Knife was advised. Gamma Knife:   I was given a total of 9 shots with the Gamma Knife.  Recovery was quick and I was back to work the next day. In 24 hours after treatment I noticed that my energy has improved and balance has improved dramatically. The Gamma Knife has been a miracle to me. Contact: <HDWHITMORE AT worldnet.att.net>, addr. 7908 48th St., E. Fife, WA 98424; tel. 253.922.6459