CyberKnife Patient Support Group Guest Bood Archives

In order to lessen confusion as to where to touch base with others we are no longer offering a Guest Book as of February 1, 2004. Please make all entries on our message board or by email. We continue to encourage everyone to submit their personal experiences to Our Stories page via email.

We value all of your comments, questions and sharing of your own experiences with CyberKnife, thus the following entries are preserved from the GuestBook.

Current Members in CyberKnife Patient Support Group GuestBook 56

Date January 29, 2004
Name Marianne Fleischer
Email FleischerZ@aol.com
City San Francisco
State CA
Country USA

Comments Don, You asked me to stop by this website (and Dr. Dumas’s Cyberknife website. This seems like revolutionary surgery with some amazing results. Marianne Fleischer (writer-producer) 1/30/04

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Date January 27, 2004
Name Val & John
Email brebiz@yahoo.com
City Alamogordo
State NM
Country USA

Comments We are looking to hopefully get cyberknife at Phoenix after John has his most recent MRI done Thursday. He has RCC with mets to the lungs (5-6) and we believe those are stable due to IL-2 treatment. He had 2 small spots in his brain so he had bursts and WBR in the summer and never had any symptoms until November. MRI revealed a tumor and swelling-not sur eof it’s the same one or new but he was hospitalized a week and now is on Decadron. The onc here doesn’t know anything about this treatment-thought we might be able to do gamma knife but Radiation onc in El Paso said tumor is too big. This is the only other option we can find…my question is IF this 4 cm tumor is the same exact one they radiated in August does it matter for cyberknife????

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Date January 21, 2004
Name Cindy Seay
Email cseay1174@aol.com
City Tijeras
State NM
Country USA

Comments My husband had the cyberknife procedure done last month in Phoenix and is having a few problems. I would love to hear what side effects anyone had and what he should expect long term.

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Date January 21, 2004
Name JAMES ANTHONY
Email JIMBOANT@AOL.COM
City VERO BEACH
State FL
Country USA

Comments NEED COMMENTS FROM ANYONE HOW HAS BONE CANCER ON HAS SPINE. HAS CYBERKNIFE HELP THEM AND HOW MUCH?

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Date January 8, 2004
Name Chris Purlee
Email gcpurlee@ligtel.com
City Howe
State In
Country USA

Comments Looks like I will be visiting Boulder Colorado the week of January 19 to be treated a week for oligodendromglioma, a brain tumor. I would love to hear from anybody else who has experienced the same situation.

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Date January 8, 2004
Name STEVEN
Email STEVEN1338@AOL.COM
City REISTERSTOWN
State MARYLAND
Country USA

Comments Hi , I have a Schwannoma on my L-1 spine. I am about to have Cyberknife next week, I just had the fiducials placed two days ago. Im sore but in good spirits. Cant wait to have the Cyberknife next week and move on with my life.

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Date January 5, 2004
Name Christy
Email Christy0559@aol.com
City Johnstown
State Pa
Country Camberia

Comments Just need to talk to someone

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Date December 23, 2003
Name Chris Purlee
Email gcpurlee@ligtel.com
City Howe
State Indiana
Country USA

Comments Lots of info to keep my head spinning. I have a tumor on my brain called oligodendroglioma. I had surgery a year ago to remove as much as they could and now the doggone thing is coming back. I’m trying to look into lots of options including cyberknife. What would you say to convince me? Seems like lots of options. I guess I’m most leary of the effects from the radiation in my future. How would you encourage me? Thanks so much.

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Date December 20, 2003
Name Evan Evans
Email DnldEvans@aol.com
City Shrewsbury
State Shropshire
Country England

Comments I myself have had gamma-knife treatment, in sheffield. I now patiently await the full out-come of the treatments success. After the treatment I felt full of life . I am so greatful to all who helped in the treatment of, magnificent! from the cleaners to the doctors I will remember you all .Especialy Kieth the radiographer in sheffield who always had a joke to lighten the mood.

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Date December 18, 2003
Name Becky Kirkpatrick
Email bdkirkpatrick@earthlink.net
City Hudson
State WI
Country USA

Comments Greetings from the Upper Midwest. My CyberKnife journey began in Oct. 2003 while searching for the cause of hearing loss in my right ear. An MRI discovered an AVM in the perital lobe of my brain, totally unconnected to my hearing loss. Off to the neuroradiologist for a confirming Angiogram. My AVM is small [1.7] and is not active. I am and have been sympton free to this point, but made the decision to treat it as according to my scans, it is fed by a major artery. I was extremely fortunate to fall in to the hands of a great team of neuroradiologists and neurosurgeons who are leading the brand new CyberKnife program in St. Paul, Minnesota. I had my first CK treatment yesterday, and one more to go today. I am very optimistic about that my AVM will be gone in a relatively short period of time and that my AVM will remain inactive during that time. I am so grateful for 21st century technology and the options I’ve been afforded for treatment.

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Date December 17, 2003
Name Tim Doerr
Email luvbugs@qwest.net
City Billings
State Montana
Country USA

Comments I HAD THE CYBER KNIEF PROCEDURE IN 2000 FOR A RECURRENT ACOUSTIC NERUOMA THAT HAD BEEN SURGICALLY REMOVED IN 1998, BUT GREW BACK. MY MRI EVERY SIX MONTHS HAVE INDICATED THAT THE TUMOR HAS NOT INCREASED IN SIZE AT THIS TIME.

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Date December 12, 2003
Name Bryan E. Negrey
Email jacbrynegr@RCN.COM
City Leonardtown
State Maryland
Country USA

Comments First, Thanks to all in this support group and the conception of it. Being able to compare to a "T" my dilemma and experiencencs with my meningioma and my treatments of Cyber-Knife at Goergetown University Hospital, Washington DC. My symptoms started with severe and demanding headaches. Not the hangover kind, but some that woke me out of sleep and made the days miserable to cope with. Things got progressively worse. I started to forget what my daily missions were and at times forget where I was going or where I had been. The straw that broke the camels back was, one day while standing in front of a platoon of my soldiers, I started to back peddle and lost my balance falling flat on my back. Embarassing yes, but a wake up call none-the-less. I was taken to our Med center and then forwarded to a civilian hospital. An MRI was performed and showed evidence of a huge mass in the frontal lobe of my skull. I am a simple soldier, born and raised on a farm in southern Pennsylvania. This was all new to me and I am very stubborn when it com

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Date December 10, 2003
Name Allen Goddard
Email agodd10198@aol.com
City Castro Valley
State CA
Country USA

Comments Looking forward to joining you

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Date December 10, 2003
Name Mark Tari
Email marktari@volcano.net
City Pioneer
State CA
Country Amador

Comments I have a good friend with Adenocystic Carcenoma. Rare form of cancer with almost no research done on it. He has about 8 tumors in his lung. This looks promising on him. please let me know what you think.

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Date December 6, 2003
Name Joslin Twouyo
Email jotrouillot@yahoo.com
City Miami
State Fl
Country USA

Comments I am 55 and have AN. It is very small and I had almost complete hearing loss in that right ear. The left year is better but I stil have to use a hearing aid. I don’t have any medical insurance and wouls like to know if I can have cyberknife treatment at Jackson Memorial Hospital in Miami.

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Date December 4, 2003
Name Faith
Email Shapes_987@hotmail.com
City Ottawa
State Ontario
Country Canada

Comments I have scoliosis and CP and i like how everyone shares their stories on here if there was a way i coud do so myself then i would. good job though.

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Date November 30, 2003
Name Jim Stewart
Email jstew@arvig.net
City longville
State MN
Country USA

Comments Rec’d My 3rd tx 11/21, one of the first pts. to use Cyberknife in St Paul MN at St Joseph’s Hosp. I had an AN (L) ear. Hope to write more about this after a few weeks.

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Date November 28, 2003
Name gary w. nutt
Email love4x4ing@comcast.net
City orangevale
State ca.
Country u.s.

Comments i was diagnosed with carsonoma of unknown primary in oct.03.I have a tumer in my menubriam & four lesions in my spine.I would like to know if the cyberknife could help me.my phone # is (916)989-4082.my docktors seem to know very little about the cyberknife.

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Date November 23, 2003
Name Judith Almond
Email byrondesign@earthlink.net
City Tucson
State AZ
Country USA

Comments I just completed 3 cyberknife treatments at the Barrows Institute in Phoenix. I was diagnosed with NSC Lung Cancer in Oct 2001. I had radiation, chemo, and surgery (lobectomy) to remove a squamous tumor high in my left lung. I then had two more large chemos as insurance. Unfortunately, the original tumor left enough cells to start up again, eating thru two vertebral bodies and forming a tumor in my spine. I had neuro surgery to remove as much of the tumor as possible, then the three cyberknife treatments. My question is: I am having considerable pain in my chest and wonder is this pain normal? It’s only been three days since ending treatment. I am hoping this pain will be short term.

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Date November 21, 2003
Name Mike Dolan
Email mdolan@harbornet.com
City Tacoma
State WA
Country US

Comments I was diagnosed 5 days ago with a1.9 x 1.2 cm acoustic neuroma on my right auditory canal. As I sit here reading the various stories I am amazed at the similiarities between my own experience and that of those listed. Especially Tonys’…point by point my early observations and diagnosis is almost identical to his. This website has been encouraging and is much appreciated. I will see another specialist this Monday November 24, 2003. Can anyone offer suggestions on how to get an interview or referral with one of the Stanford doctors?

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Date November 21, 2003
Name Mike Dolan
Email mdolan@harbornet.com
City Tacoma
State WA
Country USA
Comments

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Date November 16, 2003
Name Carmen Ellison
Email carmenellison@msn.com
City Lakewood
State CO
Country US

Comments I am undergoing the CyberKnife treatment next week and was hoping that someone could provide me with some information on the possible dangers and side-effects with this type of treatment. Any feedback would be greatly appreciated. Thank you.

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Date November 14, 2003
Name Robert Zello
Email zoviek@juno.com
City Cheshire
State Ct
Country USA

Comments I was found to have a A.N. about 1 centimeter 8 mounths ago. still reseaching what procedure to have. Go for another MRI in Feb. my docs. want me to have surgery, and want me to go to a hospital that I have had only bad experiences at. And Insurance won’t pay for me to go out of state. So I feel traped in a bad situation.

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Date October 30, 2003
Name sandra
Email sandragwilliams@yahoo.com
City san francisco
State california
Country usa

Comments Well it’s been about 2 years since I had my Cyberknife at Stanford. I returned to work 2 days after my surgery(3 consecutive sessions)…I am thanking God everyday I had access to Stanford and the whole staff at Stanford. I thank God for Dr. Adler for his responsibility in getting us this type of treatment. I’m sure I made the right decision. My situation was complex: I had facial spasms caused by the tumor. But until I met Adler noone else seemed to agree that the tumor might be causing some of the spasms by pushing up against a nerve. Before his expertise, I had other opinions of having 2 surgeries(one for the neuroma and one for the spasms).Just think, I possibly could have had major facial damage. Thanks so much Dr. Adler and to all the other staff who were just wonderful and supportive. If you have any questions please feel free to ask… Forever grateful and spasm free: Sandra

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Date October 17, 2003
Name susan lanham
Email slanham@myway.com
City boulder
State CO
Country USA

Comments 10/14 next week i will have cyberknife surgery for a metatastic brain tumor at the boulder colorado facility. i am extremely confident and hopeful. next dream is too shrink my lung tumor, through more chemo, taxotere, to cyberknife possiblities. thank you for organizing this support site. susan lanham

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Date October 15, 2003
Name diane steiner
Email dinahlevine@yahoo.com
City Columbia
State Maryland
Country U.S.A.

Comments My MRIs are presently at Georgetown U. Hospital preliminary to cyber knife treatment for a recurrent pituitary adenoma. I am frightened and confident at the same time, as it is a personal decision and somewhat against the advice of the doctors at the hospital where I was originally treated (which hospital does not have a cyber knife). I already have one support person who had similar treatment to mine with the cyber knife and has only glowing praise for the treatment and the people at Georgetown. Any other input would be welcome.

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Date October 14, 2003
Name Jay
Email
City Medina
State Ohio
Country USA

Comments When all is said, life could be oh so much worse. As I cannot rewrite history ( I guess I am quite limited ), we move forward and am anxiously awaiting graduations, weddings, ……… j

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Date October 11, 2003
Name Susan Fries
Email sashaspy@yahoo.com
City Tucson
State AZ
Country usa

Comments I just had Gamma Knife done here in Phoenix at the Barrows Institute for my acoustic neroma. It is so nice to see a support group like this..I am thinking of starting one here too! Keep up the good work.

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Date October 7, 2003
Name wendy
Email dan.dunham@sbcglobal.net
City dallas
State texas
Country
Comments

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Date October 7, 2003
Name Brenda McDonald
Email Brendamc@att.net
City West Bloomfield
State MI
Country US

Comments Please send comments. I have NF2, had FSR at Johns Hopkins (10 fractions) in Jan for a 3.4 cm acoustic neuroma. I have a 2.9 cm spinal tumor at C4-5, had surgery in this area 6 years ago and am considering Cyberknife.

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Date October 2, 2003
Name Betty Noll
Email fergiel@prodigy.net
City Phoenix
State Arizona
Country USA

Comments I have a small AN but my hearing and balance is getting worse. I am considering cyberknife at St. Josephs as they have newley aquired the machine. Any comments would greatly be appreciated. I am 66 and would like to continue my life without the dizzyness and loss of hearing and being able to go back to work. glad to hear from anyone with comments or advice thanks Betty

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Date September 26, 2003
Name Sam Carr
Email stcarr16@hotmail.com
City Gilbert
State AZ
Country USA

Comments I would appreciate your input regarding my uncle who is suffering from an apparently benign tumor at the sixth or seventh thoracic spine region. He has received partial radiation and chemotherapy treatment. As I understand, the tumor is in a position the doctors do not feel they can operate. They did insert a morphine pump but he is still in a great deal of pain. As of 09/26/03 he is hospitalized in a small town in South Dakota with a perforated bowel which may be due to constipation as an adverse effect of the morphine. He is stable at this time(Temp=99, WBC’s elevated, extubated and breathing with an oxygen mask). Any insight you can share is immensely appreciated. He is the patriarch of our family, a cross between the Rifleman and the great basketball player George Mikan. All the info is to paint a picture of how special this man is to everyone who knows him. Thank you for your time and assistance.

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Date September 15, 2003
Name Bud Ridenour
Email Hobo2772@aol.com
City Triangle,
State Va.
Country

Comments Just had Cyber-knife done 7 weeks ago.. Going this Fri. the 19th for full body CAT scan to see how well it did…. My Dr. at Georgetown Univeristy, Wash,DC. did not tell me the whole truth about what was going to be done and I am upset with him over that. But I am thankfull for what they have done so far…

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Date September 13, 2003
Name Tony Teele
Email tteele@chemonics.net
City Washington
State DC
Country USA

Comments Considering using cyberknife at Georgetown Univ Hospital to reduce a tumor, caused by cancer (Waldenstroms, a form of Non Hodgkins Lymphoma) around the right kidney. Cyberknife attractive because of the higher doses possible without collateral damage. Would love to hear from anyone who has experienced anything like this application. Thanks.

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Date September 9, 2003
Name Kari Ricke
Email tricke@prairieinet.net
City Williams
State Iowa
Country United States

Comments Great site! I have an avm at T4 in my spinal cord and have not had it treated. I have been told about the cyberknife as a possible treatment option. It is helpful to have sites available like this one to further learn about this procedure. Thank you and God Bless!

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Date September 6, 2003
Name Deb Baxter
Email dbaxter1960@yahoo.com
City Dallas
State TX
Country USA

Comments So glad I found this site. My dad has a meningioma that was operated on in June of this year that is very large on his brain. He still has a significant amount remaining and they are talking about gamma knife surgery. So glad I found this as an option for us to consider and that there is one in Dallas. I am sendin this info to my uncle in Boston and my cousin is in residency at Stanford. This info is great and hopefully we will be able to have this done! Thanks so much.

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Date September 4, 2003
Name Earl Moran
Email earl@jrturnkey.com
City San Jose
State CA
Country USA
Comments

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Date August 30, 2003
Name Robert Nerling
Email Brunswickbob1937@aol.com
City Grovetown
State Georgia
Country United States

Comments I would like to learn more about the possibility of applying this concept to my cancer problem. I have pancreatic cancer whereby the tumor is external to the head of the pancreas but has grown up against the major blood vessels of the abdominal area. I have underwent a combination of chemo and radiation therapy and then chemtherapy only. I have been told that the C T scans show that the tumor has shrunk but not sufficiently to allow surgery in the "conventional" manner. My tumor markers have decreased to just under 600 to 126 (latest in August).

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Date August 22, 2003
Name Sandra Davis
Email verella911@yahoo.com
City Fountain
State Colorado
Country USA

Comments My son Daniel has a JNA tumor, he has had 7 surgeries and the thing is still there. Located between his carouted arteries, which makes it very difficult for surgery anyway, If this last surgery (June 23 2003) still does not remove it all the Dr. in Denver wants to do the gamma knife. Is this the same thing as the cyber knife???? Or is the cyberknife more up to date and better ?

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Date August 21, 2003
Name Valorie
Email valorieD@comcast.net
City Campbell
State CA
Country USA

Comments English interpretation for Antonia’s message: For six years I have had a Meningioma of the breast that has been cavernous for five years, I do not want surgery as the way to be cured. In Italy there is the possibility that a secondary treatment could be with the CyberKnife, but the wait lists are practically infinite…

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Date August 19, 2003
Name antonia
Email vincenzomorvillo@gtmi.softhome.net
City napoli
State italia
Country italia

Comments Salve! Da sei anni ho un meningioma del seno cavernoso e da cinque cerco il modo di essere curata non chirurgicamente. Quì in italia ci sarebbe la possibilità di essere sottoposta al trattamento con il ciberknife, ma le liste di attesa sono praticamente infinite…auguri

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Date August 17, 2003
Name bill buol
Email buol@clatskanie.com
City
State ore
Country

Comments A.N. treatment Stanford Oct-2002

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Date August 11, 2003
Name Diane Milewski
Email pddl43@hotmail.com
City
State Delaware
Country USA

Comments I had 5 cyberknife treatments for an agressive growing pituitary tumor that I had surgery for less than 3 years ago.I was left with residual tumor that was wrapped around my carotid artery and that was what continued to grow. I had cyberknife and in 2 months the tumor has shrunk considerabley already to the amazement of my doctors and myself. I am glad to have made this choice and hope my tumor continues to shrink or at least stay the same as it is.

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Date August 6, 2003
Name Rick
Email smudzo@aol.com
City Dublin
State Ohio
Country USA

Comments 4/03 cyberknife to L4,L5 for spread of melanoma. 6/03 NED. No side effects. Does anybody know of long term side effects?

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Date July 27, 2003
Name Marco Marin
Email marcomarin@cox.net
City
State CA
Country USA

Comments Great site! I have a 2.5cm Acoustic Neuroma on the left side, and I am interested in the Cyber Knife. I would like to hear more about the results of the procedure and the post-treatment side effects. Thank you.

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Date July 13, 2003
Name James Graybeal
Email trisjimgraybeal@webtv.net
City Virginia Beach
State VA
Country USA

Comments Keep me informed about the latest treatments available for Astrocytoma stage 3. Thank you.

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Date June 20, 2003
Name Thaye Young
Email rsytdy@altelco.net
City Grand Haven
State MI.
Country U.S..A.

Comments I have a Cervical AVM C3-C8. Have a lot in common with many of you. Great to see support on this issue!!!

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Date June 15, 2003
Name Jessica Zhang
Email hzhang@haas.berkeley.edu
City San Jose
State CA
Country USA

Comments This is a great website. Thanks for sharing your information! I am interested in stories on treating lung lesion using Cyber Knife.

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Date May 30, 2003
Name John Shipley
Email bodiejack@msn.com
City Crowley Lake
State CA
Country USA

Comments It is wonderful to see this group — and this website — up and running. I’ve had both traditional surgery and CyberKnife, and the latter was far, far superior.

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Date May 28, 2003
Name Angela
Email Angelsan95@aol.com
City Marco Island
State Fl.
Country US

Comments I would like to hear anything re: successful, and non successful cyberknife surgery, for meningioma. Thank you.

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Date May 25, 2003
Name sandi s
Email sudchiro@handynetworks.com
City waterford
State ct
Country usa

Comments Dr. Adler work on my chordoam in may of 2003

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Date April 15, 2003
Name Sheryl
Email Dooralert@yahoo.com
City Cape Coral
State FL
Country USA

Comments So glad to find this site. Would like to hear from anyone who has undergone cyberknife of a tumor on the 9th or 10th cranial nerve (as opposed to acoustic on the 8th). I have been a "wait and watch" patient over the past year and a half, but want to weigh my options. Thanks

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Date April 15, 2003
Name Flora McRae
Email flojo4444@msn.com
City Dutton
State Montana
Country USA

Comments Meningioma or Acoustic Neuroma of Cerebellopontine Angle (More likely Meningioma)

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Date February 23, 2003
Name Karen Grzelewski
Email Karen@nytimes.com
City New York
State New York
Country USA

Comments Great site and much needed. I had treatment at Stanford in September for a 2.7cm AN on the left side. So far, everythings great. Hearing in both ears still normal and life just continues to get better. Thank to you, Dr. Adler and to your WONDERFUL colleagues. I couldn’t be happier.

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Date February 18, 2003
Name KEN
Email bigcheese1@prodigy.net
City
State Texas
Country

Comments I’m a 58 yr old male that’s been diagnosed with AN 2cm in January. I’m very confused on my treatment options. I need to hear from patients that have had the Cypberknife treatment over 2 years ago or more. I would appreciate to hear what your symptoms were prior to treatment and what kind of symptoms you’ve experienced since treatment. Did you maintain hearing? Did the tumor grow? Where did you receive treament and by what Doctor? I would love to hear your story. Thanks, Ken

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Date January 29, 2003
Name Belen Ale
Email belenmex@yahoo.com
City Phoenix
State Arizona
Country Estados Unidos

Comments I"m Interested in cyber Knife procedure. I’m newly diagnose with 1.9 Acoustic neuroma in my left ear. Please contact me. Do you have a video splained about cyber machine or/and FSR treatment? Thanks. Belen

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End of Guestbook Messages