GuestBook2001

BTC GuestBook 2001

Topamax can be Life Threatening? I am a 23yr old female and have been on Topamax for 2 years now to prevent grand mal seizures.This is after having been on other anti-seizure drugs initially, which i could not tolerate their side effects.These other drugs were Dilantin, Klonopin, Tegretol. Treatment has always been only one drug at a time.I went from one to the next over the last three and a half years. I have suffered from the terrible fatigue, inability to think, and hair loss,but the most damaging to my health is my weight loss. My normal weight prior to the Topamax use was 125 lbs,which was ideal at 5'5". Im know at 95 lbs. and a bag of bones. I have no appetite and no desire to eat. Do other people on Topamax long term end up this way? I don't know what to do. My dosage was reduced one time by the doctor and I had a terrible seizure.I am so fearful of stopping the Topamax for seizure will be certain,as the doctor has confirmed.I am also scared that continued weight loss could be fatal. Is there any way to resolve this dilemma?
missy <m3333_AT_bellatlantic.net>
tucson, az - Friday, December 28, 2001 at 12:34:15

My mother was found to have a brain tumour early this week. We know nothing about it at this point other then it is not on the part of the brain for cognitive skills. We are currently attempting to decide whether to have a biopsy or just go in and remove it. She is 64 and in relatively good health. Because the tumour lies on a portion of the brain that controls her motor skills for her left side, there is some concern of residual numbness or paralysis on that side. So, she is going to go through "mapping" which scarily means she must be awake during a portion of the surgery. I would love to hear from anyone who can tell me what to expect. how awful is it to be awake during surgery and how much pain which she suffer post-operatively? Thanks
Marybeth <mbscriv_AT_aol_DOT_COM>
Red Bank, NJ - Sunday, December 23, 2001 at 22:50:18

I'm 16 and I've noticed double vision. Does that mean I have a brain tumer? I also have various other symptoms similar to a brain tumer. I went to my doctor 6 months ago and he said it is stress. Brain cancer is one of the main things on my mind right now. I'm afraid to talk to my parents about this though. I'm very close with my family and they have never told me anything they've noticed unusual about me, but I feel like I have a tumer inside. I feel like I used to be smarter than now. Should I just stop worrying about it and wait until something more noticeable happens?
Ricky <Rickycool2004MV_AT_webtv.net>
St. Paul, MN - Friday, December 21, 2001 at 14:52:37

I WAS DIGNOSED WITH ANAPLASTIC ASTRO CYTOMA [3] ON OCT 28th 2001.
RON GRAHEK <C/O heartleaa_AT_sonnet_DOT_COM>
sonora , ca - Wednesday, December 19, 2001 at 15:45:22

My Granddaughter has been operated on eight time for a malignant brain tumor and thus far has survived, with 90% of the cancer removed while admisitering radiation to hopefully destry the remaining 10%. My son said that they might not continue the Chemo this time thinking the terrible side affects, whin would probably prolong her life 6-8 months longer. My son is leaving the decision up to my granddaugther. She is 15 and should decide her life and death with the consultation of her doctor. My son and daughter-in-law will back my granddaughter up and not try to change her thinking. The decision will be made in two weeks. Please, Please help with any insight or possible known alternative medical advise.
Lawrence Nadler <Lreldan_AT_aol_DOT_COM>
- Sunday, December 16, 2001 at 16:04:33

My Father (68 yrs) was recently diagnosed with GBM. He had surgery and is beginning radiation. We are considering BCNU Chemo and have heard a lot about Termador. I'd appreciate any comments/experiences on this path, especially with Temador. Thank you.
Cliff Merz <octember.cm_AT_verizon.net>
Safety Harbor, FL - Thursday, December 13, 2001 at 18:19:46

Hello, My mother was just diagnosed with gbm and given a very short time for survival. Besides the fact that all of this is impossible to take in emotionally, I have been unable to find anyone who can or will tell me what we, as caretakers, need to know in terms of the progress of the disease through her body. I am at a loss and I know from reading your comments that many of you have already been in this position. Any information would be appreciated. Thanks in advance for any help and thank you as well for your willingness to share these immensely intimate stories.
Kristen <kbbk_AT_gbis_DOT_COM>
Virginia City, Nv - Wednesday, December 12, 2001 at 02:41:11

my mother was diagnosed with glioblastoma multiforme. very very devastating to our family . they believe they extracted 99.9% of the tumor through surgery, with only residual cells remaining. we have decided to try radiation and temodar. has anyone heard on any promissing phase III clinical trials?
Jason Robert <ivoryco_AT_hotmail_DOT_COM>
Denver, CO - Thursday, December 6, 2001 at 20:02:58

Hello.....Knowing n reading all these cases of tumorz have made me realise that i m not alone....My mother was diagnised with a PITUATARY TUMOR(MACROADENOMA)in May 2001,She had vison loss,weight loss due to Thyroid level change,dull n alot more symptoms.We immediately took her to India for treatment as we dnt have the proper facilities here. Now its almost six months since the Tumor was removed which was a Benign one removed from the Nasal Path ....we went for checking after 3 months n everything was ok no sight of tumor growth seen. She is on thyroid Medications now, her eye sight has improved i.e her right eye which was mostly effected. She has become very sensitive.....she ussually gets headaches,n gets worked up....n sometimes complains that the eye which had lost the sight is iritating her..... I wud like someone to help me or tell me the symptoms after the operation. Is there a posssibility for the Tumor to come back????.....wat precautions shud be taken ???..
Nureen <nureennathoo_AT_yahoo_DOT_COM>
Daressalaam, - Monday, December 3, 2001 at 11:30:14

MY BROTHER HAS ANAPLASPIC OLIGOASTROCYTOMA GRADE 4,WITH 3 to 12 MONTHS TO LIVE,CAN ANYONE OFFER ADVICE, WOULD LIKE TO HEAR FROM YOU IF YOUR IN THE SAME POSITION.
ND BROW <pilchard145_AT_aol_DOT_COM>
MANCHESTER, - Saturday, December 1, 2001 at 20:13:34

I would like to thank the people that started this bulletin board. I think it is so great, and may God bless all of you.
Melissa Sonsikoski <RSONSIKOSKI_AT_prodigy.net>
Burbank, IL - Thursday, November 29, 2001 at 21:53:58

My daughter was diagnosed with an anaplastic oligodendrioglioma in Feb 97. We have still had NO REOCCURANCES. PRAISE THE LORD. I would love to hear from anyone who has or had an ANAPLASTIC oligodendrioglioma.
Paula Johnson <browes1_AT_mindspring_DOT_COM>
Lacey's Spring, AL - Wednesday, November 28, 2001 at 20:09:34

My Husband has recently been diagnosed with Gliomatosis Cerebri. Anyone with ANY information pertaining to this type of tumor, please urgently respond. God Bless.
Isabelle Harcourt <BobandBelleH_AT_aol_DOT_COM>
Dillsboro, NC - Saturday, November 17, 2001 at 14:41:47

This is in loving memory of Ted Hartman, 69, passed 6/25/01 from a glioblastoma multifore, gradeIV. He was diagnosed 11/99 and gave a very valiant effort to beat this awful disease and out of it I received 12-14 months of time with my Dad I will always cherish, thank you Loma Linda University Medical Center for the wonderful care you provided for my Dad and Vitas for the help of granting him his last wish and that was to die at home. The nurses whom Vitas(Hospice)provided us with were angels sent from heaven. Thank you, thank you, thank you.
susan mcgreal <s.mcgreal_AT_verizon.net>
Upland, Ca - Thursday, November 15, 2001 at 23:24:55

My husband has never been sick. He had all his yearly tests being a healthy truck driver. Jan 28th his legs would not move and we rushed him to the hospital. He was given six months to live after a biopsy showing gleoblastom level 3. He died June 11th four and a half months later. After 35 years of marriage and a healthy man. I don't know why God took him now. But there was nothing that could be done for him. I took care of him for those four and a half months. Now I am alone. He did indeed die within the 6 months they gave him.
Susan Bomberry <smbomb_AT_home_DOT_COM>
steger, il - Wednesday, November 14, 2001 at 00:38:58

my mum has been told that she has grade 4 glioblastoma brain tumour i can not bare to see her so unhappy she is such a kind and loving person always thought of everyone else first this is just not fair that she has to be so unhappy. i can not even think of being without her .is anyone in the same situation out there? i think only the people who has faced this sort of sadness can understand what others in this situation feel. is there anyone that is a long term surviver of this cancer out there ,love to here from you. only heard sad news to now need some inspiration! something to aim for.
carole <paulcarole_AT_longashton.fsworld.co.uk>
bristol, - Friday, November 9, 2001 at 17:19:27

I am interested of finding help and assistance to my neighbors 6 yrs. old son who was diagnosed with brain tumors. The depressed family don't have the financial resources to provide the medicine and cure for the child's ailment. I was trying to help in my own way to find any kind-hearted organizations who is willing to help this poor child. I would very much appreciate a response on this query. Thank you.
Elson Tan <elson_tan_AT_hotmail_DOT_COM>
Caloocan, MM - Friday, November 9, 2001 at 11:20:09

I am 13 years old and i have a sister who died of cancer when she was younger i wanted to understand more about mallignant brain tumours thank you very much for helping me.
al <happy_al_no1_AT_hotmail_DOT_COM>
london, - Tuesday, October 30, 2001 at 11:48:25

I would like to hear from anyone that has baroreflex failure
Jeff <oakhurst55_AT_aol_DOT_COM>
- Tuesday, October 30, 2001 at 01:56:55

I would like to hear from anyone that has baroreflex failure
Jeff <oakurst55_AT_aol_DOT_COM>
- Tuesday, October 30, 2001 at 01:56:22

i have seen meny colleges the in side and out side of them but i would have to say so far the American colleges are still the cleanest out of Canada and the states.
Scott Phillips <zyxwvutsrq3_AT_hotmail_DOT_COM>
Lansdowne, Ont - Sunday, October 28, 2001 at 14:38:54

Looking for any information on esthesioneuroblastoma. Specifically, someone who has had it or knows someone who does. Are there any support groups? Thanks for any help you may have.
Linda <losbon_AT_hotmail_DOT_COM>
Marion, NC - Thursday, October 25, 2001 at 21:41:15

Family member had surgury and has glioblastoma brain tumor, searching for after surgery treatment options.
Benr R Rodriguez <BRRODCS_AT_MSN_DOT_COM>
Colorado Springs, CO - Thursday, October 25, 2001 at 07:14:41

cousin dx with left parital cavernous angioma. Please if there is anyone out there with any information, suggestions, support, surgical recomendation, hospitals, Doctors (prefer in Canada) Ont if possible. She is only 22 and has a wonderful future ahead. Please help if you can by emailing me ASAP thank you so very much. kim
kim <nursebetty711_AT_hotmail_DOT_COM>
Sudbury, Ont. - Tuesday, October 23, 2001 at 16:10:59

I found your page while surfing the web. Just wanted to stop by, and tell you I really enjoyed my visit. It is so nice to come across a site that is easy to navigate, and not full of flashy banners. Great Job!!!
Alan <alanshepherd_AT_faithcdc_DOT_COM>
Douglasville, GA - Saturday, October 20, 2001 at 10:16:33

I really appreciate what you've done here. While my homes for sale in Tampa, I've been spending a lot of time searching for Brandon real estate on the internet. Believe it or not I found this site by searching for "florida real estate". Imagine that! What does a Tampa realtor have to do with education? Go figure. I guess those Tampa web design people need to learn a few things yet. I'm was hoping to find Fish Hawk Ranch but instead I found Riverview Florida. All Florida real estate seems to be so expensive and there's so many virtual tours it will make your head spin. The internet is a great tool for communicating with others.
Anyway. Enough rambling about me.
Good work guys! Great site!
Chip Blockly
- Thursday, October 18, 2001 at 14:35:19

I just thought I would like to take a miniute and say that, Everything happens for a reason. My Grandmother died of this in 1996. She was my insperation my hope and my life. What helped me in recovering from her death is I stared writing in a jurnal. I would start it off "Dear Honey" That was her name. Tell the person that is ill that you love them as much as possible. Make sure that they know you do. Its hard, be brave. God Bless.
Tabatha Grigg <qtp2tgirl69_AT_aol_DOT_COM>
Yuma , AZ - Monday, October 15, 2001 at 21:38:35

Cool Site. Wish there were more like this one on the Net.
Ron Reisebericht
- Sunday, October 14, 2001 at 18:40:27

I AM 26 YEARS OLD AND 6 MONTHS PREGANAT. IT HAS BEEN 1 YEAR THAT I HAVE PAIN IN THE BACK OF MY HEAD AND PRESSURE IN MY RIGHT EAR AND RIGHT SIDE OF THE HEAD. THE DOCTORA SAY THAT IT IS TENSION HEADACHES AND STRESS. I CANNOT BELEIVE THAT. MY RIGHT SIDE FEELS TOO WEIRD. ANY COMMENTS ON THIS.I WOULD REALLY APPREACIATE IT. THANKS
GINA <ginamartucci_AT_hotmail_DOT_COM>
MONTREAL, QC - Wednesday, October 10, 2001 at 16:05:35

My 7 yr. old son,Devin goes in for his Bone Marrow Transplant on October 15th 2001. I'm asking anyone who reads this letter, to say a pray for a full and fast recovery for my son. I believe that pray is all we have. So PLEASE say a prayer for my son. He could be in the hospital for up to 3 months. Thank you for taking the time to read my letter. Kathy Murphy
Kathy Murphy
Toledo, Oh - Wednesday, October 10, 2001 at 12:14:52

My 7 yr. old son was diagnosed with Glioblastoma Multi-form, the day after Easter 2001. My only advice is to tell them the truth but not the whole truth. Keep your sense of humor, no matter how hard you want to cry. Take any help that you can get. Lean on your FAMILY, that's what the are there for. Don't worry about things you have no control over,worry when you have a reason but not about what could happen. TRUST YOUR DOCTORS BECAUSE NO ONE HAS THE ANSWERS THAT WE ALL SO DESPERATLY NEED!!!!! Don't judge how well someone is by how they look, Judge them by the heart, the spirit and their mind. laugh when you can and cry when you need the realease. PRAY, PRAY, PRAY AND PRAY SOME MORE!!!! Be grateful for everyday (good or bad) Thank you for a place to release some of my feelings. Kathy Murphy
Kathy Murphy
- Sunday, October 7, 2001 at 11:35:45

My mother was first diagnosed with mental depression,dementia,I refused to accept it,An MRI showed different.A biopsy will be done 10-9-01. I needed more information, and I appreciate this site. some times, the Doctors talk over our heads, and this site is simple enough to understand Thank-You.
Barbara K. Markle <aliascindy_AT_hotmail_DOT_COM>
Hunker, Pa - Saturday, October 6, 2001 at 07:07:53

My 35 yr old husband was dx in May with a grade 2 oligoastrocytoma. He had surgery in June where approx 85% was removed. He is currently taking Accutane for treatment. Would love to hear from others in similar situation, especially spouses who are dealing with this. We have two young children and I'm feeling a little stressed about the whole situation.
lesley armstrong <wfalwa_AT_msn_DOT_COM>
atlanta, ga - Friday, October 5, 2001 at 14:03:46

First I would like to say that we all are very blessed to still have or children or parents with us.Things could have happen worse but the God we serve is able.I would just like to say that my son is 7 years old with a mild case of cp. And when he was first born the doctors said that he would never be able to walk or talk.My son talks like a sailor and he started walking when he was 5 years old.but I feel that I am blessed. The problem that I do have is that we can't seem to stop the seizures.There not as bad as they use to be.But it seems like everytime we go to Church my son get's very limp.I think that it is due to the lights that we have in our church.but if anybody ever need to talk please feel free to send me an email.May God Bless each and everyone of you.
faye cain <fayecain1_AT_excite_DOT_COM>
LOUISVILLE, ky - Wednesday, September 26, 2001 at 16:25:00

First I would like to say that we all are very blessed to still have or children or parents with us.Things could have happen worse but the God we serve is able.I would just like to say that my son is 7 years old with a mild case of cp. And when he was first born the doctors said that he would never be able to walk or talk.My son talks like a saiolr and he started walking when he was 5 years old.but I feel that I am blessed. The problem that I do have is that we can't seem to stop the seizures.There not as bad as they use to be.But it seems like everytime we go to Church my son get's very limp.I think that it is due to the lights that we have in our church.but if anybody ever need to talk please feel free to send me an email.May God Bless each and everyone of you.
faye cain <fayecain1_AT_excite_DOT_COM>
LOUISVILLE, ky - Wednesday, September 26, 2001 at 16:23:33

I would just like to thank all of the staff in the Ellison Bldg on the 17th Flr. for helping ease this horrific difficult time. Our daughter has been diagnosed with a brainstem glioma and there hasn't been a staff member or volunteer that didn't make us comfortable. I would like to especially thank the nurses (Sue, Cathy,Kim,Roxy), social workers and play specialists (Marilyn & Ellen) Without the playroom my daughter would not have had a safe haven. The doctors were and are extremely helpful and caring - my special thanks to: Dr. Benz for his care in listening and diagnosing my daughter. Dr. Rosenberger whom made me feel very comfortable with the use of his layman terms. Dr. Medlock & Dr. Butler for a successful shunt surgery & follow-up. Save the best for last. Thank you Dr. Ebb & Dr. Tarbell & Dr. Brian. Thank you and God Bless all the staff in radiology and of course the ones who make it easy for my little Maria to sleep - the Great Anesthesists (sp?) (Dr. Nick, Dr. Sydney, Dr. Sarah, Dr. Sally, Dr. May & Dr. Brian) Thank you.
Mary Shea Amaral <manmar_AT_mediaone.net>
Arlington, MA - Tuesday, September 25, 2001 at 17:36:25

hello. I am 33 years old and I am a 20 years survivor of a 3rd ventricular teratoma. Mine was approximately 90ccs of tissue. I had, as one of doctors, Dr. William Chandler at the Uof Michigan. He did my first crainiotomy and he has placed all three of my shunts. My other doctor was Dr. Bennet Stein, at Columbia's Presbyterian Medical Center, in New York. Dr. Stein said that my tumors was one of the largest ones he had ever experienced in his practice. He actually videotaped my operation and used me as a seminar for medical students. My first 2 surgeries were done in Dec 1980, my third was done in June of 1981, my fourth was done in September 1982 and my fifth was done in september 1984. I thought everything would be good, but it was not. In late 1996, my second shunt failed.It was misdiagnosed as 'serotonin syndrome' because I was taking meds, at the time to help control my mood disorder. I went into my first coma in february 1997. I came out of the fourth coma in August 1997. When I came out, the doctors thought that I would be a vegetable for the trest of my life but they were wrong!!! I have now been out of my comas for 4 years plus!!! I had to relearn how to walk, talk, eat, go the bathroom and everthing else. I am now back in school, trying to finish my undergrad in social work, so I can go on to medical social work and work with children and adolescents facing tumors, cancer or any long-term illnesses. I got a second chance at life and I am not going to waste it!!! I am not sure why this happened to me, but after yesterdays terrorist attacks, I am more motivated than ever to try and help out!!! Anything that you could pass onto me in the form of ideas of how to go about helping people in the best way, would be greatly appreciated. Thank you, Bradley Horton
Bradley Horton <bradley5600_AT_aol_DOT_COM>
Battle Creek, mi - Wednesday, September 12, 2001 at 10:50:20

My 20 year old daughter was DX in feb/2001 with a diffuse pontine brain stem glioma, that is malignant and inoperable. She had a course of radiation & following up w/Temodar. At this point she is very well and feels good, except for the tiredness and stomach problems from the Temodar. We are told her prognosis is not good. Also that this type tumor normally strikes young children or older adults. She is being treated at UAB Medical Center in Birminham, AL. Would like to communicate with anyone that is familiar with this type of tumor and treatments. Thanks!
Debbie Farlow <debbiefarlow_AT_jinright-turner_DOT_COM>
Montgomery, AL - Monday, September 10, 2001 at 13:39:40

test
cjo
- Saturday, September 8, 2001 at 13:51:51

Teresa's Storey WHY? has it Taken me three years to find you all out there!. Probably because I did not have a computer before. It is 11:27pm Teresas in bed and a good job to as after reading all your stories I feel less alone, although now moved to tears.Which is also a good thing as you all now! or should, so thankyou. I am the husband of Teresa who I met at 16yrs old and have now been together fot 14yrs.I am a very lucky man she is very beautifull and kind a person who lights up every room. Then three years ago without any warning headaches or sickness I awoke one Sunday morning to Teresa having a fit, now our lives instantly changed in every way. It was Astro Cytoma Grade 3 which I now a lot more about now! (strange how you catch on quick isnt it!). Now after Surgical de-bulking - Radio - 2nd Surgery after return & Chemo its being gone for 11 months without any treatment. To look a Teresa now you would not beleive she has gone through so much (She looks fab). Every six months she has the MRI Not a good month for our stomaches!and thats it now isnt it? No its not is it, but we go through day after day now not even thinking about it (but it's there all the time isnt it) We live our lives to the full go on lots of great holidays (but it's there all the time isnt it) I feel that we are just waiting for that fit twitch shake headache.She has just had her 30th birthday and swan with dolphins in Florida tell that to all the statistics. Sound angry dont I. No im not just so happy she has done so well and her oncologist and Surgion are as well. But I want answers to questions no one not even the above can give because I now I now everyones different. Some one once told me that even when things are good dont sit back look for that cure and keep it in you back pocket ready! The stories that I have read tonight have reminded me not to know sit back, but what can I do now? I have done all the resurch into treatments and Teresa is having Reflexoligy which I now sounds mad but Im convinced has helped in some way. Life is good now but does everyone go through this (state of nothing happening?)or is that it we have all that adrenelin running when things are bad Teresa fighting and me giving support and it does not feel right now! I feel I should give you all some advice from our experiences and that would be this. Learn as much as the doctors about your condition which may not be a lot as its so specialised. Dont wait for answers ASK? Make sure the doctors know your name all the time and not 1464/T Smith Astro ect < Big Mistake Medical World !!!!! Make sure the treatment is the best for you double check with other Doctors around the world you can you know they are only doctors not world leaders, and find out there names and call them by them and they will remember yours. I am thinking of you all right now, knowing we you are only a mouse away its a warm feeling and I to thank this site for that. Love and best wishes everyone right if you wish just to say Hi from Phil in England. Better go to bed now! PS Sorry about any bad spelling
Philip Smith <PhilandTeresa_AT_aol_DOT_COM>
Weston S Mare, - Thursday, September 6, 2001 at 19:35:10

I had a colloid cyst of the third ventricle removed in Nov. 2000. I am currently recovering from this surgery, and would like to correspond with anyone who has experienced this same surgery. Please e-mail me at discododi_AT_yahoo_DOT_COM. Thanks
D. Corcoran <discododi_AT_yahoo_DOT_COM>
Lexington, KY - Monday, September 3, 2001 at 20:43:49

I think there should be more information presented in newspapers and journals to the general public about headaches and diagnosis of meningeomas by Ct scans and MRIs. instead of just more drug therapy and OTC product distribution.
D. Baer dcb_AT_aol_DOT_COM <D. Baer dcb_AT_aol_DOT_COM>
Seaside Park, NJ - Sunday, September 2, 2001 at 18:32:06

My husband passed away on July 4, 2001 as a result of a very aggressive glioblastoma multiforme. He was 58. Unfortunately, it was too late for him in spite of having had surgery and thirty radiation treatments. Thank you so much for this wonderful site. Finding it was a godsend to me as it sustained me throughout my husband's illness and still does. My prayers and my thoughts are with all of you.
Marie
Ontario - Thursday, August 30, 2001 at 23:14:18

my dad was diagnosed with a tumor on the spine after two years of real bad pain. He is now undergoing surgury to remove some bone to loosen up the nerves which the tumor has grown and is pressing on. It is a very trying time for our family because no one until now has done anything.In my opinion they are hoping for cancer so they can start chemo and radiation. If all fails he will be going for another operation through the front this time. Both of the operations we were told are quite serious. They figure the tumor originated from the tumor on his lung, and he also now has one on the pelvic. It was great reading this information. Thank you and please think of our family at this time
karen bentley <karinbee_AT_hotmail_DOT_COM>
- Monday, August 27, 2001 at 06:06:46

I have a friend who has an aggressive brain tumor. She has been told recently that she has only eight months to live - at the absolute maximum. The doctors say that there is nothing that they can do. I have heard great things about American doctors - please help. We have not got much time. Please could you send as much information about treatment, anything to the above email address. Please. Yours, Sincerely, Gemma.
Gemma Denley <nick_AT_denley.fsnet>
- Sunday, August 26, 2001 at 19:48:33

At the age of 14,I discovered I have anaplastic lymphomia. I was mad and yet very sad. Thinking that my life was over,I thought about what chemo would do to me.The discovery of this disease changes your life instantly. I thought it was the end of mine. All I could picture was my life in one big flash,and my mom having a nervous breakdown. When you are told you have a life threating disease you want to get mad and ask God why. Why me? Why now and this day. But you learn that we all have obstacles in life which we have to get over. And I myself will survive. That is what I tell my self every morning when I get up and look in the mirror. I believe that 90 percent is attitude and 10 percent in the medication to surviving. This part of a speach my son gave to his freshman class this week. Let me tell you he is so strong and positive. His was caught in the earliest stage there is and has a very good report.
Skiler Schmitz <kai_x_2_AT_yahoo_DOT_COM>
Bokchito, OK - Saturday, August 25, 2001 at 17:45:16

In loving memory of my wife, Sylvie Labrecque, whose best years were taken from her. She passed away on July 21st, 2001 at 48 years old, victim of brain and spinal tumours of VHL disease. May she rest in peace.
Ian
Trois-Rivières-Ouest, Qc - Wednesday, August 22, 2001 at 21:36:21

I had a brain turmor removed from the third ventrical of my brain in 97. Any one who would like some support and prayer-please contact me.
Frank Armentrout <FSarmentrout_AT_aol_DOT_COM>
Winifrede, wv - Monday, August 20, 2001 at 23:01:39

i have a brain tumor i have gone through 40 radation treatments plus chemo. there is nothing more they can do now except watch it grow. surgery was never an option. now it is in gods hands. really it always was his call. but to be absent from the body is to be present with the lord. thank you jesus for dying on the cross for me.
mattie precise <drivingmsdaisy53_AT_aol_DOT_COM>
tn - Saturday, August 18, 2001 at 17:29:04

I had undergone brain tumor surgery for the second time very successfully. The surgery went on for ten hours and I was hospitalized for three weeks. I am still trying to recuperate and making great progress. I am receiving OT, PT and nurse help at home thru home health care services. I am hoping to run behind my son very soon! I am praying for all those of who are going thru Bt surgery or treatment for full recovery. My very special thanks goes to my honorable neurosusrgeon Dr. Cerullo, md and his wonderful caring excellent team. Bowman Rehab is great place for all here in IL.
autismas <autismas_AT_hotmail_DOT_COM>
chicago, IL - Friday, August 17, 2001 at 19:30:13

13 year survivor and more
Tim Herron <chaplain_AT_overcomers.org>
Sugar Land, TX - Friday, August 17, 2001 at 16:32:09

Very informative, although too late to help my mother. Thank you for the information though.
Theresa Bailey <tbailey785_AT_aol_DOT_COM>
Fort Riley, KS - Friday, August 17, 2001 at 13:48:41

Nice site...
fonts <noqjlse_AT_the-stock-market_DOT_COM>
- Wednesday, August 15, 2001 at 21:40:41

Recently diagnosed with "dysembryonic neuroepithelial tumour" (sp?), aka DNT or DNET, in the parahippocampal gyrus of the left temporal lobe (finally, an explanation for 26 years of seizures). Any info or advice from others with similar experience (surgery?) greatly appreciated. Thanks in advance
Tris <tris_AT_bea-connect_DOT_COM>
London, - Wednesday, August 15, 2001 at 06:42:31

Testing
CJO <PageServant_AT_Neurosurgery.MassGeneral.org>
- Monday, August 6, 2001 at 10:53:59

My friend's child, a 2 years and 10 months old girl, is suffering from astrocytoma. She live in Hungary. Please email me if you have any infomation can let the girl get good treatment in USA with limited money. Thanks!
John Ger <780583_AT_itri.org.tw>
Hsinchu, - Saturday, August 4, 2001 at 11:41:17

Hi, I was recently diagnosed by MRI/MRA with a low grade glioma in my left temporal lobe inferiorly. Also, what is hemosiderin deposition? I would sincerely appreciate some information on this matter. My physician has not returned my calls and I am due for a follow-up MRI/MRA on August 8, 2001. Would it be possible for you to define this diagnosis for me? Thank you, Patti Lewiss Age 66
Patti Lewis <pattiannie_AT_hotmail_DOT_COM>
Huntington Beach, CA - Wednesday, August 1, 2001 at 17:30:06

trying to get as much infomation , to help our 29yr old son.(astrocytoma)
John and Sue <pheonix_AT_ains.net.au>
Melbourne, vic - Monday, July 23, 2001 at 07:52:47

On June 22, 2001, my Mama was diagnosed with Glio Blastoma Multiforme (4 tumors). 8 weeks earlier the CT was "NORMAL". On July 13, 2001, she passed. How can something so horrible be undetected and move so quickly?!
Sandra Hughes <sandrakmh_AT_hotmail_DOT_COM>
- Wednesday, July 18, 2001 at 19:04:10

Hello everyone, My name is Shawna and I am trying to find information on my son. On June 21st this year he was diagnosed with a low grade pilocytic astrocytoma. It was removed on june 25th. He was hospitalized untill the following friday and then sent home. He is doing wonderful. On our follow up appointment We were told it was a low grade, completely incapsulated, tumor so no more treatment is needed at this time. They said that they will do follow up MRI's every three months for a while. Is this the practice of your hospital as well? I am a pediatric RN and I work at Childrens Hospital of Los Angeles in the ER trauma Center. I have seen children with reaccurances, how often does that happen? Please I am desperate to relax and allow my son to live a normal life, I just want to know that we are doing the right thing by just watching. thank you, Please email me if you have any info, or ideas. thank you, Shawna Mcclanahan and family.
shawna Mcclanahan <shawna19_AT_pacbell.net>
gardena, ca - Sunday, July 15, 2001 at 11:26:47

my sister has a melignant grade 2 astrocoma brain tumor she had part of it removed 3 years ago but it has since returned and it has affected her speech and her walking and her right arm is paralized, please, please if any one out there has any info on this terrible tumor and what to expect down the road, please get in touch with me. thank you Jan Ross
jan ross <tulsabraska_AT_aol_DOT_COM>
tulsa, ok - Sunday, July 8, 2001 at 19:11:10

Cavernous angioma? Any ideas?
tara marsland <taramarsland_AT_yahoo_DOT_COM>
cochrane, ab - Sunday, July 8, 2001 at 12:53:08

My mom recently died suddenly from
tara marsland <taramarsland_AT_yahoo_DOT_COM>
Cochrane, ab - Saturday, July 7, 2001 at 23:47:59

is it true that young, healthy children should not have direct close contact with patients undergoing chemotherapy and radiology. Thanks
jan <janp_AT_guard_DOT_COM>
- Friday, July 6, 2001 at 15:28:14

This is such a wonderful site for info. Would like to talk with anyone who has undergone surgey for Chordoma. One year ago they did a right frontal temporal lobe crainiotomy to resect my.It had grown around internal cartoid artery. So far know signs of new growth. Still have small piece remaining on back side of artery. I still experience problems that were there from the begining. Would like to hear from someone who has been there already to see if these type of problems are as common as my doctors say they are. Then of course there are the that should not be happening with no further explanation.Please e me with any info you have
Vicky <jellolady610_AT_mindspring_DOT_COM>
Suffolk, Va - Thursday, June 28, 2001 at 20:10:14

I am a patient of astrocytoma.I had a operation a year ago and now I am fine.I have a lot of treatments to cure this disease. Wellcome the same patient communicate with me.
daglus <daglus_cn_AT_sina_DOT_COM>
baicheng, jilin - Wednesday, June 27, 2001 at 09:37:23

my friend is a patient of astrocytoma (which is Kernohan No:two). he has had operation for a year,untill now the astrocytoma has not grow again.what I want to know are :1:the average time from the opertation to the astrocytoma grow again.2:the ratio which the astrocytoma grow again.3:the ratio of death or the lifespan at kernohan No. two. 4:the examining method that can find out the astrocytoma grow again.5:how about the efficiency of test of tumor-marker,does it can give the correct answer about theastrocytoma grow again or not. I look forward to receiving your reply
daglus <daglus_cn_AT_sina_DOT_COM>
baicheng, jilin - Wednesday, June 27, 2001 at 09:22:34

Thanks for all the information.
Jill Miller <toolgirl_AT_tooldealz_DOT_COM>
West Chester, OH - Monday, June 25, 2001 at 23:23:59

I was dx with a grade 2 astrocytoma/oligodendroglioma when I was 27, I am now 30, and doing good so far. I would like to hear from you, if you have the similar dx. Thanks Julie
JULIE HANKINS <HANKINSJULIE_AT_cs_DOT_COM>
CEDAR HILL, MO - Sunday, June 24, 2001 at 21:00:40

Diagnosed with Prolactinoma in 98. Started Dostinex and had one successful pregnancy. I have had 2 miscarriages since and now I am scheduled for my third surgery to clean up scar tissue and cysts. Has anyone experienced ovarian cysts and pains since taking Dostinex? I never had any reproductive problems before. Any comments would be appreciated.
LeAnn Lee <lrlee_AT_mail_DOT_COM>
Vicksburg, MS - Sunday, June 24, 2001 at 16:38:45

My Frien has a benign brain tumour received radiotherapy and a shunt some years ago. Now suffers severe epilepsy. while she recognizes everyone she cannot remember what she done two minutes ago.Any advice on this problem or is it irreversible
James Wills <jwills_AT_indigo.ie>
- Saturday, June 23, 2001 at 15:24:34

Searching for information on neurofibromatosis. One son died from and a daughter with tumors. Don't know what to do
Alise D. Williams <adaw7758_AT_ureach_DOT_COM>
Capitol Heights, MD - Friday, June 22, 2001 at 19:23:19

Congratulations for your Homepage!!!
Deborah Yonezawa <deborayonezawa_AT_yahoo_DOT_COM>
Boca Raton, FL - Tuesday, June 19, 2001 at 23:01:18

First off, God Bless all of you out there! May He give you peace, strength and hope. I lost my mother to cancer in 1993 (within 2 weeks of finding out she had cancer, it took her). Now a dear friend has a brain tumor. He has had 3 surgeries in the past 3 years, radiation (gamma knife) did nothing, he won't do chemo, and they may start him on Temador. Does this drug work? All willing to share experience with it, please contact me at Sandster59_AT_com-pair.net. Also anyone who worked in agriculture industry with pesticides and now have brain tumors, please contact me.
Sandy Murphy <Sandster59_AT_com-pair.net>
Palo Cedro, CA - Wednesday, June 13, 2001 at 21:20:10

My brother has a rare form of Ependymoma named subcutaneous sacrococcygeal myxopapillary ependymoma. He has undergone surgery and has got recurrence now. Repeat surgery is too dangerous, and we are thinking of using IMRT. Anyone has experience with IMRT on ependymoma. I would appreciate your comments.
M. Javad Aman <amanm_AT_ncifcrf.gov>
Frederick, MD - Thursday, June 7, 2001 at 15:30:26

HI, MY MOTHER HAS ASTROCYTOMA. FIRST TX WAS RADIATION FOR 36 TIMES. NOW SHE IS ON TEMADOR. ANY WHO SPECIALIZES AND WHAT MEDICAL CENTER IS #1 IN THE TREATMENT OF THIS TYPE OF CANCER IN THE WORLD. TX PLEASE RESPOND.
MARIE BRIGGS <THOMASBRIGGS123_AT_HOME_DOT_COM>
NEW BALTIMORE, MI - Saturday, June 2, 2001 at 16:16:10

I would like to say that dr.liebsch is the best all around my husband's has cordoma of the brain and dr. liebsch is the only dr. that know the most about this and I trust him over any doctor that my husband has i even call him to ask him for advice and i feel better when i talk to him because he knows what to expect. would love to hear from someone that knows this doctor.
RUBY WILLIS <jvance_AT_kih.net>
carrollton, ky - Wednesday, May 30, 2001 at 20:47:18

looking for someone who has had treatment at harvard for cordoma of the brain.
ruby willis <jvance_AT_kih.net>
carrollton, ky - Wednesday, May 30, 2001 at 20:24:48

I am interested in clinical studies for my son. He has a grade 2 astrocytoma in the brain stem. He is receiving proton at Loma Linda, But if it is not effective, He does not want Chemotherapy.My oldest son died at the age of 21 from glioblastoma multi forme. My tther son is 22 years old. If there is anything that anyone knows of, Please email me and let me know
Debbie Barz <suncalgrl1_AT_aol_DOT_COM>
Big Bear Lake, Ca - Monday, May 28, 2001 at 18:57:53

my sister anne has just been diagnosed with glioblastoma multiform, had surgery, about to start radiotherapy. She has 4 small children, would like to hear from anyone who has defied the odds & is still going strong - any ideas? Regards Alison
alison stannard <alison.stannard_AT_lloyds_DOT_COM>
- Thursday, May 17, 2001 at 09:17:52

i have a glioblastoma brain tumor with 6 months to live, i am 26 years old and i have 2 small children. i would like to talk to anyone in a simular situation.
marcie poirier <foxypanhd_AT_yahoo_DOT_COM>
brockton, mass - Wednesday, May 16, 2001 at 12:24:43

Temozolomide (Temodar)Chemotherapy Temodar was approved by the FDA for treatment, however it does not work. My sister has been taking Temodar for 6 months and it did nothing to slow down her tumor. She is on her third surgery and will be taking BCNU Chemotherapy.
Melinda <newcoh_AT_aol_DOT_COM>
NV - Wednesday, May 9, 2001 at 02:11:43

I just popped in to have a look around as our 3 year old son has just had surgery to remove a glioma from his brain which has areas of grade four present. He is receiving intensive chemotherapy at the moment, I have to confess I am too afraid to search the internet to find out information about this particular type of tumour and the prognosis.
Sarah Palk <sarah.palk_AT_ntlworld_DOT_COM>
Leics, - Tuesday, May 8, 2001 at 14:24:01

I lost my 44 yr. old daughter to glioblastoma mf gr.IV on Nov.l5, 2000.She was a beautiful young woman with a son in college at Johnson/Wales Univ. in R.I. and a l4 yr. old daughter - If I can help anyone who has this disease or has a family member who has been diagnosed, please contact me - I would like very much to help other familes who are fighting this horrible disease.
Berta L. Wolford <BLouConlon_AT_aol_DOT_COM>
London Mills, IL - Friday, May 4, 2001 at 21:26:57

I am now 37 yrs old I was born with a brain tumour which was removed at 3 weeks of age they also removed part of the brain to make sure they got it all it was 15cm in diam I have lived a virtual normal life but for the first 5 years of my life i lived a very protected life I must be careful that if I get the flu and cough I loose oxygen to the brain as air chambers were damaged by the tumour, my spinal cord had to be repaired at the time I now have fluid on the brain which has formed over many years I live life to the fullest now life is precious I donot have many friends ones i do have are precious I hope other people read this and know there is hope of living a normal life . Ivan Finden
Ivan Finden <finden_AT_iprimus_DOT_COM.au>
Toowoomba, Queensland - Tuesday, May 1, 2001 at 03:25:42

you only wanted to play football and finish college, until one day you fell from the hoops playing basketball and had a siezure. We later found out you had a brain tumor. Despite all the medical technology god needed you. You fought to live, to be here with me, to find your nitch in life. You are the kindest most extrodanary person who never thought of youself even in sickness. I'll remember you always and thank you for always being there and teaching me so much till the end and because I couldn't face the fact you were dying I'll say it now I miss you and always will and you will never know how much I love you. I wait for the day to see your face, feel your touch, and hear your laughter. In Loving memory of Wade Cameron Spies (Tiffany Kilgore)
Mrs. Tiffany Kilgore <czykilgres_AT_aol_DOT_COM>
kansas city, MO - Monday, April 30, 2001 at 22:17:30

My INFANT SON HAD BRAIN TUMOR REMOVED IT WAS THE SIZE OF A GOLF BALL AND WE WERE TOLD THEY THINK HE HAD IT WHILE I WAS PREGNAUT WITH HIM.THE TUMOR WAS IN PITUATARY GLAND BEHIND OPTIC NERVE THANK GOD HES NOT BLIND.IM A SINGLE MOM AND ITS HARD ENOUGH TO PAY BILLS NO JOB JUST LIVIN OFF WELFARE BUT ATLEAST MY BABY IS HERE AND IT WAS CANCEROUS TUMOR SO IT COULD COME BACK IF ANYONE IS GOING THROUGH WHAT I WENT THROUGH PLEASE FEEL FREE TO EMAIL ME OR JUST EMAIL ME ANYWAYS
CHRISTINA CLARK <DREAMGIRL20001D_AT_AOL_DOT_COM>
LILLINGTON, NC - Sunday, April 29, 2001 at 15:08:50

My mother was diagnosed with a glio blastoma grade 4 tumor 15mths ago. She has total left sided weakness and numbness, and also suffers brain swelling and seizures. She has undergone surgery, radiotherapy, and chemotherapy, with little success. Has any one got any advice for me or stories they could share. As a family we feel very demoralized. Caroline Bradbury
Caroline Bradbury <cbradbury_AT_fsbuisness.co.uk>
Staffs, - Sunday, April 29, 2001 at 14:56:33

looking for alternate therapy in the case and event that a contigency plan is going to be needed to destroy this oligoastrocytoma tumor.
lawerence brown <ifish4life2001_AT_yahoo_DOT_COM>
shirland, il - Monday, April 23, 2001 at 15:26:54

MY SON IS 18,HE HAD AN OPERATION 2 MONTHES AGO,TUMOR WAS OLIGODENDROGLIOMA GRADE II(LEFT PRECENTRAL TUMOR VERY NEAR TO MOTOR CORTEX)TUMOR WAS REMOVED COMPLETELY.HE IS TAKING 5*200 MG CARBAMAZEPINE PER DAY WHICH THE CONCENTRATION WAS 7 IN HIS BLOOD.HE HAD TWO SEIZURES AFTER OPERATION,ONLY RIGHT HAND AND LEG,ABOUT 10 SECONDS.HE IS STUDYING CONSTRUCTION AND CONTINUES GOING TO COLLAGE.PLEASE INFORM ME IF YOU KNOW MORE ABOUT THIS TUMOR,AND HOW WE CAN CONTROL SEIZURES.WE ARE ADVISED TO GET CONTROLLED MRI.THANK YOU M.S.KESHAVARZ
M.S.KESHAVARZ <mskeshavarz_AT_hotmail_DOT_COM>
tehran, - Monday, April 23, 2001 at 02:39:14

JUST FOUND OUT MY COUSIN HAS AN ASTROCYTOMA,ANDI WOULD LIKE ANY HELP I COULD GET. I AM HIS PRIMARY CAREGIVER.
Margaret Stewart <turkey_AT_sprint.ca>
arnprior, on - Sunday, April 15, 2001 at 19:03:22

i'm am 32 years old man from switzerland. in october 2000 i was dignosed with "gliomatosis cerebri". it's a very rare desease. that's why i'm looking for other persons - worldwide - who suffer under this desease. i'd like to get in contact and correspond with a person who's concerned by this. i'd like to know which course the desease takes by that person, which symptoms she can observe (for example if she has seizures) and how she feels. i also would be very glad if i could get to know someone who knows someone having this kind of brain tumor. please reply to the following adress: andiemch_AT_hotmail_DOT_COM
emch <andiemch_AT_hotmail_DOT_COM>
- Sunday, April 15, 2001 at 14:09:36

Thank you so much! This information will really help out my report!
Rob "Ender" Holmes <Merlin4667_AT_aol.om>
LaGrange, Ky - Saturday, April 14, 2001 at 18:53:35

My son had a spinal ependymoma removed 2/99, because of delayed diagnosis regrowth is starting. His surgeon & team were wonderful and there was no temporary paralysis or loss of feeling or control. Anyone who has had one removed or who knows where I can get more info on these please contact me.
Judy <jfavata_AT_earthlink.net>
- Thursday, April 12, 2001 at 22:04:14

I had a large craniopharyngioma removed in June. I have since gained 40 pounds that has finally seemed to have stabalized. My endocrinologist says this is common.Has anybody else experienced this? if so did the weight gain disapear? I also had major bouts of insomnia before the surgery. I'm currently required to work shift and have lots of dificulty adjusting the shift changes along with lots of fatigue. I have not slept well since the surgery. Can anyone relate to this?
Skip Thompson <maryt_AT_hereintown.net>
Frostburg, MD - Thursday, April 12, 2001 at 02:04:44

Hello Dr. Dooling. I stumbled across your web sight while doing some research. Hope you are keeping well. Please give our best to everyone. Kevin (6'3") graduates high school next year! Take care of yourself and thank you for your kindness and dedication. Happy Easter. Regards. Cathy, Chris, Kevin and "Michael" H.
Catherine Hiscock <chiscock_AT_implantsciences_DOT_COM>
Wakefield, MA - Tuesday, April 10, 2001 at 16:30:35

Hi...My Name is Nancy Sinton and I live in Subury, MA. Until recently I knew very little about brain tumors because I never knew anyone who had one. Then within a short period of time I encountered many examples of people who have experienced a brain tumor or who know someone who has. At a Celtics game in early March I met a 12 year old boy from Richmond, Vermont who was in Boston for treatments for a brain tumor. Shortly after that I learned that one of my close friends from Sudbury, Annette Garabedian, had surgery to remove a brain tumor. At a recent gathering of my high school friends from Hingham, MA I learned that an aquaintance is living with a brain tumor that she developed during her last pregnancy. I've heard many other stories of people who know other people who have either passed away, who are dealing with living with a brain tumor or who have successfully recovered from surgery. I also recently heard about a fundraising program called "The Brain Tumor Society's Ride for Research 2001". The bike ride, on May 20, is for cyclists of all ages to ride either a 25 or 50 mile route through Boston's Western Suburb's. The goal of the ride is to "raise money to help find a cure for the second leading cancer killer of children and the third leading cancer killer of young adults while supporting patients and families coping with this disease". I have decided to combine my love of cycling with helping a great cause. In order to participate in the "Ride for Research 2001" I need to commit to raising money. WOULD YOU BE WILLING TO HELP ME RAISE MONEY FOR THE BRAIN TUMOR SOCIETY? If so, please contact me at my email address at SINT1_AT_aol_DOT_COM. I will give you more information. You can also get more information on The Brain Tumor Society from their website at www.tbts.org THANK YOU!
Nancy Sinton <Sint1_AT_aol_DOT_COM>
Sudbury, MA - Tuesday, April 10, 2001 at 15:43:16

Many Thanks to all the wonderful Doctors at Mass General that filled me with inspiration and hope. Grazie molto per Doctor Antonio Chiocca, Doctor Cosgrove,Dr.Hanjanee, Dr. Ralph, Dr.Andrew, And All the rest who brought me back home to my children and husband. I am forever Grateful Maria Antonietta Pennacchio(Annette Garabedian)
Annette Garabedian <AAgarabedian_AT_aol_DOT_COM>
Sudbury, Ma - Monday, April 9, 2001 at 10:34:18

Hi,I would like any information about Craniopharyngioma, as my brother was diagnosed and operated on in January 2001,He is still recovering and in rehabilitation, his short term memory is very bad and sometimes he thinks weird things like he is in jail or he has just been discharged from the army. He has never been in the army.He thinks the doctor has told him he can go home and gets very annoyed when we wont take him home with us. They say this confusion or whatever it is should pass in time and we are very hopeful that it will.But is there any one out there who has come through this or knows off any one could you please forward me any information as we are really worried about him. He is 44yrs old. Thanks for taking the time to read this. God Bless you all. Monica
Monica <ekhoury_AT_vtown_DOT_COM.au>
Sydney, NSW - Saturday, April 7, 2001 at 07:05:25

testing
Deb Bushkie <DebBus39_AT_aol_DOT_COM>
Robesonia, Pa - Friday, April 6, 2001 at 18:21:06

Hi, I just found this web site, it's unfoutunate but comforting to know there are so many others out there dealing with this terrible disease. My 64 yr. old mother was diagnosed Jan 2001 with a gr. 4 Glioblastoma multifore She had surgery and they are 99% sure they got the whole thing. She has just completed 6 weeks of radiation and next week will start Temodar. She is doing pretty well other than the tirdness and most of all her sadness. She is so tearful. She has had to deal with so much these past few months,giving up her own place & moving in with me and my family,having to quit a job she loved,and not being able to drive, read or speak well. It is so hard on all of us, I try to do all I can to keep her spirits up, Thank goodness for my two boys, they are her lifeline. If there is anyone out there that can give me any info on Temodar or anything else it would be greatly appreciated!
Deb Bushkie <DebBus39_AT_aol_DOT_COM>
Robesonia, Pa - Friday, April 6, 2001 at 18:11:26

4/April 2001. Intressting to read a lot of information around Brain tumor. I didn't know so much about these matters. I know anyway since two weeks that I have one. But next week on Wednesday the surgery in Lund Sweden will take this tumor away.I'm little more confident after reading your reference materials. Thank You!
Willem von Hebel <w_von_hebel_AT_hotmail_DOT_COM>
Ljungby, - Thursday, April 5, 2001 at 16:53:38

I had a benign meningeoma, discovered in Feb, 1994. I had some headaches the previous summer, followed by seizures in the fall and winter. The week prior to seeing the neurologist, I began having double vision when looking to the left. The doctor sent me to have an MRI, which then showed the tumor behind the left eye. I was lucky to have the surgery done by an excellent surgeon: Dr. Laligam Sekhar. The tumor was wrapped around the internal carotid artery and the nerve activating the abduscens muscle (pulling my left eye to the left). It took three surgeries to remove the tumor and bypass the artery. The surgeries were successful in removing the entire tumor. The nerves activating the muscles for lifting the left eyelid and moving the eye have not recovered, leaving me with the eye closed. I have not recovered feeling in the left side of my face. I have told friends that the tumor could have been discovered in my autopsy, so the closed eye and numbness are very small consolations. Between my family and friends, I had wonderful support in going through this experience. I now go by the saying of Clint Eastwood's Dirty Harry character, "A man's got to know his limitations."
Bill Bedenbaugh <willyt_AT_netcrafters.net>
- Sunday, April 1, 2001 at 09:39:20

I stumbled onto this site while researching for hemagiomas. On January 9th, I discovered that I had two menningiomas, one fairly small and the other about an inch dia. and a half inch thick located in the upper left rear qaudrant of the brain. I underwent the craniotomy on 22Feb2001 at NW Hospital in Tucson AZ performed by Dr Thomas Scully. The surgery lasted 3hours and was discharged 24 hours later. The surgery scared me a little and was concernd with the slight probability that the tumor was malignent (which it was not). Due to a family history of blood clotting the biggest fear was post surgery embolisms which came true 9 days later. There was very little post surgery pain and did not require any pain medications in recovery and at home. I am available to anyone who wants to talk about this.
Larry Prudic <ulandum_prudic_AT_hotmail_DOT_COM>
Sahuarita, AZ - Saturday, March 31, 2001 at 00:05:59

I really enjoyed the information on pituitary tumors and pregnancy. I had surgery about a year ago in Dallas, 7 months after the birth of my third son. We've been just fine since.
Linda Gould <RGOULDLAW_AT_aol_DOT_COM>
McAllen, TX - Monday, March 26, 2001 at 21:51:28

My had a brain tumor.Medullablastoma,when she was six years old.having radiation and chemo.She will be 21 in august.she is doing great. no sing of tumor coming back.she is a very special young lady.
Ronda Boxler <boxler5_AT_hotmail_DOT_COM>
Windham, ohio - Friday, March 23, 2001 at 22:26:22

My brother, an adult of 28 years of age has been diagnosed earlier this year with Hydrocephalus,doctors believe he aquired Hydrocephalus from some kind of bacteria or parasite from meat he ingested.He has had a VP shunt put in this year and has had a terrible time since. Anyone with any useful info to our family please email.
Molly <felix200201_AT_msn_DOT_COM>
- Monday, March 19, 2001 at 20:29:23

I have a partial pituitary tumor removed(Acromegaly). I then had radiation on the remaining portion, which is wrapped around my carotid artery. I have been on dostinex 1.5mg twice a week. I am now going to start on Sadostatin injections. I wanted to talk to anyone who has taken this medication. Also, If I can pass on any info, I would be happy to. Thanks and, God bless you, Michele
Michele H. Hutchinson <