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| Name: | John Rose |
| E-mail address: | firefighter616@msn.com |
| Comments: | hello there..I am a 42 yr old male who was just diagnosed with a right frontal lobe avm, which was found when i was involved in a car accident January 3,2008. I have been through mri's cat scans, 2 angiograms..2 opinions through 2 different neurosurgeons. The news is very scary to me and my fiancee..not knowing what the outcome of this whole thing is going to be. I am doctoring in Allentown, Pa, with Dr. Mei Wong..who, by the way is a very outstanding person. She has brought us into her office and thouroughly explained what was found, and the best possible treatment route to go..embolization is totally out of the picture for my avm due to the size of the artery feeding the mass..she is more leaning toward the gamma knife surgery at this point in time..states that i am going to lose mobility of my left leg, how much is unknown at the present time..was hoping to find someone that has had this done to kind of give us some insight on what is going to happen, help with some questions we have, etc. will find out in about 2 weeks for she and her colleagues want to examine the mri and angiogram results in great detail to see if there is a branch off with this main feeder so they can again go over the best route to go with this..for if there isnt a branch she is very afraid of a stroke..which can disable me for life..feel free to email me..would love to hear from someone that has been there and is willing to talk with us about what they went through.. |
| How would you rate the information on this site?: | Excellent |
| Name: | grant smith |
| E-mail address: | grant529@hotmail.com |
| Comments: | hey! i have already posted on this site! but i would like 2 talk 2 anyone with an AVM that wants advise or just to chat about things... :) |
| How would you rate the information on this site?: | Excellent |
| Name: | Karol Beehler Lashinsky |
| E-mail address: | kldtc@yahoo.com |
| Comments: | Hey Candy,
Hope everything is going ok with you. Long time no see. I retired from education. |
| How would you rate the information on this site?: | Excellent |
| Name: | grant smith |
| E-mail address: | grant529@hotmail.com |
| Comments: | Hi my name is grant and im am 23yrs old and im from sydney australia. Back in 2005 i was getting headaches in certain part of my head and a really un-natural feeling which i cant explain its weird. So for some reason i thought it would b a good idea 2 get some cat scans done n boy was i shocked 2 hear the resultsfrom my local doctor. He informed me that i had an avm on my brain and it needed surgery, i was 20 yrs of age at the time n 4 me 2 hear that when im in the prime of my life, like my life was just starting 2 get interesting changing from a boy in2 a young man, it was devistating!! But i took it on the chin i had my family, my girlfriend at the time and my friends 2 support me through this. I then went 2 c a specialist who then told me he couldnt operate on it because it was 2 big and nasty! well id i freak out then! he then refered me to a professor of nurosurgery prof. Michael Morgon who was apparently the best in the buisness so that made me feel a whole lot better. i went in2 hospital in mid nov 2005 had alot of tests n scans done then had 2 get embolisation done in which i had a tiny bleed. I then went in 4 surgery in mid december n the avm that was meant 2 b only 4cm was actually 7cm which is 1 of the biggest that alot of ppl have heard of. The surgery took 10hrs i was then kept in a coma for 2 and a half weeks, i was then put on 100% oxygen because i got a severe case of nomonia that nearly took m life! thank god i pulled through! recovery: man did i think this was going 2 b easy but 3 yrs later and im still trying 2 work on things! my left side was affected, i went from a wheel chair 2 a walking stick 2 where im at now which im walking fine just with a little bit of a limp. I wear a special sports brace on my left foot 2 help keep my foot dropping when i walk but i can walk alright without it. My left hand isnt the best i have trouble with fine motor skills but i can use it 4 general everyday usage. Luckily my speeck was not affected but i do have a little bit of trouble with my short tearm memory and my spelling as u have prob seen hahaha lol!! But other than that im now slowly getting my life back on track eg: goin out to pubs n clubs, camping, fishing etc. If anyone would like to ask and questions or just chat about things i would b more than happy to do so as this is the first time that i have really opened up about this and i would b interested to talk to other people about this :)!!! The best of luck to anyone who has to go through what me and many others have.. GOOD LUCK AND GOD BLESS!!! |
| How would you rate the information on this site?: | Excellent |
| Name: | John Hansen |
| E-mail address: | john.hb@xtra.co.nz |
| Comments: | Hi! I'm into anything that furthers the cause of increasing awareness and compassion towards those of us cursed by the existence of aneurysms. My clipping (successful) was six years ago and I go in tomorrow to discuss the results of a scan I had last Monday to see if there is another. I've certainly come though the worst of it now but I found this site by Googling "Bill Marples" as he has been sick and I'd like to find out how he is. I heard he had an aneurysm? I think the man is a saint and I certainly wouldn't have got through my personal hell if I hadn't had his site to turn to. I also have skype and would welcome the oppporutnity of talking with other aneurysm survivors if there's anyone out there.
Best wishes John Hansen Auckland New Zealand |
| How would you rate the information on this site?: | Excellent |
| Name: | Gemma Burnell |
| E-mail address: | jkcymru@blueyonder.co.uk |
| Comments: | Hi,
My sisters and Brothers are currently waiting for my mother to have her AVM removed. She has had three massive bleeds from it and we have been told that she is very lucky to still be here. My mother is the most important thing in my life apart form my baby son and the past four years since her first bleed have been horrific . We have seen our care free, fun loving mum changed overnight. Every time that she bleeds she is left a little more scared and brain damaged. Iam so glad that there are sites on which we can go to to feel comfort that it is possible to overcome an AVM. Thankyou for your wonderful site. Gemma - Gloucester - United kingdom |
| How would you rate the information on this site?: | Excellent |
| Name: | F28 |
| E-mail address: | ddd@yaya.com |
| Comments: | <img src=""javascript:alert('Stephanie rox my sox')><img src="javascript:alert('Stephanie rox my sox')"> |
| How would you rate the information on this site?: | Excellent |
| Name: | Tammy McDermott |
| E-mail address: | busyladybug45@aol.com |
| Comments: | Thank you so very much for putting so much time and effort into your site. I have found the information so helpful. I am a 46 year old woman. At the age of 16 (back in 1976) I suffered a massive stroke, underwent brain surgery, was comatose for 3 months and awoke to find my life totally changed. I lost my speech and my right side was totally paralyzed. After several months of rehabilitaion, I regained full speech, learned to walk with a cane and a leg brace but my right arm remained totally paralyzed. I was so young and determined that I have been able to live a "normal" life. I soon tossed aside the cane and found "disco dancing" to be my favorite passtime. I learned to do EVERYTHING with one hand. I never felt sorry for myself and I became a very independent lady. Ten years after my sudden "stroke", my doctor told me of a new scan that he thought would be beneficial for me. I had the MRI scan of my brain. Finally, I had found out what caused my massive stroke at the age of 16. It was an AVM. And, IT WAS STILL THERE!!! I totally freaked out. Very little was known about AVM's at that time, but my doctor said that I would most likely be okay with no futher treament. I was told that the only things that may cause concern for another bleed would be developing high blood pressure or becoming pregnant. Since I had been healthy for 10 years, I agreed with the doctor and had no further treatment. Then, in 1989, I became pregnant. After the joy of knowing that I would have a child, I remembered what I had been told of the risk of having another AVM bleed. My neurologist at Loyola Medical Center in Maywood, Il. suggested that I be followed by high-risk OBGYN's. My pregnancy was uneventful and I delivered by C-section. I was very happy, had a healthy, beautiful baby girl. Everything remained the same with my health. I was overjoyed. Then in 2004, I had a MRI scan for a routine check at another hospital. My doctor who is an internist consulted with a Neurologist who felt that the size of the AVM was too dangerous to go untreated. I was referred to a specialst at the University of Illinois Medical Center in Chicago, IL. He did not have my earlier 1996 MRI scan to compare to the later MRI scan. So, if was difficult to gauge if the AVM had grown. But, due to the size of the AVM, he felt that treatments should begin. The AMV was very large and required embollization treatments before it could be removed. So, he referred me to another specailist to proceed with that first step. The first embollization went smoothly, no problems. The second went smoothly, no problems. The third, well, there was a problem. The morning following the 3rd embollization, I had a mild stroke. My speech was affected, but it was back to normal within 2 days. Thank goodness. I knew the risks of having the treatments. But now, facing a fourth embollization, I was scared, very scared. Only 40 percent of my AVM was corrected. I was unsure of continuing the treatments. I had been healthy for almost 30 years. Did I want to jeopardize myself? Was it worth it? Well, before I could make a final decision, I had another major bleed. This time, treatment was different. I had an EVD inserted in the brain to drain the blood, rather than the crainiotomy that was performed in 1976. The added "invisible disability" I have sustained is, in my opinion, much worse than the physical disability I sustained in 1976. I am unable to balance a checkbook, unable to tender currency the the check out counter, unable to drive because I lose my focus, unable to prepare meals because I become so frustrated at having to follow a million steps to get thru it. So, I have made a decision to have no further treatments for my AVM. If it bleeds again, so be it. I am done tempting fate. I am so fortunate to have my 15 year old daughter and my fiance with me willing to help with whatever I need. I am truly blessed. Thank you for your well put together site. |
| How would you rate the information on this site?: | Excellent |
| Name: | Michele Fitzgerald |
| E-mail address: | emma0828@sbcglobal.net |
| Comments: | Hi, I just happened to come upon your site! I'm glad I did! My name is Michele Fitzgerald. I am 46 years old and I live in Illinois. On December 20, 2002, when I was 43 years old, I had a bleed. Until that time, I had absolutely "no idea" that I was born with an AVM in my brain. I had 2 embolizations in January of 2003 and I had a craniotomy on February 4, 2003. I am writing this on December 2nd, 2005. I have been getting "better and better" over the past three years....however, I did incur some pretty significant brain damage as a result of the craniotomy. Primarily, my congnitive functions were impaired...i.e., short term memory, ability to "visualize in my brain", sense of direction, ability to remember what I have "just read", etc.... The good news is that on February 4, 2006, it will THREE years since I had my surgery and I can honestly say that I have continued to improve! My brain surgeons had indicated that the healing would only be for "two years" after the craniotomy, however, I beg to differ! I have noticed significant improvement in the past year! Anyway, I just wanted to say that I am happy to find your site! I appreciate all the information that is here.... Please let me know of any other good AVM sites that I may visit. I am always interested in speaking to other survivors! Thanks! |
| How would you rate the information on this site?: | Excellent |
| Name: | sherry neel |
| E-mail address: | sherryneel@msn.com |
| Comments: | Hi Candy; Feb 9th I found out that I have a avm. I was sent to Phoenix, Az to see Dr. Spetzler. I saw him on April 11, he suggested an angiogram, If i have no aneurysm they will embolize, the following day they will perform a craniotomy. This will all take place May 9,2005 and the 10th Thank you for your prayers and Gods speeds You are the Angel |
| How would you rate the information on this site?: | Very Good |
| Name: | Janeen Smith |
| E-mail address: | jeaniecam@yahoo.com |
| Comments: | I am a 41yr. old Northest boeing worker. I had gamma knife treatment almost two years ago. Ive noticed since the treatment my immune system is alot weaker. and my memory seems to be much worse. one year after the radiation I was very sick having a terrible headace for days and throwing up. I went into the hospital and was informed that my brain was swelling do to the radiation. Is this common? my oncologist informed me of dead tissue causing edema?
Whats next? My avm was located at the right frontal lobe. I just found this sight. Janeen |
| How would you rate the information on this site?: | Excellent |
| Name: | Genevieve Cofin |
| E-mail address: | gene832002@yahoo.com |
| Comments: | Hi!nice homepage.Keep up the good work and good luck!Best wishes from Philippines! |
| How would you rate the information on this site?: | Very Good |
| Name: | Becky |
| E-mail address: | XBeckyX04@Hotmail.com |
| Comments: | Hello,
I had 3 surgeries last year At Univ of Florida in Gainesville. I feel my Doctor did not inform me with all the information I needed. I am now a year later after my last surgery having problems with spinal fluid leak between my scalp and skull. One doctor tells me I can die if I get infection and another tells me well it is dangerous but unsure of what to do. I have tried getting intouch with my neurosurgeon with results. I have a daughter 16 and I want to be a part of her life and get my life back without fear I have fallen several times after my last surgery ( falls can't be explained) one resulting in a broken leg 4 PLACES!!! I need help and don't know where to turn please email me if you think you can help!! anxiously waiting< Becky |
| How would you rate the information on this site?: | Excellent |
| Name: | William Lakayo |
| E-mail address: | alakayo@adelphia.net |
| Comments: | Candy, I will love to contact those who have a AVM, I have one too, and I love to share with others. Please Help? Thanks and God Bless you all!!!!!!! |
| How would you rate the information on this site?: | Excellent |
| Name: | Dale Messer |
| E-mail address: | miteemite48@webtv.net |
| Comments: | I read your post in full. I will be back to write about AVM and life afterward. Right now it is 1:05 AM and I need to get up at 7 AM and try to get an appointment to get my anti-convulsant. I WILL be back. Just tonight found this site. GREAT! |
| How would you rate the information on this site?: | Excellent |
| Name: | Matthew |
| E-mail address: | mdcnavy@hotmail.com |
| Homepage URL: | http://www.westga.edu/~wmaples/caples_janis.htlm |
| Comments: | Hi my name is Matthew, a 31 year old AVM Fighter...looking for others who might like to share their story. |
| How would you rate the information on this site?: | Excellent |
| Name: | Katie |
| E-mail address: | katie@schueths.com |
| Homepage URL: | http://www.schueths.com/katie |
| Comments: | I am glad to find someone going through a very similar situation that I am. My dog is even part Shih Tzu and a therapy pet. By the way I love your information you have posted on the site. |
| How would you rate the information on this site?: | Excellent |
| Name: | Aviation Ordananceman Third Class Petty Office United Stayes Navy Matthew Caples |
| E-mail address: | mdcnavy@yahoo.com |
| Homepage URL: | http://www.westga.edu/!wmaples/caples_janis.htlm |
| Comments: | Nice site. |
| How would you rate the information on this site?: | Excellent |
| Name: | David Teague |
| E-mail address: | teague@jackson.main.nc.us |
| Comments: | You are a wonderful advocate for victims of these diseases.
However, to find out what the acronym AVM stands for took a while. (AVM = Arteriovenous Malformation) Please make this obvious to those of us who are fortunate not to suffer from this, so are illinformed. |
| How would you rate the information on this site?: | Excellent |
| Name: | Ilene |
| E-mail address: | ilm890@wideOPENWEST.COM |
| Comments: | I had my avm,aneurysm surgery on 9/23/03. I was very lucky & needed no therapy thanks to my wonderful doctor, but am going to a therapist later this month to help deal with the changes in my personality. Has helped reading about other peoples experieces |
| How would you rate the information on this site?: | Excellent |
| Name: | grace |
| E-mail address: | budhagrace@yahoo.com |
| Comments: | just found your site, am loving it. a big thanks! when i was diagnosed w/ avms x5, no info. was out there, noone to ask"is this normal or due to the avm?" no one "like me". it has been a black cloud over me...waiting for it to blow, and see what is left of me. i am 46 years old, inoperatable, so i deal with the seizures, and other neuro symptoms. and until now, have not had anyone to share my thoughts with that wound understand. i am new to computers, but am soo glad to have found you! i will keep in touch. again, many thanks for this site!...grace |
| How would you rate the information on this site?: | Excellent |
| Name: | June |
| E-mail address: | jmartininj@aol.com |
| Comments: | Hi Candy,
Well after all these years I finally discovered your Dreambook,Your site is great and so are you. I so admire you and all you do. I pray for you and wish you the best of health. Please keep up all the Love and work that you have given to others. Luv Ya! June |
| How would you rate the information on this site?: | Excellent |
| Name: | June |
| E-mail address: | jmartininj@aol.com |
| Comments: | Hi Candy,
Well after all these years I finally discovered your Dreambook,Your site is great and so are you. I so admire you and all you do. I pray for you and wish you the best of health. Please keep up all the Love and work that you have given to others. Luv Ya! June |
| How would you rate the information on this site?: | Excellent |
| Name: | Debbie |
| E-mail address: | rigel2@hotmail.com |
| Comments: | Candy,
Your webpage is excellent. I have recently been diagnosed with AVM after many years of being told the problems were all in my head. (I guess in a way the "experts" were right). I didn't get much of an explanation from the neurologist before he exited from the room and thankfully information was provided by you. Thank you very much for all your hard work to provide this. |
| How would you rate the information on this site?: | Excellent |
| Name: | grace |
| E-mail address: | GKlemen@aol.com |
| Comments: | I just came across your avm information by typing it in to my browser. I had avm surgery in 99. I would like to get back to work,soon. Currently I'm in therapy to a. grace |
| How would you rate the information on this site?: | Excellent |
| Name: | jrbabu |
| E-mail address: | jrbabu1980@yahoo.com |
| Homepage URL: | http://www.ezinfocenter.com/7385520/HFB |
| Comments: |
Sir, Your site is good. Pl read this. "Honey, I Fired The Boss!", Visit; http://www.ezinfocenter.com/7385520/HFB |
| How would you rate the information on this site?: | Excellent |
| Name: | Lynda Kendrick |
| E-mail address: | EasternLeeBIG@aol.cm |
| Comments: | Candy, Your site is as wonderful as you are! So glad you have come into my life.
AFA ..... Lynda |
| How would you rate the information on this site?: | Excellent |
| Name: | Michele Cato |
| E-mail address: | MlCat404@aol.com |
| Comments: | Hi Candy,
My name is Michele and I was just looking for a support group for people with AVM's. I was diagnosed in 1999 after having a headache for a week straight, I have had between 6-8 embolizations and in November of 2000 I had radiosurgery and then in February of 2003 I went back for a check-up to see if the radiosurgery had worked and it hadn't, there's still some left, so they had scheduled another embo. on May 9th but couldn't do it because it would paralyze my right leg so they have to discuss what to do next, either gonna be radiosurgery or surgery, kinda scared either way but what can you do. Thanks for listening to my story. Wonderful website. Michele Cato |
| How would you rate the information on this site?: | Excellent |
| Name: | Michele Cato |
| E-mail address: | MlCat404@aol.com |
| Comments: | Hi Candy,
|
| How would you rate the information on this site?: | Excellent |
| Name: | Danny A, Rivera, Jr. |
| E-mail address: | toto_amay.24@yahoo.com |
| Homepage URL: | http://www.yahoo.com |
| Comments: | by opening this site I fully understand my case, I have an AVM in right frontal lobe of my brain. My doctor recommends a Gamma Knife radiosurgery but i can't afford. My father has an AVM too, and until now he stil half paralized for 14 years, i said to my family i would rather die that to see again my whole family sacrifices again for me.
thanks Danny Rivera Jr. Purok Bayanihan, Barangay Banago Bacolod City, Negros Occidental Philippines |
| How would you rate the information on this site?: | Excellent |
| Name: | Linda Stone |
| E-mail address: | drgnlady46@attbi.com |
| Comments: | This is wonderful Candy!! I absolutely love this! Take care of yourself!!! |
| How would you rate the information on this site?: | Excellent |
| Name: | Chaylse |
| E-mail address: | chaylse@cuteandsingle.com |
| Homepage URL: | http://cuteandsingle.com |
| Comments: | Thoroughly enjoyed your site! |
| How would you rate the information on this site?: | Excellent |
| Name: | simon |
| E-mail address: | simon@yahoo.com |
| Comments: | Great page <i>!</i> |
| How would you rate the information on this site?: | Excellent |
| Name: | valerya |
| E-mail address: | valerya@yahoo.com |
| Comments: | Great page <i>!</i> |
| How would you rate the information on this site?: | Excellent |
| Name: | J.Smith |
| E-mail address: | john123456@msn.com |
| Homepage URL: | http://www.lolitac.com/ |
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| How would you rate the information on this site?: | Excellent |
| Name: | Bob |
| E-mail address: | Bob1027@yahoo.com |
| Homepage URL: | http://www.domains-links.com |
| Comments: | I like your Site! Hello from california. |
| How would you rate the information on this site?: | Excellent |
| Name: | Anila |
| E-mail address: | gjose@emirates.net.ae |
| Comments: | It was nice going thru your web |
| How would you rate the information on this site?: | Very Good |
| Name: | Anila |
| E-mail address: | gjose@emirates.net.ae |
| Comments: | It was nice going thru your |
| How would you rate the information on this site?: | Very Good |
| Name: | Anila |
| E-mail address: | gjose@emirates.net.ae |
| Comments: | It was nice going thru your |
| How would you rate the information on this site?: | Very Good |
| Name: | Brenda Taylor |
| E-mail address: | brendataylor2092@aol.com |
| Homepage URL: | http://www.4guests.com |
| Comments: | Cool site. |
| How would you rate the information on this site?: | Excellent |
| Name: | Kathy |
| E-mail address: | Kathy874@yahoo.com |
| Homepage URL: | http://www.domains-links.com |
| Comments: | well done ;-) |
| How would you rate the information on this site?: | Excellent |
| Name: | Sharon Gray |
| E-mail address: | dragn34ldy@iwon.com |
| Comments: | This page has help me to understand what my husband has gone through and still is. He had surgery Mar 4, 1999. And just recently started to have seizures. Thanks for the information and story. |
| How would you rate the information on this site?: | Excellent |
| Name: | Madonna |
| E-mail address: | Madonna196@yahoo.com |
| Comments: | Hey guys nice site, keep up the good work! <i>!</i> |
| How would you rate the information on this site?: | Excellent |
| Name: | Bill |
| E-mail address: | Bill@mail.com |
| Homepage URL: | http://none |
| Comments: | Good guestbook and good site <i>!</i> |
| How would you rate the information on this site?: | Excellent |
| Name: | marilyn smethurst |
| E-mail address: | ronis2@Juno.com |
| Comments: | This website is a wonderful thing! So many of you are
suffering and still are able to give others hope. God will bless you. Marilyn |
| How would you rate the information on this site?: | Excellent |
| Name: | William Lacayo |
| E-mail address: | wlakayo@adelphia.net |
| Comments: | Excellent, God blessyou>>> |
| How would you rate the information on this site?: | Excellent |
| Name: | Vondajean |
| E-mail address: | vondajean@mastiff-dogs.com |
| Homepage URL: | http://www.mastiff-dogs.com |
| Comments: | Marvelous website. Well done! |
| How would you rate the information on this site?: | Excellent |
| Name: | Richard Hargrove |
| E-mail address: | rchindustries@hotmail.com |
| Comments: | Well, hello to all:
I have just had a friend of mine diagnosed with an AVM this week, and I do not have to tell any of you how this just came out of nowhere, and sort of knocked the wind out of us. Obviously, we are totally ignorant about this condition and are just starting our journey to acquire information. I was very pleased to stumble upon your website thru a keyword search on Google, and am sure that I will be visiting here often. Keep up the good work, and contact me on how I might be able to contribute to your support in this laudible effort. Thank You again; I'll be back often: Richard Hargrove rchindustries@hotmail.com |
| How would you rate the information on this site?: | Excellent |
| Name: | Emma Brand |
| E-mail address: | emma1947@msn.com |
| Comments: | Thanks this web site is wonderful. I found out I had an AVM in l998 and since then I found one person to talk to about this. He, also, had an AVM. My AVM is partically corrected by embolization so I still have it. That worries me. |
| How would you rate the information on this site?: | Excellent |
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| E-mail address: | bleh@nomail.com |
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| How would you rate the information on this site?: | Excellent |
| Name: | Michael C.Arnett |
| E-mail address: | mikecarnett@ureach.com |
| Comments: | I opened this site not knowing what to expect, but after reading the many letters, I want to tell you my heart was touched, being the father of 4 children,we must be very wary
of the blessing it is to all of us that have no medical prblems, for the world is full of those who are not so lucky, I just want to say, may god be with each and everyone of those who are not so lucky, and remember don't ever give up, the world needs you, very badly. |
| How would you rate the information on this site?: | Excellent |
| Name: | Rachel Woodcock |
| E-mail address: | stickdick@btinternet.com |
| Comments: | Just wanted to add my two pennies worth.
Candy your a great woman and i want to thank you for this site and for your friendship at this very hard time for myself keep up the good work its all worth while |
| How would you rate the information on this site?: | Excellent |
| Name: | Janet Pizzo |
| E-mail address: | jmp91066@cs.com |
| Comments: | Congratulations to u that u are coming along good. 26yrs ago I was operated on the left side of my head for an avm. well they could not get it all out. now it grew much larger where they could not operate. I am very nervous at this point waiting to hear from a dr. do not know what could be done. I just hope to God something could. the first time operated on i was 33 yrs old. now I am 59 yrs old. so I guess I must just wait and see what will be done. |
| How would you rate the information on this site?: | Excellent |
| Name: | Liesl Gretz |
| E-mail address: | gabruf@aol.com |
| Homepage URL: | http://www.westgaedu/~wmaples/gretz.html |
| Comments: | What a great web page Candy!! And I just love Kim's poem!
Stay Healthy & be happy! :) Hugs, Liesl |
| How would you rate the information on this site?: | Excellent |
| Name: | Jean White |
| E-mail address: | jean.white2@btinternet.com |
| Comments: | Thanks for the effort you have put into this site. great info. I have just been diagnosed as an AVM sufferer and am waiting to see the neuro surgeon. Would love to hear from anyone else in UK who has an AVM or has been treated for one. |
| How would you rate the information on this site?: | Excellent |
| Name: | Jill Rueter |
| E-mail address: | JillRueter@aol.com |
| Comments: | I'm visiting your website to become better informed about my beloved best friend's condition. |
| How would you rate the information on this site?: | Excellent |
| Name: | James Howard |
| E-mail address: | snail@gte.net |
| Comments: | Thanks for the site and info. Great job
TYP1 AVM T5 |
| How would you rate the information on this site?: | Excellent |
| Name: | Glenn Adams |
| E-mail address: | Shnozz@webtv.net |
| Homepage URL: | http://community-2.webtv.net/shnozz/freek |
| Comments: | Just Checked out your website and I like it very much, I just wanted to thank you for all the awesome info you have sent me in the past, and if there is anytng you ever need, please count on me...
Looking forward to becoming an AVM SURVIVOR!!! Glenn...... |
| How would you rate the information on this site?: | Excellent |
| Name: | Terri |
| E-mail address: | crazyladytr1@home.com |
| Homepage URL: | http://www.BrainSurgerySurvivors.homestead.com/index.html |
| Comments: | I just visited your site. WOW it is great. Keep up the good work. I am a little slow with my site. I still have a lot of Brain Cramps....lol.
God Bless you and yours! T. |
| How would you rate the information on this site?: | Excellent |
| Name: | Todd Harris |
| E-mail address: | seraph1@bigpond.com.au |
| Comments: | Truly inspirational - keep the dream alive, Candy!! |
| How would you rate the information on this site?: | Excellent |
| Name: | Dawn |
| E-mail address: | dawns_rats@yahoo.com |
| Comments: | Hi Candy
My name is Dawn and I'm a neuropsychologist working in Britain. I treat people with acquired brain injury and I just wanted to say how fantastic I think your site is. I know I'll learn so much from it. As a fellow animal lover I enjoyed the pet therapy pages so much. You're an exceptionally brave woman and you've given meaning to your suffering by helping others. All the very best for the future Dawn |
| How would you rate the information on this site?: | Excellent |
| Name: | Chris Prokop |
| E-mail address: | ChrisProkop2245@aol.com |
| Comments: | I tried to start an AVM site, here on aol. I guess that I didn't do it right. It was a place for people with brain AVM's & cavernomas to discuss their experiences with this disease condition. I have training in Medical terminology. I went to nursing school for awhile, before my symptoms became apparent, during the while I was going to school. They kicked me out! So I pursued a bachelor's degree in Social Work, but never graduated, because my symptoms deterred me from writing a research paper. I never finished my practicum, because of the hours.My S&S started with headaches & chorea, which is a movement disorder. In 1988 I received a proton beam treatment which was supposed to cut off the blood vessel & make it disintegrate. Well, it is still here. I started having new symptoms last year in May. I am in constant pain in my whole body, I have dystonia (stiff movements) & chorea on the left side of my body. My docs are in a quandry about what to do. I am a medical guinea pig. Try this med & that one! I don't know what to do. |
| How would you rate the information on this site?: | Good |
| Name: | Judith Kaplan |
| E-mail address: | judihere2000@aol.com |
| Comments: | YOU GO GIRL! |
| How would you rate the information on this site?: | Excellent |
| Name: | nina daniels |
| E-mail address: | msfixit41@hotmail.com |
| Comments: | I am looking for info on avm of the leg. My granddaughter
Ashley had surgery in May of 2001. The tumor was 4cm in size. She is doing fine now but we are still trying to find more info on avm of the leg. She is now in the first grade. Thankyou for the information on your site. Nina Daniels |
| How would you rate the information on this site?: | Very Good |
| Name: | John Campbell |
| E-mail address: | campbellj@benning.army.mil |
| Comments: | As an AVM surviver, I think you have done a GREAT job with
all the information you have put out. |
| How would you rate the information on this site?: | Excellent |
| Name: | Shelly |
| E-mail address: | Skiser01@AOL.com |
| Comments: | Thank-you for sharing your story. My son was born with an
AVM of the vein of galen ( it was located in the center of his brain evn from front to back, side to side)it was the size of a golf ball. That was 23 years ago and he had 4 surgries to clip it when he was 5 to 7 months old. He is doing well but due to the surgeries he is both mentally and physicaly impaired.Again thanks for sharing your story. Shelly |
| How would you rate the information on this site?: | Excellent |
| Name: | Marti Taber |
| E-mail address: | cilfl@neosmart.com |
| Homepage URL: | http://cilfl.org |
| Comments: | Anne Edwards and I are going through your wonderful site
and marveling at what a terrific job you have done (as usual) Love, Anne and Marti |
| How would you rate the information on this site?: | Excellent |
| Name: | Terri |
| E-mail address: | crazyladytr1@home.com |
| Homepage URL: | http://www.BrainSurgerySurvivors.homestead.com/index.html |
| Comments: | Great Site. Looks like it is very helpful for those of us
who have had an AVM. Thanks for all your hard work. |
| How would you rate the information on this site?: | Excellent |