I am so glad i have a AS degree and took anatomy /physiclogy , etc so i can understand medical termology ,,,i suggest new chordoma people educate themselves...
6536
Melanie
mellimelwith...
Jul 22, 2012 2:26 am
Every doctor i see ( even unrelated stuff) i ask for copies of all tests, scans , etc, this is helpful because you never know what is important. When i go to a...
6537
Jessie Smith
jess4019
Jul 23, 2012 1:01 am
Thank you Melanie and Norma for your responses. My doctor is Brian Geister, and he is the medical director of oncology at the Integris Cancer Institute of...
6538
kiwiclivalchordoma
kiwiclivalch...
Jul 23, 2012 5:35 am
Hi Ishbel I have had transoral surgery for chordoma where they opened up the face (12 years ago). I can be nasal at times although I am not sure if this is...
6539
kiwiclivalchordoma
kiwiclivalch...
Jul 23, 2012 5:42 am
Hi Diane, I also have a duplex kidney! It was discovered when I was 4 (I'm now 31) because I was peeing lots, but turned out it was a psyhcological issue and...
6540
lynn faulkner
aletheamoonq...
Jul 23, 2012 2:03 pm
Hi Jessie  Saw your email and wanted to say I am from the UK where clivia chordoma is not something we hace much knowledge about. I had my surgery last...
6541
capndenny787
Jul 23, 2012 3:30 pm
I want to first thank everyone who responds to my questions. I'm sorry I don't answer all of you, but I do read what you have to say and value your knowledge...
6542
Manager
chordomamana...
Jul 23, 2012 3:53 pm
I think you are doing the right thing, as at Mass General there will be strong consideration for the proton radiation after surgery and at Johns Hopkins you...
6543
kiwiclivalchordoma
kiwiclivalch...
Jul 24, 2012 11:02 am
Hi, Just wondering who else is a long term survivor? I had a Chordoma diagnosed 1997, surgeries in 1999 (temporal) and 2000 (transoral with fat graft inserted...
6544
Bill
retsgt1531
Jul 24, 2012 11:22 am
Sacral resection ,December 1998,no radiation,although yearly check-ups with MRI.Sorry though not in New Zealand,but would Love to visit one day! Bill New York...
6545
dansfae@...
dansfae
Jul 24, 2012 11:43 am
Hi, I was diagnosed in 1995. Had a craniotomy on June 8 of that year. Just passed 17 years. Never had further treatment. My last MRI was late last summer: no...
6546
nadouni74@...
naycordova
Jul 24, 2012 12:05 pm
Hi Bill! Long Time no see. How have you been? How is everything in NYC? I will be coming up this October for my 2 yr mri. Hope we can catch up. Take care of...
6547
Stacy Halling
stacyhalling
Jul 24, 2012 12:51 pm
Hello. I'm not a long term survivor by my mom is. She was diagnosed in 1990. Surgeries in 1991, 1992, and 1993. Proton Beam radiation in 1994. Gamma Knife...
6548
Richard & Trudy Franco
francorichard16
Jul 24, 2012 1:19 pm
Hi I was diagnosed in March 2000 with sacral chordoma in New York. I had 151/2 hr. surgery in August at MSKCC. Radiation followed the next January. In ...
6549
egita.berele@...
egitaberele
Jul 24, 2012 5:04 pm
I was diagnosed in September 2002. Clival Chordoma. No any treatment. No progress. Keeping healthy lifestyle. MR once a year. Egita Berele Latvia...
6550
desti625@...
ladonna.hoyt
Jul 24, 2012 5:21 pm
Prudence, Congratulations on your long survival! :) I was diagnosed in September of 2002. So it's been almost 10 years. Had transoral surgery in November...
6551
desti625@...
ladonna.hoyt
Jul 24, 2012 5:24 pm
Wow Stacy, your mom has survived for 22 years since her diagnosis! That's terrific! I hope she will keep going on and on! LaDonna In a message dated...
6552
shozgirl@...
shoozgirl
Jul 24, 2012 5:31 pm
Hello All: I am sorry to report there is a fellow patient who is not doing well. He had surgery, Proton Beam then a recurrence and was on trial Chemo. Only...
6553
Kirsten Bowman
lenislupus
Jul 24, 2012 5:31 pm
I met a woman here in FL last Wednesday at a chordoma seminar, she was diagnosed at 18-19 and she just turned 50. :) 31 years, very inspirational! -Kirsten On...
6554
shozgirl@...
shoozgirl
Jul 24, 2012 5:33 pm
what kind of chordoma seminar??! **~~**~~**~~**~~**~~**~~** Together We Will Cure Chordoma. Visit _www.Chordoma.org_ (http://www.chordoma.org/) to invest in a...
6555
Kirsten Bowman
lenislupus
Jul 24, 2012 5:35 pm
It was just an information seminar, Josh Sommer was there speaking. At the University of Florida Proton Therapy Institute. It was interesting! On Jul 24, 2012...
6556
Stacy Halling
stacyhalling
Jul 24, 2012 6:29 pm
It really is. Thank you. She's definitely a fighter. ________________________________ From: "desti625@..." <desti625@...> To:...
6557
Kirsten Bowman
lenislupus
Jul 24, 2012 6:34 pm
On Jul 24, 2012 1:35 PM, "Kirsten Bowman" <kbowman89@...> wrote: It was just an information seminar, Josh Sommer was there speaking. At the University of...
6558
Rick Gehl
rickgehl...
Jul 24, 2012 11:33 pm
I will send a card to my fellow Canadian for sure. Thanks for letting us know. So sad. Â Rick ________________________________ From: "shozgirl@..."...
6559
chairmech
Jul 26, 2012 2:53 pm
After talk with Dr. McDermitt in San Francisco I'm looking at 2 possibly 3 different surgeries 2 at San Francisco after the first about 2 weeks recovery a...
6560
Ameeta
ashahphd
Jul 26, 2012 3:43 pm
I too have a foot drop. How and what are you using to cope with it. Mine is in my right leg. So I am driving with a left foot gas pedal, and wearing a brace...
6561
Ameeta
ashahphd
Jul 26, 2012 3:47 pm
I had my initial surgery in 2002 and a recurrence in 2006. My son spent a semester in New Zealand and has wonderful memories, stories, and pictures about his...
6562
Richard & Trudy Franco
francorichard16
Jul 26, 2012 4:27 pm
My foot drop is on my left foot. I also use a brace. I find it very difficult walking and walking up steps. I use a walker if I am walking a long distance. I...
6563
kiwiclivalchordoma
kiwiclivalch...
Jul 29, 2012 4:11 am
Thanks for the replies everyone. Seems there are a few of us... But no one online from NZ so far.....
6564
Kimberley Palacios
bluemonkeymo...
Jul 29, 2012 3:53 pm
Hi everyone! My husband is a survivor since March 2008. He had Thorasic Chordoma and had t4,5,and 6 removed. Although he has had many difficulties, he seems to...
