i have had spinal chordoma. i had my vertabray removed and hardware put in april 2009.i still am very stiff and have pain but i can wlk not far and drive ...
1772
Lisa Vanelli
lmvano
Jul 24, 2010 4:17 pm
My dad also has thoracic spinal chordoma. He had surgery, intraoperative radiation, and proton beam 4 years ago. All was well and he enjoyed golfing ...
1773
mary bentley
mbbrvt
Jul 24, 2010 5:20 pm
Hi Ann, I would love to help monitor the sacral/spinal group. Mary ________________________________ From: uswoods5 <uswoods5@...> To:...
1774
Tina Rosen
tinasfunstuff
Jul 24, 2010 9:09 pm
Lisa......good luck to your dad. Hopefully he'll get smooth sailing ahead and be back on the course. cyber hugs, Tina ... From: Lisa Vanelli To:...
1775
Kurt Steinacher
chefkurt22
Jul 24, 2010 11:00 pm
It has been awhile since I have been on the site.My father was DX.with Sacral Chordoma in Dec.2009,went to Sloan Kettering for Proton Radiation,and has lost ...
1776
uswoods5
Jul 24, 2010 11:30 pm
Dear Linda, We are so sorry to hear that your father has passed away. Please accept all of our sympathy for you and your family. Thank you so much for letting...
1777
shozgirl@...
shoozgirl
Jul 25, 2010 12:20 am
Linda..so very sorry for your entire family. We must all do everything in our power to improve outcomes for this disease. Sincerely, sharon/nyc Sharon Sent...
1778
Lisa Vanelli
lmvano
Jul 25, 2010 1:32 am
Linda, I'm so sorry about your dad. You will all be in our thoughts and prayers. Lisa ________________________________ From: Kurt Steinacher...
1779
Lisa Vanelli
lmvano
Jul 25, 2010 1:34 am
Thanks, Tina!!!!! ________________________________ From: Tina Rosen <tinasfunstuff@...> To: Chordoma_Support_Group@... Sent: Sat, July 24,...
1780
Robert Schoelkopf
rschoelk
Jul 25, 2010 3:12 am
Linda, I'm so sorry for your loss. I wish you and your family strength for now, and hope for peace and serenity In time. Rob Dr. Robert Schoelkopf William A....
1781
Tanya Sadagopan
tysadagopan...
Jul 25, 2010 4:58 am
Linda, Thank you for sharing the journey with us. We are so sorry for the loss of your father. May peace fill your hearts and may your father's courage live...
1782
Martina21@...
baurboys3
Jul 25, 2010 5:21 am
So sorry to hear the news, Linda. We will keep your family in our prayers. Martina in Missouri (my father is also battling chordoma) ... From:...
1783
Tina Rosen
tinasfunstuff
Jul 25, 2010 6:10 am
Dear Linda, I'm so very sorry to hear of the loss of your beloved dad. Having you by his side was the best gift he could have had. You're very lucky to have...
1784
uswoods5
Jul 25, 2010 8:41 pm
The Sacral section of this website is now open. It is designed for sacral and lower spinal members although it is open to everyone at: ...
1785
mary bentley
mbbrvt
Jul 25, 2010 8:55 pm
Linda, So sorry to hear about your father. I will keep you and your family in my thoughts and prayers. Mary/Ohio ________________________________ From: Kurt...
1786
Janet Wilbanks
wilbanksjanet
Jul 25, 2010 11:29 pm
Linda, I'm very sorry for your loss. You will be in my thoughts and prayers. Sincerely, Janet To: Chordoma_Support_Group@... From:...
1787
Sharon Diebel
diebelsharon
Jul 26, 2010 12:05 am
Very sorry for your loss much to close for all of us - you ae in my thoughts and prayers, stay strong. Sharon/Phoenix It has been awhile since I have been on...
1788
Einat
einat_guy
Jul 26, 2010 4:28 am
So sorry to here it. you are in my thoughts. Be strong. You have doen all you can... einat (israel)...
1789
Iris
irisjm...
Jul 26, 2010 3:43 pm
Sending you love and positive energy. Keep the faith. Everyone here is with you. Praying an answer is coming to you soon. ~ Iris...
1790
Iris
irisjm...
Jul 26, 2010 4:00 pm
Our sincerest condolences. Our thoughts and prayers are with you. ~ Iris...
1791
Austin Moore
amoore5535
Jul 26, 2010 4:47 pm
So very Sorry Linda..... I am 75 and a 10 year survivor of a sacral chordoma. I have tumors in my lungs, but they are asymtomatic. Love and much sympathy. ...
1792
uswoods5
Jul 28, 2010 12:50 am
Everyone I have had to rebuild the information pages site at www.chordomasupport.org. If you use an older link, you may find some odd behaviour for a few days...
1794
Austin
amoore5535
Jul 28, 2010 6:21 pm
I had a sacral chordoma resected in 2000. I have survived 10 years and I am doing O. K....
1795
Austin
amoore5535
Jul 28, 2010 6:22 pm
I lost S2's etc. (bowel, bladder) I am managing very well. Email me if you want further info....
1797
uswoods5
Jul 28, 2010 6:28 pm
Everyone I'm having a bad day and accidentally sent a message to a member here instead of to his personal email. I deleted it. If it came to you, please delete...
1798
uswoods5
Jul 28, 2010 7:00 pm
Everyone I've changed the colours on the sacral board to make it easier to recognise it at a glance. Sorry if you don't like the colours, you should have seen...
1799
shozgirl@...
shoozgirl
Jul 29, 2010 12:11 pm
Just FYI, I have been told by Dr Sen's (Chief of Neurosurgery at St Lukes-Roosevelt) office that as of January 2011 he is moving to NYU. He will have his own...
1800
sassywhozzit@...
whozzit2
Jul 30, 2010 1:43 am
Sharon, Thanks for the notice...could you advise me of new phone number, address and other contact info...when you find out!!! I haven't seen either Dr. Sen...
1801
shozgirl@...
shoozgirl
Jul 30, 2010 4:02 am
Suzette and all: When I find out I will. Dr Costantino is same as far as I know: 212 523 6756 thanks, Sharon/NYC In a message dated 7/29/2010 9:43:32 P.M....
