Just had intramedullary ASTROCYTOMA surgery

[happyone]

Hello
I just wanted to pass along a note or two!
I recently had intramedullary astrocytoma spinal cord surgery on my thoracic spine. The pathology came back, that the tiny fingers have already spread through my cord.
I have some GREAT advice and would love to help others.
I secretly read here for 2 years, before deciding on what hospital to go with.
I was able to go and visit 5 of the TOP institutions around the country.
I believe that I picked the best team of neurosurgeons in the country.
I am doing OK, and I CAN WALK!!!! Yes, I am in a wheel chair a lot of the time, but I will be able to walk on my own eventually forever.
Now, I am not out of the woods yet, because the darn tumor astrocytoma fingers have spread to other areas of the cord.
But hey, I am doing good.
I don't want to list my name, because I am very private, but if ANYONE has been recently diagnosed with a true astro or they think it is a a true astrocytoma, please send me a private message. I will do my best to check in and look for your private messages. I will tell you that I am relatively young, and I am a female with a positive out look. I know your fear, and I lived it for a few years. I can support you and guide you with a little of my experience. I want to give back, because this board guided me, even though it was soooooooo rare to see other patents with true intrmeduallary astrocytomas. I needed others to talk to, and I never was able to connect with anyone partly out of fear, and partly due to the fact that no case seemed similar enough to mine.
Thank you

[Don and Maxine]

Hi...Maxine, my wife, was diagnosed with an intramedullary grade 2 astrocytoma of the thoracic spinal cord back in 2009. We live in the Pacific Northwest. We are looking for more information and would really like to hear your list of the most experienced places in the U.S. These tumors are so rare, a lot of places are not qualified to deal with them. We have been in touch with Johns Hopkins on the East coast and are thinking of going over to the University of Washington, but they now only have one neurosurgeon who does spinal cord tumors. We don't mind giving you our email if you would like to communicate by direct email. Thanks, we hope you are doing well..!
(My name is Don, I'm a retired RN and handle the computer)

[pindy686]

Happyone, you asked for a "private message" but we couldn't see how to do that. Please let us know if there is another way you want us to reply. Don and Maxine

[kayleem]

I to am a young woman I am 26 and I had an intramedullary arstrocytoma removed from my C1 to C4. I have been looking for people who have gone through this to talk to. So if you would like to chat I would love to.

[kayleem]

Don and Maxine I am from the Inland Northwest and you should look at Dr. Benjamen Ling he did my surgery and he is one of the best NS in the state.

[pindy686]

Hi, thank you very much for your recommendation. We're glad you found a good doctor! Best wishes.

[happyone]

Hello!!!
I am sorry that I am just now seeing this.

I ended back in the hospital for 7 more days in my local major city hospital, since I posted this from two of my drugs interacting and poisoning me from my "local" neuro oncologist.

I set up an email just to help answer questions and then I can give out my phone number and I would love to talk to anyone also!!

My email is [e-mail]

I am really hoping to connect with some of you and help you!!!
This has been the biggest decision of my life, and I think that I made a good one. I am so thankful we interviewed so many different neurosurgeons.

TALK TO YOU ALL SOON oxooxoxoxoxxo

[funnywalk]

Nov 2, 2012 14:36:18 GMT -6 pindy686 said:

Happyone, you asked for a "private message" but we couldn't see how to do that. Please let us know if there is another way you want us to reply. Don and Maxine

Click on the username of the person you want to message and the option will come up on the right of the forum.

[exodus152]

Just found this website. Glad to see it and am more than willing to share any lessons learned as a long term astrocytoma survivor (33 years next week). It's not always easy, but you can have a full, fullfilling life! I still am.

[josephgallo]

Hello!

I have been dealing with an Anaplastic astrocytoma grade III for about 2 years. It is good to hear from a survivor of 33 years.
What grade is your tumor and have you had surgery in the past...?

Thank You