What is your outlook now after surgery??

[kippy6]

1. Just wondering for those of you who have had surgery, do you find that you really want to help others more than before? Has your outlook changed?

Have you received a phone call from someone who has a brain tumor, but a different kind?  A gentleman I spoke with today was just diagnosed on Friday with a Glioblastoma of the brainstem. I don't know anything about cancer, and really feel for this person. I talked with him for a few minutes, but he seems to be having trouble finding information. I couldn't find an online "association" similar to our AN association for his special diagnosis. I was hoping he'd be interested in researching his own condition if he could find the appropriate association.

2. Does anyone know of a comprehensive list of online associations (similar to this one) for each different type of brain tumor? The person I mentioned above would really like to speak to someone who has gone through the brainstem Glioblastoma experience.

3. Also, do you know if there are standard questions or things to do (to become more informed) when you find out you have a brain tumor (regardless of what kind?)
He doesn't know much about his condition. I want to tell him to get a copy of his MRI report and films and send them off to get some opinions.

Thanks,

[Captain Deb]

Gee-that's a toughy esp since our tumors are non-cancerous. But I hate to call them "benign," as they can wreak havoc with our head wiring and such.  The only thing any of us can share is our own experience.  I leave it to the doctors to dispense medical advice--that certainly is not our--meaning my-- territory.
Sharing my story and experince with other AN patients gives my AN ordeal a sense of purpose and makes it more than a meaningless tragedy that happened to me and totally changed the rest of my life's plans.

Captain Deb

[Desilu]

HI Kippy6,

To answer your first question, yes! I want to help everyone I can. If I can help to make their experience less frightening and calm some of their fears, then I feel I have helped. Knowing that you have a brain tumor can be very terrifying. But that's what this AN website is for, to help each other.

My outlook on life has totally changed. I try not to sweat the small stuff anymore and I try not to take things for granted. I am thankful for each and every day that I am alive and I thank God and all the people that prayed for me.

Sorry, I can not help you about the gentleman with a Glioblastoma of the brainstem, I don't know what that is. Maybe he can ask his doctor if he knows of an organization he can get in contact with that might be able to help.  Ann

[kippy6]

Desilu, I truly feel the same way.

Captain Deb, Don't worry, I'm not trying to give medical advice at all. I too can only offer my own experience. But have you received any phonecalls from anyone who just found out they had a different type of brain tumor, wanting some info?

[nannettesea]

Google Brain Tumor Society, or try this link:  http://www.tbts.org/categoryList.asp?categoryID=255

They have some support stuff there.  Our littlemissrory from Seattle did a fundraising sail (and ride?) for them recently.

Hope it helps.
Nan

[Windsong]

Hi Kippy,

I don't know anything about gliomas but there a number of sites  that i came across while searching about Ans. Here's a glioma support site:

http://health.groups.yahoo.com/group/gliomasupport/

I found it under one of the international brain tumour foundation sites...sometimes googling thos last words will bring up plenty of places that discuss the avrious types of brain tumours.

Hope this might be of some help for the person who called you.

Windsong

1. Just wondering for those of you who have had surgery, do you find that you really want to help others more than before? Has your outlook changed?

Have you received a phone call from someone who has a brain tumor, but a different kind?  A gentleman I spoke with today was just diagnosed on Friday with a Glioblastoma of the brainstem. I don't know anything about cancer, and really feel for this person. I talked with him for a few minutes, but he seems to be having trouble finding information. I couldn't find an online "association" similar to our AN association for his special diagnosis. I was hoping he'd be interested in researching his own condition if he could find the appropriate association.

2. Does anyone know of a comprehensive list of online associations (similar to this one) for each different type of brain tumor? The person I mentioned above would really like to speak to someone who has gone through the brainstem Glioblastoma experience.

3. Also, do you know if there are standard questions or things to do (to become more informed) when you find out you have a brain tumor (regardless of what kind?)
He doesn't know much about his condition. I want to tell him to get a copy of his MRI report and films and send them off to get some opinions.

Thanks,

[msuscottie]

Great Post Kippy.

It's interesting, but since my surger(ies) I almost feel it more of a duty to help others than ever before. When I was first diagnosed in July of 2004, I had no where to turn, I didn't know anyone that had ever had an AN, or even brain surgery, I was very scared and frustrated. I stumbled across this forum and a few people really talked me through the whole ordeal and let me know what to expect. It really helped a lot.

After my first surgery, I made sure to document "My Story" so that it might help others.

After my second surgery and meeting a lot of patients of all kinds, I wanted to do more. That's why I have been bothering you all with the website I've been working on over the past few months. I thought it would be cool to set up a patient network so that patients of all kinds could connect with one and other and lend their support. It's already been pretty successful for only being a few days old. Again, I would urge (plead) with all of you to check it out and set up a profile. We're lucky to have this forum, but not everyone does. I've already received some thank you emails from folks that are scared and frustrated and have nowhere to turn. I'd appreciate your support, if not for yourself, then for others in the forum. Please visit and set up a profile.
www.patient-network.com

My Doctors office has also put me on a list, I'm sure you can do the same, of people that patients can contact to talk about their experience.

Take care!