Brain / CNS Tumors Support Group

I have little memory most days and truly can't remember things people told me a week ago. Believe me some days i think this is a blessing!

Hey, I have also been idagnosed recently and have not found a lot of avswers or help. Respond if u can. I see no one has repsonded to you and you have not been active for awhile. Hope to intereact as possible.

I'm just getting used to this website. I certainly know what you mean when the doctors make such light of the situation. I am still have headaches after 8 mths and had many other questions, depression, emotions, memory and they just say that might be. I joined this group with the hopes that I too could get more answers. Since you posted in January, have you had an operation? If you don't feel comfortable with your doctor even if they have this great reputation you need to feel comfortable so maybe look into other doctors.

I know exatly what you mean. most days I feel like all these doctors are guessing and "hope" this or that treatment works. If *I* was to guess your staring off sounds like mild seizures. When I was first diagnosed, I was told, sorry there is nothing we can do for you, its only a matter of time, this was because of where my tumor was and that no doctors in my area are good enough to take it out. Well to make a long story short, I got to se Mitch Berger at UCSF and he was able to take out my original tumor. they perform miricles there at UCSF every day. you may want to send him your MRI films, they have a tumor board that meets every Thursday and that is about 5-10 specialists all sitting around a table discussing the cases they have been brought. Its a great way to get information on how all the doctors would handle the situation. Just a thought. Let me know how it turns out.

I've found this group to very quiet for some reason. I spend most of my time in the epilepsy site because there is much more activity there.

Like you, I have a tumour lying in a hard to access place and no treatment at all has been offered. I have had 2 opinions so far. Unless they biopsy, they cannot determine what type of tumour it is.

I was told also that my tumour was in a quiet part of the brain and should have no effects. I used to be a daredevil sort of person and before the tumour was found, I suffered from high-anxiety and panic, I was certain something was wrong. The docs said the anxiety isn't due to the tumour, but I am not so sure.

The brain is really not very well understood yet. I take what doctors say with a pinch of salt, but still seriously.

If I was you, I would cover all bases, make sure you aren't clinically depressed (that can cause the symptoms you describe), be sure if any meds you take aren't having a side effect.

Then do everything you can to help yourself. Eat well, don't drink alcohol, sleep well, and look at seeing a naturopath. There are more things we can do for ourselves than people think.

Don't let the tumour rule your life, whatever you do :-)

xox

Well, I can see just by my posts on here my brain is affected. I also have fibro, so I can not say how much of this is the tumor. But, I have to be really careful of my typing and if I am not I can tell by going back to a post and noticing my typing. It is just getting terrible. The eye, hand coordination is not so good. The driving skills are getting scary and remembering names of people I know is not so easy any more. I return in July for another MRI.
To answer your question, the brain is not something that is well known by a lot of surgeons and doctors at this time. I also agree get another opinion until you are satisfied.

I have a terrible memory. Sometimes I can remember something that happened years ago and the next i cant remember what happened 5 minutes ago. From research ive learned all tumors in the brain can cause effects. Some doctors disagree but not all of them. Depending on the area of the brain the tumor is located also determines some of the effects a person has. Even with the research Ive done most all doctors believe tumors do not cause headaches yet some doctors believe they do. Research online that is what I do and there is a wealth of information . Some of the effects i have is depression, emotional outbursts, seizures, anxiety.
Find a doctor you are comfortable with one that will listen . One even though they may look at statistics will say you know what this may be affecting you in this manner.
I hope you get help soon

I can understand what you are going through. I go tomorrow to get my next MRI. No one understands the brain well enough to say with any certainty that a certain tumor is not affectign you. It may not be affecting you now, but it eventually will. The brain is the most intelligent muscle in the body. Any extra things in or wrapped up around the brain are NOT good. Tumors put pressure on other parts of the brain. They strangle the blood supply to nerves, albeit slowly sometimes. When tumors get noticed, it is usually because it has become so enlarged that it is now causing some sort of problem. Even the ones that don't seem to be causing a problem are causing problems. Me, for example, the tumor is sitting there strangling the blood supply to my optic nerves. It may not be causing me to lose eye/hand coordination, but it does affect how I see things. It does affect how I remember things and how I feel about things. Just because the affects cannot be mapped out does not mean they are not affecting you. My doctors noticed my tumors when they were just little spots on the MRI; since then, they watch them very closely every six months. I like my doctor's approach. Google him - Dr. Edward Arenson in Englwood, Colorado. Good luck. I hope everything is okay and gets better for you. Stay in touch here.