Brain / CNS Tumors Support Group

I was dx'd 5 years ago and the mengioma is still in my brain. I seriously wish I could find doctor to remove it''



Best of luck

yes coming up on 5 years now myself, still waiting.

Has it grown any since you first found out?
My tumor is considered small (about 1 inch) and I have no symptoms, no brain swelling, or fluid blockage. All good things I am thankful for. It is actually in a cavern in my brain and is operable. I feel fine so the doctor sees no reason for an operation. I agree at this point, because any surgery, particularly this kind, seems so risky. Is yours operable? Do you have symptoms? Why risk it if you don't have to?

The doctors found mine Dec. 7th of 2007 after I went to the emergency room for a migraine, so I am going on two years.

From the emergency room, I was sent to a surgeon in the middle of January. I was shown a picture of the tumor and the surgeon informed me the tumor could be removed in the middle of February.

i did not make that appointment. I thought about it for a while and stressed out and thought my life had ended. I have a fourteen year old at home and am a single parent. I wondered who would get milk and groceries for him while I was unable to drive for 4-6 weeks and who would work and support him. Then I asked a lot of questions from friends and educated myself a little.

Then, I asked for a second opinion, then I educated myself with more information before seeing the second surgeon. I also found a website for my type of tumor www.meningiomamommas.org/


My seond surgeon, Dr Keith Kattner with Central Illinois Neuro Health Sciences,http://www.cinhs.com/ is poitively awesome. I asked questions like what should I look for if it is growing. What can I expect concerning the tumor? How many surgies has he performed with this type of tumor? What can I expect afterwards? Are there other means to deal with the tumor, etc?.

"WE", the surgeon and I, are in a wait and see pattern. I recheck with another MRI, in July of 09. First he will try radiation if the tumor has grown to try and shrink or remove the tumor. If that fails, he will operate. He will not operate until the tumor grows to a certain size. He also feels the tumor is not big enough to have caused the symptoms I have.

Recently, I have had an increase of the pain and synptoms, so I will call the surgeon again and question what to do. He may want to see me and we will go from there.

Mine is 1.3cm X 1.5cm X 3.0cm. Or pretty close to that. I really don't remember the details, as I feel confident this surgeon is competent.

To answer your question directly, I got done on my knees and prayed. That is how I found the strength to get where I am at. I still think about the tumor daily, but I am not worried as I have laid the burden on the Lord and my surgeon with whom I am confident will do what is necessary when the time comes. Secondly, whenever I become obsessed with the tumor I pray again and rebuke the devil for putting negative thoughts in my head and I LEAN on the Lord to help me through the day.

I wish you the best and pray that you will develop a support system of people to help you with your concern.

mary

I have been on WAW for 6 years.....I got to the point where I never even thought about it up until the time for the MRI which I was having every 2 years.

Then suddenly boom! two seizures....the second one I was down and out in the parking lot about to get in my car.Split my head and broke my arm. The eeg showed that the activity was coming my meningioma. So now I am on Keppra....seemed to be adjusting just fine. My doctor said that it is far better to deal with the "known" than the "unknown"....and that is a very good point. If I can stay like this, the medicine works so I can have a normal life then....I will continue to WAW.
I have really gotten to the point where I don't worry about it....I joke about it....but what can I do....everywhere I go, my tumor goes with me!LOL! So the way I look at it is, it can stay...until it makes itself unwelcome, then it is time to hit the road....that could be 1 year down the road or 20 or never....so I will take my medicine and enjoy every day as much as I can.
Hope you can do the same!!!

Going on my fourth MRI for two tumors. One meningioma and one low grade tumor. Truthfully, I never know just how I feel. Seems like I go thru alot of depression around MRI time. I also have COPD so I do scans watching nodules there as well as lymph nodes in my breast. I think all of the repeating things every six months is taking it's tole on me. I am ready to just say stop and live what life I have left. When it is done..it will be done! I know God doesn't want me to live my life this way ...but some days it just seems hard to get out of the fog. I personally can't write cursive anymore and some days can't comprehend. The low grade tumor is deep in the middle, so I really don't want surgery until i see more symptoms. It gets to be a real dilemma for the wait and see...but please know that you aren't alone..there are alot more people that wait and see. I also send my MRI CD's to the MD ANDERSON Brain and Spine center for review and I have all the faith in them. They are far more worried on the low grade tumor that the meningioma. They told me the only time a menigioma would need surgery is if it grew large enough to cause pressure. Otherwise they leave them alone because they don't cross the blood barrier. Hope this helps and sorry for being so yappy....some days are like that too!

Just a comment that you shouldn't have to suffer a "doom and gloom" physician. Don't know if you're dealing with a neurologist or oncologist, but in my experience, it wasn't easy finding a caring, positive doc in either field. Basically, I did a lot of research and found a fantastic oncologist in Seattle, 75 miles away from where my husband and I lived. He wound up being Pete's primary physician, and was part of a team of docs (including Pete's neurosurgeon) in Seattle devoted to providing excellent care to cancer patients.

I know not everyone has the ability to travel far to find the best possible care, but if you do, go for it. I found that the larger the city, the more "in network" options were available to us through our Insurance.

I wish I could tell you how much difference it made to have an optimistic doc -- one that really cared and listened (great sense of humor, too). Good luck to you.

There is a girl who made a doc about her cancer battle called "Crazy, sexy Cancer"...she had like 30 tumors
(completely unremovable) all over her and she found a diet treatment...and is alive and well with NO Chemo or radiation treatment...just a lifestyle change...cool huh?