Brain / CNS Tumors Support Group

Maybe we should start a post on here about why everyone is here. That way we will get to know the other people on the brain tumor site. Ok I will start,but if no one responds I will feel dumb lol.
I'm here because my husband has a bran tumor and I would like to meet others going through the same thing.
Elizabeth

Hey Elizabeth, don't feel dumb! haha It really is a quiet part of the site, amazingly quiet. I have gotten to know a couple of people though, so you did well in starting a discussion post.

Well I am here because I have a benign tumour that was dx in 2003. No treatment has been offered, although it is slowly growing. It has brought on epilepsy though, so now I am taking it very seriously.

Good point about making a log about everything, sometimes it's months between visits and the appointment only last 4 minutes grrrrrrrr

Hey Chris,
Thanks for responding. It looks like you may be the only one though ha ha. My husband has a brain tumor that he has had for over ten years. No one told us about it until he had two gran mal seizures and some complex partials. He had surgery and is doing very well. He also has epilepsy due to the surgery. He is currently on Keppra and it is working very well. I hope everything is good with you. Is surgery an option in the future for you?
Elizabeth

I have a benign tumor in the meningioma above the left ear. It was discovered in December when I began have migraines. I will have another MRI in July to check the growth or non-growth at the time. Once that is determined the surgeon will know how to proceed.

I did get a second opinion - my first surgeon wanted to go straight to surgery opening a large portion of the left side of my head and replacing with plates and screws.

I prayed and prayed and just felt this was not the only option, so I asked my rheumotologist for a second opinion and was sent to a very caring surgeon over an hour and hald away. I did have to keep on this for over a month to get the second opinion. I was told "funny" things like we have never done that before, I'll talk to doctor and call you back, the neurology group in this area all practices out of the same building etc.

However, it was well worth the time and adventure as this guy is awesome. He states I may be able to take care of the situaiton with radiation if necessary, should we find growth in July.

Secondly, he told me things to look for (I had to ask) in case it started growing and affecting me before July. He stated I would have sezures and right side weakness, like my right leg would just collapse or my right arm could not be lifted. Mine is on the left side.

I am fortunate in that mine is not on the brain matter itself, but on the outer layering of the brain. It is a simpler operation if need be than actual brain surgeries.

I am also fortunate in that it is at this time non-cancerous. How they can tell by the MRI, I am not sure. But, I did read on one of the web sites that a smooth edged picture denoted non-cancerous. Mine was actually a small perfectly round looking spot of dark material upon slide in relation to the rest of the image.
It is like 1.3 x 2.1 cm. Something the size of a small jelly bean is the way it was described.

I feel this may be affecting me in small every day things though. My word base is small, I can not get my thoughts out correctly. I forget all the time. I sometimes drive around and forget where I am supposed to go. I make lists to remember and forget the lists. I sleep a lot. Sometimes three times a day I have to lay down. I am exhausted all the time. It is too soon to know if this is the brain tumor or if it is something else.

I am terribly stressed out and am positive I have adrenal exhaustion. My doctor and I are on the path to correct this.

So, I am here to learn as much as I can from others. Just as Elizabeth is. Honestly, I do not know anyone from my entire life that has had a brain tumor.

I did recently learn I have a cousin that had a tumor removed three or four years ago. AND I have another cousin that is dying of a brain tumor and has only a few months left. Maybe somthings even families don't talk about. I only learned as I mentioned mine to a elderly aunt who in turn told her sister, who in turn called me.

I was just wondering if this was a heridtary thing when I found out I had two cousins with barin tumors also. One would be much older than I and the other just a few years older than I. One male and one female.

My type of tumor according to the information on the websites is common in women over 50. That sure was news to me.

I have eight aunts that are all over fifty.

I hope more will share as they see this post. Thanks for listening.
My posts are sometimes not easy to read as I feel like I now have the mentallity of a fifth grader sometimes.

Hi Elizabeth
I am new to this site, I was dx. in March with a brain tumor. The surgeons feel it is an astrocytoma and they feel it is maligment. It is 3cm and located in the temporal lobe but deep in the insula. Right now it is a watch and waite game but I am not comfortable with this. I am seeking opinons with any surgeon that will view my films. I have a MRI this Tues. to check for new growth. I also have partial siezures due to the location, I was told I will be on anti-seizure meds for the rest of my life.
I am a full time college student work two part time jobs and have two beautiful daughters involved in every sport imaginenable! I come to this site for my quiet time, it's a comfort zone to read about others in the same situation as me!
take care
Carissa

Wow, I'm the only one here with a face! haha

Elizabit, glad to hear your husband is doing well, the epilepsy is almost the hardest part of all this.

My tumour is benign and slow growing, surgery could be dangerous, but I am not giving up on looking for treatment solutions. The E drugs wipe me out though, so it's hard to keep up the concentration on research.

Hello, my name is cindy. I just joined this group today . my concern is my daughter. she is 24 years old and has a dermoid tumor in her brain , ovaries, shoulder and now they are saying maybe the liver. we are at the point .wanting to scream at some one . her doctor never return phone calls and her head -aches are getting worst now. We get her results by talking to a nurse or getting a copy of her test. it has taking almost 2 and a half month to see a neuro. that will not be till tuesday. thank you all for letting me vent. this is my daughter I want to protect her. and I feel that she is not getting the right care.We did change her doctor and she see her new doctor on the 20 of may.... we are trying to be strong for her and this is so hard . I am reliving the past . my late husband died of cancer in 1992.
thank you for listening
cindy

I joined because I thought we could help you as a group... because this effects your central nervous system...
Come check out the neuropathy group. We have over 70 images and many pain management links.

http://dailystrength.org/groups/ne...

:)

I joined this group to find others who have gone through what I have or are going through this terrible path of dealing with a brain tumor.

Hi All,
I joined because my daughter was diagnosed with a brainstem tumor, a tectal glioma. She is 3-yrs-old. It is not a common tumor so I am trying to find those with the same type of tumor to try to "compare notes". I also find comfort in reading other posts and the support I get from the friends I have found here.
Emma was dx'd with hydrocephalus at 6 weeks old and had a VP shunt. It wasn't until a follow-up MRI when she was nearly 2 that we found that she actually had this brain tumor and it was the cause of the hydrocephalus. A more recent MRI this past January had us scared as the dr's want us to come back in 6 months versus 12 as there is "an area of concern". This tumor tends to not grow/change but it can be slow growing or a small percentage can become aggressive. It is deep in the midbrain, thus surgery is not an option. The idea of chemo absolutely terrifies me and I pray every day that if this "THING" cannot disappear, that it just continue to not grow or change and we can just continue to manage the hydrocephalus. She is so precious! Thanks for listening, Amy