Brain tumor survivor

Hey, I just got on here to see if anyone else from the Ohio area has been through brain surgery and recovery. I was diagnosed with a brain tumor July of 2011 and had surgery in August. I have been recovering since.

I'm kind of wondering if anyone else has had a difficult time with their recovery as well.

Let me know

Welcome to the site!

I am not in Ohio but I am recovering from brain surgery in Texas which was done in April. My tumor was benign, acoustic neuroma, and I am experiencing facial paralysis. The surgeons were very pleased with my post-surgery movement in the hospital and I lost all facial movement on my right side a week after release. None of us were happy with that turn of events. The recovery has been very slow and frustrating at times but I am also aware of how fortunate I am in all of this. Today I met a woman who had an inoperable brain mass and I just started crying because she revealed that after I told her my tumor had been removed.

What issues are you experiencing in recovery? I also have issues with fatigue and dizziness for my specific condition. I am told it may be up to a year before I feel anywhere near the same.

Ohio here, I just had my surgery a month ago. I had a supra cellar mass almost removed. Being that it was so huge a portion of it had to be left because of the damage it would do to remove all of it. I had a wonderful doctor that knew his stuff. I ended up having a bleed after the first surgery and they had to go in again within 12 hours of the first surgery to remove a blood clot. With the second surgery I lost my site in my left eye. My family was told I had a 50/50 chance of living with the first surgery and then they were told that I had less than a 10 percent chance of making it with the second surgery. Like I said I had a good doctor. How do I feel... hum.. my head still hurts some what. I get really tired and have to nap during the day around 3:00. I am really good considering everything my body has been through. The part of the tumor that was left has to be watched closely for regrowth. They figured it was over 10 years old before the tumor was found. They said it was slow growing. I sure hope so, don't want to go threw that again for long time. Plus my age is a factor, I am 54.. I get cranky loud noise has a affect on me now. I didn't like losing my eye site, but better that than my life. I don't like all the meds they have me on. I have never been one to take medicine. Still trying to deal with that, and come to terms with the fact that I still have the tumor. I try to stay positive as much as I can. I have no doubt that this will be a long road. Some days I have found are better than others, On the off days I don't want to do much but sleep. I try to let my body tell me what it wants and then I act accordingly. I really think that's all any of us can do after having such a life changing experience.

I envy those that have had a chance to have there tumors removed. Even with unforseen problems afterword you can still say you survived and your getting better. For me I can't have mine removed so don't cry for me as I myself have had a full life and I'm ready for things to get better without surgery, I'm ready to meet my maker. I'll be up there rooting for you guys to get better. I feel I'm the fortunate one. God Bless Us All........

Thank you for the reminder to be grateful for what we do have. My thoughts are with you.

I'm in Texas and have had a rough 2 yrs. I suffered a TBI during a car wreck during which time they had an "incidental finding" of an inoperable brain tumor. More recently, they've located a spinal cyst. Some days it feels like I'm very alone in this, despite having a very supportive family. Are these feelings normal?

It’s odd how a brain tumor can be found. Mine was found after experiencing tunnel vision, slurred speech. Did the doctor say if the tumor will grown, move, or do damage if left alone? I think they can do some sort of lazor surgery now. Hold onto your family as tight as you can. If any emotional behavior on your part makes you feel like they don’t care, IGNORE YOUR FEELINGS. Family is the one thing you need now and later. Don’t alienate them. Don’t push them away. If you work, or go to school, keep going. Try to have the most active life style you can that you are used to. Your brain controls some thought patterns that can cause you to just “give up” and push everyone who loves you away. I did this after my surgery in 1999. Divorced after 27 yrs marriage, my 35 yr old son won’t talk to me. My brain tumor destroyed my family. Oh, they are happy with their families now, but I feel alone. That is a chemical imbalance of your brain, as I was told by my neorsurgeon. He put me on anti-depressant pills. Told me to be on them for the rest of my life, since it was a chemical imbalance that I had no control over. I stopped working, stopped going to church. Please take a little of my lesson I learned with you… Know that this too shall pass, but keep going as much as you can. Get active, as that helps keep your mind off of it. Live each day as if it were your last, and wake up feeling BLessed to be given another day to Make it as you can. Not too mushy, I hope this somehow helps you. You are never alone. Write again, I enjoy helping others, as it helps me. Take care and God Bless, Kat

Family and friends can be extremely supportive but the bottom line is that they are not living what you are. It's not enough to explain it to them because unless you happen to talk about things all the time while you find some normalcy then they begin to think things have improved or are not that bad any more. While you may have their love and support it's not the same as someone who knows what you may be experiencing. They don't fully understand any struggles you have even when they try to and it's not for lack of love. Best to you and your outlook will help you tremendously.

Thank you. I love them dearly but you hit it exactly…they’re not living it…