It's been 2 years after being diagnosed with a brain tumor and having surgery

[D168]

A little more than 2 years ago i was diagnosed with an abnormal growth on my brain stem in the back of my head. The symptoms I had before surgery were double vision, changes in balance,mood and a constant pressure like someone was pushing their finger on my head. Some headaches on and off. I also had 3 episodes where i couldn't get out of the car to pump gas because of my legs felt weak and asleep. I have had an anxiety problem all my life and took medicine for 7 years when I tappered off of it I had sudden symptoms then 3 months later I was told I needed surgery.
I had surgery and was told they removed most of the tumor but could not get it all. They said I am doing good and following up with MRI's every 6 months. First my neurologist said it was ependymoma,then changed it to subependymoma,then sent pieces of the tumor to be reviewed by pathology and they said it was probably pilocytic astrocytoma. Then my neurosurgeon said he disagrees. They neurologist and neurosurgeon did agree that it was a weird uncommon growth that was highly vascular.
I am living in fear, anxiety and doubt like I'm on borrowed time. Since surgery my right leg has felt numb, tingly,cold and lost feeling. My left shoulder has nerve damage and had to do physical therapy for frozen shoulder. I had a hemmorage in my right eye discoved by my eye doctor. My head still gets that sore feeling sometimes accompanied by my left cheek and sinus area feeling swollen.
I told my doctors this information and they say I'm doing good. I'm not lucky I'm very lucky they say.
I feel a pinch on only the left side of my head which lasts for one second a few times a week. Whenever I go grocery shopping the lights make my eyes feel weird hard to focus and i get unsteady. All of this makes me feel unwell and makes living a normal life difficult. I try to forget about all this but it bothers me physically and emotionally daily.
I have so many questions about this. Can scar tissue or stress give me any of these symptoms. What can I do about my symptoms since my last MRI was described as no additional growth of the piece left. Why do I have to have MRI's every six months still after 2 years. I just feel like I'll never be free or off the hook from these symptoms and doctors visits and MRI's. Any advice or help would be greatly appreciated. Sorry to write such a long essay.

[D168]

Thanks for your comment.

I also have those symptoms along with anxiety. where i worry about needing surgery again, getting cancer, being in such terrible pain, and not having a future being only 31.

I've had all the bad dreams you can think of. When was your last MRI and/ or doctors appointment. I'm being checked every six months which is torture and I pray to hear when they say MRI looks good then I can move on for another 6 months. Except theres symptoms and too many times I don't feel well.

I agree with you living in fear is torture and a terrible way to live. Maybe you need proof that nothing has changed for you. You may need some anxiety medicine or something simple like a new hobby to ease your mind. take care

[D168]

Thanks so much for your comment.

That is wonderful about your mom doing good beating these curve balls that are thrown at us. 20 years after surgery without total resection that is great news.

Its been 2 years for myself and I just don't know what to think or what is in store for me. I was hoping to make it through surgery and move on and be free. But I still seeing my neurologist and neurosurgeon every six months. Doing MRI's with injections. Also praying that I would feel 100% again but these symptoms just make it not fun.
I still have symptoms even after surgery and after 2 years. I am just trying to not lose hope.

I have a 3 week old daughter(my first child) I pray that I can watch her grow up and do everything atleast once with her. I am so thankful for the opportunity to be a parent.

[kellik77]

i was diagnosed with fibrous dysplasia of clivus (bone near brain stem) 2 years ago...nothing was done to treat it..i was told that it shouldnt cause any symptoms but since then, i have had MANY strange symptoms (aches, pains, odd sensations on entire left side of body)..ive also had the swelling of left check and sinus area...also i have VERY bad anxiety...i believe due to my diagnoses 2 years ago...im constantly worrying that all of my symptoms are due to the brain mass and that my diagnoses was wrong and im dying of a malignant brain tumor...ive lost weight lately, had night sweats, TERRIBLE fatigue...i feel like its all due to worry and anxiety..but who knows...this is a terrible way to live

[Michellemc]

Hi,
  I'm sorry to hear about your situation. I do not have a brain tumor but my mother does. If I'm correct I believe the tumor they stated you have is a tumor that has a high survival rate. I hope i'm correct. But I didn't write to tell you that I wrote to let you know to keep yoour spirits high and if your not happy with your answer from your doctors it's never to late to change doctors. My mother was diagnosed with Anaplastic Astrocytoma Grade III. The survival rate is less than 5 years with only 20% with a full resection. My mother had a partial resection and it's been a long road and eventually most of her problems either got better or she learned to cope. I know that's not to comforting but to get back on track she just passed her 20 year mark. She is one of the very FEW to live this long. So don't give up and remember you are the one that is sick and these doctors mean well but until they are in the same position it's easy to tell someone your doing well when you know you feel like **** and want some relief. Hope you get to feeling better.