Surgery for pilocytic astrocytoma: When will I feel like myself again?

Hi @jkenser,
You just had brain surgery to remove a brain tumor and you survived! That's right, you survived! You need to keep telling yourself that. Maybe it would help if you would start keeping a journal. Write down all your thoughts, feelings & fears. Why do you feel like you're one big mess, etc. Is there a support group in your area? If there isn't, seek a professional who you can talk too. This fall, it will be 25 years since my brain surgery. I still have some high anxiety days. You're not alone. You need to give yourself a break. Take a deep breathe. Relax..... For now, stay away from the internet. Focus your attention on something else. Do you have any hobbies?

I had Brain surgery in December, 2019 and still have numbness on right side of face/head. I started playing golf again in early March but this virus garbage has curtailed that. Medications were horrible in first month but none taken now. As my PCP says "you had brain surgery and now you play golf so shut up and try to make all your putts".

@bobhills without the golf course, what is keeping you fit and occupied these days?

I plan to play next week if the weather holds but in the meantime I am keeping fit and occupied surfing the internet and eating ice cream

It's been over 3 years since my surgery. I went on to finish my doctorate and am now an Urgent Care Provider. I am very blessed. I am always here to talk if anyone needs a friend. God Bless

@jkenser I saw your post and had to reach out. I’m a nurse, no longer working in nursing after my surgery in 2024. Same type of tumor as you but cerebellar. I have had a lot of anxiety and anger issues since my surgery as well as some physical losses and still have physical limitations and ongoing pain. Do you still have pain or issues you deal with? It’s unpleasant to even brush my hair or have my head touched anywhere near the back of my head/neck area or near where the pin sites were as they’re now tender too. Combined with that and the emotional changes and having to try to figure out career changes has been overwhelming and I’m wondering if I’ll ever feel ok. The MRI contrast also seems to worsen my emotional issues and brain fog. I had residual tumor they couldn’t get so have been monitoring it, had some changes/growth in an area on my MRI last year so had an earlier follow up MRI which was unchanged and now another one next month. Because of the way the neck dissection was done for my surgery I have a lot of neck pain and seem to get spasms/knots and have pain easily with any kind of big lifting or stretching. It’s been hard to adjust to accepting help and these limits. I’m happy to see you succeeding and hoping that in the next 5 years my life feels a little more consistent too.

@ittybitty
Thank you for reaching out. I am so sorry you have to go through this. I can honestly say, the first 2 years after my surgery were the hardest. I had crippling anxiety for a while after surgery. The only thing that has gotten me through this is my faith. I do not know what you believe in, but God loves you and you can lean on him.

Give yourself grace. You had major surgery. Part of your brain was removed. It is going to take time for you to feel somewhat like yourself again. You will get your life back! Hopefully you can go back to nursing. Don’t lose hope. I will be praying for you.

Please do not hesitate to reach out to me. I know how hard this is. You got this!