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

Posted by jkenser @jkenser, Feb 9, 2017

Hello everyone. 6 weeks ago I had a brain surgery to remove a tumor out of my right temporal lobe. They were able to remove the entire tumor (thank the good Lord). I have never had any surgery so I am unsure how I should be feeling. I still feel as though I am walking around in a fog, I am tired and just do not feel 100% like myself. I am also having pretty bad anxiety and am not sleeping well. I am a registered nurse and am also a full time student pursuing my doctoral degree for family nurse practitioner. I have been able to keep up with classwork and have postponed clinical until the first week in March. Well March is coming quick. I am supposed to go back to work on February 20th and then clinical starts 2 weeks after, but I still feel so foggy. I do not know if the fog is from the surgery or from my anxiety. Some days I just want to cry. I am able to start driving again tomorrow which for some reason scares me. Ugh, I just want to feel like myself again. I want my life back! I know I am so very blessed and I should really focus on all of my blessing. My surgery was a success and my tumor was a grade 1 pilocytic astrocytoma (Thank you Jesus). I just find myself so scared still. If anyone can shed some light on how long I will feel like this that would be great. I know we are all different, and no 2 surgeries are the same. I will keep praying for 100% healing, as I know my Lord will not fail me. Maybe I just need to be patient as it has only been 6 weeks? Although, 6 weeks seems like such a long time.

Interested in more discussions like this? Go to the Brain Tumor group.

We are your support, we are in this together, never doubt that. I feel if reading something Results in increased fear, anxiety, then its time for your personal stop sign. I have a right falx meningioma. My love of my life had a stroke 3.5 yrs ago. He has frontotemporal lobe dementia. Sometimes less is more. Know your personal comfort zone. Don’t let anyone tell you how much research you should or shouldn’t do. A very wise surgeon said to me “that’s our job” referring to worry, etc. He took a great burden from me, knowing he’s aware of what my situation requires. Curiosity is good, but know your parameters. Then focus on anything that comforts, relaxes and bring peace into your life. Take care, we are all here for you!

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@kanaazpereira

Hi @jkenser,

I’d like to second what @cynaburst mentioned, that it is unlikely for Mayo Clinic to have misdiagnosed your tumor.
The Internet has certainly made life easier and many of us search the Internet for medical information. But studies have shown that searching for medical information online could also set us off on a downward spiral: the more you search, the more you consider every possibility, and the more anxious you get.
Although I don’t wish to burden you with even more information, here is a very recent article from a scientific journal about this behavior: http://bit.ly/2kVUChn

@jkenser, your body and mind have survived a tremendous journey, so it may be time for you to relax and focus on the future…and know that the Connect community is here to support you all the way.

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I agree. Mayo has a noted medical model for best results. Plus according to Medscape, mis diagnosis is a remote problem and addressed by conscientious physicians and those in medical research. JIM>>

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Hi,
You will never feel “like yourself” again because cancer changes you. You can make it for the good or the bad. I said the same thing to my nurses. I am a brain tumor survivor and nurse too. They told me I was different now because you can’t go through a fight for your life and not be different. Accept the change. Manage your symptoms if needed but you are a new person. I was diagnosed with same thing but grade 2 and they gave me 5-7 years to live and that was 15 years ago and my tumor remains stable. I was not a candidate for surgery or radiation. I only had a biopsy. I take a lot of medication and have had health problems related to the drugs but I work full time and have 3 children and 2 grandchildren. Good luck! You can do it!

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“I was different now because you can’t go through a fight for your life and not be different”.
My boyfriend went thru brain tumor surgery. he told Dr. ” I want to take my kids on 1 last vacation” The Dr. later said why was he thinking it will be his Last?
Surgery a success.
Then he went into a deeep depression.
That brain surgent said that when patients think they r going to die, then don’t, they get depressed. He even had a psychologist who he recommended cause this was so common.
My friend did not go –
we wound up breaking up (after 10 yrs.) – darn, he was the best man I ever had.
I wish u well.

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Hi, all – many of you have shared about pilocytic astrocytoma or other neurologic issues in this discussion. Wanted to catch up with you all and see how things are going recently. I believe your responses will be helpful to all those participating in this discussion.

@jczarkowski1270 – how is the dizziness?

@lynda1992 – you have made it well over two decades since your brain surgery. Impressive. How are you doing now?

@mari – how is your friend who had the brain tumor surgery?

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We're talking almost 30 years since my brain surgery! OMG! Do you believe it?! I'm doing great other than being put back on seizure medication 6 years ago after having a grand mal seizure. I remember telling myself that I was going to beat this thing. I remember telling myself that I needed to be there for my 5 year old son. I believed. My son is now in his 30's. He graduated from college 10 years ago & is doing very well for himself. I will always be there for him, but I will also always be there for anyone else who has been told, "You have a brain tumor."

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@lynda1992

We're talking almost 30 years since my brain surgery! OMG! Do you believe it?! I'm doing great other than being put back on seizure medication 6 years ago after having a grand mal seizure. I remember telling myself that I was going to beat this thing. I remember telling myself that I needed to be there for my 5 year old son. I believed. My son is now in his 30's. He graduated from college 10 years ago & is doing very well for himself. I will always be there for him, but I will also always be there for anyone else who has been told, "You have a brain tumor."

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What a wonderful story, @lynda1992, and exciting news that you are generally doing great 30 years after brain surgery and you've been able to be there for your son. You for sure are needed to walk alongside others who are told they have a brain tumor.

Do you remember any specific things others did for you after your brain surgery that were particularly helpful to you?

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@lynda1992

We're talking almost 30 years since my brain surgery! OMG! Do you believe it?! I'm doing great other than being put back on seizure medication 6 years ago after having a grand mal seizure. I remember telling myself that I was going to beat this thing. I remember telling myself that I needed to be there for my 5 year old son. I believed. My son is now in his 30's. He graduated from college 10 years ago & is doing very well for himself. I will always be there for him, but I will also always be there for anyone else who has been told, "You have a brain tumor."

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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

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@lynda1992

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?

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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".

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@bobhills

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".

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

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@colleenyoung

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

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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

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@bobhills

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

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I have no intention of living until I am 136 yrs old but while I am here I plan to enjoy every minute.

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