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 Support Group.

I can only imagine.  A retired nurse and for over past year, dizziness/nausea.  My initial visit with the physician was credible, the later visits were a disaster(different physicians).  Searching for the right term in the right diagnosis was my challenge. Was fortunate, the CAT and brain MRI was negative for tumor, but still. The symptoms that originate from the brain can tax abilities to do ADL's, computer use, on and on.  Luckily I found driving my most stable activity, otherwise I was ready for Senior Village.  Similar to other diseases, after the initial diagnosis(so long done by a credible physician), to work on he symptoms.  Dizziness can affect self loci(many still do not understand consciousness), but I know when extremely dizzy, it affected my self(where ever it is found).  And in some research about ALS after initial proper diagnosis and treatment, rehab. is nutrition. Again, many physicians and generic information is not helpful.  There are good fats.  I find eggs invaluable(one egg a day), plus use quercetin(found in apples, onions), helpful to reduce any semblance to dizziness.  It took months to direct physicians about clarification that dizziness is not vertigo normally.  There is much sloppy generic medicine out there, but happily much great research, science based to give one hope...and never to forget a supportive group, with a solid spiritual base is helpful also.  Hopefully less symptoms and get your education and future.  JIM>>>>

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Hi @jkenser,
Six weeks doesn't seem like a very long time post brain surgery to be feeling 100% already. Keep in mind, I'm not a health care professional nor have I had brain surgery. But, I wonder if you are putting undue pressure on yourself. Focus on your well-being, your mental health to reduce the anxiety and concentrate on getting good sleep. Sleep is a great healer. Getting better sleep will help the other things fall into place.

I hope @cleahy85 and @lynda1992 can share more about recovering after surgery for a pilocytic astrocytoma. I know @cynaburst and @dawn_giacabazi can share wise words about giving yourself time and patience to heal.

Jkenser, what do you do to help yourself sleep?

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@colleenyoung

Hi @jkenser,
Six weeks doesn't seem like a very long time post brain surgery to be feeling 100% already. Keep in mind, I'm not a health care professional nor have I had brain surgery. But, I wonder if you are putting undue pressure on yourself. Focus on your well-being, your mental health to reduce the anxiety and concentrate on getting good sleep. Sleep is a great healer. Getting better sleep will help the other things fall into place.

I hope @cleahy85 and @lynda1992 can share more about recovering after surgery for a pilocytic astrocytoma. I know @cynaburst and @dawn_giacabazi can share wise words about giving yourself time and patience to heal.

Jkenser, what do you do to help yourself sleep?

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Hi Colleen,
Thank you for your response. Funny you should ask about sleep, as I am not sleeping well at all. I wake up a million times a night =( Unfortunately I am one of those people that does not want to take anything for anxiety or sleep because the thought of that makes me anxious.. I am one big mess. I would love to talk with others that have had pilocytic astrocytomas whose surgeries were a success. I am trying to stay away from google as that only feeds my anxiety. Thank you =)

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Hello @jkenser Nice to e-meet you here. I am Scott and while I have not had brain surgery nor am I a medical professional, I was the fulltime caregiver for my wife for 14 years while she battled her brain cancer. I will second the comment by @colleenyoung that six weeks is a very short time. I realize each case, cancer, and surgery are unique. However, in my wife's case she never felt exactly as she did prior to surgery. She finally felt 'at her best' after about 18 months. In addition to her PT and OT my wife found comfort in nature and meditation. In contemplation she found what peace and acceptance she could in her condition.

Strength and peace,

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@colleenyoung

Hi @jkenser,
Six weeks doesn't seem like a very long time post brain surgery to be feeling 100% already. Keep in mind, I'm not a health care professional nor have I had brain surgery. But, I wonder if you are putting undue pressure on yourself. Focus on your well-being, your mental health to reduce the anxiety and concentrate on getting good sleep. Sleep is a great healer. Getting better sleep will help the other things fall into place.

I hope @cleahy85 and @lynda1992 can share more about recovering after surgery for a pilocytic astrocytoma. I know @cynaburst and @dawn_giacabazi can share wise words about giving yourself time and patience to heal.

Jkenser, what do you do to help yourself sleep?

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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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@colleenyoung

Hi @jkenser,
Six weeks doesn't seem like a very long time post brain surgery to be feeling 100% already. Keep in mind, I'm not a health care professional nor have I had brain surgery. But, I wonder if you are putting undue pressure on yourself. Focus on your well-being, your mental health to reduce the anxiety and concentrate on getting good sleep. Sleep is a great healer. Getting better sleep will help the other things fall into place.

I hope @cleahy85 and @lynda1992 can share more about recovering after surgery for a pilocytic astrocytoma. I know @cynaburst and @dawn_giacabazi can share wise words about giving yourself time and patience to heal.

Jkenser, what do you do to help yourself sleep?

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@jkenser,
I really like Lynda and Scott's suggestions. Here's an article from Mayo Clinic called "Sleep tips: 7 steps to better sleep" http://mayocl.in/1GKQsv9 I know many of things are easier said than done, but it might be a good place to start.

I wish you a good sleep tonight.
Colleen

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Thank you everyone! So I started searching things on the internet again.. Ended up in tears and with extreme fear. Now I am thinking that Mayo maybe got my diagnosis wrong.. Mayo wouldn't diagnose my tumor wrong would they????? That's impossible right??? I think I am losing it. This fear is ridiculous.

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@colleenyoung

Hi @jkenser,
Six weeks doesn't seem like a very long time post brain surgery to be feeling 100% already. Keep in mind, I'm not a health care professional nor have I had brain surgery. But, I wonder if you are putting undue pressure on yourself. Focus on your well-being, your mental health to reduce the anxiety and concentrate on getting good sleep. Sleep is a great healer. Getting better sleep will help the other things fall into place.

I hope @cleahy85 and @lynda1992 can share more about recovering after surgery for a pilocytic astrocytoma. I know @cynaburst and @dawn_giacabazi can share wise words about giving yourself time and patience to heal.

Jkenser, what do you do to help yourself sleep?

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Thank you. Colleen there is no way Mayo would have diagnosed my brain tumor wrong right? If they said it is a grade 1 pilocytic astrocytoma then that's what it was right?? I made the mistake of searching the internet tonight which left me riddled with fear and anxiety. I hate that I feel this way =(

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It is very unlikely that they misdiagnosed your tumor. I think you need to give yourself a break, and try to take it day by day. I had a large acoustic neuroma removed, and to tell you the truth, I was not back to myself for at least 6 months. I was in physican and vestibular therapy for several months, and learning how to deal with my "new normal." Chances are you will never be exactly as you were before the surgery. You may even be better in some ways, especially since you are a health care provider. You have gained a new understanding of what your own patients are going through, and can use that in taking care of them.

Be kind to yourself and let your body heal. It has been through a big insult and it will take time to get back to normal. I recently had a small growth removed from my nostril, and it took me close to 2 months to get over that! The pain and swelling take time to go down. I wasn't even able to read or watch tv for a month or two. Give yourself a break!

REPLY
@colleenyoung

Hi @jkenser,
Six weeks doesn't seem like a very long time post brain surgery to be feeling 100% already. Keep in mind, I'm not a health care professional nor have I had brain surgery. But, I wonder if you are putting undue pressure on yourself. Focus on your well-being, your mental health to reduce the anxiety and concentrate on getting good sleep. Sleep is a great healer. Getting better sleep will help the other things fall into place.

I hope @cleahy85 and @lynda1992 can share more about recovering after surgery for a pilocytic astrocytoma. I know @cynaburst and @dawn_giacabazi can share wise words about giving yourself time and patience to heal.

Jkenser, what do you do to help yourself sleep?

Jump to this post

When I need to get to sleep or if I want a short power Nap. I play Hypnotic recording from U-tube and get a really Deep sleep.

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