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lisa88bloom
@lisa88bloom

Posts: 1
Joined: Mar 22, 2017

Life after Brain surgery

Posted by @lisa88bloom, Mar 22, 2017

I had a 4 cm mengioma removed last year. It was in the skull base and was 14 hr surgery. I have a small regiment left, but watching with yearly MRIs….still have unbalance and numbness. I was curious if anyone else had a situation like this one. I spent a month in the hospital.

REPLY

Hello @lisa88bloom Nice to e-meet you here. Welcome to Connect! Sorry to hear of your health issues. I send you strength!

I am Scott and I was the primary caregiver for my wife who had brain cancer, a resection of most of her tumor, and then fought on for 14 years.

She spent a month in the hospital, six months inpatient rehab, then a year in outpatient rehab. She regained most of her abilities with her most notable deficits being left-side peripheral vision loss and math abilities.

I am happy to answer any questions you might have based on her experiences, but I certainly understand that each and every case of brain cancer is highly individualized in impacts, effects, treatments, recovery, etc.

Peace!

Liked by gloriajean

Hi Lisa,
My husband had a 3 cm meningioma removed in July. His surgery was performed in Los Angeles and was a 10 hour operation. They were not able to remove all of his tumor because part was attached to the brain stem. His meningioma was categorized as a type two which is fast growing. He suffered a small stroke along with some nerve damage resulting in paralysis in his throat and right side during the surgery. He was unable to swallow anything and was given a feeding tube. He also had to have extensive therapy to be able to walk and swallow again. In October we went to Mayo for radiation for the remainder of the tumor. Last week his feeding tube was removed and he can eat most foods. Most of his diet does consist of liquid nutrition drinks. His last MRI showed no growth in the tumor. He will continue to have MRIs every three months. Overall we have seen much improvement in the last eight months

I had a pineal germinoma brain tumor 20 years ago. My biggest challenges now are dealing with the late effects of the chemotherapy & radiation treatments. I have chronic fatigue and problems with my balance. I’m also on hormone replacements. The things that seem to help the most are pacing myself and focusing on one day at a time.

I had radiation treatment following the removal of a tumor growing around my pituitary over 20 year ago. I too have had multiple problems that I believe are related to the radiation therapy. Fatigue is a problem along with multiple other problems. Trying to find an exact answer seems difficult because there are, I believe, little studies done of the long term quality of life effects of radiation therapy. I was in my 20’s when I had it. Have you been able to find articles that confirm your suspicion?

Hello @robinlynn, Welcome to Mayo Clinic Connect! Thank you for posting. This community is a safe place for you to meet other people discussing their medical related experiences. We all learn from so much from each other!

Here is a link to Mayo Clinic’s discussion on Pituitary tumors http://mayocl.in/2h5kGbu where they discuss treatment. I have also added another link to our research information center http://mayocl.in/2rpp3SW in hopes of digging up information on post radiation therapy. I hope you find both helpful.

What other problems besides fatigue have you been experiencing?
I wonder if starting a new topic thread in the cancer group about post radiation symptoms and how others are coping would be something you would be interested in? If so, I can walk you through the process or you can give it a go if you are interested. I am curious in knowing how many other people are asking some of the same questions.

@robinlynn

I had radiation treatment following the removal of a tumor growing around my pituitary over 20 year ago. I too have had multiple problems that I believe are related to the radiation therapy. Fatigue is a problem along with multiple other problems. Trying to find an exact answer seems difficult because there are, I believe, little studies done of the long term quality of life effects of radiation therapy. I was in my 20’s when I had it. Have you been able to find articles that confirm your suspicion?

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Hi @robinlynn Nice to e-meet you here on Connect. Sorry to hear of your issues with fatigue. I am Scott and my wife also suffered from fatigue during her post-treatment times. Her doctor explained to her healing her body could often require extraordinary amounts of energy at times. Also he said as the body adjusts to a new reality post-treatment of any kind more energy may be necessary for prior practices that didn’t demand as much energy as before.

No magic words, but I wanted to share those insights, which helped her adjust and manage better.

Peace & strength

I have found some information about the late effects of radiation treatments. Most of my doctors tell me the radiation treatments were likely the main cause of many of the late effects I’m experiencing.
@robinlynn

@jamienolson

Hello @robinlynn, Welcome to Mayo Clinic Connect! Thank you for posting. This community is a safe place for you to meet other people discussing their medical related experiences. We all learn from so much from each other!

Here is a link to Mayo Clinic’s discussion on Pituitary tumors http://mayocl.in/2h5kGbu where they discuss treatment. I have also added another link to our research information center http://mayocl.in/2rpp3SW in hopes of digging up information on post radiation therapy. I hope you find both helpful.

What other problems besides fatigue have you been experiencing?
I wonder if starting a new topic thread in the cancer group about post radiation symptoms and how others are coping would be something you would be interested in? If so, I can walk you through the process or you can give it a go if you are interested. I am curious in knowing how many other people are asking some of the same questions.

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In addition to lack of energy which is so bad that if I don’t take adderall in the mornings I won’t get anything done around the house and tend to want to lay around, I have recall problems and problems committing newly learned things to memory. Someone once asked me if I had any brothers and sisters and I answered no. I believed, I didn’t because at that moment because I couldn’t remember. A few minutes later, I remembers that I did have two brothers and one sister. Recall is also a problem, sometimes I can’t find the right word and say the wrong word instead or get the facts word. For instance I was telling my son the story about God when he walked on water and offered his hand to one of his disciples and said that if he had faith he too could walk on water. Instead I said to my son, when Jesus was walking on water he offered his hand to the disciple offered him his hand to get into his car.

I actually had my tumor removed, followed by radiation therapy and was part of a drug study at Mayo Clinic which is why I came back to the site. I love Mayo and received GREAT care. (side note – one of the nicest thing that my doctor did when I was first diagnosed with acromegaly was to to give me a hug and recognize that I’ve been through a lot of changes with my body. Dr. Charles Abboud – I’ll never forget his kindness.)

I’ve also had psych evaluations as far back as 2005 at which time the doctor said it my problems would not get worse. But fast forward to 2017 and my problems are much worse. I can no longer hold the type of jobs I had and only work part time. My life style and quality of life has been greatly impacted. At this point I want to believe things with my memory won’t get worse and I certainly hope they don’t. I have a 17 year old son that needs me. I’m afraid for the future to tell you the truth.

@jamienolson

Hello @robinlynn, Welcome to Mayo Clinic Connect! Thank you for posting. This community is a safe place for you to meet other people discussing their medical related experiences. We all learn from so much from each other!

Here is a link to Mayo Clinic’s discussion on Pituitary tumors http://mayocl.in/2h5kGbu where they discuss treatment. I have also added another link to our research information center http://mayocl.in/2rpp3SW in hopes of digging up information on post radiation therapy. I hope you find both helpful.

What other problems besides fatigue have you been experiencing?
I wonder if starting a new topic thread in the cancer group about post radiation symptoms and how others are coping would be something you would be interested in? If so, I can walk you through the process or you can give it a go if you are interested. I am curious in knowing how many other people are asking some of the same questions.

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I also have memory problems, especially with recall and learning new things. I attended college two years after my cancer treatments and had difficulties with learning. My memory has also gotten worse over time. I had to come home from college in the spring of 2004 due to chronic fatigue and memory problems.

I have to take things at a slow pace and try not to overdo myself, which is easier said than done. Some of the doctors I’ve seen have said that the problems I’m having are more so from the radiation than the chemotherapy. I have to stay focused on one day at a time.

@1997bcs

@1997bcs

I have found some information about the late effects of radiation treatments. Most of my doctors tell me the radiation treatments were likely the main cause of many of the late effects I’m experiencing.
@robinlynn

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Hi Robin,
Sorry you are having these problems. What type of radiation did you have? Was it Gamma Knife or Cyber Knife.
Thank You,
Nancy

My daughter had brain surgery 5 months ago and she feels like her emotions have gone crazy at times. Mood swings & less patience is how she describes it and is wondering if that is a result of her surgery. I know she gets so frustrated and stressed at times. I hate it for her. Anyone else have these problems after surgery?

@lmp1

My daughter had brain surgery 5 months ago and she feels like her emotions have gone crazy at times. Mood swings & less patience is how she describes it and is wondering if that is a result of her surgery. I know she gets so frustrated and stressed at times. I hate it for her. Anyone else have these problems after surgery?

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I had surgery a little over 6 months ago and have definitely struggles with my emotions. I cry ridiculously easy now and can get frustrated quickly, especially if I am over tired. Feel free to reach out to me if you have any questions or just want to talk to someone that has been through brain surgery =) Ill keep your daughter in my prayers.

@lmp1

My daughter had brain surgery 5 months ago and she feels like her emotions have gone crazy at times. Mood swings & less patience is how she describes it and is wondering if that is a result of her surgery. I know she gets so frustrated and stressed at times. I hate it for her. Anyone else have these problems after surgery?

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Thank you @jkenser. From what you replied that sounds so much like my daughter. Are you having any radiation or chemo? What type of tumor did you have? I hope you are doing well. I have talked to a few different ones going through similar situations and it does help to talk. There isn’t a support group near where I live so I’m so glad I can connect to people on here. It has helped so much. I tell her everything I learn and if she has questions she has me ask.

@lmp1

My daughter had brain surgery 5 months ago and she feels like her emotions have gone crazy at times. Mood swings & less patience is how she describes it and is wondering if that is a result of her surgery. I know she gets so frustrated and stressed at times. I hate it for her. Anyone else have these problems after surgery?

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Yes Danica has had the same mood swings as well and still does. They put her on clonidine! @lmp1

@lmp1

My daughter had brain surgery 5 months ago and she feels like her emotions have gone crazy at times. Mood swings & less patience is how she describes it and is wondering if that is a result of her surgery. I know she gets so frustrated and stressed at times. I hate it for her. Anyone else have these problems after surgery?

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I tried sending a message that was very long but it would not send to you I’m so sorry! @lmp1

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