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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

@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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Ok I didn’t get one. That happens sometimes. It’s no problem. Hope all is well as can be. @daniellemarie

@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! Hope you and your daughter are well too! Danica has been getting tired and sore legs and feet which are side effects to tafinlar oral chemo @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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Bless her heart! If you private message me your address I would love to send her a card. @daniellemarie

Liked by daniellemarie

I had 2 Brain tumors removed in 2005. One was the size of a softball and the other was like a golf ball. All went well till 2016. For the last 2 years I can’t stand without swaying, dizzy always and totally fatigued. Went back to the neurologist and was told it was from scar tissue. There is nothing that can be done to help me he said.

@tiffanygal

I had 2 Brain tumors removed in 2005. One was the size of a softball and the other was like a golf ball. All went well till 2016. For the last 2 years I can’t stand without swaying, dizzy always and totally fatigued. Went back to the neurologist and was told it was from scar tissue. There is nothing that can be done to help me he said.

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I am sorry to hear that. I wish I could help in some way but I am so new to this

@tiffanygal

I had 2 Brain tumors removed in 2005. One was the size of a softball and the other was like a golf ball. All went well till 2016. For the last 2 years I can’t stand without swaying, dizzy always and totally fatigued. Went back to the neurologist and was told it was from scar tissue. There is nothing that can be done to help me he said.

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Hello @tiffanygal Nice to e-meet you here on Mayo Connect. I am sorry to read of your healthcare journey. I wish I had some words of wisdom for you in this situation, but all I can say, based on my wife's journey, is never lose hope and keep watching the newest discoveries in neuro-oncology! This area of medicine and science is changing almost constantly and one never knows when a new discovery or treatment might be helpful. It was amazing to us how much treatments changed in the years of my wife's journey.

When she was diagnosed there was no idea of gene therapies, etc.

Strength, courage, and peace!

@tiffanygal

I had 2 Brain tumors removed in 2005. One was the size of a softball and the other was like a golf ball. All went well till 2016. For the last 2 years I can’t stand without swaying, dizzy always and totally fatigued. Went back to the neurologist and was told it was from scar tissue. There is nothing that can be done to help me he said.

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@tiffanygal that is such a harsh thing to hear — that nothing can be done. Have you considered a second opinion or getting input from a multidisciplinary team? I'm not a medical professional, but I wonder if you could work with physical medicine and rehabilitation (physiatrists) and/or physical therapists to help with the swaying, balance and dizziness.

@kimf

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

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I’m so sorry to hear about your husband’s struggles. What an awful ordeal. Based on what has been effected, was his a foreman magnum meningioma by any chance? It’s such a rare area for a meningioma and I’m not finding many testimonies or people to compare notes with.
I was diagnosed in Oct of 2017 but put off surgery until June of 2018 so I could have a chance to prepare if I was looking at an extended recovery. I had a craniotomy, but once they got in, it was deemed too dangerous to remove or even biopsy. The tumor was too incased in vital nerves…controlling breathing, swallowing and use of tongue. Had my surgeon tried, I would have suffered the same consequences as your husband. Reading this, I suppose I was lucky that I didn’t suffer any neurological damage from the attempt, but my incision site has since collapsed and my symptoms are getting worse and much harder to control.. The pressure is unbelievable. I also have an artery that is engaged with the growth combined with scar tissue my head feels like a constant pressure cooker. The left side of my head is always tingling and sensitive. The headaches are constant. I work as a singer/entertainer and have come close to blacking out during a performance more times than I can count.
I was scheduled for radiation but sought a 2nd opinion and this new team of doctors is saying that radiation could do more damage than good without a biopsy. One surgeon on this tumor board had a similar case and the tumor was completely removed through the patient’s nose.
I was told at the first facility that I was out of options and my tumor was now considered inoperable… but I’m now hopeful that there may be a less invasive approach to getting rid of this.
I’m thinking of seeking a 3rd opinion at the Mayo Clinic. It would require travel and could be an extreme hardship on my family so I really need to weigh my options carefully.
Has your experience been positive?

Sending good thoughts to you and your husband.

@siobhanmcv

I’m so sorry to hear about your husband’s struggles. What an awful ordeal. Based on what has been effected, was his a foreman magnum meningioma by any chance? It’s such a rare area for a meningioma and I’m not finding many testimonies or people to compare notes with.
I was diagnosed in Oct of 2017 but put off surgery until June of 2018 so I could have a chance to prepare if I was looking at an extended recovery. I had a craniotomy, but once they got in, it was deemed too dangerous to remove or even biopsy. The tumor was too incased in vital nerves…controlling breathing, swallowing and use of tongue. Had my surgeon tried, I would have suffered the same consequences as your husband. Reading this, I suppose I was lucky that I didn’t suffer any neurological damage from the attempt, but my incision site has since collapsed and my symptoms are getting worse and much harder to control.. The pressure is unbelievable. I also have an artery that is engaged with the growth combined with scar tissue my head feels like a constant pressure cooker. The left side of my head is always tingling and sensitive. The headaches are constant. I work as a singer/entertainer and have come close to blacking out during a performance more times than I can count.
I was scheduled for radiation but sought a 2nd opinion and this new team of doctors is saying that radiation could do more damage than good without a biopsy. One surgeon on this tumor board had a similar case and the tumor was completely removed through the patient’s nose.
I was told at the first facility that I was out of options and my tumor was now considered inoperable… but I’m now hopeful that there may be a less invasive approach to getting rid of this.
I’m thinking of seeking a 3rd opinion at the Mayo Clinic. It would require travel and could be an extreme hardship on my family so I really need to weigh my options carefully.
Has your experience been positive?

Sending good thoughts to you and your husband.

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I am so sorry you are going through this. I had a craniotomy on Aug 28, 2018. What does your incision site feel like when you touch it? Mine feels very sunk in. I was wondering if it could be collapsing. I go back to my neurosurgeon in March for my 6 months recheck. I still have 15% of the meningeoma left because they couldn't risk removing all of it. All of this is still new to me and just trying to figure out what is "normal" after having this surgery
Thank you,
Mandy

@mrector

I am so sorry you are going through this. I had a craniotomy on Aug 28, 2018. What does your incision site feel like when you touch it? Mine feels very sunk in. I was wondering if it could be collapsing. I go back to my neurosurgeon in March for my 6 months recheck. I still have 15% of the meningeoma left because they couldn't risk removing all of it. All of this is still new to me and just trying to figure out what is "normal" after having this surgery
Thank you,
Mandy

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Your post made me remember two things my wife's neuro-oncologist said to us after her craniotomy. In the waiting room we asked 'when will she be back to normal'. He said "I suggest you think of this not as a new normal, rather a new different". He also said "It's important to remember that every patient, brain, and tumor are unique so your wife and mom's post-surgery journey will also be unique."

Not anything earth-shaking, but his words did help us move forward with a better understanding of what might, and did, lay ahead.

Strength, courage, and peace!

@IndianaScott

Your post made me remember two things my wife's neuro-oncologist said to us after her craniotomy. In the waiting room we asked 'when will she be back to normal'. He said "I suggest you think of this not as a new normal, rather a new different". He also said "It's important to remember that every patient, brain, and tumor are unique so your wife and mom's post-surgery journey will also be unique."

Not anything earth-shaking, but his words did help us move forward with a better understanding of what might, and did, lay ahead.

Strength, courage, and peace!

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Thank you for that. I have lost most of my vision in my left eye due to the meningeoma and my neurosurgeon said I would eventually lose all of the vision in that eye. So I understand the new different. I take one day at a time and just thankful to be alive.

@siobhanmcv

I’m so sorry to hear about your husband’s struggles. What an awful ordeal. Based on what has been effected, was his a foreman magnum meningioma by any chance? It’s such a rare area for a meningioma and I’m not finding many testimonies or people to compare notes with.
I was diagnosed in Oct of 2017 but put off surgery until June of 2018 so I could have a chance to prepare if I was looking at an extended recovery. I had a craniotomy, but once they got in, it was deemed too dangerous to remove or even biopsy. The tumor was too incased in vital nerves…controlling breathing, swallowing and use of tongue. Had my surgeon tried, I would have suffered the same consequences as your husband. Reading this, I suppose I was lucky that I didn’t suffer any neurological damage from the attempt, but my incision site has since collapsed and my symptoms are getting worse and much harder to control.. The pressure is unbelievable. I also have an artery that is engaged with the growth combined with scar tissue my head feels like a constant pressure cooker. The left side of my head is always tingling and sensitive. The headaches are constant. I work as a singer/entertainer and have come close to blacking out during a performance more times than I can count.
I was scheduled for radiation but sought a 2nd opinion and this new team of doctors is saying that radiation could do more damage than good without a biopsy. One surgeon on this tumor board had a similar case and the tumor was completely removed through the patient’s nose.
I was told at the first facility that I was out of options and my tumor was now considered inoperable… but I’m now hopeful that there may be a less invasive approach to getting rid of this.
I’m thinking of seeking a 3rd opinion at the Mayo Clinic. It would require travel and could be an extreme hardship on my family so I really need to weigh my options carefully.
Has your experience been positive?

Sending good thoughts to you and your husband.

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@siobhanmcv, welcome to Connect. It must be confusing to receive opposing view points. You are wise to carefully consider your options given the travel, expense and consequences to your family.

I might suggest that you can contact Mayo Clinic, share your medical records and see what options may be available before traveling or incurring costs. Here is the contact information: https://www.mayoclinic.org/appointments
Mayo Clinic offers appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your treatment options and answer your questions.

I can't imagine singing and performing with such pressure in your head due to scar tissue. Are you still working?

Liked by mrector

I had a schwannoma tumor growing from my optic nerve. It took 2 craniotomies to remove…but that's only because the first neurologist diagnosed the tumor wrong..he thought it was a meningioma tumor. The result of the first craniotomy was not removing the tumor and loss of peripheral vision and double vision for about 1 month afterwards. I was then sent to another neurologist who diagnosed it as a schwannoma tumor. The second craniotomy resulted in removal of the tumor, however, there was some damage done. I can no longer use my left eye. Also, the brain tumor was pushing against the pituitary gland and damaged it causing me to get diabetes insipidus ( water diabetes) They also found an orbital mass…they are continuing to watch it with yearly mri's. It's been a struggle…I really miss driving. But I am very thankful I am not completely blind.

Liked by mrector

@colleenyoung

@siobhanmcv, welcome to Connect. It must be confusing to receive opposing view points. You are wise to carefully consider your options given the travel, expense and consequences to your family.

I might suggest that you can contact Mayo Clinic, share your medical records and see what options may be available before traveling or incurring costs. Here is the contact information: https://www.mayoclinic.org/appointments
Mayo Clinic offers appointments within 48 hours through the the Brain Tumor 48-access program. Experts at the Mayo Clinic can help you navigate your treatment options and answer your questions.

I can't imagine singing and performing with such pressure in your head due to scar tissue. Are you still working?

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Hi Colleen,
Thanks so much for the reply and info. I’ll be contacting them tomorrow. I feel as if a third opinion is the wise thing to do.l at this point. Yes, I am still singing and performing. According to my doctors, I have a very high tolerance for pain. I suppose that’s what gives me the edge. I have do to be careful and make sure that if I have to hit a sustained note at the high end of my range, that there is a chair nearby to lean on. It’s happening more frequently, but I find the more I keep moving, the better I feel….so work is the best distraction. I have an incredible support system at home and work…I’m lucky.

Anyone else suffer from long time effects of depression ?

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