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What's your life like after Brain surgery?

Posted by lisa88bloom @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.

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hyoung79 | @hyoung79 | Apr 16, 2019
In reply to @tiffanygal "I had 2 removed in 2005 with no problems until 3 years ago. Dr said it’s..." + (show)
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I had 2 removed in 2005 with no problems until 3 years ago. Dr said it’s scar tissue and nothing can be done. I have fatigue and extreme dizziness now for 3 years it’s horrible.

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So encephelomalacia is scar tissue and is causing these symptoms?

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tiffanygal | @tiffanygal | Apr 13, 2019

I had 2 removed in 2005 with no problems until 3 years ago. Dr said it’s scar tissue and nothing can be done. I have fatigue and extreme dizziness now for 3 years it’s horrible.
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hyoung79 | @hyoung79 | Apr 13, 2019

Hello everyone! I had a 3 cm cerebellar meningioma removed in Oct 2017. I went back to work in Jan 2018 only to be off now on medical leave since May 2018. I'm having major issues with imbalance, dizziness, headaches, and throbbing head pain. An MRI and Ct scan show encephelomalacia. The doctors assure me this is normal after brain surgery, however I'm curious to know if this could be causing all these symptoms? Anyone know anything about this?

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siobhanmcv | @siobhanmcv | Mar 16, 2019

Is it a foreman magnum meningioma?

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Colleen Young, Connect Director | @colleenyoung | Feb 10, 2019
In reply to @buc091274 "Anyone else suffer from long time effects of depression ?" + (show)
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Anyone else suffer from long time effects of depression ?

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Welcome to Connect, @buc091274. Are you dealing with depression as a long-term side effects of brain tumor?

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siobhanmcv | @siobhanmcv | Feb 8, 2019

Hi Lisa,
Was it a foreman magnum meningioma?

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buc091274 | @buc091274 | Jan 27, 2019

Anyone else suffer from long time effects of depression ?

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siobhanmcv | @siobhanmcv | Jan 26, 2019
In reply to @colleenyoung "@siobhanmcv, welcome to Connect. It must be confusing to receive opposing view points. You are wise..." + (show)
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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?

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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.

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kelliegirl33 | @kelliegirl33 | Jan 25, 2019

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.

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Colleen Young, Connect Director | @colleenyoung | Jan 24, 2019
In reply to @siobhanmcv "I’m so sorry to hear about your husband’s struggles. What an awful ordeal. Based on what..." + (show)
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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.

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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?

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