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Piano_Player

750d

I would like to know your experience with a meningioma. Mine is behind left eye affecting sight nerves and cradling carotid. I am a little overwhelmed. Thank you for sharing if you choose to.

Top reply
    • Mamasboys

      706d

      @Piano_Player yes I absolutely agree šŸ™

    • Piano_Player

      706d

      Here is a follow up from 1 month ago. I saw amazing neurosurgeon-surgeon at MDAnderson in Houston. I had 5 proton radiation treatments. I will have neuro ophthalmologist appointment for further sight tests in 2 weeks; I have seen a neurologist for tests on forgetfulness/short term memory episodes. All will give me an update/overview in June. This is following a craniotomy 6 years ago in a different hospital that should have been avoided. Do everything you can to see the most EXPERIENCED neuro-surgeons in your particular problem. It makes a world of difference.

      • Mamasboys

        706d

        @Piano_Player yes I absolutely agree šŸ™

    • Cindy_Mckinney

      713d

      My brain back to lightest is making me have stroke like symptoms headaches pain in my body and blurred vision

    • Cindy_Mckinney

      714d

      Well I hit seizures with this condition

    • Cindy_Mckinney

      714d

      Is this a rare condition

    • Cindy_Mckinney

      714d

      What are the symptoms

    • Cindy_Mckinney

      714d

      šŸ‘ I have brain vasculitis and I'm trying to find out as much information about it as possible

    • Mamasboys

      749d

      Itā€™s procedure to put you on anti seizure meds, antibiotics, steroids for a while so that messed me up a bit with my stomach and just feeling weird. I had a therapist who came to my hime and a nurse for a few weeks and eventually I was able to do most things normally.

    • Mamasboys

      749d

      The recovery wasnā€™t as bad as I thought given that I had brain surgery. I was able to sit up and slowly walk the room. I was kept in hospital for 6 days which is longer than most. I had some issues with my right eye not opening and vision in that eye was distorted.

    • Mamasboys

      749d

      Hi Iā€™m sorry for what your going through I know how difficult it is. I was diagnosed in 2017 it was an incidental finding so of course shocking. Went to 3 different neurosurgeons and radiation oncologists. Most recommended a craniotomy. I said I wanted to wait and watch. Mine is also attached to my optic nerve on right side though. I really had no side effects but I did always suffer from migraines and headaches since childhood so who knows? So in 2018 I started having eye problems and getting vision issues. Neurosurgeon said itā€™s time to do craniotomy to save my vision. So I did it and they couldnā€™t remove entire tumor due to location, they got about 80% out. I was told it was the size of a marble.

ā˜ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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