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Orko

739d

I have a subependymoma in my 4th ventricle. I don’t always feel believed by my doctors about the symptoms I experience. 😐 I don’t think a lot is known about these types of tumors but would love to know if anyone else out there has one and feels supported by their health care providers?

    • Trumpet_Man

      520d

      I’m scheduled for gamma knife surgery for a hemangioblastoma. Has anyone had this procedure done? And we’re there any side effects?

      • Mamasboys

        519d

        @Trumpet_Man I didn’t personally but I also have a brain tumor and had a craniotomy… I know a few people who had gamma knife and they said it wasn’t bad it’s more of the process that was stressful like the mask and getting set up. But the procedure itself was fairly quick. The side effects can be different for everyone some may include fatigue, headaches, possible hair loss in that area, swelling or none at all. 🙏 most important is to have faith and stay calm. Blessings for you

        • Trumpet_Man

          513d

          @Mamasboys thank you plenty for your reply much appreciated.

    • IzzahRose

      729d

      I have a subependymoma tumor in my 4th ventricle. I was diagnosed in 2015. It is benign and considered a slow growing tumor. I had a decompression surgery in 2019 because I had Chiari Malformation as well…so my neurosurgeon took my tumor out leaving 5% behind due to it being close to my brain stem. I still go yearly for MRIs to make sure the tumor isn’t growing and that everything looks ok

    • Rperry130

      734d

      ❤️

    • JetMan

      735d

      From what I noticed, for example handicapped people usually get much better social attitudes just because people can “see” their “illness”. When it’s your brain that f*cked up your life completely, most of the time it’s not obvious for everyone else as they don’t see any physical impairment. I wish that could be a way to inform people of your sufferings without saying anything or arguing about it.

    • Mamasboys

      735d

      Most pcp doctors don’t understand these issues. We really need to see a neurologist or neurosurgeon who can understand our illnesses. It’s also important to get more than one opinion. I did this before I decided to get my craniotomy.

    • Rperry130

      735d

      I had/have a 5 cm acoustic neuroma that started to put pressure on and move the brainstem and 4th ventricle over midline. I don’t really know what a ventricle is responsible for. I have a moderate cognitive impairment and a lot of speech language and motor planning issues. I don’t remember the surgery or anything that’s like episodic memory (from the brain injury long ago) so this communication issue was not really known about until I went to the er three times with “stroke like symptoms “. They didn’t think they should be aware of my health history so they said anxiety is my issue now but I have also been going to specialists and neuro rehab

    • JetMan

      736d

      Hello, very good point. I have a Meningioma as well and I was shocked to see how ER doctors are not familiar enough of it and all the symptoms. Moreover, I was ashamed couple of times by some of them when I was in ER, by ignoring everything I said about meningioma and getting some giggling and strange nonverbal signals between them. I don’t know how to transcribe it but I felt so deep ashamed of the illness I have even though I’ve never chosen that to my life.

    • Mamasboys

      736d

      Hi I have not heard of this. I have a Meningioma but yes I definitely agree that my doctors don’t understand me and are impatient

☝ 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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