BrainTumors

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    Why me? # I have three disabilities not one!

    #BipolarDisorder not just bipolar disorder but Ankylosing Spondylitis and brain trauma. They are the mighty three. They have ruled me since 1974. They tell me there a trigger for my bipolar disorder, and that brain tumor AVM deadly until the surgeon removed it and replaced it with foam, and included a titanium plate in my skull, and doctors say it was there from birth and a trigger made it grow. Two triggers and one that hit me hard one morning when I couldn’t get out of bed. I just thought I had slept crowded up against the wall. That one has grown worse and worse over my life from age 39 until now age 71. If I live long enough I won’t be able to move. I am truly disabled with three serious illnesses and I have to fight the insurance company for my pain medication!

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    In medical limbo

    Had an EEG last Thursday. Reason is falls & other symptoms. I know the results can help diagnose dementia , brain tumors & dementia along with other things. My brother died from a brain tumor last month, seizures would mean no driving & loss of independence. Dementia is the most terrifying. I will stockpile meds if I have this. I’ve seen it play out, not for me
    #Waiting anxiously

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    When hydrotherapy takes you into a 6 hour E.R. visit! Yep, no more therapy in heated water.

    So, my hydrotherapy that I wanted so long turned out to be a bit of a physical nightmare. I think I had 6 sessions so far. Five in the heated tank and one I pushed them for when the heat wasn’t working (cold) water. Yes, the cold was the best for my body as I thought it would be. Out of six sessions. Fifty percent of them I went in on a rollator/cane and came out the same way. Fifty percent of them left me unable to walk at all and required a wheelchair to leave. Two times while in the tank my body went into major immediate symptoms that required the tank to be drained and getting me out right now. Last week, my session ended abruptly requiring the therapist to call for help and a wheelchair to get me to the emergency room immediately. Six hours later I was on my way home.

    The bad news: Each hydrotherapy session in heated water quite literally felt like it tortured my body. Not just for the session but for the rest of the day and two to three days afterwards. Then, it was time to go again and do it all over. I’ve been telling my neurologist for the entire time that my body is suffering immensely with heat/humidity!! I KNOW. I know because I live in a home without a/c or central air, and the summer’s that I’ve lived for my whole life are now intolerable in every way. Why is my voice not heard?

    The good news: I don’t have a brain tumor (they did a ct scan), not that I thought I did. I didn’t have a stroke.

    The e.r. Dept wants the doc to continue looking at ms and autoimmune illnesses. She also said that the spine stimulator in my body that I’m currently not using NEEDS to be removed. I’ve nobody to do that and who’s going to pay for it?

    Now, the therapy department informed me that they will not allow me to continue hydrotherapy at all. They believe that something is attacking my nerves. Umm 🤔 yes, I believe that as well! I feel like my doc does not listen to me at all.

    It’s all ground or machine therapy from here on out. This will be so challenging as well seeing how my body can only walk 15-20 minutes max before my feet fold under, the numbness, pain and burning take over 2/3 of my body and I become unable to walk no matter if I’m using a rollator or not. I keep having vision episodes, facial numbing, head tingling and on and in it goes, along with limbs full of numbness and weakness the pain is severe and it is daily.

    Today, I’ve therapy in the afternoon, then it’s my sleep deprived eeg in the morning. Wow, what fun I’m going to have in the next 24 hours (my body), NOT! How I’m going to stay awake is the question of the day? Oh hell. 😬 Wish me luck you beautiful people!💕
    #MightyTogether #Undiagnosed #CheckInWithMe #MultipleHealthChallenges

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    Totally confused

    #PseudotumorCerebri . I was diagnosed a month ago and boy has it been miserable. However they didn’t exactly tell me what it is just that fluid builds up creating pressure. One if my friends says it’s like having a brain tumor without the tumor. Which I can believe. So can someone explain what this is to me please.

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    I’m new here!

    Hi, my name is mzjan. I'm here because I have Bipolar with a Brain Tumor twist.

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    Physical pains

    Was just wondering if this happens to anyone else . If I get a headache I think I’m dying or have a brain tumor or an aneurysm, etc. if I get pain in my legs I think it’s a blood clot or something severe. Every pain I get I think I’m dying and it’s so bad I just lose it and call my mom who just says you’re not dying . And my boyfriend says I think If you were really dying you wouldn’t know. Well , these things aren’t helping me. I think I’m dying pretty much every day and it’s scary. My doctor , he just says this is normal with anxiety. This is no life to live. I’m not living if I feel like I’m always dying. I need help .

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    Neurofibromatosis #curenf #AskMe

    So I am terrified at the moment, I have neurofibromatosis, it's impacted my life in many ways over my 45 years of life, I remember the stares and the pain of my ankle surgeries, the tumors I have had removed, finding out that I have a brain tumor, the learning and development issues. My struggle with numbers and math, from telling time, to remembering what I was taught about math.
    But I have been having problems with smelling things that aren't really there, and not being able to smell what is.
    I am having yet another MRI to see if my tumors in my brain are growing. I had cyberknife a few years back to try and shrink them and it helped, I just don't want to go through this again, NF combined with my other health issues I am just ready to be a timelord and regenerate, or a werewolf with healing powers 😆 seriously though, if you have NF too I am sorry for what you are going through.

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    Thought for the day

    “What if you woke up tomorrow with only the things you were grateful for today?”

    #ChronicDepression #MultipleSclerosis #chronic pain #diabetes #internalpressure #fibromyalgia #depression #braintumor #meditation #migraines #inoperabletumorspinalcord #neuropathy #herniateddisks #lost #ready to give up