Belugabear

486d

How were you diagnosed with a hemangioma? I had an MRI and they thought they saw an atypical hemangioma but aren’t sure and I’m waiting to hear what tests my doctor will do next.

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Top reply
    • EeW

      268d

      I was Diagnosed at Birth it was visible at eye but yes I had lots of scans. This has lead to complications later on in life.

    • wise

      486d

      I had an MRI done to try and figure out why I suddenly couldn't walk. I've had my entire spine imaged, and in my T spine there was a BIG white spot. I knew just enough to know that was a tumor, but it was another month of research on my part before I came to the conclusion it was not cancer, just a hemangioma. my neurologist caved and reviewed the image and formally gave me the dx

      • Belugabear

        486d

        @wise thank you for sharing! It’s pretty scary not knowing yet what’s going on

        • wise

          486d

          @Belugabear my heart sank and I could physically feel the adrenaline when I looked through the slides with my partner and saw it. it wasn't subtle either, even my dad could tell something was amiss and he's just a genuinely stupid man 😅 had a fun bonding experience with my mom though as we spent hours pouring over article after article and image after image. it's weird having to trust myself and my self-diagnosis even though the information I was getting was saying I shouldn't be developing hemangiomas for another 20 or 30 years

    • EeW

      268d

      I was Diagnosed at Birth it was visible at eye but yes I had lots of scans. This has lead to complications later on in life.

☝ 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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