Today I learned that 7 years ago, a hospital performed a second opinion MRI on the wrong part of my spine because the benign hemangioma they "couldn't find" on my lower lumbar, was actually in my neck, but if they knew how to read MRI's and doctor's notes... maybe they would have seen that. My neurologist says to me today, "benign hemangioma's deep-seated in the bone do not cause pain". According to the American Academy of Orthopaedic Surgeons: Hemangioma's in bones may cause pain and enlargement of the bone. Which is probably contributing to my migraines on top of the AVM in my brain. Also, I have been begging my PCP's and neuro's for a full MRI w/dye on my back because patients with AVM's/hemangiomas are known to have multiples throughout their bodies, looks like I am direct candidate for this, however, my neurologists and neurosurgeons "see no reason for this". I have been complaining for TEN YEARS on unbearable back and neck pain. Now my 6th sense was right about this benign hemangioma diagnosis, questioned it all the way up to July of this year when I had my "fired" neurosurgeon look at the "wrong" x-ray. I knew all along. I have a feeling my 6th sense is right about my back. But my neurosurgeon didn't want to talk about this today, she just wanted to talk about my headaches. not what may be contributing to them other than my current avm and seizures. I told her, forget about it, let's just deal with my %^&*$%^ seizures.
No one wants to touch the neck/back issues until we deal with this AVM bullcrap, even though the neck/back issues could be contributing to the headaches or I could have more avm's or hemangioma's equaling stroke risks in my body, but wth cares? Now no one wants to touch me. In July I had an mri with dye at Presby,a month before the mri I asked my neuro, can we please have this done on my entire spine to check for more avm's/hemangioma's? I practically begged them for it and they refused! I'm like, YOU'LL HAVE THE DYE IN ME, I'M ALREADY IN THE MACHINE!!!!!!!! No, sorry, we're here for your brain avm only...nothing more. No matter how much I complain, yell, kick scream.... sigh. At least I'm getting a 24 hour EEG out of all of this since I wasn't happy with my EEG last week. They didn't record what I asked them to record. I'm so fed up with all of this!
Those with hemangiomas in the bone, preferably in the neck, do yours cause pain? Because mine does, I know it does, it has and no one can tell me otherwise. It tingles like electrical shock. and so does my spine and back. I have swelling my my lower legs if I wear socks with eleastic, and unbearable pain in my back. I know something is there in my back. I know it.