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Hi @gothope
I’m very sorry to hear you’re in this situation. I’m glad you got a 2nd opinion from Mayo and the answers were consistent. I had a brainstem cavernoma that bled out. It created tremendous nausea and vomiting on a daily basis throughout the day. All I could do was lay in bed with a cold washcloth over my forehead and eyes. This went on for four weeks and I was in and out of the hospital three times. Finally I was told my situation was too delicate for the local hospitals to address, I’m in Arizona, so I went to to the BNI at St.Joe’s in Phoenix where Dr. Spetzler specialized in cavernoma’s. He performed the brain surgery, removed the cavernoma and my life has been back to normal ever since....keeping in mind I went through PT at the hospital, I spent 1 week as an inpatient at a specialized treatment center called Health South and several months as an outpatient at the same place.
After the surgery I learned the intense vertigo symptoms I had been experiencing were the result of the brain’s inability to process the blood that was bleeding into it. Apparently the iron in the blood made the brain go haywire.
Did your docsmention the possible causes of your dizziness?
My MRIs showed the cavernoma was bleeding but my original docs wanted to wait for it to heal naturally. After a month of throwing up 10X/day day there was no way I was going to wait to see if it would heal itself. Truth be told the hospital finally admitted they were not equipped with a surgeon talented enough to perform the needed brain surgery because it was so delicate.
Replies to "Hi @gothope I’m very sorry to hear you’re in this situation. I’m glad you got a..."
Hi my Placy Hall 9/30/2018 I was diagnosed same problem as you. Few months later I had a visit with neurosurgeon and he told me to wait for a year to have n other MRI because I still have blood in my brain, and surgery was out of the ? Because a was very dangerous. But I have headache and nausea, my body hurt and I cannot sleep well. Do you think they can help me ? I’m sooo over it feeling bad every day.
Hi I wanted to ask about your PT. I just got my cavernous malformation removed. It was in my brain stem and when it was removed it made my entire right side really weak. I’m recovering but obviously still weak. Curious how long it took you to recover to normal strength?
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I will be 70 (yikes!) in a few weeks. I was told when I was 30 that I had a malformation, but not to worry about it. So I didn't. I woke up one morning in early February/2018 with horrible double vision. I live in Prescott, AZ, and there are ZERO neurologists up here that have any clue about cavernous malformations. I saw a neuro opthamologist. He dismissed me as a patient, saying he didn't know enough about my condition, and I was not to use his name if I went to the ER. Seriously? I finally found a wonderful neurologist up here, Dr Mackenzie, and he said to use his name if I go to the ER. BUT, he told me if it looked like I had had a major bleed, he would put me on a helicopter and send me on my way The Barrow Neurologic Institute in Phoenix. ( I have been to Barrow and saw Dr. Lawton. He told me I have 3 angiomas in the pons (left) area, and surgery is not an option. Too deep.)
Luckily, my symptoms are not too bad. Because of dizziness, I have not driven since February. I hate that part. I am pretty exhausted all of the time. My speech is slurred. I have difficulty swallowing. The double vision has pretty much resolved itself. No seizures. No nausea. I am in speech therapy. Right now we are working on swallowing. I am also in physical therapy working on strength and balance. Baby steps.
Luckily, I am retired and so is my husband. He is my full time chauffeur.
Baby steps.