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Cavernoma

Stroke & Cerebrovascular Diseases | Last Active: Feb 12, 2019 | Replies (46)

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@gothope

Hi,
I had an MRI last october with lesions on my brain, and was diagnosed with "MS", and have had many MRI since then , and recently my headaches have been getting more persistent and also, now i seem to be getting "dizzy " spells, and more nausea. which is a new onset for me. at the time i had the MRI last oct , they had seen a "spot" on my spinal column, which was concerning, but was assuming it was MS , related. and now i had another MRI, with the new onset of symptoms. at this time few weeks ago, they have now diagnosed the spot on my C2, of my spinal column, a cavernoma, not anything MS related, at this time they took me off all my MS medications and i am not to take anything, to wait till the next MRI to see if there is anything changes. to make sure the lesions in my brain are "MS', or tumors, of the cavernoma relation. i am just concerned. if i should be worried?? having these blood vessel type tumors?? he wants to do a biopsy of the one on my C2 spinal column but states it is to risky at this point till we for sure do the next MRI to see what or if there are any changes at that time. has any one else heard of this or anything else related to this. in october i had a second opinion , at the MAYO. and they were pretty consistent with the hospital i am currently going to the doctor with. i just am concerned with my light dizzy spells, etc.
thanks for listening... any information will be greatly helpful 🙂 thx

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Replies to "Hi, I had an MRI last october with lesions on my brain, and was diagnosed with..."

Hi, @gothope. Welcome to Mayo Clinic Connect. Sorry to hear about the dizzy spells and nausea you are experiencing.

You may be interested in this Mayo Clinic information about cavernomas: https://www.mayoclinic.org/diseases-conditions/hot-flashes/symptoms-causes/syc-20352790

Hoping some of the members who've mentioned cavernomas will return and share some of their experiences, especially about having to wait to see if anything changes in the next MRI and potentially having a biopsy. I'd like you to meet @needanswers1974 @kat9606 @maria7521 @brenda68 and @jeans.

Since you also mentioned multiple sclerosis, I'd also suggest you check out this Connect discussion on that topic: https://connect.mayoclinic.org/discussion/ms-1/?pg=1#comment-126254

What does your doctor say, @gothope, about the dizzy spells you've been experiencing? Did they have any suggestions for managing this while awaiting the next MRI?

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.