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Sep 22, 2018 · Cavernoma in Stroke & Cerebrovascular Diseases

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.

Aug 6, 2018 · Cavernoma in Stroke & Cerebrovascular Diseases

Hi @guzzie. Sadly I just realized this post was from 2016!!! Ugh! It came on my feed today.
If you’re still connected to this site but did you decide to do?

For others who may be going through this now…In regards to the comments about many neurologists not being able to treat Cav Mals that have bled out, BNI (Phoenix, AZ) and Dr. Robert Spetzler’s team have operated on thousands and my surgery was in Dec 2006.

My CM was at the back of my head at the top of my brain stem which they said was an extremely high risk/profile area “like Park Place in the Monopoly game!” Of course they told me that after my surgery was a success!
Spent a week in in-patient rehab at Health South in Scottsdale and around 3 months in out patient rehab there as well. Everyone who dealt with me and my CM was AWESOME!

Aug 6, 2018 · Cavernoma in Stroke & Cerebrovascular Diseases

Yes! I had one in 2006, I was 43 years old. I’d spent a month in bed due to severe nausea and vomiting all day long. I was admitted to Scottsdale healthcare on two different occasions and left each time still vomiting. They did multiple MRIs and Tests only to eventually tell me they could not do anything for me I would have to wait it out. They finally admitted I needed surgery but the location of the brain bleed was in such a high profile area they had nobody qualified to perform the surgery.

After much research by multiple people and family members I ended up at the Barrows Neurological Institute and Dr. Spetzler performed the surgery. After scouring the country for a qualified doctor we discovered Spetzler was considered the best in the world at this particular surgery and at that time. People came from around the world to see him, he even developed his own specialized instruments. Anyway, he saved my life and I’m perfectly fine and happy. Spetzler retired recently but his team is highly trained to smoothly continue his work. If you needed surgery I don’t know who would do it at Mayo?
I hope this helps!

Feb 21, 2018 · My experience with proton beam therapy & breast cancer in Breast Cancer

Hi
I did brachytherapy which is somewhat similar to protonbeam therapy and it was great, very targeted with minimal side effects.  My insurance covered it and my doc said at this point both brachytherapy and proton are pretty comparable until they have 10 years of data to compare.

Aug 14, 2017 · Can anyone speak to the pros/cons of arimidex vs. tomoxifen? in Breast Cancer

Good question as I’ve read conflicting info too. I was on tamoxifen until they discovered I wasn’t able to process it due to a genetic mutation. So I was switched to Arimidex and personally I prefer the tamoxifen! I had no side effects with it other than some slight changes in my hair. The Arimidex causes a lot of joint pain and stiffness in my hips and lower back, knees and left thumb. I know it’s the Arimidex because I stopped taking it for a week over summer vacation and felt immensely better within 24 hours .

Jul 24, 2017 · communication in Breast Cancer

Have her set up her patient portal with the mayo app and give you the info – the app shows appmts, billing, lab & radiology results… it also has a place where you can communicate with her medical team and ask any questions you have. They will respond back through the portal. I really like it.