Newly Diagnosed in San Diego (military spouse)

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Newly Diagnosed in San Diego (military spouse)

Postby Luera78 » Mon Mar 19, 2018 12:22 am

I was recently diagnosed with a Cavernous Malformation when seen at NMCSD. I did opt to have a 2nd opinion at the Mayo Clinic in Arizona. Since my diagnosis, I have researched non-stop about these malformations and I am so very nervous about having brain surgery at 40 years of age. The reports read as a 3cmx3cmx3cm lesion in my right temporal lobe. I choose to go with the Mayo Clinic for my surgery as they have more experience. I am still very nervous since the surgery will take place the first part of April. Has anyone had theirs removed at the Mayo, and if so, what doctor did you see and what was your experience like?
Last edited by Luera78 on Wed Mar 21, 2018 3:54 am, edited 1 time in total.
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Joined: Sun Mar 18, 2018 11:45 pm

Re: Newly Diagnosed in San Diego (military spouse)

Postby Elizabeth » Tue Mar 20, 2018 6:19 am


I'm sorry you were recently diagnosed. I know how scared I was at first. Read the main site and you will find the most current accurate information on cavernous angiomas. Mayo in AZ? I'm not familiar with that facility, but one of the most popular places is Barrows in AZ. Dr. Spetzler was a top surgeon in charge there for a long time. He just retired and Dr. Lawton from UCSF replaced Spetzler. If I was needing an expert opinion today, I would be trying to get into Lawton personally. I'm not sure if he's continued what Spetzler used to do and that's a second opinion program where you can mail in your scans and he reads them and gives you an opinion for $100. You can call and see if they still do that. You can ask all your was very helpful to me. And yes, brain surgery is a big deal so choosing your surgeon wisely is the best idea. I would absolutely not let that military MD anywhere near my brain. I want an expert that does this everyday and one that is a complete expert.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery.
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Re: Newly Diagnosed in San Diego (military spouse)

Postby Michelle2000 » Wed Mar 28, 2018 2:53 am



My son had his surgery at Mayo in Rochester, and I can't say enough good things about his care there. I don't know much about the Arizona Mayo, but I am sure they would have the same focus on the patient as a whole. We really liked how the specialists all talked to each other and took care of all the problems the cavernoma was creating. It made for a lot of doctors/residents, but the care was excellent. In the 8 years we have been going there we have only met one grumpy person, and she was no longer there the next time.

Best wishes on your surgery,

18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Joined: Thu Dec 02, 2010 7:40 pm

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