Anyone used Dr. Riina at NYU.

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Anyone used Dr. Riina at NYU.

Postby Mizpat72 » Thu May 31, 2018 10:18 am

Wondering if anyone has used Dr. Riina at NYU? My husband has a CM in pineal region. We were originally told it was inoperable,but he has had two bleeds so far so needs some type of intervention. We met Dr Riina yesterday and he believes it’s operable. So any feedback would be welcomed. Thank you!
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Re: Anyone used Dr. Riina at NYU.

Postby Elizabeth » Tue Jun 05, 2018 12:07 am

Hi,
I'm not familiar with that doctor or really any east coast doctors, but I am very familiar with the "inoperable" nature of some cms. Mine was deep too and co side red "inoperable" by most all neurosurgeons. There were a few experts that said they could do my surgery with a "good" outcome but based on the several inoperable reports I got previously... I knew if I decided on surgery it would only be with the best of the best and it would still be risky. These deep locations are extra risky because the surgical pathway creates damage as well as possible obstacles like mine...where there were several blood vessels in the way...they had to cut one to reach my cm and it gave me a stroke essentially. I would be very cautious of any MD that says they " can" do his surgery...what does a "good" outcome look like to them? How many of this type of surgeries has he or she done? Outcomes? I would probably consider getting to Chicago to have Dr. Awad check him out...get his opinion. You can also check this list of centers for excellence... They are cm experts.

http://www.angiomaalliance.org/pages.aspx?content=482

I'm sorry you guys are faced with this...I know how hard it is.
Best wishes!
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. http://www.thankfulforeveryday.blogspot.com
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Re: Anyone used Dr. Riina at NYU.

Postby Michelle2000 » Tue Jun 05, 2018 12:24 pm

I agree with Elizabeth. Ask lots of questions about the surgical path and what a good outcome will look like. Find someone who has done this surgery before. A NS's idea of success and yours may not be the same.

Michelle
17 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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