← Return to Cavernoma

Discussion
guzzie (@guzzie)

Cavernoma

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

Comment receiving replies
@kanaazpereira

Welcome to Connect, @guzzie; you’ve come to right place to find people with the same diagnosis to share information and experiences with you. I can only imagine how anxious you must be with a diagnosis of Cavernoma or Cavernous Malformation. I’m so glad that @caira connected with you.
Caira, it must be so frustrating that you are not finding any relief from your medication. Hopefully, the new doctor will have more to offer; please do keep us updated.

@guzzie I would also like you to meet @jeans, @bellisima, and @jc2buds, who will hopefully offer more insight as they have dealt with this condition.

guzzie, when is your next appointment with the doctor? What steps do you need to take next?

Jump to this post


Replies to "Welcome to Connect, @guzzie; you've come to right place to find people with the same diagnosis..."

Hi @kanaazpereira, thank you for welcoming me and introducing @jeans, @bellisima and @jc2buds. I hope all of you are well.

I am waiting on my Neurologists office to set up the appointment with Interventional Radiologist and Vascular Cerebral Surgeon. I will let you all know when I do. As for right now my next MRI is scheduled for 12/12. If all looks good I should be able to return to work full time in January. I have my fingers crossed.

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!