Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Thursday, June 6, 2013

All clear!!!!

Back in December, around my 2 year anniversary I had what will hopefully be my last MRI for a long time. We were elated to finally receive an all clear from 2 of the known cavernous angioma experts(Dr. Spetzler and Dr. Steinberg). I have had several "scary" reads in the past few years so finally getting the news we wanted to hear was almost unbelievable...but sooo good!! :) YAAY!!! My journey with cavernous angioma is finally over....hopefully forever!!! It makes it all worth it. All the stress, heartache, worry, frustration, and hard rehab work. It's all just part of the price we paid and I know how lucky I am. Not a day goes by that I am not filled with gratitude and appreciation for how lucky I am to be here and be as good as I am. 

Last year my report came in clear at the surgical site, but with a possible new angioma forming in my brainstem. At the time, I chose to just ignore the possibility...it was such an overwhelming miserable possibility. So the relief I felt when they changed their tune this year was unexplainable. Turns out what they are seeing on my brainstem is extensive brain damage, as evidenced by Wallerian Degeneration on the scans which can continue to evolve in the images for a long time. Lucky again! I have a ton of brain damage and really do very well anyway. They have said that individuals that exhibit this type of damage on MRIs typically experience poor recoveries which has not been my experience at all. Yes, I am still dealing with pretty severe fatigue, but when I get the crazy amount of sleep I require, I do pretty well. Thank God!!

The real significance in the all clear is that it allows us to move forward on "the next step" in our lives which will be detailed in my next post whenever I get a chance to write more.  Additionally, with cavernous angioma resections it is critical that the angioma be removed entirely because if even a single cell remains the angioma can and often does grow back and bleed again....Oh please....never again!!! At my 3 month MRI they called my resection a "partial resection" meaning only some was removed. I had hoped they were wrong, and as of the latest scan it looks as if the "entire angioma" was removed! Thank you, Dr. Spetzler and team!!!

As always, thank you to everyone that has offered support, advise, and kindness along our journey. We really appreciate all the love we received!!