While this term/diagnosis might be unfamiliar to many of you...the symptoms or complaints are possibly painfully familiar. Central pain syndrome remains a bit like a "mystery diagnosis", in that there are few doctors identifying this syndrome. There are likely greater numbers of survivors suffering in pain alone because doctors have failed to identify CPS. Even once the culprit of the pain is identified, there are few treatment options today. :( My dear friend, Patti G, is not only afflicted with multiple cavernous angiomas but she also has been afflicted with this monster and she is doing her best to "get the word out"...so that CPS will not longer be such a mystery...and hopefully some day there will be a solution to this terrible pain. Please help spread awareness by sharing the fantastic video that she put together. Watching this really puts my fatigue in perspective. As much as I hate being tired all the time...at least I can escape it while sleeping. Pain is truly the worst deficit imaginable to me.
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 that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appriciate 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 firstname.lastname@example.org 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.