September 27, 2013

Just thought I should update on Olivia’s latest status.  She has been back on homebound for school since about mid-September.  Pretty much, right after I made the blog, she realized that her pain was just too intense, she couldn’t take it.  The pain in her eye and temple area is the worst, as that area has yet to be addressed.  Her next surgery will be excision of the temple area, and we are hoping that this gives her enough relief to get back in school.  She is back in the basement again, as her eye and temple pain is feeling worse, and she is having some pain in the area of the top and back of her head, where she had decompression only of GON.  It’s not nearly as bad as it was, but it’s not still a level ZERO like it was for 3 full months after the surgery.

The anesthesiologist that we see, said that because she had complete relief for 3 months, even if it comes back, is confirmation of her diagnosis of Occipital Neuralgia.

Your question will be whether or not you feel the surgery was a success?  Yes, it was.  That’s why we’re going back.  The Dr tried to spare her nerve by doing only decompression of the Greater Occipital nerve in the back, and excision of the Lesser Occipital nerve on the sides of her head.  She is still pain free in area of excision, but is experiencing some pain where she had only decompression.  For those that suffer with NDPH, constant 24/7 pain, they know that even a reduction in pain from a level 10 to a level 4 is considered a success.  This is about where her pain level is in the GON site, but it’s still a 9 or 10 at temporal / eye area, so that is what we are focusing on next.  This is a process, it’s not a simple procedure that should be expected to be a cure all, it takes time.  We have the utmost faith in our surgeon, Dr. Ducic, and cannot wait to get back to see him.  He is the only Dr. that gave her relief, and he will do it again, we are sure.  We are still confident that by the time we are done, she will be either pain free in all areas, or very close to it.  These conditions of CM / NDPH / and ON are so painful, that even a 30% reduction in pain is considered successful.  And if you are a sufferer, most would do anything for that amount of relief, wheres to be pain free is considered a miracle.  We are still hoping for pain level ZERO of course, but will settle for a significant reduction that allows her to get on with her life.  We are on our way, but it is a long journey.  Please don’t give up hope, if you are looking to this site for hope, I hope that’s still what you are getting.  We wouldn’t be going back if we didn’t believe in it.  It takes time.  I will update after her temple excision, and let you know how that goes.  We are excited for it.   Really hoping that she can get back to school if she gets enough pain relief, she misses school, and her friends.

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September 2013

We have Olivia’s second surgery scheduled for mid October!  She is excited to get further down the road to being pain free.   As of right now, she is back in school, hanging out with her friends, enjoying time outside and being a normal teenage girl.

Her first surgery was of the occipital area, the back of the head only.  This made her pain free in the back, sides and top of her head.  She still has pain in her eyes, and temples, because these are different sets of nerves, requiring a different surgery.  She will be getting the temple area addressed next, and she is anxious for that.

I never cease to be amazed at her strength.  Even though she is in pain, many people could never tell as she has decided to soldier on and live her life, in the midst of chronic pain.  How nice it will be to say she is completely pain free.    Looking forward to October!