I'm sitting her listening to Vanessa whimper in her sleep. Occasionally her body will jerk as well. Neither of us slept very well last night. I kept having nightmares and waking up. Would pray until I fell back asleep.
Vanessa says she's having 'shocks and tingles' down her arm. That's not supposed to happen. Will call the doctor when Vanessa wakes the next time.
This is one of those days that I wonder if God over-estimated my strength.
Patty, my name is Carmen A. Richardson and Ryann Ennis is my Speech therapist. First of all you, Vanessa and your entire family are in my thoughts and prayers...I was diagnosed with Arnold Chiari Malformation, August 2008, had decompression surgery on August 20, 2008. An angel stepped into my life and saw my MRI and did emergency brain surgery to correct a problem that could have taken my life...i was grateful (she was a traveling neuro-surgeon) and six weeks later she was gone and never heard of her again. This surgery took place at the FWB medical center. that was the closest there was anyone in the area that new about our rare disease (no cure) Chiair Malformation. I gave Ryann permission to give my information or tell my story to you...well since the first surgery 14 weeks later the symptoms came back...with lots of Dr. appointments and support groups later i turned my case to the chiair institute...had two small procedures...then on September 18, 2010 Dr. Bolognese performed an extended and high risk surgery on me...i flew home week and half later...was doing well for 6 weeks post-op then i developed a new symptom that needs immediate attention and will return to NY on the 25th of this month. The power of a chiarian is under rated...we are battlers beyond...and survivors for a lifetime...the pain is slight/none for some and very difficult for other...me/Vanessa and others. Continue to rely on GOD and prayers...be there for her...don't try to understand the pain (to difficult)...just be there and if someone else wants to step in and be there let them...give yourself a break..and when Vanessa is feeling good even for a moment be there and enjoy it with her...Vanessa is going to have to do her part by focusing away from the pain and fill it in with recreational ideas, color...etc...until you next blog...love to you both..."Let's conquer Chiari together...Hop, sKip, juMp, plaY
ReplyDeleteCarmen - what procedures did you have done after the initial decompression?
ReplyDelete