Perfect Storm

On a perfectly sunny day, I am sure you are wondering why I am speaking of storms in Pennsylvania. Florida is experiencing storms today for sure, from which there will certainly be major clean up required. As you know, Kari has been dealing with some terrible symptoms since February and we have been driven to find answers for her. Today was the next step – to see a neurosurgeon. He was most helpful to us. First, he listened! Second, he gave us hope for solutions, though agreeing this is quite a conundrum.

Three things (at least) have come together to cause her terrible pain. Her 1^st neurologist, trying to control seizures had increased her implant to a heavy setting. This likely caused agitation, even pain. And she was probably already having neck pain from degenerative vertebra (which was only diagnosed today even though X-ray has been out there for all to see). The compounded agitation may have caused further pinched nerve and then all these stress/pain issues caused more seizures. A vicious “hurricane” of conditions.

Now we are in the process of “clean-up” of the mess that this has been left behind. Since we convinced neurologist #2 to turn off the VNS, Kari has had much less pain and no seizures. She still is having some pain, but between analgesics, neck brace, and positioning changes, we can get Kari to sleep at night without us calming her neck by holding down her head. Today, the neurosurgeon said the last resort is to take out VNS (major surgery). He would like to have us try physical therapy on the neck to heal damaged muscle and nerve, and possibly steroid injections as well. If Kari still does not get more relief, we will go back to him to “talk next steps” (such as more detailed imaging).  Please pray that physical therapy will be very helpful as we work at restoring our daughter to better health.

And pray for those in the south who also will be facing major clean-up!

Joan