Robby went for his annual check-up at the surgeon in NC this week. He had a tilt-table test, a few x-rays and an MRI. The good news is all the tests showed that his body is healing. There is no indication of need for further surgery. The surgeon says he looks good for one year post surgery.
The bad news is Robby is still in a great deal of pain. He was doing well for about 9 months or so. His energy level increased, his strength improved, the nagging, stabbing pain in his neck finally went away. Then a couple of months ago he started feeling bad again. His energy level and strength dropped off. The neck pain was replaced with a general all over body pain. He’s been having numbing and tingling sensations in his hands and feet. This the doctor attributes to the ups and downs experienced with this kind of surgery. He said Robby should just push through and things should get better. He is apparently a “no pain, no gain” kind of guy.
The ugly part was the slap in the face as we both realized that this surgeon is no better than any other we’ve met. He’s good at surgery. And fortunately for us he understands how to surgically treat a Chiari malformation. However, we were deeply distressed to realize his expertise at Chiari apparently stops after surgery. Or at least his willingness to help his patients stops after recovery from the surgery itself.
He reminded us that recovery from this type of surgery can take five or more years with many ups and downs along the way. He reluctantly prescribed a neurological medication cautioning that these meds do very little to help patients. Funny, the people I know personally with neurological conditions say these types of meds help them.
He made it clear that he would not see Robby for another year. If Robby felt he needed to be seen, he needed see his family doctor or find a Neurologist. Robby has seen a pain specialist, but he hasn’t been very helpful either.
Please pray that Robby will be free from pain, his energy level and strength to increase, and we will find a Neurologist who if he doesn’t know much about Chiari will be willing to learn. If what the surgeon says is true about the ups and downs of recovery, I will need a good Neurologist too.