This does not go down as one of those trips you want to do all over again. Right now I just want to curl up with a blanket and sleep for a week.
We saw Dr. Crone. Talking with him is like talking to your grandfather. :) He is honest but kind. He requested a timeline of events of the last few years. It really made me realize how much Will has deteriorated just this year. When you live it, you realize how difficult it is and how far he has progressed, but you don't really realize how fast this occurred. Dr. Crone agrees with Dr. Cohen that this rapid progression may indeed be a result of a compression of the brain stem and that pressure needs to be relieved.
The process of relieving the pressure: We are due to return sometime in February for two full days of testing and visiting with numerous specialists involved in the surgeries, of which there will be two. At the end of that two days, the doctors will meet to discuss whether the surgeries move forward and, if so, exactly what that would look like.
Parts of the first two vertebrae were removed during the first Chiari surgery to make room for his brain.
If the surgeries move forward, which is to be expected at this point, Will would then (in February while we are there), have the first surgery. Since some of the front of his skull now needs to be removed to alleviate the pressure, the vertebrae in the back need to be strengthened so that his head has sufficient support, so they would fuse those first few vertebrae.
After several months of healing, we would return to Cincinnati for surgery number two. This is the ugly one. They would need to go in through the back of the palate to remove part of the skull in front of the brain stem. As Dr. Crone put it, "This is a massive surgery" and would require coordination with multiple specialties. He would have an ng tube (a tube through his nose for liquid nutrition) for about a week, may end up with a temporary tracheostomy, his tongue may have to be split, and/or his mandible (jaw) may have to be divided. Not a little surgery.
Will knows the highlights, but not the details of this process. Dr. Crone sent him off for orthostatic blood pressures while he discussed the details of the procedure. We filled Will in on the highlights, but have chosen to wait on the details until they become a certainty. We should have more information in February when the decision to move forward is made.
Will this cure Will? Probably not. The thought at this point is that it will stop the progression of the autonomic dysfunction, but most often the symptoms created by the pressure do not generally improve. Stopping the rapid progression is certainly at the top of our list, so if the specialists agree that we should move forward, then that is the course of action that will most likely be taken.
We obviously appreciate all the prayers and support that everyone has provided. From taking care of our children on zero notice and willingly keeping them when uncertainty of our return date occurred, to praying for us, to helping to financially manage this trip. We are blessed beyond belief...The Lord IS our comfort and our strongtower. Without Him working through all of you, we would have been in a heap on the floor long ago.