Surgery next week. Yeah, Amanda freaked out. They offered Friday as a surgery date but I thought two days away was too soon.
Our trip to Children’s Hospital was interesting. Amanda had not been there as a patient since 2004. Thankfully, the neurosurgeons continue to see the adult spina bifida patients. After several head and chest x-rays and a head CT scan, we heard from the doctor. First and foremost, he was interested in whether her shunt was working correctly. Allow me to refresh: Amanda’s shunt is a tube that goes from inside the ventricles of her brain, comes to the surface of her skull (under the skin) then snakes under the skin down her neck and to her chest just below the collarbone. It then gets threaded into a blood vessel that takes it to the superior vena cava and to the right atrium of her heart. It’s purpose it to drain off the excess fluid surrounding her brain and the ‘sucking’ motion of the beating heart pulls the extra fluid down where it is absorbed into her bloodstream. On the x-ray images the top end of the shunt in her head appeared fine. The lower end, however, was not where it should be. It was ‘short’ and not in the atrium. If a shunt is not draining as it should or placed where it should be – it can disrupt all kinds of neurological function – and the fact that it is near but not in place in the heart could be why her heart rate has been funky and fast. So in surgery next week they will simply access the shunt tubing by making a small incision below her collarbone. They can disconnect her tubing there and test both the upper end to see if it is good and they can thread in a new, longer, lower end to make the placement better. We could conceivably have this all done out-patient and go in to the hospital in the morning and home in the afternoon. (I hope I hope I hope) Worst case scenario is they find the top end plugged and have to replace that end – meaning a bit of a head shave and an overnight at the hospital. Then we wait to see how Amanda does – wait to see if it makes a positive difference in how she feels, acts, etc. If she still is having unresolved issues then we take a look at a possible Chiari issue – but we can’t look at that until we start with proper shunt function.
So I am happy with the decision. I feel like the surgeon is working conservatively and trying not to open a whole can of worms. Start with the basic shunt function and make sure it is working perfectly – only disrupt what you have to. If that doesn’t solve things, we’ll take the next step and look some more.
Sorry to bog you all down with such a long medical explanation – some of you probably like it and now that you’ve read it I don’t have to repeat it a hundred times! Amanda is a complicated little bundle of health history, surgeries, and medical complexities!
Thanks for reading. Sorry, again, for the medical journal. I shall try to be more inspiring and witty tomorrow!
btw – surgery is Tuesday