More Monitoring – Gabby Update

Yesterday we went and saw Gabby’s NeuroSurgeon again.  We set yesterday’s appointment at the last meeting after getting test results.  I feel like we are stuck on this ugly endless cycle of testing, monitoring, more testing, more monitoring, etc.  I just want answers and the sad thing is apparently there are no simple answers to give.  The doctors seem to be almost as clueless as I am.  Which I keep taking a step back and trying to remind myself they aren’t perfect either and they can only teach us what they have been taught or have learned along the way.  I truly believe Gabby has one of the best NeuroSurgeons around and I do have faith in his work.  That doesn’t make any of this any easier.

Over a week ago Gabby’s knot developed a blister on it.  The blister lasted several days and then finally went down and the knot just remained a red’ish-purple’ish color.  She has had this same knot on the side of her head since last October and it’s always stayed the exact same color as her skin.  Never hurt.  Never looked bruised.  Nothing.  Just a big knot.  That is until last week.  It almost appears as if something is on the inside trying to get out, whether that’s just an infection or excess fluid.  It doesn’t look like a bruise from the outside.  I was alarmed right away but I waited to tell the surgeon at her appointment, she still wasn’t in pain so I didn’t feel there was a need to call him a few days early.

These photos were taken yesterday.  You can see that the knot is still fairly large and is really red.  It’s not perfectly round so it goes back a ways past the hairline.  Her NeuroSurgeon was concerned, especially that it has changed colors.  We discussed several options and decided to… monitor it.  He brought us into his office and we looked over all her previous MRI’s, CT scans and examined the knot how it is now.  He agreed with me that she looks great besides the knot and seems to be doing well mentally and physically.  He is now starting to lean towards believing the knot is not caused from increased pressure.  Yes, Gabby’s spinal tap did show increased pressure but he isn’t so sure that the pressure could actually cause a knot of this size for this long.

Her NeuroSurgeon actually gave me his work email address and wants me to send him daily photos of the knot.  He plans to track the changes for the next two weeks and then we’ll talk again.  I was hoping for an answer or a quick easy fix, unfortunately it appears there isn’t one.  I do feel confident that the surgeon isn’t just trying to rush into surgery yet he is also paying attention to her knot, which gives me some ease.  He explained the risks of the next possible steps and it’s all just nerve-racking.  The direction we are headed now is he goes in and does surgery to ‘see’ what’s inside the knot and to reduce the size of it.  However it could cause a leak at that point which would result in having shunt placement surgery.

At one point he even looked up her skull scans to see if he maybe accidentally left a foreign object inside after her brain surgery.  I kid you not.  I was like ‘you are looking for what?!’.  He said ‘you know like a screw or staples, I’m usually really good about that but 15 years ago it did happen’.  How comforting.  Again, I remind myself no one is perfect but the fear of an object being inside for three years that is now trying to push it’s way out is a little disturbing.  Thankfully he didn’t see anything.

We remain clueless and monitor…  All while praying for the best and hoping we don’t have to have another brain surgery any time soon.