It's been awhile since I posted and kinda just wanted to give everyone an update about my current situation overall I am in good spirits and trying to keep everything as positive as I can right now and that even when you run into issues there is always a positive spin that can be found and that everyone going though this should always try and stay as positive as possible.
My original Surgery for my 3.5cm AN was removed on 1/24/18 via Retrosigmoid at MGH in Boston with Dr. McKenna and Dr. Barker everything went as well as to be expected. My AN was in a very "unique" location where it started growing right at the tip of my ear canal and never extended inside just right into the base of my skull which is why I still had some hearing left even with its large size. Because of this during my operation my actual ear canal was never touched and they were able to remove 90% of my tumor and told me they cut off the blood supply left to the rest. I came out of a 9 hour surgery will with no facial paralyses and everything was looking great. I was in the ICU for 2 days then moved to a regular room started having my first PT and they said my balance was amazing for someone who just had an AN removed so it was all super positive stuff I was released the next day after only a 3 day stay and sent home 1/27 feeling great and was even told by my Neurosurgeon Dr. Barker I was 1/100 chance of having any complications going forward.
This is where my first issues started popping up, After my first Surgery they never placed any kind of Drain in so I had fluid building up under my incision they told me as long as it was contained that it was nothing to worry about. All was well at home until Friday 2/2 around the bottom of my incision started leaking very slowly and as soon as that started going on I called in right away and went into the ER. I was looked at by one of the residents of Dr. Barker she told me it looked like the bottom stitch had just come loose and was just about to stitch me up and send me on my way back home at which time I though ok good no big deal. She then went to go give Dr. Barker an update (he was in the OR at the time) and she came back ready to get me on my way.
It was at this point where she started to take a closer look and noticed a very slight early infection sign on my incision so she started to examine me more closely and said we need to change the plan she then went and reported to Dr. Barker again and then came some really hard news when she came back they were very concerned about an infection and I was scheduled to have a wound reopen and clean-out surgery which was a huge shock to me at the time but now that I look back was the best thing that could have ever happened. During the clean-out surgery they also discovered a "pin-hole" size CSF leak which they also fixed while taking the bacteria cultures at my Dura layer and found bacteria growing this concerned them (as it should) that everything was there that could cause someone to get bacterial meningitis so I am still sitting in the hospital as I write this post. They gave me a PICC line and am on lots of broad spectrum IV antibiotics treating me exactly like I do have meningitis.
Luckily I have never shown any symptoms of actually having meningitis but they are playing everything super safe rather then sorry which is obviously the correct course of action with something like this. Today I am supposed to get the drain removed from my second surgery and they should have all cultures back today so they can take a more targeted approach and get me off the broad spectrum medication. The current plan is probably me getting out of the hospital again tomorrow or Thursday.
I sit here today still as positive as ever just reflecting on my own AN journey and I think to myself how true it really is that with these tumors everyone is truly different and I also will always have a very good memory of the eagle eyed resident who I still don't know the name of but hope to thank personally before I leave for a second time because if it was not for her I could be in a much much worse situation then I am now.
