I have gone back and forth over and over again about whether I should include this latest chapter of my journey on the blog, and I know I left off saying I would update and never did, but now that the chapter is closing, I’m ready to include it. After all, I did vow to be brutally honest, and among everything else, this blog IS more than a BRCA/boob blog, it’s a blog about me. Random happenings (shit magnet occurrences one might say) and all.
So that said, here’s the recap over the past 6 months – I left much of the beginning out of my late 2013 blog posts since we didn’t really know what was going on, and if it was transient. But now we do, so here I go. My only preface: this is an extraordinarily rare thing to happen. I don’t even really like the word complication, because it’s so unlikely to occur – it really was just a perfect storm situation. And one that my doctors, at a major academic medical center, had never seen before, and hopefully won’t see again. SO please, if you’re a “BRCA babe,” or someone who is considering or having surgery, please don’t let this freak you out – I can’t reiterate how random it was, and you’ll understand quickly why. Unless you have a VP shunt AND are undergoing a mastectomy and reconstruction… THEN shoot me an email! I’ve yet to find the blog that outlines that predicament!
So yes, if you’ve read any of the archives, you know I have that VP shunt for pseudotumor cerebri, that I’ve had since 2006 without any issues. And you know it’s been a problem from the very beginning of the mastectomy journey from MRIs to my actual mastectomy. Well, that little piece of massively important plastic truly outdid itself this time.
In November I had my much-anticipated exchange surgery, got my wonderful new implants, and all went well. However, as I alluded to in this post, I had some trouble post-op. The Wednesday following my Friday surgery, I noticed that my vision was off and I was starting to get a headache. I had had similar symptoms with anesthesia before so I hadn’t thought much of it, except at this point I had been off all pain medicine for 3 days. As the day progressed, my vision got worse, and knowing “shunt protocol,” we unfortunately had to go to the ER. Shunt failure is a very real problem, and one of my biggest fears – you never know when it’s going to happen. I knew, however, that my shunt wasn’t totally defective – but something wasn’t right. I compare it to trying to drink out of a bent non-bendy straw… you get some liquid, but not all of it. In the ER I had x-rays and a CT scan, and it was decided that I would be admitted overnight for observation and for an LP (spinal tap) the following morning. And yes, this was the night before Thanksgiving.
My Thanksgiving miracle the next morning, despite being in the hospital, was that MY neurosurgeon was on. The same one who put in my shunt in 2006, who fixed my shunt during my mastectomy when it went right through my breast tissue, and who I still see every year for follow up. He decided instead of the LP to do a chest CT, so we could see where the shunt was going. It was harder to see than anticipated, since my silicone implants are SO opaque, but it appeared that my shunt was being compressed by the swelling of the surgery, which made perfectly logical sense. So he came up with a plan to start me on my old pre-shunt standby medication (Diamox) to decrease the amount of fluid my brain would make while the surgery swelling went down, and I would follow up after and we’d go from there. And thanks to a miraculous medical team, we made it out of the hospital JUST in time to make it to Thanksgiving dinner with Ruthie!
Fast forward a week where I felt absolutely, positively miserable. Really, it’s all a giant blur now. I ended up having the LP outpatient the following week, actually before I followed up with my plastic surgeon that afternoon. Come to find out, I was experiencing LOW ICP symptoms (from the fairly hefty dose of Diamox) – further proving my “bent straw” theory. I saw my neuro-ophthalmologist the following week where all this was further confirmed by him. We decided to back off on the medication and see if the swelling would go down on it’s own, and that I would only take the medication if I have was having symptoms.
It seemed like things were evening out over the holidays, but when I saw my neuro-ophthamologist in January he could see, via my optic nerves, that my intracranial pressure was starting to creep up, and we restarted the Diamox at a low dose. And this is where things start to get a little confusing.
In February I also saw my plastic surgeon for a non-scheduled appointment; graceful me had fallen on some ice and landed on my left arm. My left implant was historically already a little iffy (remember this was also where I had problems with the left expander sliding around) and this made it worse. At that appointment we decided just to watch that, but I also brought up another concern. A few weeks before that, I had noticed a weird new crease in my right implant. I kind of dismissed it, but the more I thought about it, the more I knew exactly what is was. Sure enough, it was my shunt. It had migrated and kinked, forming a perfect “S” shape. And it all started to make sense.
I saw my neuro-opthalmologist the following day, who confirmed that my pressure was still elevated – he doubled the Diamox and we agreed I’d go back to my neurosurgeon to investigate the shunt issue. I saw him a few weeks later (Sidenote: At the same time in March, I also saw my gyn-onc for regular ovarian cancer screening (ultrasound, CA-125, exam) and everything looked great! She’s awesome, end of story.) My neurosurgeon confirmed what we already knew – my shunt wasn’t draining right because it was wrapped around my right implant. Only way to fix it would be to go in and remove the shunt and place a new one – we developed a plan that day that would keep the shunt entirely out of the boob area, and then began the orchestration of getting surgery scheduled.
I say orchestration, because I then saw my plastic surgeon for my regularly scheduled follow up, and we decided at that time we would complete a left implant revision at the same time as the shunt replacement, as Dr. T would already need to be there for potential shunt/boob problems. We also decided to do some additional fat grafting. So orchestration indeed – how often to neurosurgeons and plastic surgeons work together on the same case? Oh, and throw in a general surgeon to – needed to laparoscopically tunnel my new shunt into my abdomen. Thanks to some amazing schedulers, a few weeks later we had a date: May 6. I chose it because it wouldn’t be terrible to miss work then, and I at that point I really wasn’t feeling THAT BAD. It was bothersome, but it was manageable.
So I continued to follow up with my neuro-ophthalmologist really closely, but it was mid-April when the headaches really started picking up in intensity and my vision was noticeably worse. At this point looking back, how I managed to function the last 2 weeks of April and first of May is really rather impressive as it is one giant blur right now. The Diamox makes me lightheaded, constantly dehydrated, and feel not-great, to say the very least. Perhaps, she says innocently, a bit whiny too (“caring” coworkers at work may or may have not developed the ICP:whine graph! I laugh. Because admittedly it was totally true!) And the symptoms increase as the dosage goes up, which it did every time I saw my neuro-ophthalmologist, which was weekly leading up to the surgery. Basically I should have bought stock in Vitamin Water!
Okay… I think that’s all the background I missed! So, still with me?
So surgery. On Monday the 5th I had pre-op which took awhile but went well. I notoriously don’t have great veins to start with, but the Diamox being a diuretic made them even worse. It was decided then that I would need a midline catheter placed for the surgery the following day. After we met with the neurosurgery NP (she’s awesome, and totally remembered me from ’06 which is impressive in my book!) Mom and I went to get some Tex-Mex for Cinco de Mayo and then went to see Decoding Annie Parker with Bright Pink. It was an excellent distraction for the night before surgery and WOW what a movie – definitely hard to watch, but so good. Mom looked at me on the way out and said “I’m so glad you had that surgery!” and I couldn’t agree more. We got caught in some epic traffic on the way home, so it wasn’t long before my alarm was going off at 4:30 the following morning.
I was (obviously) the first case and everything went so incredibly smooth it was like an art – everyone kind of stood there in awe that we managed to get 3 surgery teams in the same place at the same time without a single missed beat! I had the midline placed, and then the parade of doctors began, as well as the many markings by each team. Honestly this is all a blur too (and before the Versed thankyouverymuch!) because honestly? I felt like complete crap. I would never admit it then but man, that was freaking rough. So there’s no pictures, no Facebook posts, none of the things that went along with my yay-I’m-choosing-to-save-my-life-in-advance preventive surgeries. It was just different going into surgery feeling rotten. My roommate and Ruthie were of course there with Mom, and thank goodness. We were off to the OR about 7:30 or so, and I didn’t see them again in my room until after 2.
In the end, it took 5 hours of OR time, 3 surgery teams, and 9 incisions, but they pulled it off without a hitch. A small portion of my head was shaved, but they were able to do everything through a previous chest incision AND get the old shunt out in one piece – a feat we weren’t sure would be possible! The new one is completely on my right side FAR away from my implant. Dr. T fixed my left implant so it doesn’t slide AT ALL, and did a beautiful job with the fat grafting – I’m so pleased already. I did have to stay overnight, but it really wasn’t too bad and the nurses were great. I definitely felt like I was hit by a bus by the time it was all over!! Though I must say – even the next morning I told my neurosurgeon I didn’t know just how badly my shunt was functioning until it was fixed – it was amazing how much better I felt already!!
We headed home the next morning and I took it easy at my parents for about a week. From the top of my chest to almost my knees (because of the fat grafting harvest) I was sore, let alone the lovely (not!) leftover laparoscopic air pain, but I was on the move pretty soon. And really, feeling better overall made it all seem minor in comparison.
Unfortunately you can’t go off Diamox cold turkey, but we’ve made serious progress weaning it down since my surgery, and I hope to be off of it by the end of the month – now that my shunt is working flawlessly I’m having low pressure symptoms again (mild headaches when I’m standing and slightly blurry vision). On Monday (the 19th) I had 2 post-op appointments. First was plastics – and of course a big hug from Dr. T! Everything looks great, I had stitches removed, and we discussed a few other things that will be addressed when I see him in 2 months – mainly some touch-up nipple tattooing (they can do this in the office) that we’ve talked about for awhile now. Oh and of course my plastic surgery life plan (ha!) for flap surgery post kids – but that’s way far off of course. And then I saw my neurosurgeon – I’ve had the same fellow this whole time, from Thanksgiving to surgery to now, which doesn’t always happen. He’s so untypically neurosurgeon and just wonderful – I could tell by the waiting room he had a rough day in clinic before and after me, so as he was leaving I stopped him and said “this is a WIN! You don’t always get those around here!” and all he could say was “you’re so right” with a big smile. I love making people’s day!! Needless to say, everything looked fantastic and my neurosurgeon legitimately told me to “get out of here!”
We’ve moved my yearly CT/follow up to September now instead of July since that’s right around the corner.
After the last few months of frustrating symptoms culminating in a fairly intricate surgery, it was such a relief to have happy, good news filled follow ups! I saw my neuro-ophthalmologist yesterday, and I am in fact set for the final stage of Diamox weaning which is such a HUGE relief. Hopefully this time next month I will be OFF of it and back to my usual!!
Major kudos if you made it this far… I know it’s long and complicated! But now it’s documented, and more importantly, it’s DONE. I feel like I can finally heal from the whole mastectomy journey the way I wanted to in the first place, and am looking forward to the rest of this year so very much! Thanks for stopping by, as always!