Not all leaks are enlightening....

SOOOOOO much has happened in last few weeks I barely know where to start! I guess the logical place is to start from the beginning.

As you may recall from my last post, I had my fourth neurosurgery on the 16th of September. This time I had a complete hypophysectomy (they removed ALL of my pituitary gland). It was tough! I had a real hard time coming out of the anesthesia, feeling very rough and even throwing up several times. But thanks to a strong cocktail of painkillers and anti nausea meds, I was feeling "normal" within a few days. On the 20th of September, exactly 3 years since my first neurosurgery, my specialist nurse told me that my cortisol results had finally come back low enough to consider me cured. I was over the moon!!

By Saturday I was home and I thought this was the beginning of my road to recovery. Boy was I wrong...

Already from Friday/Saturday I had started having some clear fluid dripping from my nose. Though it is common to have a CSF leak following transsphenoidal surgery, I had been fortunate until now to avoid it. My nurse said that since the dripping was very small and sporadic, it was probably nothing. We had a follow up appointment the wednesday after my release and collected some of the fluid to send it off for tests, just to be sure.

But during that wednesday appointment I also received some slightly concerning news. My cortisol had gone back up to 223! This is not normal if I had been well and truly cured. I was gutted!! How was this possible!? Hadn't we done enough? My nurse told me not to worry and that we would check it again later, this time with me omitting the two doses of the day before because perhaps my body is just really good at holding on to cortisol. (Wouldn't be the first time my body did something to piss me off!).

However, by Thursday night/Friday morning, things started turning for the worse. I woke up feeling absolutely HORRID. Worse than I had felt in ages, I was coughing, my nose was dripping a lot more by then and I even vomited several times that morning. I contacted my nurse who was very concerned because I also developed a slight fever. She told me to come into the hospital so they could run some tests and make sure it was nothing too serious.

The blood tests revealed that my infection markers were up and my nurse and neurosurgeon were very concerned by the rate at which my nose was now dripping, signalling a possible CSF leak. At 6.30pm, I was fitted with a cannula in preparation for a CT scan and on my way there my neurosurgeon informed me that I would have to undergo another surgery so they could fix the leak. It had to be done ASAP, not only because it was Friday evening and that it couldn't be done over the weekend (since only on-call/emergency staff work weekends) but also because if my infection was in my brain, it could be deadly.

Needless to say, it was a very scary time when I was discussing the procedure again with the doctors in order to give them my consent. This time I had to sign for a transsphenoidal surgery with the aim of repairing a CSF leak, this also involved a fat graft (taking a small amount of fat from my abdomen to use as a plug for the hole causing the CSF leak), and agreeing to have them place a lumbar drain in order to relieve the pressure in my head.

Once again, I woke up feeling absolutely wretched! This time, on top of pain in my head and nose, I was also suffering in my back because of the lumbar drain. As if this wasn't bad enough, by saturday it became obvious that the drain was also leaking from the puncture in my spine. This is of course very dangerous because if fluid is able to come out, so too is infection able to come in. So in order to avoid something like meningitis, the doctor had to place two stitches around the drain site, WITHOUT the use of anesthetic!!! It was 1am, I was already exhausted and in pain and then this happened. It's as if everything that could go wrong did. My mood hit rock bottom....

Luckily things started improving from then on. My infection markers started dropping, the fluid being drained from my spine and head was clear (meaning no infection) and I was starting to feel a little better. Only a little because at the end of the day, I am/was still recovering from having my pituitary gland removed so it's normal I was feeling shit.

On Thursday the 3rd of October, the lumbar drain was finally removed, again I had to have two stitches done, and again, without the use of any anesthetic. Let's just say that I now feel that if anyone wants to talk to me about pain and sacrifice, I can definitely empathise on a very deep and personal level! On Friday I was given the all clear and was discharged from hospital.

Oh yeah, there was also the small matter of the hospital losing all my medications and apparently giving them to another patient by mistake but let's not talk about that! It infuriates me that they can be so incompetent sometimes...

So where am I now? Well I'm feeling a little better though I still take a lot of painkillers and I'm just trying to focus on recovery. We've decided to give my cortisol measurements a rest for now as it's best that I keep taking my replacement doses in order to make sure I don't become susceptible to infections again. So I'm just gonna make sure I rest well, try and keep up with my uni work and try and stay positive. My outlook has brightened a little and I'm lucky to have many friends and family who expressed a lot of concern for me and this has spurred me on to stay positive for them. 

I hope that in a few week's time I'll be able to post that I've improved but I'm also not trying to rush things as I know that this is a slow and difficult process which cannot be taken for granted.