UofU Hospital Stay Day 6

#Hydrocephalus #ItsOnlyBrainSurgery #HydroStrong#WeveGotThis #ShuntETVCombo

last Wednesday's surgery was just the first surgery I needed while I'm here at the UofU. Neurosurgeon's tend to want answers when a patient's shunts fail so quickly. So I have this extraventricular drain (EVD) draining my excess fluid just like a shunt would, but I get to see my spinal fluid in a little bag on my IV stand. It's equal parts really cool and really gross. The EVD measures how much CSF I drain throughout the day and night and also my internal intracranial pressures. The idea is that this will allow my neurosurgeon to choose a shunt and setting that will more closely match what my brain actually needs.

But having an external catheter increases the risk of infection a MILLION times more than giving the patient a shunt and closing the inside of the brain with stitches. This means that I'm limited to two visitors at a time and they all need to be over the age of 14. In other words, this really stinks for me and my kids!! Thank heavens for FaceTime and Skype.

My neurosurgeon is still trying to decide what to do for my second surgery. He can use this EVD data to choose a shunt that works better for me, or, he can choose to involve one of the pediatric Neurosurgeon's just down the hill at Primary Children's Medical Center and have them take a look at my endoscopic third ventriculostomy (ETV, the hole they made at the bottom of my third ventricle in 2003 that made me shunt-free for almost 13 years). We really rEaLlY want Dr Brockmeyer (the nsg who did my ETV) to take a look and make the fenestration wider or to remove any scar tissue building up down stream that is preventing enough CSF to drain. Whichever route he chooses, this surgery won't happen until Wednesday or Friday, at the earliest.

In the meantime, this EVD prevents me from moving around or sitting or standing without help from my nurse because the drain has to be level to my inner ear or else I over drain with a quickness and risk possible slit-ventricle syndrome or intracranial hemorrhaging. This has been quite the adventure, that's for sure!

Thank you for sending me funny jokes and memes. It's helping the time go faster. I've been sleeping better than I have since April. My nurses are all freaking AMAZING!! I love that i get to have surgery here. I mean, it totally stinks that I have to do this, but the nurses and staff here are working hard to keep me happy, pain-free, and distracted by the weight of this trial. It will be over soon.

Recovery Day 7

I can't believe it's been a week since my surgery! It's been an emotional roller coaster, for sure, especially as I remember how much I hate shunts. I mean I really truly hate having this pressure valve and tubing system manipulate the drainage of my CSF. Sometimes it drains too much. Sometimes it drains too little. Either way, I get an awful headache. And when my pain increases, my emotions start to overwhelm me and drag me down a path of ridiculous negative thinking. Crazy emotions are also a side effect of brain surgery. So I've been forgiving myself for this lack of emotional control. It's totally normal. But knowing that doesn't necessarily make it any easier so I simply ride it out until I'm distracted by something else.

I'm grateful for my hydrocephalus support FB groups that have been helping me keep the physical and emotional pain in perspective. One of my darling friends who's had three times the number of brain surgeries as I've had, gently reminded me yesterday that this shunt is working with my ETV to keep me alive so that I can be present with my family and live a pretty normal life. She said it might be a bit more painful, but I'm alive.

Truth.

Thanks for the encouraging words and prayers, my friends. I'm healing more and more every day.

Recovery Day 4

Recovery Day 4 - Social media has been a fabulous life line for me before and after my surgery. In the last ten years, I've become friends with so many individuals and families who face hydrocephalus every day with such courage and determination! Their knowledge and strength have been leading me forward in this recovery process.

I always knew having a shunt again was a possibility, but I can't believe how sad I am that I need one again! I had hoped my ETV would manage my hydrocephalus for life! And if it had failed, it would simply be a matter of reopening it. No big deal. Unfortunately, I knew that wasn't my luck from the second I woke up after surgery. I seriously processed those first few minutes after waking up from the general anesthesia like this: "I'm awake! Awesome!! Did they use stitches or staples? Please be stitches. Staples hurt a ton when they have to pull them out. And holy crap!!! I have a shunt again. Noooooo!!!" and then I started ugly crying which set off all sorts of alarms and whistles on the machines attached to me and got the attention of all the nurses. And guess what?!! The crying hurt my head SO much that I've been trying not to cry ever since which is really difficult to do, by the way, because my emotions are alllll over the place right now.

Isn't that just so strange? And that's why I'm struggling at the moment... Shunts fail. Allll the time. I had three fail in twelve months the first year I was diagnosed. And now that I have a shunt again, in our hydrocephalus world, we know it's just a matter of time before it stops working and I have to get a new one. But that's as far as I take my thought process before I remind myself to let go and let God lead and guide me. He knows the plan for me and it's up to me to do whatever it is He asks of me. And that's when I plead for more strength, courage, and determination and then get off my knees and do whatever it is that needs to be done. And at this point in the recovery process, all that I need to do is sleep, sleep, and sleep some more, hug and love my kidlets and Glen. We've got this. #hydrocephalus #failedETV#itsashuntlife #letgoletGod #brainsurgery

So I'm trying to move forward while still taking everything day by day, sometimes hour by hour. And I'm leaning heavily on the experience of my friends who have exponentially more brain surgeries under their belts than I do. Five surgeries is, oddly enough, a really low number in our hydrocephalus community. Isn't that weirdo? If someone who has hydrocephalus for whatever reason tells me that they've only had five or six brain surgeries in 20 years, then I'm going to be astonished and give them an excited, lucky for you high five! And if someone who's had hydrocephalus for whatever reason tells me that they've had 124 brain surgeries in 20 years, then I'm going to be less astonished and ask how many shunts they've gone through in those 100+ surgeries.

In other news... My aunt came for a visit today and our three-year-old told her, "My mommy's head has a hole in it." Out of the mouths of babes...

I love this message and I feel like this is a good post to share it on...

Recharged

Day 49

Yesterday was such a needed day of rest! I was even able to make it to church for a little while. Unfortunately the magnitude of what's going on hit me hard and I struggled with my emotions... I thought about the miracles and blessings we've seen so far and my heart was so full of gratitude! But I also thought about the seriousness of the procedure and how it will affect so many systems in my body! And I'm still trying to be okay with the idea that I might need to be shunted again. Regardless the procedure they end up doing, I know from experience that recovery won't be easy, but it'll be better than the pain I'm in right now! I was also overwhelmed yesterday by the love of our ward members. So many of them gave me hugs and well wishes and wanted to know how best they could serve our family. I'm telling you... Our ward is awesome!

And now it's Monday and I'm recharged and ready to fight the red tape again! I'm scheduled for surgery tomorrow (Tuesday) and we want to make sure my neurosurgeon is covered as an in-network provider, but that requires his billing/insurance office to actually do their job and submit the paperwork. Once they do, I've made friends with a gal who works in our insurance company's pre-authorization department and she's ready to get the request processed as soon as she gets the paperwork from my neurosurgeon's office (which was actually supposed to be submitted three weeks ago, but who's counting??). Pray for miracles, my friends, because this could all be over very soon!

In other news... I'm a human barometer. Holy headache!

Insurance: Practicing Medicine w/o A License?

Day 39

I'm jumping the gun on this day by 45 min because I'm done with day 38.

I went to the eye dr Thursday morning and was told there's swelling behind my eyes, but my optic nerves are good for the moment. But that was enough evidence to finally convince me, beyond a shadow of doubt, that's it's time for brain surgery #5.

Unfortunately, now they get to play the pre-authorization with the insurance company game which could take a business day or two or up to three weeks.

Anyone have friends who work for PEHP who can help move that along?

I'm not waiting for more than a week. The pain is getting ridiculous. I'm about ready to throw in the towel and force the issue by going to the ER.

Hug someone in your life who suffers from chronic headaches and migraines, my friends. They need your love. At least my headaches have a fix. Yeah it's brain surgery, but I'm positive that migraine sufferers would love any kind of procedure that could cure them of their chronic headaches, even if it's brain surgery. #hydrocephalus #brainsurgery #failedetv

Failed ETV Protocol

I came across this article today as I was googling "failed ETVs." I was halfway through it when I realized that it was authored by the neurosurgical team with which my new neurosurgeon is partnered at the University of Utah.

This paragraph, in particular, is the protocol for failed ETVs, but I'm just so frustrated that if all the "regular" tests can produce false-negative results, WHY are we having to wait for surgery?! I feel like crapola!! 

"Determining whether reclosure of the fenestration and recurrent hydrocephalus has developed can be clinically difficult, especially in the adult population presenting with chronic compensated hydrocephalus. In these patients, a return of symptoms may be fairly subtle and slow in onset. Because the ventricle size may change only minimally in these patients, this is not always a reliable indicator. If obstructive hydrocephalus has recurred, a diagnostic lumbar puncture may not reflect pressure within the ventricles and could also be potentially unsafe. Cine-flow magnetic resonance imaging may be helpful to demonstrate CSF flow through the ventricular fenestration; however, technical difficulties with such studies may yield false-negative results. If the return of clinical symptoms is compelling and diagnostic studies yield equivocal results regarding the status of the ventriculostomy, endoscopic reexploration is recommended."

Endoscopic Third Ventriculostomy in a Series of 36 Adult Patients