Neurosurgeon's Back In Town!

Day 44

We've been waiting for over a week for my neurosurgeon to get back in town. Thankfully today's the day!

I'm not trying to be all "woe is me!" whiny on you guys. I just have a lot of friends who watch their babies and older children struggle with hydrocephalus and I want to give them a clear picture of what ETV failure feels like. So this is for them...

It's almost been 13 years since my last shunt failed and I received my ETV and this experience has been very similar up to a point. It started out with the same symptoms: a headache that wouldn't go away, then dizziness and blurry vision, then nausea and vomiting. And in the past, that's when I'd go into a coma. Each time that happened, I remember throwing up from the pain and not waking up until after the surgery however many days later. But this time around, I've been coherent and very aware of what's going on. It think it's a huge tender mercy from the Lord because I really, REALLY don't want my kids to see me like that.

So now we're adding to the list of symptoms: a week ago my blurry vision turned into double vision, two days ago I started getting tingling and numbness on the left side of my body, and last night my always-there headache increased its intensity and won a place on "Kelly's 5 Worst Headaches of Her Life" list.

The waiting game is over. I'm visiting with a new neurologist this morning and then I'm pushing the issue with my neurosurgeon, but that will probably happen from the ER. This isn't the kind of headache we can ignore. It's time for surgical intervention.

#hydrocephalus #ETVfailure #brainsurgery #FaithHeals#StrengthCourageDetermination #EverythingIsGoingToBeFine#TenderMercies 

Somebody? Anybody??

Day 40

There are only a few neurosurgeons in Utah who can perform an endoscopic third ventriculostomy (ETV). In this procedure, the surgeon creates a hole at the base of the third ventricle thus creating a pathway for CSF drainage. It takes less than ten minutes. I had this surgery almost thirteen years ago. And it seems the hole they made has either closed, partially closed, or is still open and just not draining enough CSF. The first two scenarios require doing the ETV again. The last requires the placement of a shunt.

So of those few neurosurgeons with whom I have complete confidence in doing the ETV, more importantly doing the ETV in MY brain, only one is covered by my insurance AND he's out of town until late next week "at the earliest." Yup. This means, that if my symptoms get worse, I get to go to the ER and take my chances with neurosurgeons who think they can do this procedure and maybe they'd be fine, buuuuut... It is my brain and a big ol' artery is millimeters from the tool they use to make the hole. I'd really like the best of the best in the O.R.

We're voting that my symptoms don't get worse and that I can hold out until whenever this surgeon gets back.

Not Just For My Good

Day 37

The LAST thing a neurosurgeon wants to do is perform brain surgery. They want to double and triple check everything else before they jump to the conclusion that something is structurally wrong with the brain that requires an invasive operation. My last surgery required the neurosurgeon to use a tool that had to work millimeters away from my basilar artery which, if nicked, would cause immediate death. I totally understand and am kinda grateful for the reluctance!

Soooo, when my surgeon tells me that he wants to rule out everything else that might be causing these symptoms, then I get to swallow my frustration and work through the process so that everyone involved feels confident that we're choosing the best path that leads to my good health and healing. And if I need to be shunted again, then we know, for sure, that the shunt is the ONLY and BEST option.

In the meantime, please send your happy and healing thoughts and prayers our way. We're trying to put together an awesome health care team who can work together to come up with answers and solutions in a collaborative way.

And as I navigate through this journey, I'm taking notes!! Our hydrocephalus health care community in Utah is fantastic on the pediatric level and it's beyond time that we make our adult medical community just as amazing! And you KNOW I'm all over that!! I'm convinced that this journey isn't just for me and that everyone in Utah's hydrocephalus community is going to benefit from all of this!

Endoscopic Third Ventriculostomy (ETV)

This is similar to the last brain surgery I had in October 2003 after my third shunt failed. It's a relatively quick procedure actually.

The question of the hour is whether or not this hole they made has scarred over and closed/partially closed and needs to be reopened OR whether or not the hole is open but is no longer draining enough CSF and I need a shunt to drain the excess fluid. Does that make sense? The MRI was supposed to show the CSF flow through this fenestration, but they didn't do that test yesterday for whatever ridiculous reason. But my symptoms suggest that either case requires surgery.

We will have a better game plan on Tuesday. So in the meantime, thank you for your prayers. I guarantee that we're feeling each and every one! #hydrocephalus #endoscopicthirdventriculostomy #etv #etvfailure #aqueductalstenosis

Bowling Ball Head

The Nurse called just now to tell me that my dr left to go out of town this weekend. He looked at the MRI just before he left to see if surgery was needed immediately. He concluded that I can suck it up over the weekend and that we'd come up with a game plan on Tuesday. Nurse said he acknowledged that my ventricles are enlarged, but not excessively so. But Based on our conversation on Monday, I'm pretty sure he'll do surgery because I'm symptomatic.

My friends on the ETV Facebook page think that the hole is probably still allowing fluid to flow but not as much as it should. And since many of them have had ETV revisions, I trust their interpretation of the symptoms and brain scans more than anyone else except my neurosurgeon.

Hope & Faith

Day 33. 

Really dizzy and nauseated this morning. Headache isn't too bad. Hoping for answers this morning!



EDIT: So the Nurse called just now to tell me that my dr left for an out of town conference this weekend. He looked at the MRI just before he left to see if surgery was needed immediately. He concluded that I can suck it up over the weekend and that we'd come up with a game plan on Tuesday. Nurse said he acknowledged that my ventricles are enlarged, but not excessively so. Based on our conversation on Monday, I'm pretty sure he'll do surgery because I'm symptomatic. 

My friends on the ETV Facebook page think that the hole is probably still allowing fluid to flow but not as much as it should. They all recommend surgery. And since I'm the only one in the FB group who hasn't had a revision of the ETV (out of 300 who have had at least 2, but mostly 3 or more), I trust their interpretation of the symptoms and brain scans more than anyone else except my neurosurgeon.

My Brain!

Hey look! It's my brain!!! Unfortunately, the neurosurgeon didn't call tonight. So no definitive answers until tomorrow. We can see the ETV, but we can't tell whether or not there's flow through the hole aaaaand the technician didn't do the right CSF flow study. I wish I was making that up. We believe the third and lateral ventricles are slightly enlarged (compared to my previous scans... always compare to the patient, not other people's normal). So that's all we know at the moment. I'll keep you updated as we learn more.

Chocolate & Money

Day 32.



RIGHT??!!! Haha! 

I actually woke up today feeling pretty good. It was awesome... and very short-lived. 

We're all just waiting to see the results of the MRI I'm getting Tuesday morning (unless there's a cancellation and they can get me in before then or my symptoms get worse). If the MRI shows that the ETV is closed/closing, then it's an easy fix of just reopening the hole. If the ETV is still open and CSF is flowing, then we have to start exploring the idea that it might not be allowing enough CSF to drain out of the ventricles. At that point we'd be looking at getting a shunt again. Bleh. We'll keep you updated.

Keep Calm

Whatever. YOU keep calm. Extra spinal fluid is super painful!! I've gotta give more sympathy to my fellow hydrocephalus warriors because dang! This hurts!!! Not sure when we're supposed to cry "uncle," but I'm pretty sure I'm quickly getting to that threshold... Almost 13 years without this pain. The Lord blessed us immeasurably, but I guess it's time to address this problem again. #hydrocephalus #etvfailure #headache