The Case of the Bi-polar Shunt

This is so dumb it's almost comical... My shunt was adjusted 19 days ago. It seemed to be a pretty good setting until last Tuesday when my shunt started draining WAY too much spinal fluid for whatever reason. And it hasn't stopped.

I prefer over draining CSF to not draining enough because if I'm over draining, I can lay down flat for a few hours allowing my CSF to build back up again and the pain goes away completely! ... until I stand up again. Sometimes I can be up for more than an hour, but it'll hurt. The other extreme of having too much fluid is much more difficult to manage and almost always requires brain surgery. Laying down makes it worse (because it's not draining enough and keep building up pressure).

So back to this over draining shunt... The pressure setting can be adjusted up or down because it's a magnetically programmable shunt. They use a magnet tool over the top of the shunt valve to change the pressure setting making it more difficult (for over draining) or easier (for under draining) for the CSF to find a healthy balance.

The PA tried to adjust my shunt for over an hour yesterday (it should only take minute or two plus an X-ray to confirm the setting). And therein lies the problem: my shunt valve is stuck. They couldn't get it to move. They just got a new adjustment machine and we'll try it again today, but really?!!

And here are the options moving forward...
(1) the new tool adjusts my shunt up several settings without any problems and then we just watch and wait to see if it's a good setting.
(2) the tool doesn't work and we decide to try and stick it out until my next appt Dec 19 and make plans from there (to operate or not to operate... that is the question).
(3) replace this shunt now if we deem it broken.

I'm not in a TON of pain and would rather deal with this for a few months than jump into yet another surgery. But if this valve can't stop over draining so badly, then we'll have to do something about it.

And as always, thank you for your prayers!

Warning: RANT ahead...

A day in the life of a person with hydrocephalus... my shunt was adjusted Friday morning. Yesterday wasn't perfect, but it was better than the day before! Today is worse, but not as bad as it was before the shunt was adjusted. Most neurosurgeons believe that it takes several days and weeks for the brain to adjust to a new pressure setting. It's been my limited experience (two programmable shunts in college and two since June) that my brain gets used to a new setting within a few days. But sure, I'll wait the obligatory two to four weeks. I have nothing better to do.

This is something hundreds of thousands of families in the USA alone deal with every day for the lifetime of the individual with hydrocephalus. And really, we're the ones who are truly blessed with first world technology!

I truly miss the almost 13 years that this wasn't a problem for me. And I hope and pray that neurosurgical technology will get better in my lifetime and it will allow a neurosurgeon to remove the scar tissue blocking the natural flow of CSF through the brain. Our current technology is only 65ish years old and we've come a LONG way! It isn't impossible and I'm grateful for the efforts of the Hydrocephalus Association in helping raise awareness, education, and donations to help find a CURE for this condition.

Help the cause! Donate!!

Day in the Life...

A day in the life of a person with hydrocephalus... my shunt was adjusted Friday morning. Yesterday wasn't perfect, but it was better than the day before! Today is worse, but not as bad as it was before the shunt was adjusted. Most neurosurgeons believe that it takes several days and weeks for the brain to adjust to a new pressure setting. It's been my limited experience (two programmable shunts in college and two since June) that my brain gets used to a new setting within a few days. But sure, I'll wait the obligatory two to four weeks. I have nothing better to do.

This is something hundreds of thousands of families in the USA alone deal with every day for the lifetime of the individual with hydrocephalus. And really, we're the ones who are truly blessed with first world technology!

I truly miss the almost 13 years that this wasn't a problem for me. And I hope and pray that neurosurgical technology will get better in my lifetime and it will allow a neurosurgeon to remove the scar tissue blocking the natural flow of CSF through the brain. Our current technology is only 65ish years old and we've come a LONG way! It isn't impossible and I'm grateful for the efforts of the Hydrocephalus Association in helping raise awareness, education, and donations to help find a CURE for this condition.

www.hydroassoc.org

Headache free?!!! Whaaaaat??!!???!!?

It's been 24 hrs with my new shunt pressure setting and so far so good! I woke up PAIN-FREE until I moved my head and then the pain shot through my whole body. But as long as I kept my head still, I didn't have ANY pain. As soon as I stood up, the sharp pain subsided and I had a productive morning! And now, my head is just starting to ache and I'm exhausted, but hello! That's a completely different story than the one I've lived with since April. Here's to my brain continuing to adjust to the new setting and the pain going away 24-7!

This shunt is working too hard!

After two weeks of my shunt overdraining CSF (feels like you've changed elevation and your head fills with pressure but never "pops" and you get the worst headache you can possibly imagine and horrible nausea and vomiting EVERY time you sit or stand up), I'm finally allowed to get it adjusted! They'll use a tool that sits on top of the skin above the pressure valve (top right of my head... not the same in the picture) and the magnets in the tool device adjusts the shunt setting a bit higher so that my intracranial pressure has to be higher before it drains any CSF.

I told my nurse and dr two days after surgery that I was still overdraining, but they said I needed to wait a month before changing the setting. I stuck it out for 16 days, but it's getting a ton WORSE, not better.

Hopefully this adjustment will be all I need. At least we know that the shunt is not clogged (how three of my shunts have failed) because it's still moving CSF. This means we can play with the settings to make this work.

HOORAY for Shunt Adjustments!

After two weeks of my shunt overdraining CSF (feels like you've changed elevation and your head fills with pressure but never "pops" and you get the worst headache you can possibly imagine and horrible nausea and vomiting EVERY time you sit or stand up), I'm finally allowed to get it adjusted! They'll use a tool that sits on top of the skin above the pressure valve (top right of my head... not the same in the picture) and the magnets in the tool device adjusts the shunt setting a bit higher so that my intracranial pressure has to be higher before it drains any CSF.

I told my nurse and dr two days after surgery that I was still overdraining, but they said I needed to wait a month before changing the setting. I stuck it out for 16 days, but it's getting a ton WORSE, not better.

Hopefully this adjustment will be all I need. At least we know that the shunt is not clogged (how three of my shunts have failed) because it's still moving CSF. This means we can play with the settings to make this work.

My family

I 💕 my cute family!