Thursday, May 19, 2011

Endoscopic Third Ventriculostomy ETV (vs. VP Shunt) in Spina Bifida

Many of our friends and family don't understand the difference in the surgeries we were offered for Ruth's treatment, so here is a brief explanation of my understanding of the two, and why we chose the one we did.

VP Shunt

A Ventricular-peritoneal (VP) shunt is a device which drains the extra cerebrospinal fluid (CSF) in the brain into the peritoneal cavity where the fluid can be absorbed. (see "What is a VP Shunt?") This is a life saving device, but it has it's disadvantages. They can get infected, they can clog, the valves can fail, requiring further surgeries to repair the mechanics.

Endoscopic Third Ventriculostomy (ETV)

Endoscopic third ventriculostomy (ETV) is an alternative to shunt placement for treatment of hydrocephalus. The technique opens a hole inside the brain to re-establish effective flow of cerebrospinal fluid (CSF).
    Advantages vs. VP Shunt:
  • No foreign object (shunt tubing and valve) implanted in the body, lowering the risk of infection.

  • A lower long term complication rate compared to a shunt.

  • The chances of improving may be lower with ETV compared to a shunt

  • Although very unlikely, the risk of serious complications with ETV compared to a shunt operation.

What we chose and why:

Ruth's nuerosurgeon mentioned at her last visit that she may be a candidate for an alternative surgery. ETV is not widely done for treatment of hydrocephalus in spina bifida, especially in young children. The way it was explained to me by Ruth's neurosurgeon (or more likely the way I understood it) was Spina Bifida brains often have a little different layout, that can cause the surgery to be more difficult. He looked at her MRI, and said she is not a perfect candidate, but she is a promising candidate. But he did say, he could start the surgery, and not be able to continue for that reason. Meaning he would then place a VP shunt instead.

The ETV also has a much lower initial sucess rate. There could be just too much fluid, and it could start leaking through the inicision on her head, causing him to possibly place a temporary drain and then a vp shunt.

There are also higher risks of serious complications with the ETV, because it is a more invasive surgery. Bleeding is a big one.

So with all that, why should we even bother with the ETV? Well, the biggest reason, if it works, she will not have a life long dependence on the VP Shunt, a mechanical device that can and often does fail. It is a more "natural" treatment for hydrocephalus.

For the ETV, our surgeon would make a nickel or dime size hole on the front left or right side of her skull. For the VP shunt, the incision would be back behind one of her ears, and the hole in the skull is much smaller, although they also make an incision in the abdomin for the shunt tubing. While, as a baby, these both would be very noticable, as she gets older her hair would cover the scars and no one would know.

We really hope and pray she is one of those with no complications and require no further treatments. We do realize there is a strong likelyhood that she will end up needing a VP Shunt anyway, and while I hate that she may have to undergo a 2nd surgery, that could and often does happen with the VP Shunt as well (called shunt revisions). So even if we chose to skip straight to the vp shunt, there are no guarantees we are saving her from more surgeries.

Like the fetal surgery, it's one of those hard decisions as a parent you have to make for your child. I just pray we are making the right one.

For more information about the ETV, see this page.

Please continue to pray for our sweet Ruth. That the surgery goes without complications, that the ETV is successful in treating her hydrocephalus, and that her recovery is easy and not painful.

I will leave with a cool Youtube video of a nuerosurgeon walking his students through an Endoscopic Third Ventriculostomy surgery:

Crawling & Standing!

On a happier note, Ruth is crawling much faster! I can no longer set her down in one part of the room and expect her to stay there. She is on the move!

And a video:

She is also standing for short periods playing with her toys! She is not pulling up yet, but her physical therapist has been working with her on just that and she is getting closer :-)

Her ankles roll in a little bit when she stands, so she wants me to have her pediatrician write a prescription for SMO's, which are ankle braces to give her more support. The hope is with these she will just take off!

Here is a picture of what the SMO's look like:

She will be taking a little break from PT while she recovers from the ETV surgery, but hopefully not too long. She is making such great progress.

MRI & Neurosurgeon Appointment

Ruth had her first MRI under sedation since leaving San Francisco. I hated that she had to be put under general anesthsia, but understood. I was a little worried about the no eating thing beforehand, but since she is breastfeeding, I could nurse her up until about 6 hours before, and she could have clear liquids until about 4 hours before. She was the first case of the day (we got up there at 6:15 am), and so I just woke her up at midnight and again right before 2 am to nurse, and she did fine. Since she has some major separation anxiety going on right now, they gave her a mild sedative before taking her back so she would be loopy, and she was silly on that stuff! But it worked, no tears going back. Her MRI went quickly, and about an hour later they called us back. Immediately I could hear her screaming, she woke up and I wasn't there! Poor baby. She handled the sedation just fine, so much better than last time, but she was only 5 pounds then too! She wasn't even all that groggy. She did have a nasty reaction to the tape they used on her face and chest, it took about 24 hours to go away. She also has been a little raspy when she cries, I guess the tube irritated her throat.

Well, Ruth's neurosurgeon appointment didn't go as well as we had hoped, but it wasn't much of a surprise either. Her MRI showed that her ventricles have continued to *slowly* increase, and her head circumference is now at the top of the growth chart. He now considers her to have hydrocephalus, or "water on the brain", and thinks it's time for surgery. We were given the choice between two different types of surgeries, one being a VP Shunt, the other a ETV. I will explain the difference between the two in a separate post.

While we are disappointed, we knew this was coming. I have been watching her head slowly increasing on the growth curve, and didn't have much hope that the fluid was stablizing.

The surgery is scheduled for this Monday assuming she passes her pre-op exam tomorrow. We expect her to be in the hospital one to two nights unless there are complications. Please keep her in your prayers.