Shunt Alternative

[CalebsMommy12]

Just read about a shunt alternative called Endoscopic Third Ventriculostomy and was wondering if anyone had any personal experience with this or any familiarity with the procedure they could share.....?

[LisaJoy]

From what I understand, it is a very risky procedure, but great if it works. There must be a reason, however, for the fact that it has not become standard procedure in western countries. My understanding is that it is used primarily in developing countries where follow-up care for children with shunts is hard to come by. I seem to recall one parent reporting on here being told that it is not a suitable procedure for babies under a year old. And -- not to be alarmist, but you should know this -- on one of the rare occasions on this site where a newborn infant has died, she died on the operating table undergoing that procedure.

[jveprek]

They told us that it doesn't work well with a child under 1, but that a child over 1 is a good candidate. They have had some great success with it. I guess it's a longer hospital stay (at least 1 week) and they do an external drain, and do something with that to try and keep the hold in the ventricle open. If it doesnt' work, they just put in a shunt. When Madi was having shunt problems, they said if she still was at 1, they would do it. We are planning on trying it the next time Madi needs a new shunt.

[Ziggy]

There is a chart that our surgeon showed me that shows the % chance of success on the operation. Age, reason for hydro, and reason for the need to do the op at the moment (infection, blockage, etc) are all factors.

[Summer25]

I was told as a child that because of the chiari, that it doesn't work as good for people with sb. But this was years ago.

[Noefnway]

Before shunts were developed in the 1950's,This third ventricle procedure was used to treat hydrocephalus.The trouble was that a major artery lies near the location of the hole which is made in the third ventricle.If the artery is struct, death will most likely occur.Through the use of endoscopy, this risk is greatly reduced.The cause of my hydrocephalus was aqueductal stenosis.I have a soon to be 22 year old shunt which I will
Have replaced with a stent in the Aqueduct os Sylvius using endoscopy if my shunt no longer works.
Patrick

[ainemc]

I asked Caitlin's neuro about this a few months ago. He said similar to what Summer said -it depends on the anatomy of the child. It works better for the over 1's but it wouldn't work with Caitlin due to her Chiari malformation. He said he much prefer's ETV's to shunts but unfortunately it isn't suitable for alot of people with hydrocephalus.

[CalebsMommy12]

I asked Caitlin's neuro about this a few months ago. He said similar to what Summer said -it depends on the anatomy of the child. It works better for the over 1's but it wouldn't work with Caitlin due to her Chiari malformation. He said he much prefer's ETV's to shunts but unfortunately it isn't suitable for alot of people with hydrocephalus.

This is some if what I read on it but wasn't aware of the chiari being a decided factor so thank u for the great info everyone ...also im wondering how often do shunts now days need replacing and is it a pretty simple procedure to replace or is it risky??

[Summer25]

shunt surgeries are easy. Or atleast for me they are. I am in 1 day and usually out the next or the third day. I usually feel a ton better. No pain either. I haven't had a revision since I was 12 and I am 28 now.

[proudmama]

My son Cedar had ETV CPC done for hydrocephalus at 2 weeks old this past year, February 2011. We did not know about Cedar's SB before he was born, and the shunt neurosurgeon was unavailable, so we were transferred to Boston Children's hospital where Dr. Warf has pioneered the surgery for children under one year.
The ETV alone doesn't work as well, but combined with CPC, Choroid Plexus Cauterization, the surgery is about 80% successful, the other 20% requiring a shunt.
I did not realize there was any risk of death, and I believe that is extremely rare. Gosh I am glad nobody told me that before my son had his surgery, I was nervous enough! But he is almost a year old and doing great, he has not needed a shunt, and will be getting one more MRI just to make sure.

I think there are only a few surgeons in the country trained by Dr. Warf's method and he is working on training more doctors.

[bcain]

I heard about or read about it somewhere. You are the first person w/experience that I've heard of. Thanks for sharing. So great that some kiddos can escape the shunt w/this. I did read ,like the other poster, that this was developed for underdeveloped areas where follow up care was unlikely.

[james_95]

I have been in touch with Dr. Warf about my daughter with SB (9 months old now) and he has some incredible insight. Right now my daughter doesn't have a shunt or ETV but her pressure may be increasing and intervention might be necessary...if so, ETV/CPC by Dr. Warf will be a strong consideration. I have attached a study from 2009 where 93 children with Spina Bifida were monitored, some had the VP Shunt, some had the ETV/CPC and some had no intervention even though the ventricles were enlarged. The results are VERY interesting.

http://thejns.org/doi/pdf/10.3171/2009.7.PEDS09136