To revise or not to revise

[jmleanz]

Hello, we recently got Kyle's MRI results back and the NSG wants to operate. One of his shunt catheters is clearly outside of his 4th ventricle, making the ventricle larger than it should be. Luckily it hasn't changed dramatically over the past several months, so it's not an emergency. (Kyle has two valves with 3 catheters in the lateral and 4th ventricles for his non-communicating hydro.)

The NSG is going to consult with some other NSGs, but he is of the mindset that we should have a revision to reposition the catheter into the 4th ventricle. He stated that the other school of thought is to not operate since Kyle isn't clearly symptomatic, but only possibly symptomatic from the shunt (he's always vomited every day, and has poor coordination).

Anyone ever been in the position where the surgery is somewhat elective? It sounds like it could possibly help Kyle's motor skills, but of course any such surgery always comes with risks. Kyle's brain bleeds at birth were so bad the NSG isn't sure whether some structures on the MRI are brain matter or scar tissue. And there are risks in just navigating his brain to determine where the catheter should go. He said it would be a very non-standard revision.

Helppppp, we have no idea what to do and are just praying for answers.

[Austinsmom]

Sorry you’ve been placed in such a difficult place for a parent {hug} I think many parents have felt in the position where the surgery is "somewhat" elective, many of us have been Asked "what do you want me to do?", by a NS, with me I always took the wait and see what will happen, but looking back I wished I had just gone for the placement of a second shunt right away with my son, it took years before it came to placing that 2nd shunt and it was the thing that worked. I still worry that damage was done while waiting, but even that I am unsure of :rolleyes:
I also felt like it was place on my shoulders and made me question the NS :confused:
but you said your son always vomits every day, and has poor coordination, this isn't right, and if it is making the ventricle larger, he is having shunt problems.:( the worse thing of waiting, is no one knows what long time slowly building problems are possibly happening, everyone reacts to ICP build up different. and having more than one shunt further complicates everything:(
I feel for you, it is the worse feeling, are you somewhere where you can get a 2nd opinion from a leading NS? look at the list of doctors at the WWW.hydroassoc.org if you are in California I have a suggestion of a few great NS's that are on that list.
My Mommies heart goes out to you.
Keep us updated
Hugs
Deborah

[Spiritgal]

Hi there,

You poor thing...what a worry for you. I recently had what I thought was a totally elective full shunt revision....but as it turned out it's a good thing I had it when I did. I think this is often the case with these situations.....I too was symptomatic of shunt failure, but of overdraining, not underdraining. My shunt was obviously working too well and even though it wasn't life-threatening, my quality of life was greatly compromised; I couldn't work, couldn't socialise as I had to lie flat most of the time, and so on. Deciding to go ahead for a full revision when it wasn't a life-or-death situation was hard but when it came to the op and they opened me up, they found that the level of fluid in my brain was FAR lower than they had suspected. It was getting very dangerously low. It had gotten that way because I hadn't wanted to go ahead with the revision previously (they had been suggesting it for 2 years) as I didn't think it was strictly necessary. I have had problems adjusting with the new shunt but even though I don't feel as great as I'd hoped, I have peace of mind that my brain is now safe and everything is working as it should. It is a risk with the surgery, but if you leave problematic symptoms too long, it could lead to a bigger complication. I guess I'm saying consider it, because it sounds like he's going to have to have it done at some point anyway? My heart goes out to you and I hope you find relief for him soon. x

[Little E's Mom and Dad]

Each situation is different, so please do what you feel is best. I will add my experience with my son Ethan.

Over the course of a few months we saw Ethan's 4th vent slowly get larger. Our NS wanted to hold off on surgery until Ethan became symptomatic (Trouble breathing/swallowing). Ethan has two shunts, but neither go to the 4th vent.

As we had to deal with several revisions, we saw his 4th vent slowly start to go back down in size with each CT that was done. It stayed small for a couple of months.

More recently, Ethan again has had a bunch of revisions and one fenestration (his third) because of a loculation in his right temperal horn. When our NS did the fenestration he opened the communication between the 3rd and 4th vent, in addition to the other loculated areas.

Because Ethan has had 14 surgeries in 10.5 months of life, our NS has had the opinion that the less surgeries the better, as the risk of a surgery far out weighs the benefit if there is any question at all, unless there is a dire need to get it done.

Some surgery related problems Ethan has had: After his second shunt was placed, he lost his ability to cry/vocalize and changed his personality for about 3-4 weeks. He didn't get back to normal for a couple of months. After his second fenestration he got an staph infection and he had to be externalized for 10 days. During one revision, the new shunt tip hit a vein and casued him to bleed during and after the surgery.

We wish you the best, we know how difficult this is...

Nick and Tracie

[jmleanz]

Thanks, all. We just saw Kyle's neurologist yesterday and reviewed the MRI with him. He too agrees with the neurosurgeon that we should probably move ahead with the surgery. Kyle's 4th ventricle is rather enlarged, and he too has many loculations. Argggghhh I just dread this but hopefully it will be for the best in the long run. Our next step is to meet with both the NSG and the neurologist in three weeks and go from there.

[Suecr]

I can definatley relate! Hayley has 2 NS say wait and watch and 2 who say operate sooner than later. She is facing a fix for slit vents, either valve replacement or other things, and another craintomy to re-fenestrate the cyst. Cyst is in a delicate area, optic nerves and brainstem etc. So I am waiting to see what her NS says about Dr. Rekate's ideas for now. The thought of another craintomy makes me sick.

[kathleenandjoe]

What a hard position to be in. If it is progressively . . .even slowly. . . enlarging though. . . I would deal with it now rather than later. I just always picture more damage being done as pressure increases. I know too though - that surgery risks weigh in heavily too as you mentioned.

Just my two cents. . though it's easier for me to give those up with it not being my own daughter than you with Kyle.

Keep us posted.

Hugs,
Kathleen