Cluster Surgeries

[jmleanz]

Our sweet Kyle went back in today for his 20th revision at age 6. He just had #19 two weeks ago. He has a history of needing multiple surgeries, or "cluster" surgeries, in a short period of time. In 2007, he had 9 surgeries over 3 months. In 2008, he had 5 over 2 months. Then we had 2 blissful years with no surgery. Now he's had 2 more surgeries within a few weeks due to all three catheters being blocked. It just breaks my heart to see him go through this all the time and then I wonder how long until the next emergency? Anyone else have these cluster surgeries? He does have more involved hydro with non-communicating ventricles, obstructions, multiple loculations and a trapped 4th ventricle. Darnit.

Janice

[1Lily]

Janice,
I can offer no advice, but I am sorry, it's got to be so hard to see your poor little boo suffer through all of this. I pray that they get it right the first time, this time.
Hugs,
Lily

[Jess]

I have a lot of the same problems as Kyle and I find that I too go in clusters with regard to shunt malfunctions and surgeries. 2006,2007, 2008 all had clusters of surgeries in them so far. I am so sorry for him. I hope he goes surgery free for a while.

[DystoniaGal]

Yes I have had 2 sets of cluster surgeries. My last set was in 2008 i had 3 surgeries within the span of 7 weeks.

[jmleanz]

Thanks, all. I wonder what makes the cluster of surgeries end... Does the debris actually finally dissipate? Sometimes it feels like it is just pure luck and there's no logic to it

[CathyE]

Toronto Hospital for Sick Children NS's have said that if you have one surgery, you are likely to have a number of them
In fact they have reduced the number of surgeries by about half trying to prevent this. (part of a study shard with several other hospitals in Canada and the US) Our Ontario SBHAO has guest speakers, usually including a NS, at the Presentations and Annual Meeting - Oct. 2nd this year.
(you do need to pre register)
Question is, what about the poor child needing relief? I am sure sometimes the surgery would have helped.
It' a dilema

I hope Kyle is out of the surgery cylce and for a long time!
Cathy