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Old 08-20-2010, 10:08 PM
jmleanz jmleanz is offline
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Join Date: Oct 2006
Posts: 56
Default Cluster Surgeries

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.

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Old 08-21-2010, 09:07 PM
1Lily 1Lily is offline
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Location: California
Posts: 1,062

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.
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Old 08-27-2010, 10:42 AM
Jess Jess is offline
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Join Date: Nov 2006
Posts: 368

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.
Hydrocephalus-shunted with a CMVP shunt, one failed ETV, Chiari-decompressed, Myoclonus,SVS,high venous pressure.PTC and spontaneous CSF leak- eventually resolved. 28 yo. 34 surgeries to date.
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Old 08-29-2010, 01:12 AM
DystoniaGal DystoniaGal is offline
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Join Date: Oct 2006
Location: Gainesville, FL
Posts: 396

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.
DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
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Old 08-29-2010, 10:56 PM
jmleanz jmleanz is offline
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Posts: 56

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
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Old 09-04-2010, 12:20 PM
CathyE CathyE is offline
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Join Date: Oct 2006
Location: Toronto Canada
Posts: 983

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!
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