Marilou has a ? (re Raffi)

[CathyE]

I just spoke to Marilou. Raffi still can’t tolerate sitting up.
After the surgery his setting was at 60. Later they raised it to 100.
Today they will raise it to 130 to see if this helps.

As Marilou said, the NS “decided to place a new valve in the left vent which he said was under high pressure. He y'ed it to the existing shunt.”

Well the left vent was small to start with and had “surprisingly” high pressure. It is now possibly slit.
(a matter or terminology). There is also a possibility that it is isolated. However the NS said some CSF passed into the already shunted vent while he was “in there”.

Marilou is hoping some of you can tell her how things went if you or your child had vents shunted that were or became slit or anything else that might help her understand what their options are (my wording) if any, if raising the setting today doesn't help.

I hope I explained this properly!
Cathy
PS I just remembered Marilou also wants to know since Raffi has non-compliant vents, can they become compliant again? and if so, (this is my ?) would it take a long time?

[kathleenandjoe]

Those are questions for her NS for sure.

I think he proved that it was not isolated from what you describe here.

Praying they do not get discharged until that NS who waited far too long to do anything figures out what exactly to do. . . .

[MICHAELSMUM]

Hi, my son Michael has slit vents we were told this in nov 06 a month after he had his 7th shunt put in.Over the next 8 months michael was having headaches almost all the time when they got realy bad he would just colapse on the floor he was only ok if he layed down flat. he also had loads of seziures.and loads of vomiting. What was happening was as the vents were so small when the valve opened to let out the csf the vents colapsed around the catheter which caused the holes to block, when the pressure rose again the vents would open enough to unblock the catheter. A siphen was mentioned a few times, this is just a smal devise that goes in along the shunt tubing down the chest and stops the shunt from over draining but Michael never had this done.In august 07 Michael had his first sub-temprol de compression (a small piece of skull removed from the side of his head). this is ment to give the brain some where to move to if the pressure if to high and the vents do not open enough.in nov 07 the other side of michaels head was also done, this had great results and he was almost syptom free for over 3 months which was great. un fotunatly Micheal started having probs again so his shunt was changed in april 08 and the scan showed the the de-compressions werent really working the back vents had opened up a bit but the front ones hadnt, which is quite stange apparently. so he had a stata valve placed in. the catheter was placed so that in went in all of his vents it is about 10cms long. we had quite a lot of probs getting the pressure right and the setting was changed 5 times he is now at 1..this is working quite well but we still have regular headaches and seziures.. but we are dealing with these one day at a time.. I hope that they can help Raffi feel well very soon I know from experience with Michael that it takes time to sort things out, but keep strong. sending hugs to Raffi and mum and also dad..take care elsena and michael xx

p.s if Raffi has non compliant vents i do not think they will be come compilant again, I think that once this happens thats it no going back. thats why there are opptions like de commpressions. hope this helps..



Mum to Nikki 16, Claire 14 going on 30, Peter 9 adhd sencery probs, and Michael 8 hydro on shunt#8 slit ventrical syndrome,2 sub=temprol de compressions, dandy walker syndrome,ataxia, elpilepsy, sight probs and as cheeky as they come!!

[Jess]

I had a proglonged bout of untreated symptoms like Raffi and my vents became slit-like at that time. This was when i was in high school. I was told by a NS that when you are shunted as a baby, the vents get noncompliant after a while. There is no resolving that. I had a lot of problems with overdrainage after that first surgery, but changing the settings on the shunt until i was comfortable helped a lot. I went in for adjustments of the setting about once a month for six months. I would check with his NS and see what his plan is. Plus, he can give better answers to Raffi's specific case. This is just what i remember from about eight years ago and my own situation.

[Suecr]

Sorry to hear the little guy is having problems. Hayley has not experienced this, so I do not have much advice. Her vents are very small as well. I hope the NS can come up with a sound plan quickly.

[Austinsmom]

Austins vents refilled...
Pleased ask for an update
Love and well wishes
Deborah

[hydromom]

Thanks for taking the time to respond. I am not sure how people with non compliant vents get diagnosed with a shunt malfunction, yet alone having one programable valve for two catheters. A tap would not neccessarily work. Oh how life can get so confusing.
Thanks
Marilou