Is this just part of life now?

[Mom2HeathandKynzer]

Kynzer has had a VERY rough yr. shunt wise as ya'll know. 7 revisions and one new shunt added in his 4th ventricle. That one was added at the very end of may. It has been almost 3 months since his last surgery which is the longest he has been all yr. without surgery.
About 2 months ago his started vomitting every morning as soon as he would wake up and then every now and then during the day...but he didn't feel bad. His ct scans all looked good(we have made many trips to the hospital to be checked) And we have now talked to 2 different NS who say that it's just the shunt in his 4th ventricle causing this...it's close to the are of the brain that does this. But from what i gather there is nothing they can do? Have ya'll heard of this?
He is going for SDR surgery in Little Rock Monday and I plan to talk to the NS doing that surgery as well..and see what his opinion is...but this is getting old...I can't imagine how he feels about it.

[knowamiracle]

Anita, I have never heard anything like this but my grandson Noah has 3 shunts, 1 is in the 4th vent and he regularly throws up in the mornings and off and on during the day. Some days no throwing up. Noah has had this shunt since about 2 or 3 months old and has had the vomiting since we can remember, it has just become a normal for us. Like you said he doesn't feel bad, Noah is doing well on his weight, this month he was in the normal scale at the doc's office for his age, so maybe there is something to the shunt in the 4th vent and throwing up. I sure hope things smooth out for the kiddo, I will say a prayer. Aggie

[kathleenandjoe]

Why did they put another shunt and there then? I cannot even fathom what your dealing with and trying to grasp now.

If that is "normal" then what kind of life is that? And how in the world can you determine when there is a shunt malfunction then if vommitting is a frequent occurance with the 4th vent shunt?

No this should not be a way of life for him and you. Definately not. It sounds awful and unfair. Do not accept it.

I would be seeking a second and third opinion now - maybe Rekate . .. or our new one here in DC - Myseros - specializes in difficult hydro cases I know. I really like him so far, but then he has not had to do anything for us yet since we're new. Great facility though - children's national hospital.

Bless your hearts. As if hydro is not stressful enough alone.

I know that during Becca's furst two years with eight surgeries and two CSF infections - I thought for sure that it was always going to be that way. In and out of the hospital. I knew no other way and neither did she. Everyone would keep telling us that odds are she will not get an infection and that everything would be fine after this shunt/etv. .. or that surgery. . . and so on. I learned to tune it out becasue Becca always seemed to be in that small percentage who get infected or have complications or failures or malfunction over and over again.

Well we've been out of the OR for 3 years now. Life has been grand with the exception of seizures starting at age two - after our string of infections and surgeries.

I pray that you will see that light and good patch soon. And that you find someone who will join you in not accepting this as how it will be. There is a ns somewhere that will work to make his life better.

What is that surgery he will have next week? I have not heard of that one.

Hugs,
Kathleen

[Mom2HeathandKynzer]

Aggie...thanks for your reply! I pray things get better with your grandson and the vomitting also...this is no fun!! I can't imagine having three shunts...2 are making me crazy!:eek:
Kathleen...he had to get a 2nd shunt because of a trappen 4th ventricle...so they put a seperate shunt in the 4th ventricle. As far as the vomitting goes...he doesn't have a headache when he does it...it just happens...so unless he complains of a headache I'm not as concerned about a malfunction...but we have made a couple of trips to the hospital just to make sure.
The surgery he is having is selective dorsal rhyzotomy for his CP. It will reduce the spasticity in his legs and hopefully help him with his walking. And since a NS will be doing the surgery I definately plan to ask him what his take on this whole 4th ventricle shunt is. I would love to see Dr. Rekate...but I don't think we can go to Arizone right now...we have had tons of expense this yr. with all the hospital stays..and money is pretty tight...however..don't get me wrong...if Kynzer needed to go then we would make a way you know?

[knowamiracle]

Normal in this respect is a good life for us, there was a time that Noah would throw up all of the time, that was back when he was having a revsion every few days to a week and us being told to stop the surgeries and let him die, the consenses with all the doctors invovled was that his brain was that of a vegtable, now no surgeries in 2 years, we could definitely tell when there was a shunt malfunction opposed to the everyday throwing up, the throwing up is on a much smaller scale now. We kind of feel that Noah went through so much in the beginning with 27 surgeries by 6 months, the docs telling us they could not control how bad his head and the hydro was, so we feel it is best to let the shunts alone, rather than go into his little head to maybe fix the throwing up, maybe not and maybe start a chain reaction of shunt malfunctions, we have been thru that and that is no way to live! Noah is doing quite well, development is slow but sure he doesn't have sz and the only med he takes is for his uneasy stomach , his ns is amazed at what all he can do and says that the head and hydro are doing great, we can deal with the throwing up doesn't seem that awful to us. Aggie