Trapped 4th ventricle

[Mom2HeathandKynzer]

I can't remember who here other than Kynzer has a trapped 4th ventricle. The reason I am asking is because Kynzer has had 31 surgeries...with #32 coming up Wednesday...most of them being on his shunt in the 4th ventricle...whether it be clogged....broke..and these last 2X's infected. Anyways...I was researching today and it seems that the preferred treatment for this trapped 4th isn't shunting...but fenestration(sp?) Is our NS behind times? I am thinking of seeking a second opinion anyways just for my peace of mind...but what do ya'll think?

[knowamiracle]

Anita, our Noah had a cyst in the 4th vent as a new born we were having quite a time keeping him stable and getting control until they did the fenestation. Noah still has a shunt in the 4 th ven, and that is the only one of his 3 that have not been replaced since the fenestation. Sending prayers for your lil guy to get this problem out of the way and get on with living, fun and play.

Aggie

[Mom2HeathandKynzer]

I remember all the troubles your sweet little grandson had when he was born...how is he doing?
Can you tell me why he still needs the shunt in the 4th if he had a fenestration?

[Jess]

Anita- I am sorry Kynzer has to have surgery again. I have the same kind of a shunt as he does and have had a lot of problems with infections and whatnot since it was put in. The most recent one is a year old at this point. My last visit to the NS in July showed a trapped ventricle on CT and this is new for me. I also have a large csf filled cyst residing in my head because the pressure was up way too high for an extended period of time. I have been really confused about these new things, so if you find out anything useful or interesting please let me know. I hope this is the last surgery for kynzer for a long time. I will be thinking of you.

[Mom2HeathandKynzer]

Has your NS ever mentioned doing a fenestration instead of the shunt? I am seeing alot of places where this is recomended because of the failure rate of shunts in a trapped 4th....but Kynzer's current NS won't even talk about it

[Jess]

The only non shunt type thing that I have had done is an ETV, which did not even last a whole day. is a fenestration the same thing or can they do that and keep the shunt in? I got the CMVP shunt for the first time two years ago, and it has had to be revised once and it then got infected, which was a total nightmare. The infection period was when they tried the ETV. I was reading something about trapped ventricles and it seems to me that in my own case, the occipital head pains and neck stiffness/pain might be due to the trapped ventricle. I will ask about it when I go back in December. I was beginning to feel as though I was crazy, but it is nice to know I am not alone.

[Austinsmom]

Hi, my son Austin has a trapped vent ( or compartmental Hydro) he had a fenestration and it re-grew very quickly after the fenestration, which happens often on ETV's and any fenestration, due to the brain wants to heal itself, so for both of these procedures you may need to do this 2 or 3 times before it takes, so it has its risks, Austin had a terrible seizure after this surgery and during they found a small colloid cyst that they removed, after another revision Austin's NS ended up putting 2 shunts in for Austin, it took a long time and 12 revisions total to reach the point where we all thought 2 shunt would work better for Austin's troubles, and It did work, and 5 years later the 2 shunts are doing perfectly well for Austin. 2nd opinions are great hard to figure out whom to go to, you may want to look into ENDOSCOPIC fenestration procedures, I have some website info on the favorite webs sites on the top that might help. Austin has had 2 different NS's second opinions and they both helped to direct us. I Called the Hydro assoc www.hydroassoc.org and they made suggestions to NS’s in our area, I also researched and asked my son NS for his opinion, he was more than happy for a 2nd opinion and both NS's talked and agreed on the surgeries for Austin, and we did stay with Austin’s regular NS in the long run; At that point and so many revisions later we all felt Austin was getting the best care and all of us were on the same page, yet not all NS like the idea of 2nd opinions it is a smart thing to do. I know how overwhelming this can all be my heart goes out to you and Kynzer.
Wishing Kynzer a smooth recovery and comfort to both of you
Deborah
Sorry for the length of this post and I hope it makes sense, a lot went on with Austin hard to explain ……

[Mom2HeathandKynzer]

Thanks for your reply I don't think our NS would be happy with us getting a second opinion...but I might be wrong on that. I know she does care for Kynzer...but it's just a feeling I have you know? Like we are at a stand still. Kynzer has had a shunt in his 4th. for 3 yrs. now and in those 3 years he's had well over 15 revisions and this is the second infection. I might find out that she is doing everything that any other NS would do...but then at least I would know...I just hate thinking maybe there is something better out there...this way I'll know.
Thanks again for the reply!! How is Austin doing at college?? And is one of his trapped ventricles the 4th? Because evidently the 4th ventricle comes with it's own set of challanges.

[Austinsmom]

Austin’s was in his 3rd vent, and with that cyst it was complicated, could you email or call your NS and ask about a fenestration, talk with the NS nurse, Also at the Hydro assoc they have a panel of NS’s they can present questions to, not sure if you will get answers by Wed's. Most NS's work ENDOSCOPICLY, Maybe your NS would be able to look into fenestrations to help, Sorry this has been so darn hard for Kynzer 32 is 31 times to many......
Austin is doing very good in most ways at college, he is going for EEG tech, and was voted the disabled student of the year and vice president of the spirit of abilities club (250 members) he is living on his own (a roommate with a family) yet his movement disorder is slowly progressing, which is very sad, but a walk in the park compared to the dark days of muli-shunt revisions...
Wishing you the help Kynzer needs
{{HUGS}}
Deborah

[DystoniaGal]

Was it Emily that had issues with the 4th vent???