I have had my same vp shunt since I was 6, Will I have to have it replaced

[jennifer]

I have had my same VP shunt since I was 6, I went in the hospital to have the tube lengthened and everything went well, Does anyone think I will have to have it revised again in life? I am now 22, any advice would help.

[Braindrain]

At some point, your shunt will probably need to be replaced. I had the
same shunt from the age of 2, to the age of 28 (1994). Then, it failed
and I needed a revision. I had another revision last December when the
one from '94 disconnected.

Some people have more frequent revisions and some people can go years
without a revision, the way I did.

It happens to everybody, sooner or later.:)

Hope this helps you!:)

[Spiritgal]

Hi Jennifer,

Wow, your shunt has staying power! I've just had my first full revision and my old shunt was 6.5 years old when it needed replacing...because I was overdraining. It's such a common procedure for us shuntees...the good thing is you get a brand new, functioning shunt which hopefully could last years and years. Probably you will need it replacing at some point in your life. But it sounds like you're doing just fine on the one you've got...aren't you considering college soon? You wouldn't be able to consider it with a faulty one!

[KathiDG]

Hi Jennifer -

Not suer if you caught some of my other posts, but I've had a shunt since I was 2 days old. The first time I had to have it replaced, I was 5 or 6. I turned 29 on May 6, and I had my 2nd revision just this past August. I'm still kinda trying to recover from that, I think, but the old shunt was about 22 yrs before it needed to be replaced. I'm not anticipating that this shunt will be my last either, if it is, great. But if not, I'll be happy with 5-10 yrs...if I can't get 20 yrs out if it... ha ha.

[Alexandria]

Is that very painful, Having the tube lengthened? My daughter is 2 and they said she will have to have that done some time. and how is your scar? Can they make the scar look neat and not all like chunky? My daughter was 3 days old when she had her shunt put in and we are not happy about the way the scar looks. It is small but it does not look like one clean cut, it was kind of chunky looking. Just wondering.

[LIZARD]

All of us who have active hydro will most certainly need more surgery at some point. Shunts are man-made and break down over time. I read recently that some 90% of shunts break down within 10 years, and the rest will likely follow eventually. There is usually calcification after 20-30 years, which is the shunt's way of "dying of old age." I am terrified of this happening to me (my current shunt is 26 yo), because this is something that can't be detected on an MRI. I can only hope I'll have classic symptoms so there won't be any doubt, but you never know with shunts. They make up their own rules. :rolleyes:


LIZARD :)

[jennifer]

Alexandria

You would be able to tell I have a scar but it really isn't that noticable, they could probably do some touching up it you asked. I would just do it if your daughter was asleep, since she is so young. I had my stiches taken out why I was awake and that hurt, but with you daughter being so young, I would have them do everything why she is asleep, thats the way she can't remember anything.

[Lemontree]

I've had my VP shunt now for nearly 29 years..the others, VA's didn't last as long.

One of my scars is kind of crazy looking...kind of jagged on my neck and prob. over 2 inches long. I think it was done during my last revision, or partial shunt removal..I vaguely remember at this point...I think Liz once wrote that they used to be a big more frenzied with their attempts at revisions . or something, and now they've refined their skills since the "dino" age when she and I had ours put in.

(My first shunt was implanted in the year 1969!)

I used to be kind of paranoid about my scar, but now I'm thinking, the reason behind it is the reason for me being here. Scars are part of your history...What's the big deal really? Just my two cents


Lemontree
age 39
Hydro diagnosed at 8 months of age

[Alexandria]

Jennifer OMG I think its disgusting to suggest putting a two year old "to sleep" just for simple things like taking stiches out!!! Oh and is this your answer for every kid to have plastic surgery to deal with stiches scars - WRONG - that isnt what plastic surgery is all about - I shudder to think about the implications of your response - geez.

When was the last time you had an anaesthetic? Maybe you dont realise / remember that you have to fast for eight hours, have premeds given then have a cannula inserted or mask over the nose and mouth for the anaesthetic to be given - no offence sweetie but THAT is very traumatic for little kids and no parent in their right mind would put their kid through that just so the child "wouldnt remember it." Um what happens later when the kid wakes up screaming in absolute panic and vomiting from the anaesthesia itself - do you have a quick little fix for that too??? I for one find your response for this one really very disturbing.

Alexandria - shunt tubing lengthening is done with a "full set revision" - both top and bottom - and usually only if there is problems with the existing one - ie blockage or infection. It just means that the bottom end of the shunt has a little extra tubing which slowly unravels with body growth - the surgery itself is like any other shunt surgery - cut in the head, cut in the tummy - and that is the painful bit - but kids are so amazing - they bounce back so quickly and I assure you there is no reason to fear it if it happens - oh and scars are proof of victory in battle - tummy scars stick out because the skin there stretches alot more - just think of it as a battle your daughter fought and won. :)

Thanks, I didn't realize they also go into the head again to lengthen the tube. I thought they would just enter through the stomach. and if the scar doesn't bother Arianna when she gets older well then it won't bother me either. It just seemed like it wasn't as neat as it could have been. My husband and I both thought it looked like her stomach was pieced back together. it kind of looks zig zagged......Oh well, she is alive and healthy and happy and that is really all that matters, I was just curious.

[AMBush]

I have not really heard of anyone just having lengenthing surgery alone without another reason for it - but its possible.


My daughter's was done when she was 8. At that time, she had a scant two inches of "extra" left in her tummy, and the NS advised that it be taken care of while she was healthy (hoping to avoid a malfunction or having to do a lengthening while she was otherwise compromised). We elected to have it done at the start of summer.

The NS made an incision at both top and bottom. The original tubing was left in place and new tubing inserted. The intent was to simply connect the new tubing to the existing shunt, however, the NS found that the shunt showed some deterioration, so he opted to replace that, too.

At the time that she was admitted for the lengthening, it was intended to be that and nothing more.

As I understand it, lengthenings are becoming increasingly unusual, as NS have found that they can insert lots of extra tubing in the abdomen. In my daughter's case, her original shunt was placed when she was very, very small (right around 3 pounds) and there was limited abdomenal area for extra tubing.

[KathiDG]

Yep -- my pediatric neurosurgeon, the 1st time I had a revision, at 5 yrs old when the tube broke in my neck and the CSF started to pool in my neck, said he put in PLENTY of tubing at that time to allow for growth...to this day, the old shunt tube is still comfortably curled up in my abdomen...hmmm, now that I have the programmable VP, there are 2 tubes curled up in there....uh oh....DUELING SHUNTS??? he he he... :D

[Nat Hyland]

you are very fortunate to have only had one revision to this point! I think that if you have hydro, you need to take for a given that you will need another operation at some point in the future. I had my first revision at age three, and then not again till I was thirteen (when I had two in 8 months) and three more after age 21. It has now been 6 years since my last one. I have never had a problem with the length of tubing though.

Everyone is different though, and it is not possible to predict if or when you will need another revision. You just have to keep your fingers crossed that you can go for as long as possible without one :D !

'Nat.

[jennifer]

Thanks Nat for the advise.

[MegNJaxMom]

Thanks, I didn't realize they also go into the head again to lengthen the tube. I thought they would just enter through the stomach. and if the scar doesn't bother Arianna when she gets older well then it won't bother me either. It just seemed like it wasn't as neat as it could have been. My husband and I both thought it looked like her stomach was pieced back together. it kind of looks zig zagged......Oh well, she is alive and healthy and happy and that is really all that matters, I was just curious.

Megan's scars look so much neater than my c-section scars! I have a huge, crooked, puckered T shaped scar on my tummy. I never wanted to be a bikini model, but that is TOTALLY out now!:p My husband and I joke that in med school, the surgeons go through a "How to cut crooked and sew 'em back together funny" course. But Megs NS was pretty good and straight!

[MegNJaxMom]

As I understand it, lengthenings are becoming increasingly unusual, as NS have found that they can insert lots of extra tubing in the abdomen. In my daughter's case, her original shunt was placed when she was very, very small (right around 3 pounds) and there was limited abdomenal area for extra tubing.

Megs has quite the "coil" in her belly to grow with her... as long as this TWO year old shunt keeps on tickin'!

[davidmic61]

My "battle wounds" are used by me to illustrate to others the path of my pipeline. I explain "the shunt is here, the tube goes past this scar, and drains in my abdominal cavity by this scar". Just like any journey, it is better understood with a map. The scars (slightly visible) on the front of my head allow me to explain sub-dural hematomas and thier impact.