Shunt moved from place?

[Cristina]

Hey everyone,

Maria's been experiencing some weird situations with her shunt lately and we've become pretty concerned about what it all could mean.

First, there's been some swelling around the shunt.The zone is pretty soft, so I'm thinking it's CSF. The first couple of times this happened, it lasted for about 5-10 minutes but today it took almost an hour for it to go back to it's initial size. The NS told us not to worry and also that we can expect it to happen again but...not to worry.

Secondly, yesterday, while touching her shunt I realized it didn't feel right. After my husband took a look at it, we both realized that it wasn't in the same spot anymore. It feels as if it's descended, and now a thin tube is lying where the actual device used to. It doesn't feel broken, just misplaced.
What could this mean, what could happen now? Does the swelling have anything to do with the shunt movement? When it swelled the first time, it still seemed to be in it's normal spot.

I don't know if any of this makes sense, but if anyone has experienced shunt movement, pls share. M doesn't seem to be symptomatic, no fever or vomiting, just a little agitated but she's also teething now.

Thx!!!

[Cristina]

I also posted a couple of pictures with the swelling.

Take a look,maybe it looks familiar to some of you.

[Dodger67]

The valve unit of the shunt has shifted.
CSF is leaking into the surrounding area.

Have you called the neurosurgeon yet?

[Cristina]

We did talk to the NS and he's expecting us tomorrow morning.

Is that bad? How bad?

[ainemc]

Hope all goes well tomorrow Cristina, keep us updated :-) Sorry, I don't know anything about shunt misplacement, i took a look at your pics and Caitlin's shunt looks swollen like that, always has done, and the neuro said its fine like that. Will be thinking of you :-)

[Summer25]

Could be a shunt malfunction. However, I just recently noticed mine has moved down further and I really have had no issues. Mine tend to move down every few years with no problems. It also could be an intermittent type malfunction. I do that sometimes, but then they stop and everything is ok again.

[Lifeisgood]

Hi Cristina,
I hope that things go well tomorrow. Bring the pictures with you because Murphy's Law states that everything will look normal again tomorrow, and this way you can actually show your doc. I hope it is something that is easily explained and fixed!

[LillyPie]

Lillys first shunt malfunctioned. The tubing became blocked and caused enough pressure to completely push out the tubing in her ventricles, and because there was a hole that they drilled to place the shunt, the extra CSF from her ventricles leaked from thereinstead of building up, and caused what you are explaining, the CSFwas built up around her shunt. I placed a couple calls the the NS and I also was told that swelling was "normal" finaly I insisted that she be seen and they were surprised by the amount of fluid under the skin, she had her shunt replaced the next day. It sounds to me like shunt malfunction, if something came out of place up there the fluid "can" sometimes find another place to drain, since there is a hole drilled through. I know this from experience. Good luck at your appt tomorrow.

[Cristina]

Thank you all for your answers, here's what happened today at our appt.

We took some tests and the NS final conclusion was we wait.
Initially, he wanted to operate her tomorrow(it was obvious that the shunt had descended a couple cm) before it moves more than it already has, but after he saw the result of the tomography, he noticed that the ventricle in which the tube is put, is a bit more narrow than the other one(maybe draining too fast, have no idea) and surgery with one such ventricle could become complicated, so he said it would be better to wait and see what happens. If the shunt falls completely out of the ventricle(the tomography showed it was still in, not much though, and that's probably why all the CSF built up around that area) there are 2 possibilities: either the CSF will drain normally without the shunt, either the hydro will develop again.

We are again in that pregnancy "wait and see"situation I remember and that I dread so much.

Do you have any idea what the chances are she wouldn't need her shunt anymore?

[ainemc]

I always thought a shunt was always needed once it was placed. But i could be wrong, its just what ive always assumed :)
Hope somebody else can help, i just got your fb message, i hadn't seen the post here..the waiting and seeing is horrible! But when we thought Caitlin's shunt had blocked for the 3rd time a couple of weeks ago we had to wait and see too because her fonatelle was full so it was a matter of waiting to see if it would go down again or if the ventricles would start to enlarge. Her fonatelle has stopped bulging so, so far so good :)
I hope its the same for Maria :)

[kali]

The same kind of swelling happened to my son last sept. swelling and the shunt looking like it was in a different place. The swelling went away within a few hours. We were told to wait and see what happens, now almost 10 months later we are still waiting. The swelling never came back, and the shunt still looks misplaced. The doctor thinks it looks like he isnt in need of it anymore.

[Cristina]

Thx Aine for being as supportive as always. My best to little C.

Very interesting Kali! But did the swelling happen only once? Cause with Maria it either happens 2-3 times a day either at all for about a week. And based on the tomography, the shunt is still inside the ventricle by a bit. I heard that not needing a shunt is a small possibility but how can you tell?

[rachiebaby]

I think the only way you can tell if the shunt is not needed is if something happens that prevents the shunt from operating normally and there are no bad symptoms. I'm pretty sure my tube is disconnected at the neck and there is nothing wrong as far as I can tell

[Bev]

I've been having what feels like a pressure headache for a while now. I went to my dr's thinking the worst and she said its nothing serious but she is sending me for a CT scan next month. I just felt my shunt and it feels like it has moved up, is this normal? My drs said when I was younger that once I turned 15 I would probably no longer need my shunt, is the fact that I think it has moved up, something to worry about? I am 24 now and have had no problems with my shunt since I was 10 I think was the last time I had it replaced, would it be causing me problems now? I am also concerned that I will die before I get it checked out (I am always thinking the worst) any reassurance would be great, I am really scared about this and don't know what to do anymore. It is in the same place it has always been but it has just moved up (atleast it feels like it has). I was worried that it was a tumor or an aneurysm but my dr said not to worry and that she doesnt even think its my shunt but wants to just check things out. It wasnt until tonight that I felt like it had moved up. Again any help and reassurance would be great.

[kali]

Hi Christina, the swelling happened just once but stayed for hours it was scary because the swelling was on one side of his face ,head and around his eye. But it all went away and hasn't come back, and theres no symptoms of vomiting or headaches. He is 11 years old now and that is usually the age a shunt should be replaced. he has had the same shunt since birth. So its still wait and see for us.
HI Bev......hugggggggsssss try not to think the worst. get it checked out so that you will stop worrying. If the only sign you have is a headache its probably not your shunt. maybe eye strain or stress. hugggssssBev

[Summer25]

I've been having what feels like a pressure headache for a while now. I went to my dr's thinking the worst and she said its nothing serious but she is sending me for a CT scan next month. I just felt my shunt and it feels like it has moved up, is this normal? My drs said when I was younger that once I turned 15 I would probably no longer need my shunt, is the fact that I think it has moved up, something to worry about? I am 24 now and have had no problems with my shunt since I was 10 I think was the last time I had it replaced, would it be causing me problems now? I am also concerned that I will die before I get it checked out (I am always thinking the worst) any reassurance would be great, I am really scared about this and don't know what to do anymore. It is in the same place it has always been but it has just moved up (atleast it feels like it has). I was worried that it was a tumor or an aneurysm but my dr said not to worry and that she doesnt even think its my shunt but wants to just check things out. It wasnt until tonight that I felt like it had moved up. Again any help and reassurance would be great.

Was the doctor you saw your neurologist or neurosurgeon? If not, then I would take what she said with a grain of salt. You can't tell if the shunt is ok just by looking at it. You need a CT scan which if it was one of the two doctors they would have done ASAP. It definitely could be the shunt causing problems. I am 26 and haven't had any revisions since the age of 12. So, we are alike in that aspect. I personally think that a doctor has no right to say "Well you haven't had a shunt revision in X years, so you don't need your shunt anymore." Granted, it does happen, but not often. You can't know if the shunt isn't working unless you have routine CT scans every year that says "Ok the shunt isn't working and she/he is acting just fine." At the age of 10 I was told the same thing "Well it looks like your shunt isn't working, so we will just leave it alone." Three months later I went into full shunt malfunction symptoms. The headaches that you are having could also be a chiari symptom which needs to be looked at with an MRI. I personally would seek a 2nd opinion.

[LillyPie]

In Lillys case the swelling never went away, just kept getting bigger and bigger...

[Dodger67]

What do you mean by "never" - is it still swollen now?

[LillyPie]

Swollen until shunt revision. Sorry about that.

[Dodger67]

Thats what I thought you meant, but please take care with statements like that - don't scare the newbies!

[Bev]

The doctor that told me my shunt probably wouldnt work after 15 was a neurosurgeon. I am just really scared about what it could be and I am driving people (including myself) nuts thinking its cancer...I also dont want to have another surgery for anything. My family doctor is the one that set up the CT, she said she doesnt think its anything but just to be on the safe side, and I figure (could be wrong) but i figure that if it was anything important she would send me right away.

[Bev]

Ok I just read the symptoms of Chiari malformation and now I am scared. Is this fatal or can it be fixed? dying has been one of the things I have been so scared about. Please tell me anything you can.

[Bev]

ok im sorry to keep posting, but Ive been reading more , is Hydrocephalus the same thing? Just a different name? in that case, Ive already got Hydrocephalus, I have since birth.

[Summer25]

Hydro and chiari are two separate things. Chiari is when the back of the brain called the cerebellum pushes on the brain stem. Hydro is when the ventricles fill up with cerebral spinal fluid. There is a surgery for chiari if the symptoms get bad enough, but it is not a cure and can end up doing more harm then good in some people.

[Bev]

After I posted that I read more and yea I realize that they are 2 different things. My concern is not making it too the CT scan (dying before the time comes). How does the operation sometimes do more harm then good, just trying to find as much out about this as I can. Any more help would be appreciated.

[Dodger67]

Bev
Please please try to understand that death is very very very far down the list of possible outcomes.
About chiari - for an overwhelming majority of us it has absolutely no effect at all and for most of those that it does affect the consequences are minor. Then for the minority of the minority who do have significant problems, a surgical solution works well.
About hydrocephalus - when viewed over an entire lifetime, hydrocephalus is a minor bother, even trivial, for most.

[Summer25]

After I posted that I read more and yea I realize that they are 2 different things. My concern is not making it too the CT scan (dying before the time comes). How does the operation sometimes do more harm then good, just trying to find as much out about this as I can. Any more help would be appreciated.

The chiari surgery isn't a cure. So with that comes the fact that some of the time the symptoms that you had don't go away. Or it can cause more symptoms to arise. I don't see it a lot in people that have spina bifida. I do see it a lot in people that just have chiari and end up having the surgery. But don't worry about it. Most of us don't ever get symptoms. If we do they try non surgical options first. Surgery is always a last resort.

[Bev]

Thank you guys for reassuring me that things will be ok. This headache is just annoying. I made the dumb mistake of talking to my Ex boyfriend online because my current boyfriend wasnt home from work yet, and my Ex told me that I was going to die. I thought he would be mature enough to talk me through this (he also has spina bifida). So are the chances that it IS chiari small? Some of you have said that surgery is not a cure, how rare is it that it fixes chiari? Or am I stuck with these symptoms? Thanks again for any help, and the help already given.

[Summer25]

If you are having headaches then the first thing you need to do is have a CT to rule out shunt malfunction. Don't worry about it being chiari. If it is, then there are ways to manage it and the symptoms.

[Bev]

I am set up to have a CT on July 21st, Im just going away for a few days before that and I would like to feel better for those few days lol.

[Bev]

Do you guys think I will be ok until the 21st? That is the soonest they could get me in, I am assuming if my dr thought it was anything serious she would have tried to get me in sooner??

[LisaJoy]

I'm sure you'll be fine if your symptoms are primarily annoying. If they change -- if you get a headache so bad that it makes you nauseous, or if you have dizzy spells, you should just go to the emergency dept.

[Bev]

K so I have my CT scan next week finally, and ive been thinking alot about what could be wrong, my Boyfriend thinks it could possibly be my shunt, (this is the first he has said anything about it being that) I am scared about surgery, havent had it since I was 10 or younger (I am now 24). Sometimes my head doesnt hurt at all sometimes its only in spots and sometimes its just pressure, does this sound like a shunt issue? If it is, are there any other solutions other than an operation? Any help would he great. I am going away for the weekend and I leave on thursday and would like to have a good time and hope that this weekend is one of those "no headache" times. Please tell me anything you can and hopefully I will calm down. Thanks again for any help possible, I am so scared (and always have been) of surgery.

[Bev]

So I went for my CT, they didn't find anything, I dont know if this is a good thing or not. I'm relieved that nothing is wrong BUT, whats causing my headaches? Would a CT find things like Chiari and CSF leak? I'm not quite sure what a CSF leak is but I read in another post something about it and I was just concerned this could be me, but would a CT find that? I dont so much get headaches anymore its more of a feeling of pressure occasionally. We are getting humid weather right now so I dont know if it is caused by that or not, but any help I could get would be awesome.. Thanks so much.

[Summer25]

A CT usually wouldn't find chiari. I don't think it would see a CSF leak either, but I could be wrong. I know when they do a CT to look at my shunt it never mentions chiari though.

[Bev]

I have a shunt, wouldnt that prevent a CSF leak?

[Lifeisgood]

Going by my memory here, the conversations about CSF leaks on this forum have all been in conjunction with spinal surgery and typically happens very quickly (within hours to days) of the surgery. CSF leaks from the surgical site and causes headaches. I do not know if there are other causes of CSF leaks. There are many benign causes of headaches. I had chronic headaches for years, but one day they just went away. It stunk while I was in the midst of it, but then it suddenly got better all on its own.

[Summer25]

I have a shunt, wouldnt that prevent a CSF leak?

A CSF leak usually happens after a surgery at some part of the incision site.

[dahliafaolan]

To answer your question, CSF is cerebrospinal fluid. It's the fluid that bathes the brain and the spinal cord and keep both from swelling up. I'm not sure if a CT scan would show a CSF leak, but I know for sure an MRI would. So I would request a MRI from your doctor just to rule that out too.

To answer your other question, it would depend on where the leak was. You can get a CSF leak anywhere along the brain or spinal cord, but usually there has to have been some injury to the meninges or the protective tissues that surround the spinal cord. If the leak was in the brain, then the shunt might take care of that. But if the leak was somewhere lower, like mine was near the tailbone, it won't. Just be on the look out for any new symptoms. But if you have any loss in sensation or trouble breathing, call your neurosurgeon pronto and get to a hospital!

[Bev]

Ok, well I havent had any injury or surgery recently so I'm sure thats not it. My headaches arent quite as bad as they were so maybe it'll get better. Thanks guys.

[Lifeisgood]

Hang in there Bev!

[Bev]

So do I just not do anything about it? It has gotten better and I figure (tell me if im wrong) that if it was serious it would just get worse).

[Bev]

So do I just not do anything about it? It has gotten better and I figure (tell me if im wrong) that if it was serious it would just get worse).


Ok so I went for my CT and they called me and said there was nothing wrong but that they would try to find another set of CT results from when I was younger and I got a call this morning (after almost 3 months) and I have an appointment with a neurosurgeon because they said they think I have enlarged ventricles, is this in my Brain?! I am FREAKING OUT!! but they didn't find another set of CTs from when I was younger so how do they know this? I dont want to die and I am so scared. Anything anyone can tell me on this topic would be great, I cant think straight or do anything, I have never felt so scared in my life!!

[LisaJoy]

Yes, your ventricles are in your brain. "Enlarged ventricles" is what happens with hydrocephalus. I'm assuming you don't have a shunt -- my guess is that you probably always had mild hydrocephalus that was too mild to put you at risk, so they didn't give you a shunt. What looks "enlarged" to them could simply be your normal -- that's why they wanted to find your old CTs for comparison. Since they can't find them, the only option is to be evaluated by a neurosurgeon as a precaution.

I really don't think you should be freaking out -- just take a deep breath and calm down. If it was an emergency, they wouldn't have puttered around for 3 months trying to find old CTs for a comparison. You would have already seen a neurosurgeon by now. So it must be borderline normal.

When's your appointment? If they don't have you in a neurosurgeon's office TODAY, then it's not an emergency.

I'm not saying don't worry, that would be silly. Of course you're worried. I'm saying don't panic. And please do keep us up to date!

[Bev]

I do have a shunt... thats why I am worried. My appointment is on the 21st, I am so scared, I thought I was done with these operations.

[jellolegs23]

Could your headaches possibly be Migraines?

[LisaJoy]

Oops, sorry -- I should have gone back to the old posts! I'm sorry you're having to go through this.

[Bev]

Nope they arent Migraines, they arent that bad anymore actually just some pains now and then but really nothing worrying me anymore. I had just started to get over this and then it gets brought back up again.

My whole family is wondering why after 2 months they decide something could be wrong (they called me at the end of July with the CT results and said nothing was wrong).

My Boyfriend and my Mom and convinced I dont need surgery, my mom said that people with Hydrocephalus have enlarged ventricles anyways...so im not sure, anyways my question was, why a Neurosurgeon and not just a neurologist? Can anyone explain this to me, this is mainly what has me concerned.

[LisaJoy]

I don't think neurologists typically treat hydrocephalus because it is a "surgical" condition. That doesn't mean it always requires surgery -- it just means that, because it is a surgical condition, neurologists don't see much of it and so aren't in as good a position to evaluate it. I think you should wait until you see your neurosurgeon and find out what s/he has to say. It may very well be as your mother predicts, but with all due respect, your boyfriend and your mom are not in a position to make that call.

[Bev]

Thank you for clearing the difference up between the 2 doctors. I realize my Boyfriend and Mom arent in the position to make the call they are just trying to comfort me and make me think positively, When I hear news like this I freak out and I needed to be calmed down..lol. My mom never lets me down though.

[LisaJoy]

Boyfriends and moms are great for being the voice of reason and calmness! Definitely listen to them for that. :)

[Bev]

I am!! and neither one of them has ever let me down so I really hope they are right. I know they just dont like seeing me like this. I am so scared. My mom said IF i had to have surgery for my shunt that it is already there so all they would have to do is put another one attached the the valve I already have so thats good I guess. I guess all I can do is wait to see what happens.

[Summer25]

Don't worry too much. Shunt surgeries may be in the brain, but they are the easiest surgery I have ever had. In and out in 2 days even with me and my issues after. I always have to have two revisions in two days. I am weird. Almost no pain what so ever. If it does happen, you will be just fine.