Help / Advice?

Hi
Would anyone who has a shunt / pipeline in place please confirm if the swelling does go down please? I can feel it on / in my skull & wonder if it does actually go down eventually?
Any advice would be great
Lucy

Lucy,

Contact your surgeon. I don’t have a shunt. But with your vision issues you shared in another post, this concerns me that perhaps the shunt is not working quite right. I am no medical expert, by any means.

I did try to research and didn’t come up with anything but care before and after. One of the things they all said was vision issues could be a complication of the shunt. I will keep looking for you. This is what I’ve found so far. https://www.fda.gov/medical-devices/cerebral-spinal-fluid-csf-shunt-systems/risks-csf-shunts

All the best,
Moltroub

Thank you for advice I have a forthcoming MRI scan so will certainly get answers then.
Much appreciated again.
Lucy

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HI Lucy,
I have a VP shunt between my scalp and my skull on the left side of my head. In order to understand why you can feel the shunt, I’ve attached a photo of my shunt that I found on the Manufacturer’s website. I’ve also seen this shunt in person when I met with a Rep a few years ago. There is a valve that regulates the flow of cerebral spinal fluid and a reservoir or antechamber to keep the CSF from flowing back into your brain. It’s lumpy for sure, but it does an important job. If you feel your shunt may not be operating properly, contact your neurosurgeon. There is a setting they have established for you that regulates the amount of fluid that drains specifically for you. They can check the valve opening because it opens and closes by a magnet. I’ve had mine checked numerous times.
Screen Shot 2020-10-18 at 12.59.27 PM

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Hey Lucy,
In another post you say you have a stent (pipeline), but here you state you have a shunt. These are 2 different devices and I’ll ‘try’ to explain them both in VERY basic terms.

A stent is a tube placed inside of a vein or an artery, often they are used to reinforce a weakness in the wall of the vein/artery. Depending on where the weakness is, they are often inserted via the groin region and pushed up to the area the reinforcement is required.

Now, a shunt is a totally different thing. A neurosurgical shunt is used to divert CSF when there is an issue with the normal flow of CSF. There are a couple of differing types of shunts, the primary 2 being a VP (Ventricular Peritoneal) shunt and a VA (Ventricular Atrium) shunt. There are 3 parts to a shunt, the proximal tube (the tube in the brain), a valve and the distal tube to either the peritoneal (Intestinal cavity) or the atrium of the heart.

I have a VP shunt (or as the dr’s often refer to it as ‘an appliance’). When the dr’s first referred to it as “an appliance” I had visions of them securing a toaster to the side of my head :roll_eyes: :grinning:

Now you state you can ‘feel it on / in my skull’, the valve and distal end of the shunt are placed just under the skin and can be easily felt. The brain itself has no pain receptors, it merely processes pain signals from other receptors in the body but the brain cannot feel pain. I questioned this as OHH MAN!! the headaches certainly felt like it was my brain that was going to explode. The brain has a membrane covering it called the meninges and it does contain pain receptors. When they insert a shunt they pass through the meninges and this can disturb those pain receptors.

Because the area along the length (or train) of the shunt has been disturbed, the body has a natural inflammatory reaction, so there can be some swelling, but this does eventually settle. I can still feel the valve and the tubing when I touch it, but the initial swelling has gone.

One of the issues with shunts is that they are plastic and they do deteriorate over time. They can have blockages, the valve can fail and the tubing can break. I have had all 3 of these occur over the years. A blockage can be cleared by the neuros injecting fluid into the valve, flushing it out. But if that does not clear it a whole new shunt maybe required.
The valve can fail. Within our skulls there needs to be a balance of brain matter, blood and CSF. The valve regulates the CSF pressure in our skulls. Too high or too low and we can become symptomatic. There are 2 types of valves, a set or fixed pressure valve and an adjustable pressure valve. If the valve completely blocks or fails, it can be replaced.
The plastic tubing is flexible, BUT like any man made tubing, it can deteriorate. Repeated flexing can break or fracture the tube and this can affect the drainage. In some cases the particular tube can be replaced solely, but other times it can be preferable to replace the whole device.

There are a few tests that can be conducted to check the functionality of the shunt system. CT and MRI are two such tests, but there is also another known as a shuntogram, where they inject a radioactive dye into the valve reservoir, then depress the reservoir and then follow the dye via a scan to see where the flow goes.

I hope this answers some of your questions. Now, I am a patient, not a Dr and if you have concerns as Moltroub states “Contact your surgeon.”

Merl from the Moderator Support Team

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Thank you Merl. Mind is definitely a VP shunt used to regulate the CSF. It is not painful although I can feel it. It was more swollen after surgery so this has subsided & following your advice it is likely that I will always feel something. My hair is starting to grow back so it is not as noticeable. I am feeling well & functioning absolutely fine which is positive but I continue to feel slightly disorientated which is more obvious when I am moving. My eyesight is fine having visited opticians last week. I am guessing that it is a waiting game for my brain to fully realign and the nerves settle? I am 8 weeks post discharge from hospital. 9 weeks post Shunt surgery and 10weeks post aneurysm surgery. I did have 8 surgeries so I know it is unlikely that anyone will have gone through exactly the same as me to compare although I greatly welcome any advice & support from this community group.
This is helping me feel less isolated in my recovery & I am very grateful for all replies.
Kind regards
Lucy

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Hey Lucy,
“My hair is starting to grow back so it is not as noticeable.” I have long hair and when they have operated they’ve shaved 1/2 my head, so I’ve had to cut it all off and started again. When they did the craniotomy, they shaved the lot and luckily it all grew back covering all the holes. But now it’s receding rather quickly now and all of those holes are becoming more noticeable, so I wear a hat. Any phrenologist who tries to read my skull is in for one hell of a violent novel :grinning:

8 surgeries is a lot to have in one visit. I’ve had 6 neurosurgeries in total, over 25yrs. Often they like to wait ‘a recovery period’ before doing another procedure, but if it’s deemed necessary, then they’ll ‘rinse and repeat’ as many times as is needed. In having all 8 in one shot it can make it even more difficult to pinpoint any cause/effect with symptoms ie was it the tumour or was it the fluid or was it the shunt or was it…???
My last major neurosurgery was back in 2013 and I still have some symptoms today and they fluctuate something terrible. As I’ve said to others before “Some days I can leap a tall building in a single bound (OK, so a bit of an exaggeration) but then some days I’m lucky to be able to crawl out of bed. I can never tell what the day will bring”.

Merl from the Modsupport Team

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Hello Lucy!
2 years ago, I had an erupted aneurism and one of my complications was hydrocephalus, as a result, they put a VP shunt just like yours to regulate the CFS but on the right side of my head. I was so worry about the size of that thing in my head but let me tell you, it has gone down a lot, not completely but a lot, I feel it, same like the tubes going down toward my neck but it’s something you learn to live with it! It’s like everything else. Just a little thing in a world of so many big worries! You will come not to notice, you will see. Patience is something I have learn out of all this! Be strong, be patient, we are here if you need advise. Sorry it took me his long to answer. Thank you Moltroub for your message!

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Thank you so much for your reply & so lovely to hear that you recovered well following same procedure :blush:
Lucy

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Ah thank you so much for your reply Caperucita. That is so reassuring & you’re right, I’m sure it is something I will just get used to. I think when I lie my head on right side & I feel it, it can be a stark reminder that it is there. However I try to look at it as an aid which many many people depend on the remain I dependant. Like a walking aid, heating aid etc. This helps reduce my anxieties. Big step tomorrow for me as I return to work #yay! Slow phased return but a teeny bit of normality for me whilst we all continue to cope with the global pandemic.
Thank you again xx

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@Lucy I am so happy you get to go back to work! Good for you!

Happy Dance,
Moltroub

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