Hello everyone. After my surgery I had some complications, one of them was hydrocephalus so they put a shut in my brain. This shunt is not ajustable. Now every time I sneeze or cough or laugh out loud the pain is unbearable. And this is just a couple of things, I don’t want to overload this board with all my symptoms! Do any of you experience this issues? Thank you all in advance!
I really hope someone with a shunt can answer this. It’s okay to discuss all your concerns, some of us may be able to help with them…it’s not overloading at all
I’m a bit saddened that no one with a shunt has replied…have you contacted your surgeon? I added the word “shunt” to your title to see if our members will respond Here’s a link to another site, maybe it can help? https://www.hydroassoc.org/complications-of-shunt-systems/
Hello Moltroub, I’ve seen my doctor twice after my surgery and it’s always overwhelming for me because of the amount of questions, the time I have with him and all the forms I always have for him to fill up. Thank you for the link, will try right away.
I remember those days…they’re not far behind me. Perhaps you have a patient portal you can use to email your doctor. With mine, one of the Triage RNs reads it and takes it to either the doctor or the assistant who then sometimes gets the question to the doctor. Someone always gets back to me that same day, if I’m early enough to send it. The other thing to try, is just to call in to them. Again I get the Triage RN who may make some suggestions but then always gets it to the NP or Dr. Wolfe. Please hang in there!
Firstly, thanks Moltroub for altering the title, I would have missed this completely otherwise.
I too have a shunt, well, I actually have 2, the first fractured (the tubing broke) and they had to replace the tubing. But in doing so the valve died, so they replaced the valve, the valve developed another fault and then they decided to replace the whole thing. This time inserting an adjustable valve. This has caused a whole plethora of symptoms. The broken tubing is still floating around internally and is now causing its own issues. As Moltroub states “…It’s okay to discuss all your concerns, some of us may be able to help with them…it’s not overloading at all” in fact, I’d go one step further, the more detail, the better.
You state “…every time I sneeze or cough or laugh out loud the pain is unbearable…”
Where? What sort of pain? Is it a headache type pain or a pain along the length of the shunt? Which type of shunt do you have? ie VP or VA? Mine is a VP. A shunt is a foreign object within the body, it’s a couple of pieces of plastic and there can be a few issues that can arise. An obvious one is pressure headaches. We can develop both low and high pressure headaches. Here’s a bit of the science for you.
Within the skull there needs to be a very fine balance between brain matter, blood and CSF (Cerebral Spinal Fluid). If one of these is out of balance you will have issues.
Obviously, the first issue is too much CSF which causes hydrocephalus or water on the brain. With a shunt already being in situ, too much fluid can be caused by a blockage in the shunt tubing or an issue with the valve. There are a couple of tests they can do to check the flow.
The second issue is not enough CSF which causes a condition called ‘slit ventricle syndrome’. I have had both of these occur and a cough or a sneeze made me feel like my head was going to explode out through my eyeballs. The resulting headache from a sneeze can last for hours. Honestly, just unbelievably excruciating, throbbing pain.
Another issue can be what is known as ‘Adhesion’ where the shunt tubing can stick to the body internally, then when we move this can pull at the adhesion feeling like something being ripped inside of us. There can also be another type of adhesion where the distal end (Peritoneal end for a VP shunt) can become blocked by the body identifying a foreign object and building a layer over the end of the tube, stopping the flow of CSF. A cough or a sneeze can tighten everything and pull on these adhesions.
High and low pressure issues can be seen via a CT or an MRI scan
Another problem I had initially was when I exerted myself. I had a friend come to visit and she cracked a joke and I laughed. Upon doing so I heard a noise like someone drinking milk through a straw. I was shocked to say the least “WTF was that?” but nobody else could hear it. I spoke to the surgeon and he explained that in doing the craniotomy they broke the seal that holds the fluid within my skull and the noise was the fluid squirting out of the gaps around the piece of skull they removed and overtime, as the skull heals and seals again, this issue would fix itself (and it has).
I hope that this may assist you in trying to identify the problem for yourself, but I must say here, I am a patient and not a dr. If your symptoms do not settle I’d recommend writing a list of questions for your drs so that you are not overwhelmed by the appointments but get the answers you are looking for, for your specific questions. Some dr’s can be a little (a lot) dismissive. In fact I had a dr tell me ‘We operated, we fixed’ when things were not ‘fixed’ at all. DO NOT let them minimise your concerns. Your pcp should be able to send you for a CT scan in the first instance and this should identify any initial concerns. If the CT is clear then you may need to see a neuro for further investigations. There is a test where they can inject a dye into the valve and view the entire shunt train, the whole length, but this is usually ordered by a neuro and not a pcp.
Please do let us know how you get on.
Merl from the Moderator Support Team
Thanks Merl! I’ve just learned a lot about shunts. Today is going to be a great day!
Thank you Merl for your message and Moltroub for adding to my topic! You both are great! Iam learning a lot here!
“…I am learning a lot here!”
And that’s what we are here for, a sharing of information from one patient to another. Some medicos like to treat us like mushrooms ie Keep you in the dark and feed you up on bulls#@%, with the theory being the less you know the less you stress. But this could not be further from the truth. When my journey started I was kept in the dark and with every ache, every pain I was ready to hit the panic button. Over time I have learnt which aches and which pains I need to act upon and which I need to simply mellow with. Very little of this knowledge/information was provided by the medicos, it really has been a ‘watch and learn’ scenario. If by me sharing my learnt knowledge it assists another on this god damn awful journey, all the better for everyone involved, IMHO anyway. As I often say “…we know because we live it too” and who better to learn from than those going through something similar.
Merl from the Moderator Support Team
Amen to that…
Following on your message I have a Vp shunt and luckily I haven’t have any problems with but I get those pressure headaches when I cough or sneeze. I just pray that I don’t get a cold or anything related to that.
I have a Shunt and This has been Great info for me. I have times where it feels like where the shunt is feels tight and sometimes it feels a little painful.It is very hard to know what is normal. I have to get a MRI which I hate so much. I had one a few months back and the techs acted like I could not get a MRI because of the shunt. Crazy cause we all know we can. I just have to see my doctor to make sure it is on the right setting afterwards. For a Year after my Aneurysm I did not want to talk about it or think about it and it felt like every time I turned around something else was happening. I joined this Group and then I couldn’t say anything or even read anything. I just wanted whatever normal is to come back. To not to be afraid over a headache or a upset stomach. To have my Kids not worry about me…I’m Blessed I’m here.And I really don’t know where I was going with this. That happens alot But if anybody understands I’m thinking ya’ll would.
“…the techs acted like I could not get a MRI because of the shunt…”
It’s interesting you should say this Marjorie because I was told the same thing post surgery, but then the neurologist ordered one. Some radiologists say ‘No, you can’t’ others say ‘Yes, you can’ and like you I had to have a dr check the settings of the magnetic valve after the scan. I have once been told no because there was no dr to check the settings, but it seems they certainly can be done. Some dr’s just send me for a CT scan and if that’s OK we leave it at that, if any further follow up is required they refer me onto a neuro.
“It’s very hard to know what normal is…”
Ohh, I could not agree more. Some days I’m up, some days I’m down. There doesn’t seem to be a ‘normal’ amongst it all. Trying to explain this to somebody outside of this realm and I get looks of ‘WTF, that’s not normal’ Some people talk of a ‘New normal’ but for me things fluctuate so massively it’s like each day is a ‘New normal’ and that makes things real difficult to manage around. I also find, as Mimi says, a cough or a sneeze can turn a good day suddenly into a day from hell. I simply can never tell.
This can be one hell of a rollercoaster and I often think “stop this ride, I want to get off” If you ever find ‘Normal’ Please tell me how.
Merl from the Moderator Support Team
How old is your shunt? When you say not adjustable what do you mean? I’ve had a shunt in my head for 8 years. It is adjustable, which for me means the valve opening can be set to a certain degree to allow a specific amount of CSF through it. So, no over or under draining. I can go through airport security and have an MRI. I still get a few pangs which me remind me the shunt is there. However, it does not hurt when I cough, sneeze or laugh. My shunt is by Sophysa. Please ask me any questions you might have.
Hi Alice, my shunt is a VP (ventriculoperitoneal) shunt and was put in me in January this year. I had hydrocephalus as a complication to a brain aneurysm. I asked my neurosurgeon and he said my shunt is not ajustable, meaning they can’t adjust the amount of CSF . I can have MRI and go through the airports no problems. It does feel tight on my skull and as a result I do touch a lot my head, lol For me it hurts still and the headaches haven’t stopped. They said I will have my days and I guess lately it’s been one of those many days.
thank you Alice
If you ever find ‘Normal’ Please tell me how. And if you find it first Please tell me!
I hate the very thought of catching a cold or the flu. damn even when the weather changes can be a Nightmare…
Oh yeah and it’s a MRI or a Angiogram… EEEkkkk!
Well the doc that says no you can’t (feel pain) is right as is the one who says you can. There are no pain receptors in the brain itself. But he meninges (coverings around the brain), periosteum (coverings on the bones), and the scalp all have pain receptors. Surgery can be done on the brain and technically the brain does not feel that pain. With that said, the brain is the tool we use to detect pain. There is a lot of stuff in a very small place and unlike moving box full of dishes wrapped in newspaper to keep them from contacting each other. All the bits an piece in the skull pretty much contact each other including those that do feel pain and those that can’t