Hi, everyone! I’m new to this group and wondered if anyone who has a VP shunt has ever had pain from the tubing on their right side? I’ve been having terrible pain off and on for the past year. My gallbladder has been ruled out and I’ve come across articles about shunt tube calcification and it seems like that might be a possibility?
Hi, I am new to this group too. I am sorry I have no knowledge about the VP shunt! Hope other people will be able to help.
I need help badly right now from any of you who has experience and/or thoughts about my case. I must make a decision in less than a week to decide if I should go through an endovascular coiling procedures for my two unruptured brain aneurysms.
Three years ago I had a worst headache and lost consciousness for 30 minutes or so then recovered by itself. Three days later I saw my family doctor and did an MRA. Two brain aneurysms were detected. The doctors cannot be certain if that headache had anything to do with the aneurysms because I did not get it checked out within 48 hours. The two aneurysms are 6 mm (ok shaped) and 4 mm (bad shaped), respectively.
I was too afraid to do the procedure even though my neurosurgeon recommended it. He also agreed to observe them by 6 months and then 12 months MRA.
There has been no change in the BAs in the past three years. But I have been having fear of their possible rupture and thinking whether I should get them coiled. Recently I heard my neurosurgeon who I trust is leaving for another state at the end of June 2020! I became freaking out and asked for the procedures before he leaves. He is kind to schedule it for me. I am very thankful. But Unexpected fear comes back to me. I am hesitating now! I am afraid it is a bad timing because of the pandemic is going on. I am afraid there might be side effects of being coiled for the rest of my life, I am afraid the procedure might go wrong. I am afraid it is a bad decision because my aneurysms will never rupture. After all, only one rupture in 10,000 cases!
Need help! Thank you my new friends! By the way, I am 68 years old and healthy. I exercise daily for 1-2 hours.
Hey Wendy,
Can I ask how long you’ve had your present shunt? Calcification is a process that does take some time to develop and often where the shunt tube moves, like the neck. As shunts age, they do deteriorate somewhat. Some people can go their whole life with no issues, others can have no end of issues requiring repeated revisions. Personally I’ve required 3 full revisions and 2 distal (lower) tubing replacements. One of the distal replacements was due to ‘tethering’, were the tubing becomes attached to surrounding tissue and, yes, I can tell you, that can be very painful.
There are a couple of scans, one xray, the other MRI which can detect such calcification. Obtaining an xray, in the first instance, should be fairly straight forward. If a fracture or calcification shows up from the scan a referral to a neuro maybe required, but see what the scans show first and please, do let us know how you go in sorting it all out.
Merl from the Moderator Support Team
Hey Virginia,
The BIG plus for you here is that with monitoring over 3 years they have not grown. The sizes are small but their location and, as you state, their shape, can play a big role. These are all things that need to be considered by the medical team.
Those fears, they are normal, I can assure you. I call them my ‘What if’s’. ie What if this happens…? what if that happens…? I’ve required a few neurosurgeries and every time I go through the ‘What if’s…?’ Neurosurgery should never be taken lightly, it’s a major operation but if it’s been recommended by a qualified neuro dr it must be deemed as necessary. We cannot control all of the ‘What if’s’ we must place all of our faith and trust in the medical professionals and that is never easy.
Best of luck with it all
Merl from the Moderator Support Team
Hi, Merl!
I’ve had my shunt since June or July of 2010, so going on 10 years. That ‘tethering’ you mentioned is something I’ve wondered about. I had a CT scan early last year of my gall bladder because the pain mimics gallbladder issues, but that came back negative. The past couple of days I’ve had minimal pain, which I’m thankful for, but I would really like to get to the bottom of it.
Once the Covid 19 pandemic gets more under control I’m going to make an appointment with my PCP to see if he’ll order an X-ray. I will keep you posted.
Thanks for reaching out!
Wendy
Welcome! While I don’t have a shunt, I recall taking a young twenty something to hospital to have her shunt replaced many years ago. She had to do it every few years. Hopefully they have improved the material since then.
Welcome! There are some members who will insist you get them fixed right away. I’m not one of those and I ruptured. What I would suggest is write a pros and cons list. Weigh them out carefully. Remember that while your doctor will be moving to another State, you will have a doctor doing all the follow up exams and possible recoiling if the original become impacted. Good luck and keep us posted!
Hi, Merl,
Thank you SO much for your analysis! Every day in the past weeks I am stressed out for a decision. Now only three days left for me to meet with my neurosurgeon to decide it. I am so nervous. Your reply is such a comfort.
Do you know the rupture rate of the ba patients? My struggling is that if the rate is very low and my case is either/or, I may not have to go through the procedures? The procedure itself has an average risk of 1-3% I heard. My neurosurgeon assured me his risk is lower than the national average.
Would you and others please share with me your experience/thoughts/opinions? Thank you!
A confused Virginia
Hi, Merl,
Thank you! I just replied to you on your other message to me. It is very kind of you to reach out and help me!
Virginia
Virginia, you have me and Merl replying to you lol. We should have asked you to start a new topic. According to the BAF, the rate of rupture is about 6-10 per 100,000 in the USA. I’m not sure if they’re just counting the mainland or not. The issue with rupturing acccording to NINDS “ About 25 percent of individuals whose cerebral aneurysm has ruptured do not survive the first 24 hours; another 25 percent die from complications within 6 months. People who experience subarachnoid hemorrhage may have permanent neurological damage. Other individuals recover with little or no disability. Diagnosing and treating a cerebral aneurysm as soon as possible will help increase the chances of making a full recovery.
Recovery from treatment or rupture may take weeks to months.“.
I seem to recall something I read about Japan having a higher rate of rupture and cerebral aneurysms, but I cannot find it. If I had read some of the research, I wouldn’t know what to do. I would definitely have left it to my neurosurgeon as it becomes very confusing. My aneurysm is just 5mm which is considered small. It is at the LICA bifurcation, a point where it splits to another. The caveat for mine was it being a rare multilobed. I like to tell folks instead of a blueberry, it’s like a blackberry. So doctors take their experience, a lot of statistics and make their decisions based usually on size, shape and location.
Hey Wendy,
One of my shunts fractured many years ago at the collarbone. The broken piece snaked it’s way down to my abdomen. When it was replaced they left the old bits floating around down there. Years later, I was having some horrible pains and the dr’s all went “ohh, it must be that tubing…” so they went in and fished it out. It’s all gone, but the pain hasn’t. That surgery was done just as all the COVID stuff was starting. So I was lucky to get it done when I did as I thought they’d probably cancel it.
I know I have to follow it up (I have a wife who keeps telling me TSK) The hospital systems are so overwhelmed ATM, I’ll wait. I know it’s not life-threatening, just painful. The way I look at it is that I’ve put up with it for this long, a bit longer won’t hurt. I don’t really want to go anywhere near a hospital now anyway.
Merl from the Modsupport Team
Hi Merl, thank you so much for your message. You provided me with the answers from my questions as well as a lot more of your insights and experiences. It’s so very kind of you! Thank you! I made a pros and the cons list but still cannot make up on my mind.
Yes I’d like to start a new topic but I don’t know how! would you please give me a direction? Thank you.
Next Tuesday is the meeting time with my neurosurgeon. I’m becoming more and more nervous. But also getting closer to understand that I should trust my neurosurgeon.
Very thankfully, Virginia
Most definitely Ms Virginia! Simply go to the top of the page, click on Brain Aneurysm Support Community. On the right side you will see + New Topic, click on that and start your topic! Any difficulties, just send as a message!
No way?!? They left it inside of you??? That’s just asking for trouble. lol. I hope you continue to feel better and will be able to get some follow up in the very near future! Thankfully, I’ve had several pain free days since last week, so I’ll very happy about that. I’ll take them any way I can get them!
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Yes way 
They were neurosurgeons, not gastro surgeons, so they left the fractured shunt inside. Seemingly I needed a gastro surgeon to remove it.
When they replaced the entire shunt, the old brain catheter has also been left in place, just cut off level with my skull. If they had pulled it out there can be blood vessels adhered to the tube, causing a brain bleed and stroke. So that’s all still in there too
I’m in Australia and (Thankfully) our COVID 19 curve has dropped massively and some medical services are reopening, so once it’s all up and running I’m sure the wife will be on my case again to get it all followed up
It’s often not until you have pain like THAT, that you realize just how thankful you truly are to have pain free days. Long may it last.
Merl from the Moderator Support Team
Craziness! You would think that they’d have to know that anything left behind like that is eventually going to give you issues! Here’s hoping that all will continue to go well for you. Reading about the dangers of pulling out the tubing reminds me of a visit I had several years ago with my neurosurgeon. He said “Your ventricles look great. I would be surprised if that shunt is even doing anything.” I said “Cool, let’s take it out.” He said “No, sorry, it’s there forever.” lol
By the way, I live in West Virginia, USA, so it’s pretty cool that I’m able to get advice from a survivor all the way in Australia! 
Yesterday 10 years ago was my aneursym, so I’m feeling especially grateful to even be able to sit at my desk and navigate the internet. I’m very mindful that many weren’t so lucky.
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Yes, we have to take all of this day by day, 'cos you just never know. For many years (15+) prior to my own situation, I worked with people with disabilities and have seen some of the best and worst case scenarios. So, I too am ‘…very mindful that many weren’t so lucky…’ and this has assisted me in accepting some of the outcomes, as I know things for me ain’t so good, but they could be a hell of a lot worse.
Craziness? Ahh, yes, well, but you can’t tell the dr’s that. They don’t like it at all and with this WWW you can find out that this ‘craziness’ occurs more often than any of them would ever admit. Just know that through all of this, you aren’t alone, many of us have been through the same things.
Merl from the Modsupport Team