My shunt tubing has been causing so much pain that I thought I broke a rib. I went for an x-ray to confirm the break - I couldn't believe the length of the tubing!! What a tangled mess! The rib isn't broken. Maybe it's just scar tissue that's been loosened? Time to call the Neuro.
Anybody else?
There's a whole discussion here about shunts, where I also posted about being poked... http://www.bafsupport.org/group/shunt
Yes, thanks Anna. I read your post, and followed the entire discussion. Unfortunately, this pain is more than a poke. The most amazing part was when I saw the length of the tubing via the x-ray. I had no idea it would be soooo long.
I agree - I don't know why they make it so long. One doctor told me it's because when they put them into kids, they have to be able to grow into them. I found that a totally ridiculous answer, and quit asking. There's got to be a good reason... Anyway, I've had mine for over 4 years now, and it pokes so much less (or less obviously) than at the beginning. How long have you had yours?
I've had mine since Sept 2011. It's just started bothering me recently- within the last 3-4 months. Severely, within the last few weeks-always on my left side-which according to what I saw in the x-ray makes sense, as it is in the left area of my abdomen.
When I asked how I would know when there's something wrong with it, one nurse told me I might have abdominal pain and/or inflammation on the skin. Perhaps you should call the neurologist's office and see what they say. By the way, 2014 was the first year since my SAH that I didn't have a follow-up with either of the neurologists who'd done procedures on me, so on their recommendation, I've started seeing a shunt specialist annually; he checks the setting on my programmable valve, and is available to me in the event I'm worried anything's wrong with it. I highly recommend this, in the event your neurology follow-ups become more than a year apart...
Well, I did the X-ray and I found my tubing was behind my stomach, that why I do have difficulties to eat a lot, also since I have the shunt I have a big belly, I really pay attention to my food intake but I can get rid of the belly. I also have tremendous shoulder pain and I was told by a neurosurgeon that it was due to the tubing touching the diaphragm which create a reaction of certain nerves. The neuro also told me he saved my life, and that I had to leave with some side effects. I honestly think, they don’t have any idea what we feel.
Thanks Luxtine. I've been trying to speak with my Neurosurgeon for the last week about this pain, but we keep missing each other. I can feel the tube on the outside of my ribcage- it must have moved somehow.
It's hard being so far away from his office. (2+ hours)
My son is driving me to St Louis tomorrow for a CT Scan and a visit with my Neurosurgeon Dr Zipfel, to see why I am having so much pain on the left side of my abdomen.
Does anyone have any ideas on things I might also ask while I'm there?
For one thing, I want to know the kind of shunt I have.
I am by no means a shunt expert Alice, but I would ask if it’s programmable and if it just needs adjusted. Found this on John Hopkins
What do the different shunt settings mean?
In general, a higher shunt setting means less fluid is being drained. A lower setting means more fluid is being drained. The settings vary for each manufacturer. The number does not correspond to intracranial pressures.
What precautions do I need to take if I have a programmable shunt?
Your shunt valve setting can be changed by your physician using a programming device, or it can be changed accidentally if you come close to a magnet, even ones found in headphones. Have your shunt setting confirmed by contacting us if:
You experience headache, persistent nausea, vomiting, drowsiness, weakness, seizures, slurred speech or worsening gait and balance
You have an MRI for any reason (CT scans have no effect on the shunt)
Before you schedule an MRI to arrange for the valve to be adjusted the same day
Some newer types of shunts are not affected by MRI’s or magnetic fields.
Always confirm with your physicians if the kind of shunt you have is affected by magnetic fields.
Hope this helps…
Well Moltroub I'm home after a day in St Louis and have I learned a lot!
The reason the Doctor ordered the cat scan is to make sure no cysts had formed at the end of the shunt tubing.Usually when a patient complains of pain this can be a probable cause. He was very surprised that the tube had moved so far left, especially since I sleep on my right side.
My shunt is programmable called"Sophysa." It is never disturbed by any type of magnets.
My aneurysm was in the posterior communicating artery and was 4.9 mm.
It was an emotional day for me, because I haven't been back to Barnes Jewish Hospital in years.
Good for you Alice! Isn’t it great we can still learn? So now what does the doc do if you don’t mind my asking? Can they manipulate the shunt tube back by massage or something non evasive? I understand the emotions of returning to the hospital that is instrumental in saving ones life. I went once after six months to thank the staff and then the next week I had to spend the night. Was much better walking in and out then the over night stay. But the nurses worked so hard at keeping me alive for almost one month. Some had retired, some had left hopefully for greener pastures and some were still there.
Hope everything goes well for you!
Sorry Moltroub, I had to go to sleep!!!!
Being a surgeon, he suggested going in and reducing the size or removing it completely. Nothing non-invasive. He also suggested doing a full blood panel workup to be certain the pain is not due to kidneys, pancreas, etc.
I've been back to the hospital several times, when I also had the opportunity to thank the staff - but not since my divorce. This time my son took me.
Sounds like a great doctor! When I first moved to NC, I took a young lady to get a new shunt. She had to go in every six months. I’ve lost contact with her over the years, but hope they could figure out something for her. It was back in the 80’s and her shunt came right out her skull. I had nor have seen anything like it, except at a hospital I was getting training at back in the 70’s.
I had a friend take me one time when I had to go back to my Neurosurgeon. It’s a very different feeling. We ended up having a blast. I always go out to eat afterwards and a trip to my favorite tea shop as a self reward for being good lol. I have lots of teas! I only get one new flavor when I go. It’s amazing the staff has learned my name, at the tea shop, and will give me their update on how I’m doing. I didn’t get out early enough on my last angiogram to get my tea, so it will be interesting when we go in July.
Yikes, you're scaring me, right out of her skull?????????!
We went to Whole Foods for lunch/dinner as I'm a vegetarian. It was pretty great.
Yep she kept it behind her ear. Don’t know why. But if I remember correctly it was always plugging up. We don’t have Whole Foods here anymore, I’m jealous. But a treat is a very good thing!
yes my tubes are painful for 6 or 7 yrs now
Haunted lady- Have you had a CT scan to see if any cysts have formed on the tubing? After I experienced all that pain, my Neurosurgeon ordered this procedure to rule out cysts. He explained to me that this does happen. In my case I think it was just scar tissue that had broken loose. The pain subsided over time. Anyway, sorry that you've been experiencing pain for such a long time. And of course, have you called your Neurosurgeon? Good luck!
Were you ever able to get rid of the pain or figure out the cause? I have had my vp shunt since August (4 months) and continue to experience severe pain. It comes and goes but is always located bu the shunt (side stomach or pelvic area and xrays showed the shunt exiting in those areas at the time). I am also experiencing stomach distension and intercranial pressure which I am reading are common signs of cyst but anytime I have gone to emergency, this has not been noticed. Perhaps it is something that needs to be specifically looked for?
Manda, Welcome to our group! Have you contacted your surgeon?
All the best,
Moltroub