Does anyone know about Pseudocysts relating to distal end of shunts such as how they form, how fast they grow, is surgery required or any other information pertaining to these benign growths. Thanks, magnru

Err,
dont take this word for word but...
they pseudocysts are fluid that has walled off in the abdomen, causing fluid sacks. These can cause pain at times and therefore surgery may be required to solve the pain. also pseudocysts can be infectious, in that case you will need them removed and possibly the shunt too as the infection can travel up your catheter and into the brain ventricle.

people can suffer from pseudocysts and not know you have them, these ones dont tend to cause a problem, some come and go.

I hope this helps a bit x

Hey Magnru! I had issues with pseudocysts forming. I had one that formed in my abdomen in march of 2005 and blocked that end of the shunt resulting in a revision. I'm not sure if I was having much pain due to that or not cause at the same time I had an ovarian cyst rupture and a kidney stone so its hard to tell what pain was what! I didn't have another issue until after I had 2 back to back shunt revisions in August and September of 2006. They were within 10 days of each other due to a broken valve. At the time the fluid pushed through my stitches and allowed infection to get in through there which led to me being back in the hospital in october with an infected Pseudocyst. I did have to have surgery to drain it since it was making me have a 104 fever. I was having stomach pain at the time so I thought it was another ovarian cyst and I didn't realize I had a fever.

After that one was drained, I was fine for the rest of the month(but since I got out of the hospital the day before halloween thats not saying much!) and for november, but in december I started having the same stomach pains and ended up spending most of the time after the first week or so of the month with a heating pad on my stomach. I went back to the same doctor who handled my stomach surgery before(since the shunt wasn't a shunt infection my neuro was consulted and present during surgery but wasn't the primary) and she sent me for an ultra sound which showed the cyst. Due to the time of year nothing was done until the first days of January(around the 5th I think?) when I had another minor surgery(out patient) to drain that cyst.

I met with my neuro concerning the pseudocysts on I think the 8th of January and he said that the scar tissue in my stomach (due to the 2 shunt revisions I had had, one as a baby and the one in 2005) was trapping the fluid that the shunt was draining into my stomach and causing it to form the pseudocysts. Because of that he said the my stomach was no longer a viable option for my shunt. Around a week later I had surgery to move it to the lining around my lungs(pleural cavity). They said when they did the surgery that another cyst had grown and was blocking my shunt again. They didn't have to do surgery to remove it that time as it wasn't causing me any pain and after they removed the shunt from my stomach nothing was feeding the cyst and it dissolved.

So basically for me, I had one pseudocyst form in march of 2005, and didn't have another until october of 2006. After that though I had another one grown by december, had it drained in january only to have another one formed about a week and a half later. So I guess how quick they grow can vary. Mine did require surgery except for the last one that dissolved after the shunt was removed. Hope all this helps!

Thank you jadiee-x and Melissa21 for responding to my questions. Three or four months ago I had a fair amount of pain in the area of my shunt on the R. side of my peritoneum a couple of inches below my scar. It caused me much nausea. After about 1 week the pain totally subsided but I have been left with frequent nausea every day from when I wake up in the morning (more severe) and throughout the day. I have a hard 2 inch long pencilwide mass a couple of inches below the incision site. It doesn't cause me pain but when I press on it I become severely nauseated. My CT Brain scan of a couple weeks ago shows the shunt working well with essentially no change from the original placement 3 years ago. I am not sure what the mass is. It could be a fat pad or something else. I have an appt. with my Neurosurgeon Fri. And will let you know what was said. I do know that as long as there isn't any pain I don't want to be sliced up any more. I've had 7 surgeries since 2002 including a Craniotomy and I am frustrated and fed up with the whole thing. I would like to go back to work (I am a Registered Respiratory Therapist) but my Neurosurgeon and Neuropsychologist have ganged up on me and won't let me work anymore. The whole thing is surreal. Magnru

magnru, i know what you mean with wanting to get back to normal.
i was in the same situation, well kind of.
i was due to start college on 4th september and i was really looking forward to this as it was a brand new fresh start from everything, i would be able to get back into routine and complete my education as well as i could after having a dreadful two years in my GCSEs at secondary school.

On the 2nd of september, i had an appoitment with my opthamologist, who has been trying to investigate my on going headaches, nothing had been found to that date, except this one time where papilledema was found. i had felt fine for wekks with no headaches which was surprising, i felt better than ever but they actually found that i had pressure in head once again.
i came back the next day for an appointment with some professor goadsby and he confirmed this and made it apparent that i had to be admitted straight away and have an ICP tap put into my head to measure the pressure. This was the point where everything came crashing down, i had had no problems with my shunt for 12 years and the day before i start college, a problem is found!
i was expected to be out after 2 days of pressure monitoring, but i went into a coma and had to have emergency shunt revision. i came out as light as rain, but 5 days later i was back for my post op checkup and xrays. an xray revelaed that the distal end of the catheter had migrated from the peritoneal area so i had to have this reinserted about an hour after finding this out!! But exact happened again and it came out of place due to scar tissue so a new incision was made on my abdomen. But since that night of the op ive had pain everyday, on and off. i was back in for investigation of the pain and had every test possible spent my 17th birthday in there, but nothing was found exept an ovarian cyst and excessive fluid, but they couldnt be sure of what was causing the pain until the ovarian cyst had gone. I was back 4 weeks later and had an ultrasound done and it showed i still had excessive fluid but the ovarian cyst had gone, but i still had the pain everyday.
im now due to go to hospital and have my VP shunt converted to a VA so the distal end goes into the heart which should resolve the pain if its shunt related and due to fluid in my stomach.
They wanted me to go today and have fluid taken from my reservoir, but my family are at a funeral, so it should be tomorrow.
then they wanted me to come back on sunday, which is my little sister birthday! and then i should be home on xmas eve hopefully, but that my baby brother birthday and well then theres xmas. Everything is just not going right, i just want a routine back really. ive spent the equivalent of about 2 weeks at college so far since september! argghh.


well i hope you can get back to work soon and they sort this pain out
Best of luck to you!!

Hey,

I had a pseudocyst in my abdomen once my neurosurgeon drained the fluid and change the shunt tubing within two weeks or so it was back. Before I had the ETV procedure done, I went to ultra and had the cyst sucked out with a volcano bottle. Relief was instant but with in 9 hours that following morning after the procedure the cyst was back a the end of the tubing and look exactly the same size as the night before.

Crazy the way our bodies work.