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AVM Survivors Network

Retained microcatheters

Does anyone know anything about entrapped catheters during embolisation? we found out 13 years later that they’d left 2 catheters in my daughter’s arteries running from brain to thigh. they didn’t tell us!! the catheters are now causing pain from issues with circulation

Two posts now in respect to catheters left behind, I find that very odd. I’m going to use some Dr. Google and see if there is a reason but I had never heard of it, until now! Take Care, John

there’s a reason you don’t hear about it. they don’t tell their patients! my daughter already had an adverse outcome from the embolisation - severe short term memory deficit which they denied at the time. so its never been recorded anywhere. they told me it would probably resolve spontaneously. 14 years later, it hasnt. that’s not recorded anywhere either.

Any opportunity for consult elsewhere, another hospital within reach? I’ve found the neuro folks I dealt with really good and if there is an opportunity I would take it. There must be a way to remove them? Sounds like quite an odd situation to me. I would love to hear the explanation of why they are there… Take Care, John.

i’ve had plenty of time to research the subject while i wait 7 months for the hospital responsible to address my questions. Sometimes catheters get stuck when using onyx to embolise an AVM. its not widely reported. if they inject the onyx too quickly or they are too slow to remove the catheters when the onyx refluxes it can cause them to become trapped. there are several ways they can try to remove them if that happens. it is regarded as a serious complication but maybe, like in my daughter’s case they just pretend it never happened! there’s very little, if any studies done on patients who have experienced this.

there are plenty of mentions of catheter entrapment during embolisation in the literature i.e. neurosurgery journals. but there dont seem to be any studies done on the patients who have experienced this. some articles mention that most patients have no ill effects from having metre-long foreign bodies in their arteries but how would they know??
it was certainly not mentioned as a risk of embolisation before my daughter signed a consent. neither was short term memory deficit because the area of her AVM was not on the memory circuit, however, onyx can migrate and it can be hard to predict its migration path, and there a many parts of the brain that can affect memory.

yes we have consulted another neurosurgeon and vascular specialists from another two hospitals. they are very non-committal. one described the situation as bizarre - I think she meant - the fact that we werent told. their investigation is on-going but they are hesitant (with good reason) to touch them despite my daughters pain and impaired circulation.

Quite a situation for sure, and you’ve done a great deal of research and the consults. Not sure what my next step would be to try to improve, and I would guess the hesitation may be associated to risk in taking further steps. That would be a guess on my part. I hoe they’re able to provide some clarification on possibilities to you. Take Care, John.

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thanks John and Greg, can you believe doctors are not always reporting these incidents? how many people are walking around with catheters in their arteries that they don’t even know are there? how would anyone know the real number of these incidents if they’re not reported? and are retained catheters ever mentioned as a serious risk of embolisation before patients consent? has anyone out there been warned about this before they signed a consent?
the neuroradiologist was aparently very experienced and the brain surgeon (a god-like figure in the neurosurgical world, described to us as the best brain surgeon in Australia). both of them responsible for lying to us and withholding the information that the catheters had been retained.

When I mentioned “Not always reported”, I was referring to MAUDE, medical device (Medical and User Device Experience database) A physician would/should always inform the patient, but not necessarily the company or MAUDE.

Thank you for sharing this.

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Hello there.

After reading all the above, I must say I learned something. Frightening! As a former surgical ICU R.N., caring for heart patients, I don’t recall anything similar with regard to catheters getting stuck. (Must be the onyx thing.) I would think the surgeon has an obligation to tell the patient so that measures can be taken to follow up on its position and risks to the patient’s well being. I see you’ve done a great deal of research. Did it include reading your daughter’s chart? I don’t know how old she is, but in the US an adult has a right to read his/her own chart. The request is made through the hospital’s Medical Records Department, and requires proof of identity. I’ve done so myself, to help with my understanding of what happened prior to my emergency craniotomy for my AVM rupture. I will anticipate the response. Thank you so much.