ACA

Can they really remove your arachnoid cyst?

In Arachnoid Cyst Surgery, Arachnoid Cysts, Personal Stories, Shunts on August 23, 2012 at 12:53 pm

Author: BobSmarks

Ever been convinced by a neurosurgeon¬† that they can remove your arachnoid cyst? What do they actually mean by that? What they mean is rather than just fenestrating the cyst, they remove the wall of the cyst with a laser. But in most cases this isn’t what actually happens. They very rarely are able to remove the entire wall of the cyst because it adheres to the brain. It isn’t some foreign body, as a tumor is, the cyst is formed with parts of your anatomy that are already there like the arachnoid membrane and your cerebrospinal fluid. Given that the arachnoid membrane is literally the wall of your cyst, removing it is very dangerous which is why most neurosurgeons prefer traditional fenestration or shunting.

I will not publicly denounce the neurosurgeon, or should I say, doctor who most people assume is a neurosurgeon, but isn’t actually one, he is a radiologist. But yes, I was suckered into his “cure” for my arachnoid cyst. His “complete removal” approach to my arachnoid cyst was anything but, and when it grew back, he didn’t want to have anything to do with it, well actually he couldn’t, because he’s not really a neurosurgeon. So I had to go to a completely different hospital far away from his to get it shunted.

In the end was it worth it to go through all of that? No! I wish I had done more research beforehand, but with all of the television shows promoting this “neurosurgeon” I thought he would be the best person to operate on mine, I was wrong. It would have been easier to either try fenestration or go straight to a shunt, since that’s what I ended up with anyway.

I am suggesting that you, if you just have been diagnosed, explore all of your options, and don’t just jump on the chance to get operated on by someone who isn’t the best qualified in this area because you’ve been turned away elsewhere. Best to stick with a university hospital where they have been training in neurosurgery for years. Yes, a lot of them would rather you didn’t have any surgery at all, but a lot of them know how to better operate on arachnoid cysts.

-Bob Smarks

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  1. Thanks for posting Bob! I always found your story interesting because of who operated on you. I think it is easy to fawn over the first doctor who takes us seriously, and sometimes the first doctor is the best doctor, but in some cases it isn’t the best doctor for you at all. Best to always have a second opinion even if it’s only to question about the surgery the other neurosurgeon has proposed. Always double check so to speak.

  2. My answer would be no they can’t. I can see how people would think that they can remove an arachnoid cyst because a lot of people think brain cysts are the same as brain tumors when they are not. Cysts are even more complicated to remove than tumors are, not that there is a competition or anything. :) But it should give you a little insight into how arachnoid cysts aren’t so easy to operate on like a lot of people think. A lot of people go, “oh it is only a cyst, thank God”, well a cyst can be just as annoying and symptomatic and even more difficult than a benign tumor.

  3. When Theo finally had his surgery, his cyst was in his right lateral ventricle, they did everything but dissect the wall of the cyst for the reason you provide. It was attached to the brain and a major blood supply as well. Our NS told us that the only thing that would have warranted the risk of bleeding from dissecting the wall was if Theo had hydrocephalus. They were able to successfully open up, drain and cauterize the cyst and so far so good. We were told that the likelihood for reaccumulation is super slim:) so far so good. And yes, we had it done at a teaching hospital/major university. It took two years to get it however. Our NS does see that Theo’s surgery was beneficial BUT still can’t make up his mind yet since the world of the brain is so complex and unpredictable so he is still saying it COULD be a coincidence. All we know, is that almost 4 months out, Theo has not had one single headache, seizure or migraine as of yet.
    If It wasn’t for ACA aiding me with advice and support early on, I do not think I would have landed Theo where he is now.

    • That’s great news he is still doing better!

    • Hi Eva, good day! :) I would like to know how Theo is doing now? Reason for that is I’m doing research on my own if it’s worth the risk for a surgery and even the sound of it is terrifying every part of my soul. Would appreciate it much. Thank you! :)

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