Hi I’ve posted here before and on the PKD site but would like to ask the question, as I’ve finally decided to go ahead with a coiling or web procedure for an unruptured berry anerysm in my brain. Has anyone had either of these procedures but also PKD patient. The reason being is that PKD is also a connective tissue disease as well as causing kidney and liver cysts and Im not sure if this increases the risk of surgery. I know I’ve got to have this sorted out before an inevitable rupture at some point... but just got to find a way to tackle the mounting fear!!
Thanks 😌
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tillymint16
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Hi Tilly. I don't have PKD but had coiling of a Subarachnoid bleed 6 years ago. All surgery carries risk as I'm sure you'll know, so we're usually made aware of the worst possible scenario.
But coiling is a preferred procedure as it's the least invasive. I wasn't conscious prior to mine being performed and, as soon as I was compos mentis and learned I'd had a procedure to fix the bleed, I touched my head expecting a large dressing ! I accused the consultant of joking when he enlightned me.
During the procedure radiology screens shows every detail of the coiling, so the whole exercise is in plain sight to the surgeon from start to finish. The only evidence afterwards is a tiny scar in the groin where the catheter has entered.
I know there are other considerations with PKD but after a 1&1/2 - 2hr procedure your risk of a rupture will be a thing of the past. And the fact that yours hasn't ruptured means your after-effects will be minimal compared to those like myself, where the bleeding has caused damage to brain cells.
I was 'lucky' enough to be unaware of my plight once I'd collapsed with the SAH so I sympathise with your anxiety. But please keep in mind that you'll be treated by highly experienced surgeons who's one aim is to perform to the best of their ability...........and using brilliant state-of-the-art technology.
The thought of my little titanium coil, and the lovely surgeon who placed it in my brain only ever makes me smile. Hope you'll be smiling too m'dear when yours is completed.
Once again you are an inspiration not just for me but lots of others on this sight👍🏻I know that my family history and PKD adds risks but I’ve done my homework in all manner of treatment of anerysms the last 4 years and think there’s nothing that I haven’t considered about the procedure good and bad. There’s a new procedure called the Web which is very impressive, but no doubt will cover these possibilities as well as everything else when I finally see my vascular consultant in January.
I’m terrified but prepared and know from reading your posts and others on this valuable site that I am indeed lucky to have discovered this and to be under a Neuro surgeon.
All good wishes for a great healthy and happy 2018🎉
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