Looking for support and advice. PKD with aneurysm

General
1

I am only 24. I was diagnosed with Poly-cystic Kidney Disease when I was 16. It runs in my family so it was no shock when the tests came back positive. I've always been really good with keeping an eye of the disease and i'm really fortunate to have an amazing doctor who keeps me on the right track. I got the flu back in march and was getting really bad headaches which i thought were from the flu. The flu passed and I was still getting headaches which is really out of the ordinary for me. My doctor ordered the MRA of my brain just to take a look and make sure I was okay. I honestly didn't think they were going to find anything. Well the results came back and now here I am with a 4.5mm aneurysm. Obviously my first thought was "Oh great I have a ticking time bomb in my brain". I went to see someone who specializes in aneurysms. In his opinion, I got the aneurysm because of the PKD. I guess its more common to get them. He said that he would operate on it right now if I wanted him to but thinks I should wait 6 months and do another MRI to see if it grows. The thing is I dont know if i want to wait. It's not like its going to get any better. Plus there isn't enough research on aneurysms with PKD. Yeah it might not grow at all but the PKD might make it grow faster. I'm only 24 and its already 4.5 mm. I'm not saying that its HUGE by any means, its just not super tiny either.

Here is where I want advice. Am I over thinking this and making it a bigger issue than it is?Or do I have every reason to freak out?

Also, if anyone has done the coiling procedure please let me know how it went for you. Don't feel like you need to candy coat it for me either. I've had PLENTY of surgeries before so the thought of it does't scare me too much anymore . (Both hips, both ankles twice and knees)

2

Tfanny1122... welcome...

I do not have PKD...tho close to a family w/it....paternal, and all 4 children (my age bracket - your gramma's bracket) who all have it...two are still w/us...some of the children have had it passed on to them. The eldest, yet here, has an aneurysm somewhere on her aorta (cannot remember as I type this as to where.).. These two were in a clinical trial this past decade (memory loss of years) and the results of the trial was not successful (of some pill).

Some time back, a member here had PKD and to whom my close friend (noted above) sent her some PKD info... (no, I know nothing about what)

For any of the brain procedures, I can only suggest you be so specific asking about the angiography of the high radiation and the contrast materials... and, their anticipated 'time frame' of any of the procedures...

For the open surgery/clipping...ask if that procedure has the angio on fully ...as it is in the other non-open procedures...again, the time frame of a procedure.

I do not remember offhand, whether your PKD has any association...or if affiliated w/ the NKF...tho you may want to pursue NKF and particularly on the contrast materials...they have a wonderful site and monthly newsletter...

Then, pull up online: Arteriogram - Medlineplus...and, can follow up on their sites ...

and, forgive me, if you know/do all this already.

I was coiled and I am not a good one to ask for an opinion...however, for anyone, there are the f/u angios to check...and, often more needed than following open surgery/clip checks.

As for size...mine was a barely 6 mm L PCOM aneurysm that had had leaks...

This weekend I will be meeting a woman who had a 3mm aneurysm (do not know details) ...and, was put on the wait list who then had a rupture apx a year after the initial...(no she does not have PKD) and, I do not know which cerebral artery.

Wishing you best research, answers from neuro-docs ...and, your comfort level decision...and, keeping us posted ...

3

P.S...I have never checked the Group sites for PKD...you may want to...and, if none, may want to consider setting one up... ???

4

Tfanny1122, I have honestly never read a coorelation between PKD and aneurysms. That is very interesting to learn, thank you.

I was coiled following a rupture on a multilobed little bugga and I guess one of the daughters grew and I had to be coiled again (it was behind the first). I was 53 when the pipe blew in my brain. I would think it better if some members reply who didn’t rupture. The SAH causes it’s on little issues that unruptured don’t have to confront. But surgery is surgery and there’s always a risk.

Coiling isn’t so bad in itself, I’ve had major back and foot surgery, and some minor things. It was nice to know I had no stenosis in my arteries when my brain was coiled. I get setbacks now each time I go under anesthesia and don’t know if it’s because I’ve had so much in the last several years or because of the rupture. There is a lot of information citing concerns with coils compacting. The other concern is this surgery isn’t like any others dealing with other parts of your body. Yes there is always the risk of anesthesia in any surgery, but the brain is a little more risky. So I’d like to suggest starting out researching on the BAF (link above) utilize NIH and WebMd, the Barlow Institute has some good info as well. Then or if your like me, while you’re researching, write down all your questions. Make a plus and negative list and talk it all out with your doctor.

I hope you find peace and reassurance, remember to breathe :slight_smile:

5

Tfanny...

You may want to view the website Campanile placed in Ritchie's Angiogram Dye questions ...

After reading the one Campanile provided, I pulled up one on WebMD on the N-Acetyl Cysteine noted in the one of med.Umich

I texted my friend of the PKD family if she knew of N-acetyl cysteine and she texted back that she did not. This morning I emailed her the websites... nd asked her if she could check w/her nephrologist etc...

You may want to ask your nephro...and/or you may already know about it...

6

http://www.ncbi.nlm.nih.gov/pubmed/1782619

7

I have PKD and was just screened and they found a “possible” aneurysm. I’m still kind of in shock. Is your blood pressure controlled?