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PKD and aneurysm

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Old 03-03-2009, 02:34 PM   #1
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fatkidney HB User
PKD and aneurysm

Hi everybody. I'm new here. I'm a 33-year-old mom of two. I have PKD, as do several family members. I'm wondering if anyone here has an aneurysm? I visited my nephrologist over elevated creatinine levels and am now scheduled for an MRA tomorrow to check my head for aneurysms. Just wanted to know what symptoms people have experienced that led to aneurysm discovery? Or if there even are any. Most of my reading suggests aneurysms usually rupture without much warning. I've had a couple of odd headaches, not super bad, just different, and I have sharp pains in my head and pains above and behind my left eye that only last a few seconds at a time. Also, as I'm typing I'm getting one of my strange feelings of numbness running down the left side of my jaw. It's not painful, it's just strange...kind of tingly. That's been going on for a few months now.

Just one more thing. I was diagnosed with my PKD five years ago, but only recently has my creatinine level raised. It's gotten as high as 1.82 How concerned should I be with that level?

Any and all feedback is greatly appreciated!!!! Thank you!

Last edited by fatkidney; 03-04-2009 at 09:13 AM. Reason: had the number wrong

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Old 03-04-2009, 07:21 AM   #2
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Re: PKD and aneurysm

i had my aneurysm induced by PKD back in 2005. i had NO headpain what so ever til after it was coiled. you can actually have many or no symptoms with aneurysm, thats why they are so freaking scarey. i just happened to have a VERY thorough neurosurgeon who did my spinal cord surgery a few years before take what little symptoms i did have seriously and send me for an MRA which showed mine. i also had wats called a cavernous hemangioma in my spinal cord, which is another form of vascular malformation too. at first he really did not connect it to my PKD tendencies since i was born with this in my cord, but just did not know it til i needed an MRI after i herniated a c spine disc. it just showed. but once the aneurysm also showed up,he really felt that they were all connected to PKD.

my aneurysm symptoms were a bunch of heat "flushes' that would just pop in about the middle of the top of my head and then just kind of "flush' down the back into my neck. and i had some 'off' feelings in my head once in a while. i NEVER ever would have thought i actually had a aneurysm,espescially since i never had an actual headache from it. that is why i am sooo greatful for having one of the best neurosurgeons. it was that MRA that revealed it. i had recently had an MRI done of my brain/c spine areas and it did not actually show there either. it was only seeable on the MRA and the angiogram i was sent for to see if it was coilable.

i really am glad you have someone on top of your care enough to actually send you for the BEST type of test to reveal possible aneurysm. i really do think if you do actually have one,it would most definitely show itself on the MRA. all that type of test does is look only at all the arteries in your brain with no soft tissue structures to get in the way of possibly not seeing it like mine was. i do hope they find nothing up there to worry about. please keep me posted. Marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 03-10-2009, 12:23 PM   #3
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Re: PKD and aneurysm

Thank you Marcia. I'm happy to report the MRI/MRA did not show an aneurysm. Instead I have a large cyst on my sinus which even if I have to have surgery on is an outpatient procedure, which I'd be more than happy to have instead of an aneurysm surgery.

As far as my PKD, my nephrologist says I have innumerable cysts and my kidneys have enlarged, but those are both consistent with the disease. He says my renal function is "not too bad." So I'll power on. I was hoping to have one more baby. I've got two girls. I'd like a boy, but I guess that probably wouldn't be such a good idea since I went into preeclampsia with both of my girls. We'll see.

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