Oh norma, I am so sorry this is happening to you. thank you for such an interesting story. I have been trying to educate all biological (not inlaws) members of my family (cousins, aunts, uncles) of the dangers of PKD. Some of them even want to get checked out - not just my brother and sister but a few cousins and my godmother! Sounds like your nephew has been in complete denial for along time. He must have been extremely hardheaded about not getting tests and procedures. Didn't you say you had an aneurysm and had it taken care of? Getting them must run in your family. A PETT scan could have detected this very quickly. I wasn't too happy to get one myself but after reading your story - I am greatful that everything is good and the cysts in my skull are benign. God bless your family during this time.

Norma,
I am so sorry to hear about your nephew's stroke. Here is a site you can read an explanation of the different kinds of strokes. We all hope he makes a full recovery. Keep us posted.
I have a question if I may impose...what is the "shot" you mentioned to prevent brain damage? That's a new one on me.
Gentle hugs,
Jessica
http://www.americanheart.org/presenter.jhtml?identifier=4755

my mother, long time ago at age 33, had what was called a cerebral hemorrhage which we now believe was an aneurysm. she had a second one which took her life.
this is quite likely what is going on with your nephew. the good news is medical care has come a very long way since my mother's stroke and he may have a good recovery.
he will be in myt prayers.

My mom died from a PKD related aneurysm...my understanding is that an aneurysm is a weakness in the "lining" of the artery in the brain. Eventually this weakness can cause a tear that can cause a brain bleed. A stroke is caused by a clot that comes loose and causes a blockage. The result is similar but the way iot happens is different. I do know that the risk of clotting is heightened during and directly after surgery.

I am so sorry Norma. I hope he has a speedy recovery and starts to manage his PKD.

Jessica, these meds have been around for quite a while. they are really effective if given within 24 hrs. of the first symptoms of a stroke begin. After that, they are useless. The injections don't stop the effects of the stroke, but they do stop the brain impairment, (damage) For instance, if someone is having symptoms and they rush them to the hospital and give them these meds, it will stop the brain from being damaged, however does not stop the part of the body that was affected, from being paralyzed. However does offer them the ability to use physical therapy more effectively and thus recovering completely. There is no recovery for my nephew, he has had a massive stroke and quite honestly, no one usually recovers from any sort of stroke completely. The trick is to prevent the stroke from happening to begin with. Thanks for the website, I'll go and take a look.

Norma...

Jen and Lindsay, Yes your right about me having aneurysms, I had them operated on at least 25 yrs ago. Thats the biggest trick of all, is being tested and having them taken care of before something like this happens. But as usual so many people in this world of PKD, don't want to talk about it, don't want to deal with it and therefore end up paying huge consequences in the end. I can't stress to everyone how important it is for you to be tested, particularly if your mom's or dad's had them, but thats another story for another time. I'am, just not clear if he had the stroke because of brain aneurysms or that he developed a brain bleed. The sad thing is now, we will probably never know. And does it matter, I think it does, acutally I can't think of anything much more important. 2 of my 4 four children have escaped them, but we have two that are going to be taken care of. Thanks girls for your information and thanks for being you...

Norma..

Sweet Norma,

I am so sorry to hear this news. My prayers are with you and your family. The only thing I know is that PKD patients are more likely to develop aneurisms that other healthy people. But unfortunately, I don't have a clue as to the nature of your nephew's condition. There are so many things that could go hand-in-hand. I think the message here though, is that us PKDers have to stay on top of their game and be pro-active in their own lives. For me, there are fewer suprises that way. Take care Norma!

K~

Oh my! I don't know what to say, except I am so sorry, very sorry. The whole family must be just so shocked.

Yes, my mother talked about the possibility, as well as my doctor has told me to be very aware of it. Oh my, this really is so sad.

Hugs to you Norma

Heather, Did your mom have brain aneurysums? If she did, have you been tested? Being aware doesn't do much, being tested does a whole lot. Sure hope you have been.

No Norma, not that I know of. But you know, I have to say, every day I think of something that I am going through, and regret that I wasn't there more for my mother. We didn't have a close relationship, and so I sort of guarded my heart, but now I regret that I wasn't able to be of more help and at least understanding for her. I guess it helps me now though, to have patience with those who do not understand me.

I never have headaches, like other folks do. But my doctor told me that if ever I did, to go to ER immediately.

So, I suppose one would have to have brain scans in order to find this out? And at what stage in your life would it show up?

Heather, I so understand what you are saying about your mother, I too was in a difficult position. The aneurysms that we get from PKD are present at birth, we are born with them. I had 7 in my pea brain! I suppose they would have showed up anytime in my life before I was officially diagnosed. You will remember me saying this before when you hear it now. I never had any headaches at all. The only reason that I was checked was because my doctor at the time had read about this in a medical magazine. in today's world, they can check for them easily with a PET scan or MRI, I'am not sure which, but what I had to have done was quite barbaric compared to today's world. The only real symptom I had was a drooping eyelid that was directly a result of the aneurysums, in my case anyway. Many people have no symptoms at all, actually most people have no symptoms. Berry aneurysms are a cluster of small ones, here and there in the brain. Mine were actually quite deep in the brain and the local doc's her in "Podunk" NY, LOL said that they couldn't operate on me as they were too deep. Jim and I went to the library and looked up who's who in neurosurgery and found a famous doctor right close at Robert Packer hospital in Sayre, PA. This was before the advent of computers in the home, so we spent a lot of time doing research to find someone to do this for me. It really was amazing when I think back on it now. I was a lucky girl with a lucky husband and a lucky surgeon.

Here is some information about it: http://www.uptodate.com/contents/patient-information-polycystic-kidney-disease?source=outline_link&view=text&anchor=H13#H13

Norma, I'm so very sorry to hear about your nephew. I used to work in stroke rehabilitation (speech and language) so I know a fair amount about what's involved and how protracted it can be. There is often quite a lot of spontaneous recovery in the period immediately following a stoke, and I hope that you nephew recovers as much of his previous self as possible. I do know people who have had massive strokes, and after intense therapy have made good progress. I hope that your nephew starts to recover function as soon as possible.

Take care,

Chewitt

Norma,
I'm so sorry to hear about your nephew. I hope and pray he's on the road to recovery.

A stroke caused by a clot is called an ischemic stroke (caused by a blockage). The mechanism is very different than a stroke caused by a leaking or ruptured aneurysms (hemmoragic stroke or bleed out). Both can be fatal, but in the case of the ischemic strokes, there are treatments available, such as the injectable medications, that can be used to break up the clot and help the patient survive with minimal lasting effects and no requirement for surgery. In the case of the hemmoragic stroke, the only treatment option is to go in and repair the site of the bleed in the brain.

In either case, if there is a good place to have a stroke (not that there actually is one), the OR with the anesthsioloigst and the critical care team right there is it; the critical care team is right there and he received immediate care and the medication he needed. And any remaining surgery on the shoulder (if they were actually performing surgery and not just manipulation under anesthesia to break up the scar tissue) can wait; it's the least of the worries right now.

In terms of aneurysms, they can develop at ANY time. While some (rarely) may be present at birth, they can also develop over the years. There are many reasons people can develop aneurysms. PKD is one of them (it's the most serious extra-renal complication in PKD) and tends to run in family clusters (about 10% of families).

PKD is so much more than JUST a kidney disease. It has a connective tissue component and it is that component that contributes to the development of aneurysms (both cerebral and aortic). This is why it's essential that anyone with a family history of aneurysms (especially those with a first degree relative), cerebral and/or aortic, get screened via MRI/MRA (no contrast needed) for aneuryms...and more than once in their life! In fact a large number of nephrologist routinely screen all of their PKD patients for cerebral aneurysms at least once in their lives, regardless of family history. It's also the reason that if we experience the absolute WORST headache of our lives, we should immediately go to the ER and use that exact term: I have the WORST headache of my life and I have PKD. It's the most well-known, life-threatening complication of PKD and those words alone should get you in immediately and get a CT scan ordered (without contrast) to look for any bleeding in the brain.

Our blood vessels are not static (just as the cysts in our kidneys are not static; they aren't all formed at birth and never change). Aneuryms can form at any time. Most radiologist recommend rescreening of patients with a strong family history at least once every 10 years, if not more often.

My family has cerebral aneurysms (first cousin, my generation, died of one) as well as the much more rare ascending aortic dissections (also a vascular abnormalilty related to aneurysms; both my father and uncle died within months of each other of one; they are now known to be related to PKD). My recommended screening regimen (both brain and aorta, full length of the latter from heart to where it divides into the femoral arteries) is once every 2 to 5 years (I prefer the every 5 years for the aorta as I find MRI machines uniquely uncomfortable). Alas, aortic dissections do not appear until they are actually occuring (and how anyone would access my aorta, which lies behind my funky liver is beyond me), so the hope if I am vulnerable for one, there will be some warning sign before one happens (a bulge of some sort or dilation of the aortic root...although I prefer that nothing will ever happen ever!). And it's essential my BP stays nice and low as well to avoid any pressure on any possible weakness that hasn't yet appeared.

I hope this helps clarify the difference between the two types of strokes, ischemic (due to clots) and hemmoragic (due to ruptured/leaking aneurysms) as well as the fact that aneurysms can form at any time and over time.

Please let us know how your nephew is doing!

Lots of gentle hugs!
Ruth

PS Many aneurysms are silent, there are no symptoms, no pain, nothing. There is no indication there is anything going on inside the head until someone goes looking. But there is the risk of rupture, which is cumulative over time so there is a careful decision that needs to be made as to whether the risk of ruputre based on the size and location of the aneurysm is worth the risk of the surgery needeed to coil, clip or otherwise repair the aneurysm. In your case, there was a definitely need; not only did you have symptoms but a very large aneuryms (7 inch aneurysm is very large; they're usually measured in millimeters). For the very small ones, the risk of rupture may be less than the risk of the surgery (even the angiogram to confirm the presence and possibly coil the aneurysm). It's a challenging decision to make.

Dear Norma,

i am so sorry to read about your nephew,my thoughts are with you and your family at this very difficult time.A massive hug of support is sent to you and your nephew,love to you all