I had my first brain surgery in November 1998 I have polycystic kidney disease and unforently pkd patients can get berry aneurysm what I thought was a super migraine turn out to be aneurysm . My kidney doctor told me to get to the ER ASAP which I did later on I always remember his words you know when the big guy himself comes something is wrong. I was lucky cause it did not rupture but I was having blood pressures problems Anyway I had time to think about it if I was going to do anything . I went to a neurosurgeon after deciding I was getting something done well to my surprise I had more than one aneurysm but at this time we were concern about the big one. We'll that surgery went well I was like no problems I had the aneurysm clipped very long surgery of 8 hours. Well jump ahead February of 1999 I woke up to call a prescription in my husband heard me he kept saying talk again my speech was all garble he call the neuro went to one hospital they took me by ambulance to another seem the little aneurysm they were not so concern about wanted to cause a problem yep it was a bleeder this time I did not fair to good I had to relearn to walk and talk again I did so much therapy at home from learning to wash dishes to bathing myself in this surgery I started having seizures never before have I had a seizure so years of seizure meds until I went to a new neurologist and I found out about the vagus nerve stimulator which I have had for almost 10 years I do not have to rake seizure meds anymore I have come so far my biggest problem is cognitive issues and some other problems I do not drive anymore and wor is out of the quetion. but I treasure each day I give credit to my husband and to a therapist that I been going to since my second surgery in 1999. I use to talk on another board along time ago but got away from it thought maybe I could help someone with the experience I have went through and we can always learn new things from each other.
A little about me I am married to a wonderful guy and we have 3 grown kids and 4 grandkids and the little dog in my profile is my Izzie we have had chihuahuas ofr the last 20 years and two of them I had when I was going through my first harder years after the brain surgies they would be there and lay on me when I had seizures I know sometime chihuahua get a bad rap for being little yappers but I can tell you they are very protective of ther family and they know when you are sick.
I too have PKD it was diagnosed when I was 16 Im now 54 but have discovered 2 small 3.9mm and 5.4mm aneurysms through MRI. I have a neurosurgeon who Im seeing in May and have had a private meeting also with another one who was top guy. My indecision is that my risk now of not doing anything about them is just about as much risk as having surgeon (coiling or clipping). life has been on hold and the emotional stuff is hard to bare. Im a well woman and always taken care of my health - not smoking and healthy eating so Im loathed to take the risk of surgery. They said I could be monitored and then of course if they grow or more come Im gonna be forced to do something.. I cant believe Ive been walking around with these horrible things growing and wonder how many other PKD patients are also in the dark about brain aneurysms. Regards Andrea
Patty...a belated welcome...my brain activities and memory do not function well...once distracted...it can be gone for a long, long time...
I have been friends w/a family of PKD...four children of paternal connection... Two sisters went thru years of a PKD study...just talked w/one recently and forgot to ask if they have results yet... Several years back, she sent PKD data to another member here w/familial connection to PKD...
Is there a PKD Group site here? We hear so much about the potential of aneurysms w/PKD...
When I think of my friends and their activity...they were so aware of aneurysms before I knew its name... I do not have pkd...Can remember years back of their walk-a-thons, etc...
Wishing you best... of connections to both pkd and BAs...
Welcome Andrea I can understand how you feel i know when I first found out I felt like a ticking tom-bomb it is so hard with the wait to see what happen they say they can monitor them the advice I can give you when they monitor it if they have you doing angiogram every couple of years be careful with that my nephrologist had me stop getting them because I was getting so many and that dye they use is not good for our kidneys and not to many cat scan with contrast I have been asking to do it without the contrast now I know they see more with the contrast there is a a narrative site about people who had aneurysm not all of them have had pkd some of it can give you knowledge but some can scare you if you just type I. Aneurysm narratives it a wake forest site my narrative on there is I felt like a time bomb
Thanks for welcome pat a lot of people don’t know about pkd but it is quite common disease but I do t think a lot of people know about it.
"PKD is more common than sickle cell anemia, Down syndrome, muscular dystrophy, Huntington’s disease, hemophilia and cysti fibrosis combined, yet all these diseases
are more well-known,"
Out of my mother 7 sibling 6 of them had pkd out of my sibling 3 out of 4 of us.my brother had a kidney transplant 2 years ago I have a lot of relatives in New York on the transplant list who have waited along time my brother is in New Mexico the wait is not as long there
I know dialysis and a transplant in my future it will be a blessing if something is found by then to stop that. Sorry to hear you have family and friends that have to deal with the pkd I wish this on nobody at least a couple of tears ago they ground the gene that causes it.