My Story

      My name is Kristin Conley; I am the Founder and Director of “The Multiple Aneurysm Awareness Foundation.”  On September 11, 2013, I was diagnosed with multiple aneurysms and a P.A.V.M. (pulmonary arteriovenous malformation) during an emergency examination for unrelated conditions. September 16, it was confirmed that I had a large aneurysm and a smaller aneurysm within my splenic hilum attached to the splenic artery accompanied by a arteriovenous malformation (intrasplenic and splenic artery aneurysm).  The aneurysm located on the outside of my spleen on the artery with the malformation was very dangerous. The blood had stopped flowing through the splenic vein all together and each time my heart beat the malformation allowed the blood to empty from the vein into the artery and directly into the aneurysm. It was like my spleen literally had its own heartbeat! 
​ Along with these conditions, they had found aneurysms in my liver also in the hilar region and my lower lobe in my right lung accompanied by the PAVM. I was put in for an emergency Splenectomy and Cholecysectomy, which were performed on October 4, 2013 and I continue to be monitored for the remaining aneurysms. I was very lucky the Doctors identified the splenic artery aneurysms when they did. The aneurysms had grown large, become quite thin and were on the verge of rupturing. I was a walking time bomb waiting to go off at any moment.
I am so grateful for my life today and have vowed to make a difference for others who have similar conditions. Living with aneurysms or aneurysm related life changes can be extremely difficult and emotionally taxing. My life was turned upside down after this event and I am battling multiple conditions, which at this time they cannot fully diagnose. I am in the process of undergoing genetics testing through the University of Virginia for aneurysm causing genes. They are looking to see if I have a disease which is causing me to develop some of my aneurysms and other vascular anomalies.

I also suffer from Narcolepsy/Cataplexy, Epilepsy (petit mal), Raynaud's Phenomenon, Hyper-mobility of my joints (Ehler-Danlos Syndrome not typed yet), Temporal Mandibular Joint Dysfunction (TMJ but my jaw joints deviate out of socket constantly), very short stature with a limb length discrepancy, SVT, IBS and other conditions. I suffer regular injuries to my joints and am in physical therapy twice a week at this point; have been since February. I have gone from weighing 135 to 94 lbs since December and cannot gain weight no matter what I do now. So all I hope is that through this experience they can find out what I have and use my experience to help others not have to experience what I have in the way that I am experiencing it. I want to use my experience to help anyone who is willing to accept my help!

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Rebel Girl, I cannot even begin to put into words how much I feel like you are speaking words right out of my own mouth. So many of your complaints, they are my own. The migraines, TMJD, hearing problems, etc. I am so sorry that you have to endure such a devastating disease and you are right on it being hard. Sometimes it truly is completely invisible.

I don't have mitrovalve prolapse at this point, just had an echo done. I do have my L5 fusing to my S1, limb lenth discrepancy, straightening of my lordosis, severe weight loss which had a sudden onset. I have lost 42 lbs since November while trying to gain weight :( The arthritis is a pain and I have degenerative join disease, at the mere age of 29.
As for the husband, I hope and pray that he comes around. Does he go to appointments with you? Does he want to learn? I have not tried dating really since all of this started a couple years ago so I am not sure how it works. However, my family is quite a pain, that is the closest I can get in that area. :(

For some reason a bunch of words are cut off from your story. Would love to read it though.

~ Carol

I never even noticed that lol. Thank you for pointing it out. You have to love Narcolepsy. I will fix it as soon as I get a chance :)

As a sir here 10 years past my multiple ruptures in severe pain in various areas of my body, both due to the aneurysms and age, I read a post like yours and think, "but for the grace of God, go I"

There are so many things that can be attributed to residual effects of our events. If you have any concerns you need to talk to your Neuro and General Practitioner to find out if the symptom is in fact a residual effect or a new symptom of something else.

Thank you and yes, I am under a lot of care. I am being seen by 14 specialists and 2 teaching hospitals now in Virginia. It isn't easy and the traveling can really get to you at times, but I am so grateful that I am being taken care of in the way I am. I am currently waiting for results from some genetic testing that was done to see which condition I actually have.

Where were your ruptures?

right side brain. Sounds like you have great care there. This far down the road from my ruptures, I'm pretty much on my own now. I inherited my Mother's house in Ohio and can't get it sold so can't get Medicaid to help with medicine or Drs. and am going off my meds one at a time as I run out. So far have been able to keep my epilepsy med. Seizures were a result of the scar tissue from the brain surgury and rupture. Think I'll just plant my happy butt in the ER if I run out of it and tell them I want to be in a safe place when I start having seizures. They will either lock me up next door in the psyche unit where I will be given my meds, put me in th county jail, where again I'll be given my meds or I will call the news and leak the story about the crazy old lady who refuses to leave the ER b/c she is afraid she will have a seizure in an unsafe place and all of the govt. agencies told me I don't have a baby so I don't qualify for medical help. I'm DISABLED!! No, I'm not a baby maker. I was mart enough at 25 to know I couldn't afford more than the 2 I had so I got my tubes tied. Never occurred to me the govt. might punish me for making a good parenting and economical decision. OH BTW, I am bi polar too. Don't know if that is purely genetics or from the ruptures as well. Don't know anything about my biological father so there is a glitch in finding anything about him.

I am so sorry to hear this. I wish there was something I could do to help you. I know how important medications are and especially ones for epilepsy. Is there no organization in your area to reach out to for help? Is there any way I can help you look for help?