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Life after you or a loved one experiences a brain aneurysm may be different, but sharing your connection can provide hope to many others navigating recovery. We encourage you to share your journey, advice, and any other messages of support below.

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The Lisa Foundation

Shared Stories of Brain Aneurysms

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219 entries.
Joan Nokan Joan Nokan wrote on September 21, 2019 at 2:04 pm:
It was Easter Sunday morning and my sister was visiting my mother. She got out of bed, was nauseated and passed out on the floor. That Friday she had told a coworker she felt poorly, like "life was draining out of her". EMS was called and she was transported to the ER. She was intubated to maintain her airway and remained like that until all family was at her side. She was extubated and passed shortly after that.
Laura Sherlock Laura Sherlock from Johnston wrote on September 21, 2019 at 2:03 pm:
I am so sorry that Lisa passed away. At the age of 23, I had a brain aneurysm. I was somewhat aware of this as in my family my mother and aunt had them. I agree that it was the worst headache in the world. I had 1st surgery with a Silverstone clamp being put in my brain unfortunately it leaked, so the 2nd surgery was to put a clamp in my neck. That was in the spring of 1979. I recovered wonderfully. And have had a great life since
Laura scarfo Laura scarfo from Mooresville wrote on September 21, 2019 at 2:03 pm:
Just wanted to write a little something my mom died at 57 of a brain Aneurysm.my sister decided to have a test on her 57th birthday and was also diagnosed with a brain aneurysm! I had the time was 55 and she said we needed to be tested because we were family and it was hereditary. So at age 55 I was also diagnosed with a brain aneurysm. My sister had a stent put in, and I had a coil put in. The odds of me getting another one a very slim same for my sister. I urge everyone that has a family member with an aneurysm to get checked it’s an x-ray. It’s not worth falling down and losing your life when it’s preventable. I do not know that I have anything in my head I do not have any side effects. I am just blessed that my sister decided to do this. I urge anyone to have the test!
Lunda Lunda from Lisle wrote on September 21, 2019 at 1:58 pm:
No symptoms but family history MRI found two small ones. Had coiling for each one and am not free of them
Rebecca Rebecca from Cleveland Ohio wrote on July 7, 2019 at 10:49 pm:
On 4-21-17, I took my son to get X-rays. I was 37 years old. I’d had a bad headache the night before. I’ve had bad headaches most of my adult life. I’d had MRIs and neuro exams and nothing was ever found. I had no reason to suspect this was any different I started to feel funny during the x-rays, and felt a headache coming on suddenly. The headache started off as mild and quickly escalated. I wanted to get home to take some Aleve and lie down before work. I somehow managed to drive home as the headache and nausea increased. I got my son and I both inside. I went upstairs, took some Aleve, and fell down. The headache suddenly had become this demon of a thing that was easily the worst headache of my life. I threw up, and knew I was in some sort of crisis. I screamed for the babysitter who was able to call 911. She told them what I told her--that I thought I was having a stroke. I told her I was dying, to tell my family I loved them, and asked her to hold my hand. She told me I wasn't going to die, and cried along with me. I truly believed my number was up. She saved my life by being there and by calling 911. I am also grateful I wasn’t alone in what I thought were my final moments on this earth. It was lights out for me after that and the next 5-7 days have been pieced together by family and friends. I learned a few things after I woke up and got my bearings. 1) the headache I experienced is called a "thunderclap headache." After having it, the description seems perfect in a horrible way. 2) I had a subarachnoid hemorrhage (SAH) that was caused. Y an enormous aneurysm on my basilar artery. It was 1.5 cm. 3) For some reason, the hemorrhage stopped bleeding on its own before I made it into surgery. This is the only reason I'm alive and no one can explain why it happened. 4) 40% of people who suffer from SAH die before they reach the hospital. 5) 60% of those who survive have major deficits such as difficulty walking, talking, or performing their activities of daily living. 6) Other than being female, I have no risk factors for having an SAH. 7) An MRI I had done 7 years earlier showed no sign of the monster aneurysm. 8) This type of thing is potentially genetic. So now I get to worry about my immediate family having one, too. The ambulance arrived and apparently assumed this suburban mother of 4 was a heroin addict and gave me Narcan X 2 doses. This is the world we live in now. When I didn't respond, they loaded me up and took me to the nearby hospital (where I just was, getting X-rays for my son). A CT scan showed the enormous bleeding aneurysm. Some of my family made it to the hospital to see me very quickly before I was life flighted to the downtown main campus of the Cleveland Clinic. They told me I was awake and responding to them. I have no memory of any of this. I had emergency surgery to put platinum coils in the aneurysm to stop it from bleeding further. The next thing I remember, I woke up in the ICU a few days later with a tube in my throat and a severe headache. I had tubes everywhere. I had a Swan-Ganz catheter, and later, a PICC line. I had a drain coming out of my head called an EVD that drained my CSF and the blood from the aneurysm. I panicked with the tube down my throat. The worst part of the ICU easily was being awake and aware of being intubated and enduring deep endotrachial suctioning while alert. I begged to be sedated, for more pain meds. I chicken scratched on paper asking for drugs by name, asking for my fentanyl drip to be turned up. Every time, I was told I needed to be awake so my hourly neuro exam could be completed. It was hell. My first neuro exam that I remember, they shined a flashlight in my eyes and I felt my eyes going every which way. I was unable to focus. Everything was blurry and double. I saw concern in the doc's face and knew this meant nothing good. I had this symptom for months. I had to wear an eye patch and alternate eyes every two hours so I could see. I learned I had been extubated a few days earlier but had to be re-intubated immediately due to flash pulmonary edema. I also developed stress cardiomyopathy and my ejection fraction went into the 40's. I was started on intrathecal milrinone. I was told I'd still need to have 1-2 stents placed in the aneurysm. Everything was terrifying. The ventricles in my brain weren't reabsorbing the blood and the CSF. If that continued, I'd need a shunt. I had vasospasms which increased all my symptoms: confusion, headache, blurred vision, nausea. The neurosurgeon went back into the aneurysm and injected it with verapamil to try to stop the vasospasms. Eventually, they stopped. On 5-18 I received my shunt after CT scan showed my ventricles were still enlarged and I was too dependent on the EVD. I have a small scar on the back of my head and one in my abdomen from the shunt, which is permanent. I started physical therapy the next day. I had been in bed, not moving, for almost a month. They came every day, got me to slowly move my legs and neck around. Eventually they got me out of bed and to a chair. The fact that I could talk and walk meant that most of my neurological faculties were intact. Given the size of the aneurysm, this was incredible. Eventually I was moved from the ICU to a stepdown unit. Then, I was moved to a rehab facility where I spent the last three weeks. I had PT, OT, and speech therapy daily, most often, twice daily, where I worked hard to rid myself of the walker, and work on balance and endurance. In speech therapy, I worked on memory, word recall, problem solving, and even math. During this time, my husband took off work to take care of our brood of children. He had help, as we always do, and they all did a magnificent job, as we always strive to do. I eventually went home and continued my care as an outpatient. I got my stent placed about 2.5 months after my aneurysm rupture. The headaches were constant and relentless at first. I always had a dull throb in my forehead and temples. This sometimes escalates to a full on pounding without warning. Sometimes it feels like Michael Myers is stabbing me on top of my head over and over again. What no one talks about, at least that I’ve seen, is the profound effect strokes have on one’s mental health. I have anxiety, depression, and PTSD. I have this misunderstood thing called neurofatigue. There was a psychologist at my rehab facility, but she didn’t do much for me other than recommend I see someone when I was discharged. This area is one where the hospital systems need to improve. We need more mental health support for our stroke survivors.
Jesus Torruella Jesus Torruella from Oldbridge NJ wrote on June 25, 2019 at 7:19 pm:
Hi my name is Jesus Torruella. On June 6,2016 @ 11:35PM as we were getting ready for bed my wife began to ask me about something when I said to her hold babe my head is hurting. I remember the time as I had looked at the clock to see how late it was. All of a sudden I placed my hands over my ears as my head felt as if were about to explode. No sound just pain and I was gone, everything went dark and no sounds I was gone. But as it was told me weeks later I was out for three minutes vomited never opening my eyes yet was complaining about my head exploding and the lights were hurting my eyes. I only remembered waking up thirty six hours later in a dark room with a tube coming out of my head. It’s been three years now I had to retire as the systems were debilitating. I had no physical disability except when I would have involuntary muscle spasms. But that soon changed to sudobolbar type bouts. Then there was the loosing of my concession surrounding. Or I would suddenly start to loose the ability to breathe. Seizures and it would all manifest into something different; inability to speak eyes open hearing everyone as I go through one of my many and yet I can’t move speak and my breath is slipping away. I’ve been to many neurologist here and in NY and they were honest and said we haven’t studied many survivors to honestly say we know what’s going on. I accepted the fact I survived that I was blessed. My Surgen told me after my first follow up visit that he didn’t want to sound cruel or rude but that I literally shouldn’t have survived. That I did so by the grace of god. I believe him. Praise be to almighty God ?. To end this story we may not know exactly what or how long symptom will last but with your foundation and hopefully others we will one day prevent and diagnose aneurysm before they form. My was a subarachnoid aneurism
Barry Slomowicz Barry Slomowicz from Orlando wrote on June 15, 2019 at 1:11 pm:
To make a long story short...after waking up the morning of 8/1/11 out of a seizure I was brought to a local hospital where a ruptured Fusiform Brian Aneurysm was diagnosed. After spending 3 weeks in Neuro ICU I was released but at the time there really was no information readily available to help me to try and figure out what may happen next. Since then, over the last 6-7 years, the mortality rate has been dropping and the survival rate has been rising and it has resulted in numerous survivors wanting to tell their stories and share their experiences not only with our fellow survivors but additionally with caregivers, family and friends. With this infusion of knowledge, The Lisa Colagrossi Foundation is rapidly becoming a wealth of information in reference to not only the management of healing through it's members experiences but also the availability of reference materials.
Dawn Wright Dawn Wright from Lincoln wrote on June 5, 2019 at 9:10 am:
My new birthday happened on July 9th, 2014. I came home from my workout and had some extra time before going to some training that day so I was going slow about things. I had watered some plants outside and came back in and had what I now know is a Thunderclap Headache. I had seen on a TV show that if you ever need an ambulance you should unlock your front door while you can and so I did just that not really knowing if I would need one. It at first just felt like I had a muscle twinge in my neck but that quickly changed to the feeling of a race car in my brain. I called my husband who was at work and he said he was on the way but to call someone if I needed. I ended up getting sick and then crawling to the front entry and calling 911. They arrived right before my husband. My speech had already begun to slur. I remember asking how close we were to the hospital during the transport. My next memory is days later in a different hospital and still fully intubated after they had successfully coiled the aneurysm. I was hospitalized for 15 days. For 12 of them I was unable to eat because my swallow wasn't effective and they were not able to move me to do a swallow study because of vasospasms. I spent 3 weeks at a rehab center inpatient. I then had 5 weeks of outpatient services. I had to virtually learn how to do everything again because the bleed was on a nerve bundle. Because I had fast and great care in all stages I was blessed with the opportunity to recover. The best thing that sums up my recovery is to say that if my brain had not done the task since my "new birthday" my brain did not know how to do it. I have as pretty close to a full recovery as you can have. There are still sometimes that I find I haven't done something and so it will take a few tries to master what I am trying to do. I will hit my magic 5 years this summer and plan take a few moments to remember the great things that came from this journey. There are many that would not have happened if this had not been a part of my life. If you are still working on your journey know you are not alone and know that the brain can find a way - a new path with practice. Don't give up!!!
Bev Banks Bev Banks from Birmingham wrote on June 2, 2019 at 10:57 pm:
I am retired and never experienced an aneurysm myself. I am sharing the story of my lovely daughter who died from an aneurysm in June 2016 at the age of 38. She had been to several doctors regarding headaches, and was repeatedly told that she just needed to lose weight. On June 18, 2016, she and I spent a afternoon together. It was rare for us to have that much time together because she had begun working a part time job in addition to her full time job. She loved both jobs, and appreciated being able to handle her financial obligations on her own following a painful divorce. After spending the afternoon together, I recall waving goodbye and telling her that I loved her. She responded by saying she loved me too. Less that 24 hours later, her daughter, who was a college sophomore at the time, arrived home after being unable to reach her by phone. The aneurysm had taken her life. The coroner told me that she died within minutes of the rupture. I still think of her each and every day and the pain seems that it will last forever. Young adults, my message to you is to schedule regular check-ups and seek second and even third opinions if a problem continues.
Adam Adam from Crystal wrote on June 2, 2019 at 8:08 am:
Two years ago my son passed away in his sleep from a BA. He was only 16.
patricia alvarado morales patricia alvarado morales from Dgo. dgo. wrote on May 14, 2019 at 11:41 am:
ON JANUARY 26, 2019 MY HUSBAND ADUARDO RUIZ WAS WITH US IN DGO. DGO FOR THREE DAYS, HE WENT TO THE CITY OF MEXICO BECAUSE HERE STUDY ARRIVED ON 27 HE LIVES ONLY I NOTICE THAT HE HAD COME WELL AND ON THE DAY WE HAD NO COMMUNICATION I LEAVED BECAUSE I TOLD ITS TIRED OF THE TRIP, AND ON MONDAY 28 LE I CALL AND I DO NOT ANSWER A FRIEND WHO GOES TO SEEK HIM HOME AND DOES NOT OPEN THE DOOR I TELL YOU TO TELL THE HOUSEHOLD THAT YOU OPEN IT AND YOU FOUND IT DROP IN THE UNCONSCIOUS FLOOR YOU WERE TAKEN TO THE HOSPITAL AND I TRAVELED FROM DGO TO MEXICO THAT DAY IN THE NIGHT THE DOCTORS TELL ME THAT I SUFFERED A CEREBRAL ANEURISM, THEY HAD TO TELL ME THAT THEY HAD SUFFERED A VERY BIG HEMORRHAGE THAT WAS GOING TO OPERATE TO DRAIN HEMORRHAGE, BUT ON THE NEXT DAY THEY SAY THAT IT CAN NOT BE BECAUSE IT IS VERY DEEP HOPE TO HAVE IF IT REACTIONED, GIVEN 10% OF POSSIBILITIES OF LIVING I TOLD ME TO PREPARE FOR THE WORST THING WAS A VERY STRONG DAMAGE, BUT DAYS SAY ME WE WILL SEE HOW TO REACT ON DAY 11 TELL ME THAT THE YOU WILL SURVIVE FOR YOUR HEMORRHAGE AND YOU CAN NOT OPEN THE BRAIN BECAUSE IT WAS VERY DEEP, THAT WE HAD TO WAIT IF YOU WAS AWAKENING OR MORIA COULD LAST DAYS MONTHS OR YEARS WE DID NOT KNOW, THAT DAY WAS THE WORST OF MY LIFE BECAUSE I HAD TO DISCARD FROM HIM I SAID YOU I LOVE MY FLAQUITO BUT IF YOU HAVE TO GO AHEAD, OR IF YOU WANT TO CONTINUE HERE WITH YOU FIGHTING FOR YOU EVEN IF YOU WERE MONTHS OR YEARS I LOVE YOU AND I WILL BE HERE, AND YOU START TO MAKE THE PROCESSES TO MOVE IT TO DURANGO, DGO SO THAT IT WAS CLOSE TO THE FAMILY AND I SAID, BUT THE FALLECIO ON FEBRUARY 07, 2019, I THINK THAT THE DRS. THEY HAD TO HAVE DONE SOMETHING MORE TO OPERATE IT OR NOSE, AND I THINK IF IT WAS GOOD BECAUSE I PASSED THAT ONE WHY? ONLY GOD KNOWS IT AND I WOULD NOT LIKE THAT MORE GENETE WILL HAPPEN WHY I HAVE PASSED THE
Wendy Kliemann Wendy Kliemann from Melvindale wrote on April 25, 2019 at 7:23 am:
Due to having a mini stroke in 2010 I had a mri,and that was when they found my aneurysm. It's inoperable I saw to different neurosurgeons,both said the same thing because of the location in my brain stem it is to risky.It is 2mm. My last scan in 2013 it was 3mm. I have not had a scan since then because of it is growing I don't want to know there is nothing they can do for it.I am a real live ticking time bomb.
Myra Myra from Omak wrote on March 21, 2019 at 5:37 pm:
Hello ! I have had a total of 4 of Brian surgery , there is 2 on my left and 2 on the right . So I had them in 2015
Wyliette Johnson Wyliette Johnson from Bronx wrote on March 20, 2019 at 9:02 pm:
January 2015, I heard a pop in my head while talking to my adult son. I collapsed hard to the floor. All I could hear was my son screaming but I could not see him visually. I knew that I was having an aneurysm and I always knew I would have one. My younger sister had one and survived. That was the worse pain. The last thing I remember is hearing the EMS person saying this lady has no oxygen going to her brain. I was in a coma for 4 months. Each day my husband and son was told that it was touch and go. Westchester Medical Center saved my life along with the prayers from family. When i finally woke up, I knew nothing. I have told the rest of my siblings that aneurysms are hereditary. God bless Lisa and her family.
Andrea Anderson Andrea Anderson from Brooklyn wrote on March 20, 2019 at 7:32 pm:
I'm A survival Lady from an Brain aneurysm!, I gone under 15 hours of surgery, MY beautiful Dr. Eric Cardozo, Chairman Neurologist at Methodist Hospital, Brooklyn NY, has saved my life❤️,,, the ambulance brought me in with a B/p 200/150,,,,they announce ME dead and still breathing!,,,, Dr Cardozo was called in for surgery and arrive at 6am and asked the nurses"where's the young woman who came in,,,, they replied,"she's right there",,, Dr Cardozo walked over to me and asked"how do you feel",,, iiiiiiiiiii replied"I'm waiting on you, NOW let's go and fixed WHAT'S wrong,,,, I was high A's A kite,,, they sedated me with med's and I was floating,,,, the pain felt A's if someone picked up a building and place it right On top of my head!!!! Even the Tear's hurt!,,,,,1996",,,, April 1, and when my family was called, they thought I was playing A April fool's joke, that the hospital had to call them 3x's ,,,, and when they came ALL together the Tear's and sorrow!,,, Dr Cardozo gave them 3options:,,,, either She will DIE during surgery or brain dead or paralyzed,,,,, and today I'm A survival Lady with my Masters Degree,,,, and walking, talking, dancing and singing and humming sound and loving life. JEHOVAH BLESSED me with a lot of time to give to myself and make changes,,,,, Thank you for allowing me to share my world.?
Brandon Brandon from Wood-Ridge wrote on March 20, 2019 at 3:58 pm:
On April 8th 2018, I called out sick from work with a headache, spent the day in bed. Next morning I woke up and began the morning routine, getting my wife out the door for school, went outside to start her car and my vision was off, felt a little dizzy, thought maybe I got up too fast. Went back in the house and knew something was wrong, all of a sudden I felt as if I got stabbed in the back of the head! Had my wife call 911 immediately! The color started leaving my face and I became weak an unable to hold myself up. EMT’s, police, and volunteer firefighters took great care of me. I never lost consciousness but was out of it. Made it to the hospital, after a few tests my wife was told I had a ruptured brain aneurysm and needed emergency surgery. Spent the next 20 days in the ICU. If not for the incredible people involved throughout my ordeal I wouldn’t be here to tell my story. I was blessed with a full recovery, after rehab and hard work, I went back to work as a professional firefighter. Life is good, I’m one of the lucky ones, I do wonder why me when so many aren’t as fortunate? I’m so sorry for your loss, prayers to the Colagrossi family...
Maureen Brown Maureen Brown from Walden wrote on March 20, 2019 at 2:24 pm:
On December 1, 2017 I was preparing to go out when I sneezed, I suddenly felt my neck getting stiff and a headache starting, I cancelled my plans and decided to rest as I thought I pulled a neck muscle when I sneezed. Monday December 4, 2017 I decided to go to the ER because my neck was still stiff and I was experiencing the worst headache of my life, it was my birthday. Once I explained my symptoms to the ER doctor he immediately ordered a CAT scan and spinal tap, before long I was being transferred to another hospital that was more suited to care for the brain aneurysm they had discovered. The next morning I had a cerebral angiogram in which a second aneurysm was discovered, thankfully the large one behind my eye was able to be coiled the smaller second one located at the base of my brain was too small for coiling, I have annual angiograms so it can be monitored. I still don’t know why or what made me sneezed that day but it definitely saved my life. I feel like that birthday was the second time I was giving to start my life again.
Michelle Michelle from Spokane wrote on March 20, 2019 at 12:08 pm:
Hi, on November 30th 2017, I was in the shower when I experienced the worst pain in my life. I felt like someone either hit me in the back of my head with a 2x4 or got shot. The pain dropped me to my knees, when I could finally get rinsed and out of the shower, I had to crawl across the room to be able to sit down. I just sat there for a while until I could stand and look in the mirror to see if my facial features were even. They were, so stupidly I go to work until I can't stand it anymore and finally call the nurses hotline for my insurance. She told me to immediately go to the ER. After a CTSCAN and a spinal tap I was told that I had a 6mm aneurysm and needed to see a neurosurgeon. Luckily, my aneurysm didn't rupture and I was able to get it clipped March 21st 2017. Almost exactly a year later and I still am experiencing post craniotomy headaches and depression. But I'm very happy to be able to tell my story, but I still wonder why I was chosen to live when so many die from aneurysms they didn't even know they had.
Dawn Prue Dawn Prue from Apache Junction wrote on March 19, 2019 at 11:53 am:
I woke up on Thursday morning before my alarm clock with this horrible headache so I walked out to the kitchen to make some coffee. Then realized that I forgot to buy coffee the day before. I figured that that was why I had the headache, so I drank some ice tea.I got into the shower, and wondered how did I get shampoo in both eyes? When I got out of the shower, I looked in the mirror, and I had no white in either eye. Made my husband get up so we could go to work. Yes, I did stop and buy a coffee. Had the headache all day, nothing would put a dent in it. Friday was the same thing. Saturday, we had an evening BBQ with family, and I bumped heads with an adult niece, I thought maybe that would fix the headache. Nope. I went to bed that night in horrible pain, I prayed that God would please take the pain away. I woke up a month later with the right side of my head shaved. I had a subarachnoid ruptured communicating artery brain aneurysm at home, during the surgery to repair it, it ruptured twice. And that is my story.
Robin Remson Robin Remson from Riverview, wrote on March 18, 2019 at 9:30 am:
I work with children on the Autism Spectrum. November of 2014 my principal and I were in a room with a child who was having behavior difficulties. The short version is he was let go and went after me. I was hurt went to workers compensation, but never felt right. The right side of my face went numb. I was sent to a neurologist and then my mother had heart problems and I took care of her. I was suppose to have a cat scan, but never did. I took care of my mom and went back to work the middle of January. I received an email reminding me about the cat scan. I went and had it done and the neurologist went over the results and thought it was calcium. He sent me for an MRI and an MRA. I was sitting in the parking lot after the MRA and the neurologist ‘s office called and wanted me to come in that day. I hah never heard about brain aneurysms before, but that is what they told me I had. No history in my family that we were aware of. I can say that I was very emotional before I knew I had an aneurysm and I think for me that may have been a symptom. My interventionist’s office called the same day to get me in to see the doctor. My aneurysm was coiled 4 years ago on March 17, 2015. The aneurysm was 13 mm x 8mm x 8mm with a 3mm neck, I have 15 ft of platinum coils in my brain. Not that you want to be injured ..... that child saved my life. I am very blessed!

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The Lisa Foundation, a 501 (c)(3), is the leading private funder of Brain Aneurysm initiatives that directly or indirectly support awareness, education, research, and survivor support in the U.S.

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To foster a national dialogue and understanding around Brain Aneurysms and drive better patient outcomes through pioneering education, research, and support.

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Frankenmuth, MI 48734

info@lisafoundation.org

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