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.
Mary Ann Gaida
from Clarkston wrote on September 21, 2019 at 4:28 pm
Yes I am a walking miracle. Thank the Lord. On January 12, 2013 my husband and I decided to return a recliner to the store because it did not fit with our décor. We both carried it to our car and struggled to put it in back of our car. After that I suddenly got a terrible headache. It felt like my head was a football on fire in the back. I went back into the house and put my hands under my chin and told my husband to call 911. As I waited, I thought did I jump the gun. They took me all the way to Beaumont in Troy, Michigan. I live in Clarkston Michigan. There I laid for 6 hours. Throwing up and miserable. I guess they assumed I had a bad neck strain and the flu was going around so this is probably what they assumed. My daughter who lived in Chicago told them by phone that my brother dyed of a Brain Aneurysm and they said they couldn't talk to her. I screamed for a doctor but to no avail. That's all I remember but they finally gave me more tests I was told and they took me by ambulance to Beaumont in Royal Oak, Michigan. None of this I remember because they put me out. The next time I awoke they told me I had a ruptured brain aneurysm. I stayed in the hospital for 10 days and here I am today. I am so lucky to be alive. I have lost a lot of memory from the past, but who knows it could be old age. I am 69. lol The one thing I tell everyone, listen to your BODY!! Also, I lost a brother at the age of 58 of a Brain aneurysm and his 40 year old son had one and he had the clipping. I had the coiling from Dr. Mick at Royal Oak Beaumont Hospital. He is GREAT. I really do BELIEVE that this is Genetic. So if someone in your family had one you should be checked out with a MRA. I get one every year for a follow up. As of now I am doing good, but next week I will have my yearly MRA so we will see. I hope by telling my story this will help someone out there. AMEN.
from Elkhorn wrote on September 21, 2019 at 3:18 pm
My grandson had an aneurysm that burst in his brain when he was 8 years old. He spent 6 months in the hospital, had part of his skull removed to relieve the pressure on his brain and a shunt put in to drain excess fluid. He is now 11, and he recently had the shunt removed which they replaced with medication. He still has very little mobility and cannot speak. We knew nothing about brain aneurysms before this happened to him. Thank you for bringing awareness about this condition to the world. I wonder how many others had children as young as my grandson that this has happened to. My son and daughter-in-law are doing an awesome job caring for him and we wish we could do more but we live quite a distance away. We pray every day that our grandson could be restored to the smart, lively, independent boy that he was. Right now he is such a trooper and has to endure so much as a result of his condition. I believe it is his strong fighting spirit and the love and care of his parents and God ‘s grace that keeps him going.
from Santa Monica wrote on September 21, 2019 at 3:06 pm
I read through a number of stories from survivors and noticed the common thread of wanting to help others avoid or be aware of stroke symptoms before they become a reality. Without a long story Blood Pressure plays a key role in these stories. I was told 130/135 was normal which they now know is 120 to be normal. I came home from work and it was just another typical demanding day. I spent some time with my wife and before retiring i got up for one more bathroom call and everything went out as I went unconscious and fell. I tried to get up, I called out to my wife and she tried to help me up but my core strength was gone and i couldn't get up. Little did i know the aneurysm had occurred. But then I drooled and I knew immediately i had had a stroke because my father had three strokes and drooled. The last stroke for him proved fatal. My wife called 911. I was taken to UCLA in westwood , fortunately for me thats the number one facility for a stroke attack. My left side failed fully including my left lung. A massive stroke, and an emergency tracheotomy and a stomach tube and into an induced coma so the brain could reabsorb the blood as the bleed was more central in my brain, not an easy operation. Coming out of the coma i couldn't talk or use my left side totally bedridden. That was the start of whats become a four year journey.. But the odds of not making it were 60/40 so im ahead so to say. But i wouldnt wish this on anyone. So pay attention to your blood pressure and keep your blood vessels as clean as you can. LonTinney
from Sunnyvale wrote on September 21, 2019 at 2:45 pm
I am a mother of 4 boys. At the time of my aneurysm my oldest was 9 and my youngest was 1. I spent the day of my aneurysm at my babysitters graduation. I had driven her family an hour to the graduation and back. I had never met them before and couldn’t pick them out now. It was at the dinner that my husband said my eyes rolled back into my head and I fell out of the chair. I remember nothing except my nightmare about missing my sons 5th grade promotion. I was kept in a coma for a couple of weeks. From mid May to mid June 2011 I was in the ICU. I moved to rehab right before July 4. I went home in August. Life has been quite a challenge. I have right side weakness. I can no longer run. I just learned about neurofatigue which explains some things for me. I am so grateful that I have been here for my boys. I’m sad that my abilities were diminished so I could not do as much as I would have liked but the alternative was much worse. My oldest is now 18 and my youngest is 10. Thank God I survived!
from Corona Del Mar wrote on September 21, 2019 at 2:43 pm
FYI. Check this website; HHT.org
It is a vascular disease. .(50/50chance to pass on) HHT HAS MANY CENTERS OF SPECIALTY AROUND THE COUNTRY AND I URGE EVERYONE WITH AN AFFECTED RELATIVE, TO GET TESTED AT ONE OF THIS CENTERS..
PLEASE LOOK FOR THE NEAREST CENTER..... GO TO: ”HHT.ORG”
I HAD AN ANEURYSM THAT RUPTURED AND MY SON AT AGE 6YRS HAD A HEMORRHAGE. We are both lucky to be here and healthy. Now we are very active members in HHT.
I DO NOT KNOW WHICH OF MY RELATIVES HAD HHT... BUT IT COULD SHOW AS LITTLE SIGN AS MIGRAINES...Your organization is a blessing. HOWEVER, SOME AFFECTED PEOPLE MIGHT HAVE HHT AND NEED FUTHER TREATMENTS.....AVM’S NEED TREATMENTS since they show up in other organs and can get treated if getting to an HHT Center. Best wishes!
from Coatesville wrote on September 21, 2019 at 2:35 pm
My story is nothing short of a miracle. On June 24, 2013, as I left the shower I experienced what I would called a severe and unique headache and laid my head on the floor. If I were home alone, I suspect I would have simply laid down and died. Fortunately, my wife saw something very wrong in my eyes and called an ambulance. I had no memory after my head on the floor until the rehab. My blood clotted which was a good thing if I got to a hospital quickly which I did. A day earlier I was on business in CT and would have simply gone back to my hotel room and died. I have to believe this was Devine intervention. I was in the ICU for a couple of weeks without moving. I did go back and thank everyone who helped me in ICU but unfortunately I did not remember a face. When I questioned my psychologist that I might have thought I could not handle this and caused my loss of memory. His response was that I just short-circuited. Bottom line, my wife saved my life that day. Unfortunately, we have brilliant neurosurgeons, but I receive very little info as to the cause. It was proposed to be smoking and possibly hereditary. Needless to say, I no longer smoke, but because my father had experienced multiple strokes that no one knew about, I believe the heredity issue is more the cause. Both my children have been checked and neither of them have any signs of an aneurysm. To conclude, I can only believe God left me live for a reason
from Cocoa Beach, FL wrote on September 21, 2019 at 2:33 pm
Cocoa Beach, FL
Brain Aneurysm------Age 15
I was out surfing in Ocean City Maryland and without any notice, I had a brain aneurysm.
I almost drowned but was put out to the beach where I was transported to the local hospital.
I was then helicoptered to Walter Reed Army Hospital (stepfather was a retired Lt. Col) and tested.
Amazing that one of the best neurosurgeons in the world just so happen to be stationed at Walter Reed.
He transferred two weeks after he had operated on me.
My mother was told that because the aneurysm was in the lower stem of the brain (vital organ section),
my chance of living was 1 in 100 and "if" I survived, I would be a vegetable.
Nine months later I was surfing again and still surf today at age 65.
I have been married for 43 years, have three daughters and five grandsons.
Only by the Grace and Mercy of God and I here today to write this.
from St Peters, Mo wrote on September 21, 2019 at 2:06 pm
At age 28 I lost my mom, Sue, who was 49 years old to a brain aneurysm. She was fine, then she wasn't, then she was on life support. 8 hours later the family was saying goodbye. It's shocking to me even 29 years later how healthy she was and how fast she was gone from us. My son had just turned 1. Thank you for making others aware of the signs. Although I can still hear my mom's voice in my head I would've loved to share life on earth with her much longer.
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.
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
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!
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
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.
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
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.
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!!!
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.
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
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
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.