My name is Dorene, I hope everyone is the best they can be today…
3 Aneurism’s found February 26 2025 after a SCAD (ripping an artery near my heart. )Then a heart attack followed. Accidentally found the aneurysms in my brain. I got a stent in early June 6th of this year and I had to do cardio rehab somehow so I was doing that after the stent. I go back in December for another angiogram to find out how the stent is doing and the other two aneurysms that they did not remove. Breast cancer prior to this so there was chemo involved for about a year and after that things got tough so I’m not sure if that’s what caused this world or it is something genetic. Leaning towards genetic. Lots of medications for both problems. They seem to go hand-in-hand. I find the hardest thing to be your family worrying that you’re doing too much. Constantly being watched and hopes that I don’t explode. I’m not kidding. All the things that have happened the hardest part is people watching and having to live through it with you. I think I am a very happy person and I go through life the best I can. I play the guitar for Hospice and other things that have to do with Music. I hope everyone is as happy as they could possibly be in such a situation. It’s kind of a club that you’re forced into huh? I’ve been reading around. I don’t know if I’m in the right place but I guess I just had to say stuff. Thanks everyone.
Good morning and welcome to the club! Many members will say “the club nobody wants to belong to” but it’s good when we need support. I’ll give a proper welcome on Sundays by the way. You put this in a perfect place, kudos!
I don’t think I’ve ever heard of another member having SCAD so of course I had to look it up, enquiring minds issue. For other members I found it here Spontaneous coronary artery dissection (SCAD) - Symptoms and causes - Mayo Clinic which of course confuses me because it clearly states “ People who have SCAD often don’t have risk factors for heart disease, such as high blood pressure, high cholesterol or diabetes.” but then it states “ *Very high blood pressure. Severe high blood pressure can raise the risk of SCAD.” The article also says causes are unknown. My damaged brain thinks poop or get off the pot, can’t have it both ways. I’m often incorrect with no medical background, please take that into account.
My Neurosurgeon also leans towards genetics, she wanted all my family members to get an MRI/A only a great nephew did because he already had issues going on with his brain. A niece tried but was told by her neurologist to wait for the next migraine. Her medicine has controlled the migraines so it’s never happened. Other family members didn’t see that it might affect them. Ignorance is not bliss when it comes to cerebral aneurysms in my book. You might suggest to your family that they be imaged.
I think your outlook on life is amazing especially with what you’ve been through! As a great niece would say “Awesome sauce”. With your love of sharing music, you might be interested in this topic Music that inspires us. Add any you want, we keep it open for inspiration.
Family oh my gosh, I’ve learned they can be a blessing and a curse! BH was always snitching on me to my Neurosurgeon and I ended up with so many rules I can’t remember them all. It seems in the early years after ruptured every time I got a headache I was taken to the ER, a CT with contrast and a follow up to Dr. Q-W who would do an MRi/A. Some of those times had me back on the table for a angiogram and the week following the angioplasty for a repair attempt. One of my nieces wasn’t any better but snitched to BH. Now we’ve got a licensed electrician, handyman, friend who worries all the time. On bad days he either texts or calls BH, tells me to rest, reminds me to drink water and take medicine. I ended up having to tell BH to ease up and let me live my life the best I can for as long as I can. Mr. Curley is as thick headed as I am but he watches me like a hawk. He gives great hugs too!
Really happy to read your new topic this morning! You have an amazingly wonderful attitude. Thank you for sharing more of your story I find it very inspirational.
You have dealt with a lot! Ahh, I like your names of people. I understand the worries, it’s about how much they care but wowzer, I’m not standing around watching life! I’ve learned to ask for help and, that was hard for me. They used to call me The iron lady, always was fit and very strong. I work out, but was a big weight lifter along with lots of extreme sports. No more weights and crazy sports but, I adjusted to other things.Honestly. I was very bummed at first. Mad. Seemed mad a lot. New feeling to be a constant one.I learned that if you mentally go with the flow, it is so much easier. (learning every day) Sometimes it’s hard to accept what happens. But, life is good. No one said a good life would be easy. And I have a good life. Thank you for being here. I come and go like the wind, but I appreciate everything and everyone here. We always should be living the best life we can, but there is something that comes from having people tell you to change your way of life.. (anger at first for me then , understanding) you can either live your life resisting it or, do your best zigzag in around and live, be the best “you” ever. If one day all you can do is get dressed then you read or knit or do whatever you can. Sit and watch the birds. Sleep.. and just try not worry. If you have to work, talk to your bosses see what you can do about how you conduct you work shift maybe they will help! I really wanted to keep all of the health issues in my life to myself, but people really do want to help. And it does.
Breast Cancer Walk! I Couldn’t walk so I played and sang people thru the hills. (Eye of the tiger beginning on the hill everyone knows it!)
It’s the zig zag you guys..
I am also a breast cancer survivor. (the sign said these boobs were made for walking.) so I played these boots were made for walking.! Just change that one word..
So now I have Nancy Sinatra and Christoper Cross in my head today!. Great picture by the way! I know you probably already know how effective music can be for us in our healing journey. Lots of research to back it up.
Mama Marvie (MIL) had a double radical mastectomy back in the early 90’s. Billy Ed (FIL) would tell folks they’re old, they tire easily so he just throws his teeth on the bed, she throws her boobs next to them, let them go at it so they can get some sleep. When we bought our first home, it had an octagonal swimming pool that was 5’ deep, and about 24’ in width, no place to stand up for me without holding on to the sides and being in my tippy toes. Anyhow I was in the very back of our yard and hear BH hollering “Mama just stand up, stand up Mama! I drop my pruners and dash up the 200’, see her flailing and dove in. Got to her just from the shallow dive and picked her up by the waist so she could get her feet under her. Then I hear BH yelling at her to let me go. She was using me to balance herself and I couldn’t get my head above water with her arm and weight on top of my head. Took her several minutes to figure out what she was doing and finally moved her arm. I’m really glad my old scuba instructor made us practice holding our breath for an extended period, really glad. Mama Marvie had tried swimming under the water, but without the muscles, she couldn’t do a breast stroke anymore. BH and Mama Marvie started hollering back and forth, fear made them both angry. They finally slowed down enough for me to ask BH why BH didn’t walk into the pool. BH looked at me like I’d lost my ever loving mind and said “All Mama needed to do was stand up”.
It was a good lesson for me. Sometimes we just need to stand up. Come and go as you please. When you need us, we’ll be here. When you feel like supporting someone, we’ll be here. You’re absolutely correct in asking for help. Something I continue to try learning.
What a journey you have had! I completely agree with you that the best approach through all of our life journeys is gratitude and joy. I completely agree that our life history teaches us that - as well as what is truly important; one of the blessings that having an aneurysm (or multiple ones such as you have!) teaches us!
However, I did want to chime in regarding your comment that the hardest part is watching your family watch you. 100% agree! I mean, I totally understand why they react they do given what they went through worrying about me! For me, it has taken time, but slowly I am getting back to being an adult again - baby steps - but we’re getting there! [Being a GenXer, independence is something I thrive on, so I totally get it!]
Loved the picture of you! That’s fantastic! Keep those boots on and now you get to step on all those aneurysms!!!
Sometimes I just get so overwhelmed with thoughts and then snap out of it every time, so far.
I try to laugh as much as possible. When I was in the hospital after the SCAD event and I found all this aneurysm stuff out , I had a roommate. Our curtain was closed, but eventually, we opened it. She was in a rough boat as I was at that moment and we were talking about, well.. This was not the way we wanted to leave.. and I said a few really hilarious things like let’s get T-shirts and get our asses out of here. They can Say “if you find us we were trying something new and fun.” We laughed so bad. She had a slight cough and the nurses came in and we actually got yelled at and I mean.. ok well, I got yelled at.
I am a survivor of 2 brain aneurysms. 1st one ruptured and was coiled. Second one was found in August of 2022 & I had to wait till December for surgeons to decide if they were going to fix it. When diagnosed it was 4.4 mm by December it had grown to 8.1 mm. Which meant another craniotomy in Jan 2023. Day to day living while knowing it was in there growing bigger everyday was no fun. Scared to hiccup , change altitude, but here I am in 2025 still walking & talking, laughing, singing , music helps so much. Hope you are healing & feeling well.
That’s hilarious! I would’ve kept the curtain opened between us if you were in the bed next to me! Being my oppositional to authority figures self (self diagnosis) I probably would have asked the RNs if they’d ever tried laughing as a form of medicine.
Man, it is the hardest part for me, the mental part. December 5th for me the first “have they grown?” And are they happy with the stent? I am glad to hear your living, loving and laughing! Yes! A moment, a lifetime. It’s all the moments that make up the life, good and bad. Hopefully more of the good! TinaBee.. continued health and laughter!
Dorene
I’m not sure if I did this right after reading and TinaBees story.
Just in case you have any other ideas, we recently started a funny t-shirt series - although yours would be the first in original contributions!
I completely get that you have to be at the right stage of your journey to even want to read this posting, but, if you are, as Oct20 said, we all need a good belly laugh (laughter is the best medicine, right?)!
Welcome to the group, I have had two SCad events with heart attacks and I was scanned for aneurysms following my first MI (2023) and I was told I was ok, but last Sept an aneurysm ruptured in my brain and caused SAH and hydrocephalus. My consultant went back and checked MRIs they did and said it must have been below the resolution ?? They think I probably have Elhers danolas or some other genetic condition. But they managed to lose my blood samples which were collected for genetic tests in 2023. So waiting for the new samples to be done.
You have been through a lot, so my thoughts are with you xxx
Thank you for saying hey and telling me some of your story. I am still circling thru my first year. I see Border collie Mum! Smart Dogs they are!!
December 5th I go for the EV Angiography bilateral ( and bunch of other words haha ) This will be my first image since they put the stent in for one of the Aneurysms. As far as February Scad Attack? Pills (statins)and more to try . Kind of a crap shoot and was doing cardio rehab at the same time. I was more scared about the aneurysms and always sick trying the statins.This procedure coming up I guess this is when I find out if things have grown and if there is any more. I’m trying hard not be nervous about all things Coronary Artery but it’s getting close to procedure time. Thank you for talking to me Border Collies mum! And Everyone. Just wonderful. I don’t come on very much because I can’t tell if I make people nervous or not or if it makes me nervous..! so I try not to get buried in here this time, I have not been coming on much. When I had cancer, I went on the support site a lot and then I think I got overwhelmed so, I don’t want to sound or be rude in any way to anyone. People are so wonderful and helpful..
I forgot to tell you, my favorite T-shirt when I was a kid said on the front, I’ll try anything once. And when I walked by the back said ..maybe twice..
You won’t make any of us nervous so come on as you want, we are always here when you need us. Well, honestly you may have to wait for several hours depending on time zones etc. None of us want to make you nervous. Please remember to breathe. Check on @FinWhaleFan and see all the different ways posted for relaxation breathing and mindfulness they do help if practiced a lot. Just click on the type “@FinWhaleFan” everything posted should come up.
Almost all if not all of us had follow up angiograms post stent placement so we get what you’re experiencing. Remember to hydrate well and stay hydrated/eat protein/rest afterwards. I promise it will help, I’ve had several and it’s what my Neurosurgeon has told me to do. She’s really smart, except with the first Internet appointment I had with her during the pandemic. Which was hilarious when she told us that turning the camera on “it wasn’t rocket science” and BH said “says the brain surgeon”. She did manage to get it though, eventually with help from a few staff members
I think I shared with you I couldn’t take any of the Statins, tried them all. Didn’t know the leg cramping was a side effect until the pharmacist refused to do a refill and called the PCP and Carsiologist immediately. They started on other meds Cholesterol medications: Consider the options - Mayo Clinic. I was finally put on Repatha expensive and my PCP had to show I’d tried most everything else. I’ve found I only need to take a shot once a month to keep it all in check, twice a month was making my good cholesterol drop way too much. Found that out when I forgot to take it.. Hopefully they’ll find one that works for you.
Please let us know when you’re having your procedure and how you do afterwards.
I don’t know what to say except Thank you and that’s just not enough…
I do try relaxing every day.. I have to learn how to do it (I’m a mover) This time, I do not know why I’m so nervous. I’ll keep working on that Zen word.
I hope everyone all does the best they can with the day!
I echo what @Moltroub said - you don’t make me nervous in the slightest, so you just do what is right FOR YOU! We will be here whenever you need us!
Like you, learning to relax is a journey for me as well. I am FAR from perfect at it, and I know I should be doing it more often than I do. The good news is that I also do it FAR more than I did pre-rupture, so this is just part of the journey for all of us! It sounds like you have your own routine, and I don’t to interfere with that. There are tons of them out there so we (collectively) can point you to some others should that be of any interest.
In the meantime, we’ll keep sending good energy your way. I totally get why December 5th is so nerve-wracking, but no matter what the news is, your medical team will have a Plan B, and a Plan C if things did not go textbook. In the meantime, enjoy the present!
(the sign said these boobs were made for walking.) so I played these boots were made for walking.! Just change that one word.. 
type “
. Hopefully they’ll find one that works for you.