Aneurysm

Join the Conversation on
Aneurysm
778 people
0 stories
122 posts
  • About Aneurysm
  • Explore Our Newsletters
  • What's New in Aneurysm
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

    Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

    I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

    On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

    The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

    Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

    Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

    I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

    I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

    I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

    The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

    I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

    Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

    My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

    I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

    The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

    6 comments
    Post

    Physical pains

    Was just wondering if this happens to anyone else . If I get a headache I think I’m dying or have a brain tumor or an aneurysm, etc. if I get pain in my legs I think it’s a blood clot or something severe. Every pain I get I think I’m dying and it’s so bad I just lose it and call my mom who just says you’re not dying . And my boyfriend says I think If you were really dying you wouldn’t know. Well , these things aren’t helping me. I think I’m dying pretty much every day and it’s scary. My doctor , he just says this is normal with anxiety. This is no life to live. I’m not living if I feel like I’m always dying. I need help .

    11 comments
    Post
    See full photo

    “It doesn’t matter how slowly you go as long as you do not stop.” — Confucius

    A positive mindset can make all the difference, but staying positive and mindful when you crave immediate results can start to wear at even the most patient of people. It's also easy to feel you're falling short when progress doesn't come to you as quickly as first anticipated or desired. But it's vital to your long-term progress that you remember it doesn’t matter how slow you go, as long as you keep going. Whatever your goals are, momentum is still momentum. Keep the ball rolling. You're already farther ahead than you were yesterday!

    #NeverGiveUp #recoveryjourney #physicalrehabilitation #ProgressIsProgress #Dailyinspiration #selfcare #Stroke #Aneurysm #strokethriver #strokerecovery #Physicaldisability #settinggoals #Motivation #FindingForward

    Post
    See full photo

    We define strength in many different ways. It's easy to fall into the trap of thinking you're weak for not meeting a certain goal or target. It's easy to focus on shortcomings. It's easy to avoid starting a new journey or dedicating to an aspiration because of previous setbacks. But you can't settle for the easy way out. You have to try again! Remind yourself: you are NOT weak. You are NOT a failure. You WILL overcome.

    Remember: Strength doesn't come from what you can do. It comes from overcoming what you once thought you couldn't.

    #innerstrength #truestrength #Motivation #Dailyinspiration #aneurysmsurvivor #Survivor #Stroke #Strokesurvivor #StrokeSurvivorsNeverQuit #Aneurysm #AneurysmSurvivorsNeverQuit #FindingForward

    Post
    See full photo

    Hello, everyone, and thank you for stopping by to visit my new account. My name is Jeffrey Morse, and I’m here to tell you there’s life after life, but I’m getting ahead of myself. I was a U.S. Air Force veteran who worked—and still works—in commercial aviation. I’ve written a book, Finding Forward, about a life-altering journey that has changed me forever.

    Almost ten years ago, a life that I loved living was unexpectedly altered when I woke up from a lifesaving surgery paralyzed from the neck down. My first thoughts in panic from this trauma was to figure my way out of this devastating problem, but there was no instruction book for healing from paralysis. While lying in the recovery room, I realized my thoughts and actions going forward would hopefully one day become the chapters and inspiration to those who also find themselves on a similar path. What I’m saying here is that I chose not to give up or let phrases like “I can’t” into my vocabulary.

    Words like paralysis, stroke, or trauma (of any sort) are just words, and they by no means define who we are as human beings. If you’re finding that fate has chosen a new path along your journey of life, and you’re wondering why, look upon those new paths as a fresh start or a new beginning and set the word “why” off to the side for a while. These were my initial thoughts as I lay on a gurney, shut off from my entire body. Yes, I could have chosen to lie in panic, and my initial reaction was indeed that, but I chose a different path. My mind still worked; I could breathe, speak, see, and hear. Now all I needed was to create that first step in my mind and achieve it.

    My purpose in writing posts is to share that beginning and my path along the way to help others find their own path as well. I said to myself when my journey began that beyond writing this book, if I could just reach out and help one person beyond their own struggles to get started, then I did a good thing to inspire someone else to continue on with the gift of their own life.

    There is one other reason for reaching out here. One of the first goals I set on that first day was to motivate and inspire myself to fight on and reach this point one day. Nine and a half years later, every day of pain and struggle has been worth the effort. If I can do it, so can you!

    This initial post, like learning to walk again, is only the first step. My hope is that you will choose to walk with me along this new journey. Let’s all find forward together!

    Feel free to connect with me and share your story!

    #Strokesurvivor #neverquit #Survivor #persevere #FindingForward #Stroke #Aneurysm #aneurysmsurvivor

    5 comments
    Post

    Y'all This Holiday season I'm struggling #Depression #Grief

    It's December 17th and I don't have it in me to decorate for Christmas. I have a small Charlie Brown tree that's in a red bucket out. I bought some colorful battery operated lights to go on it, but have yet to buy the batteries. To put the lights on is about all I can manage. Forget the ornaments this year...everything is all packed up in my closet. I just don't feel like dragging it all out. Yet, I miss the decorations because it has brought me joy in what is a pretty hard month for me.

    December is hard for me, because 26 years ago on December 4th I lost my mom very suddenly. She died in her sleep of an aneurysm. My world hasn't been the same since. I was only 18 when she passed. She wouldn't want me sad and #depressed Each year since I've had to work hard to make it a good month. I miss her so. Her birthday is December 30th.

    I know that Christmas doesn't have to perfect and that it's perfectly fine to be a total mess. I'm trying to be kind and patient with myself. I cry a lot. At least I have plans to be with good friends on Christmas day. I'm blessed.

    I had hoped to escape the #Depression that comes around this time of year, buy sadly it found me and here I sit.

    I know the holidays are hard for a lot of people.

    Merry Christmas and Happy Holidays to those of you struggling. I see you. Also wishing the same to all here at this site.

    8 comments
    Post
    See full photo

    Pediatric Ascending Aortic Dilation/Aneurysm with hEDS diagnosis - uncommon and worrisome! #Aneurysm #EhlersDanlosSyndrome

    Hello all,

    I have been struggling the past few days with something really heavy on my mind and heart.

    I could use some friendly advice and love.

    I recently was triggered to remember something that I try not to think about a lot because it makes me cry and feel totally helpless.

    My son was diagnosed this year with a life-threatening condition called, Ascending Aortic Dilation/Aneurysm that has to be monitored every 6-12 months.

    Its 2.0.0.16 cm last we checked and the average adult aorta sits at 2.0.0.6 cm so it's already too big for his little body.

    For connective tissue diseases, I know to try and remain calm until it reaches 4.0.0.5 cm.

    Waiting 'til 5 -5.5 cm is not an option with fragile connective tissue.

    I've been reading medical journals since 5 am due to insomnia to better understand what we are up against...but it breaks my heart.

    I learned that the aneurysm can grow faster with connective tissue diseases...

    Doc told me eventually he will need the aortic replacement surgery... so I did some digging to learn about the process.

    There are only 300 surgeons in America who do this surgery and I don't think we're near any of the reputable ones.

    (The photo is a screenshot of a portion of another (grown) man's story published in a wall street journal describing the surgery process.

    Full story here: online.wsj.com/public/resources/documents/hb3.htm)

    My son is amazing. He's so incredibly intelligent and intuitive.

    He's 9 and he can't help but fill the room with joy.

    He's thin and translucent. He looks like the #VEDS poster child but tested negative for vEDS, #LDS, and #MFS.

    He is my motivation to become a doctor and keep pushing for change in the medical system to support patients with #RareDiseases because we lack support, care, and access to treatments and proper diagnosis.

    My son, my mother and I were all diagnosed with #HEDS this year.

    My mother has Aortic Sclerosis and Thrombocytosis.

    My son has PFO, Murmur, and Ascending Aortic Dilation and a clotting disorder similar to von wildebrands.

    I have PFO and POTS, paroxysmal tachycardia, and right axis deviation.

    We all have multi-value insufficiency/about 6 generations of heart and joint problems/familial hyperlipidemia.

    We are all currently undergoing whole genome sequencing to see what else could be going on since hEDS doesn't usually cause all this with the heart.

    It could be inherited familial thoracic aortic aneurysm. #TAA

    I just don't know what to think.

    I find out really soon and I'm a bit nervous.

    I'm prepared for the worst so that I don't get my hopes up for the best.

    Educating myself to make sure I can ask the right questions.

    But I feel so alone. I cant even find a support group online for this condition, esp pediatric.

    The thought of them having to put him as "clinically dead" for 45 min to complete the surgery is alarming.

    The fact that I may not be around by the time he needs it due my health issues scares me too.

    I need support

    8 comments
    Post
    See full photo

    Here we go again#artheals #Anxiety #avm #TBI

    I was sitting alone contemplating a thought,more of a pattern. I have been here before.im sitting here realizing in real time.This was identical to six months ago.Why does this keep happening? I plateau but never improve though, only more damage done and last for a shorter time till next episode.Each time, the pain is more pronounced, noticeable.Tolerable, but more frequently and common. I'm aware of when I'm sick, how my body adjusts and an inconvenience one day becomes normal after days.My baseline, is changing too frequently in my opinion.I am learning to dicifer the differences in a microbleed and a aneurysm.The pressure, location and sound are all factors. Where, how long, how I can or cant remember the few days after.. Is my speech garbled or ears hurt? My neck is loosing muscle which I was not expecting. The thyriod has damaged my heart to where my blood pressure will keep being an issue.Vascular wise, Im screwed. While having two major high mortality diseases, my phychy likes to play philosophy for days. Hiding things, playing peek a boo with memories.Holding court is self accountability to my worste attributes.I find Im justified in my anger, my issues. I own it.I don't want to explore it, it is too dark and ugly.
    Did you ever really put things to rest, if you still see them?