9 and 16 April 2023 new members

Yep, I didn’t welcome last week. It was Eater Sunday and we had company come over for breakfast, early. So happy belated Easter, Passover and Ramadan!

Starting out with @Lillana who is up in Oregon. Alana had a subarachnoid hemorrhage (SAH) on her ACoA (Anterior Communicating Artery). She was coiled and a VP (ventriculoperitoneal) shunt was used to drain the excess fluid a year ago. Alana says has time goes on she feels everything is getting worse and doesn’t know where to get help to figure things out as she’s “feeling lost in her head most days”. We can give you some support Alana, just ask!

@MLF is right here in NC! Hey Michelle! She had a ruptured aneurysm back in March 2011 and treated with a PED (Pipeline Embolization Device). Michelle had damage on both sides of her prefrontal cortex and couldn’t go back to work. That didn’t stop her! She now house sits other people’s pets while they are on vacation. Great work around! Can’t wait to read more of your story!

@constance is up in Michigan. Constance also ruptured and it didn’t stop her! She got divorced, went back to work and joined a rock band! We want to hear more, come start a topic!

@Joy is up in Virginia who ruptured two years ago. She has a pretty full life with a husband of 51 years, 2 children, 6 grandchildren and 2 great grandchildren! Her family knows she has problems but don’t understand. She’s done really well yet couldn’t explain her issues until she found d an article that covered them all. Unfortunately, she doesn’t talk to her family about it because she doesn’t know how to explain what’s going on. She’s never been a depressed person but is questioning it now. She’s been reading other people’s posts and knows she isn’t alone. Come talk to us Joy, just start a new topic, we certainly can help support you. Maybe we can help you find a way to talk to your family.

@ashley820 is up in New York. Ashley has had lifelong ocular migraines and fortunate to have a good neurologist. The neurologist told her she had a silent stroke and more work up showed a 2.5mm vertebral artery aneurysm which was clipped this February. She had a seizure a week after the clipping due to an epidural hematoma (bleeding between the skull and dura matter). A few weeks later she had stroke like symptoms and ended back at the hospital. That’s certainly a lot on her young plate! Ashley come talk to us, we are here to support you!

@Chad is in the Eastern region of the United States. Chad has already posted found here 6 year AVM survivor - #4 by Moltroub. Chad is a 6 year survivor of an AVM. He is on blood pressure meds and Lexapro. He was in hospital just shy of a month after the first surgery. Chad had another surgery and ended up with pneumonia twice which meant more to recover from. Chad is looking for others with the same experience and advice. Whilst there is an AVM support group (https://avmsurvivors.org/), we don’t mind you joining Chad and hope we can help in some way.

@Angel is in Virginia. Angel has had surgery and is on medications. She was treated for migraines from the time she was 12 until 2009. She went to Georgetown Medstar Emergency and was told to follow up with a neurosurgeon and neurologist. She began experiencing deep depression but her husband followed what the neurologist advised with more testing. An MRA and arteriogram (aka angiogram) where two aneurysms were found with no expected outcome. She’s had 100% help from family relearning to walk, talk and distinguish pieces of her life. She’s having a lot of problems with stammering, balance, fatigue and depression, etc. it makes me wonder if she ruptured. She’s having difficulty finding doctors in her new area having moved from D.C. to Portsmouth. Angel, we may have members in that area of VA, start a new topic and ask for help!

@Debjan is in Wisconsin. Deb has had an MRA, CT and Angiogram to discover an aneurysm that needs repaired. She’s been told she has to take blood thinners for six months before she can get it repaired. It is a long time Deb, I agree with you😂. Deb has two dogs, two cats and two birds…she also has two children, a son who lives close by and a daughter down in Arkansas that she’s planning to move nearby. I’m curious to know if you’re going. To move before or after the surgery….please start a new topic so we can learn more!

@R1ck is up in New York. Rick had a rupture, the doctors told him he’d had the aneurysm for about five years (I didn’t know the doctors could tell how long we have had an aneurysm). Rick loves live music and used to love craft beers which he probably enjoyed with his work travels. He now enjoys non-alcoholic beers. Rick has already started a new topic found here 4 months. Way to go Rick!

@Sunshine is in West Virginia. She has a bilateral fusiform cavernous carotid aneurysm which is pretty rare y’all! I looked it up and you can read about them here Cavernous carotid artery aneurysms: epidemiology, natural history, diagnostic and treatment. An experience of a single institution - PubMed. Kasey also has some other issues going on such as Chiari Malformation (Chiari malformation - Symptoms and causes - Mayo Clinic) Ehlers Danlos (Ehlers-Danlos Syndrome: Symptoms, Diagnosis, Treatment) and some other issues. That takes a really strong person to deal with all that going on, doesn’t it? We can certainly offer our support Kasey!

@zinoueyad10 is up in New York. Sabrine has two aneurysms which are 3mm as well as stenosis. She hasn’t had any treatment yet. Sabrine, start a new topic so we will know how we can help you!

We end this week welcoming @here4miamor Vic’s fiancé ruptured back in 2021 and was coiled. She was treated within two hours of the pica aneurysm rupture, she spent a month in hospital, has recovered and is doing well. Vic joined to help better support his fiancé through her recovery. She’s a lucky gal to have you in her life!

That’s the round up for the last two weeks! Remember to watch the the date of the topics which will appear as a month, apostrophe, and year such as - Mar ‘17. That means the topic is really old and the members may not reply. It also means I haven’t closed the topic off. :crazy_face:. The work around is to just start a new topic under “General”, “Support” or “Symptoms and Treatments”

Have a great week! Stay hydrated, eat protein and rest as needed!

Welcome everyone! :smiley:

1 Like

Thank you so much! I am now looking for Dr.s. i was just diagnosed from a CTA at Johns Hopkins but my Dr. There specislizes in hydrocephalus and Chiari. He was preparing to do a couple surgies on me when i got this curve ball.
Thank you

1 Like

I thought I had asked for help. Maybe I did but dont remember, shocking. It would be helpful to speak to anyone else who is a survivor and can sympathize with the issues that we now have and has any advice on how too mov e forward

It’s easy smeasy here Alana, just start a new topic under the General tab with whatever you’re needing and members will come to help with their experience.