My mom had a brain aneurysm 9 days ago. She made it to the hospital and through the coiling procedure. She’s currently in ICU. Her drain was removed on day 4 or 5. She came down with pneumonia, which has gotten better. Her vitals are good, but she is not waking up. She responds some but not consistently. While the doctor feels her lungs could breathe independently, he says she is not awake enough for the vent to be removed. Because of this, they are planning a tracheostomy. They say she will need to go to a long term care place after her trach. The doctor said a trach can often help patients improve faster. But it all feels like a big step backward. It’s so hard to stay hopeful. I don’t really get why she is less awake now than when she was sedated.
Mrsm, Welcome and thank you for joining our group! I am sorry to hear about your mom. I was in Neuro ICU for 26 days following rupture. It was touch and go every day. Each and every day, they were not sure I would make it.
I had vasospasms for most of those days and in fact got a few hours on the step down floor before I was carted back in to Neuro ICU due to vasospasms.
After getting out, I spent a couple days in the step down unit before going home. I couldn’t be left alone and was fortunate my parents were still alive to babysit me during working hours. I am stubborn enough that a rehab facility wasn’t talked about.
I had good and very bad days in ICU. Most times it felt like one step forward, two steps back. Frustrated and confused was my constant state. My best friend brought me an easy to read book. I asked anyone who went by my bed what a word meant. I knew I should know the word, I had always been an avid reader, but they were lost to me.
We don’t really know why someone is doing well and then plummets. Perhaps it’s will power, perhaps it’s just the unknowns about the brain. I have learned that while Neuro Surgeons know the brain so extremely well, they don’t know everything about it’s intricacies. One day they will, but it’s not today.
Your mom’s brain is exhausted. Perhaps her whole body is trying to help her brain. Has the doctor done any further MRA’s or CTA’s? Has he done any ultrasounds of her brain? That’s what they used to catch my vasospasms.
I’m so sorry I can’t be of any help. Please know we are here to support you.
Thank you, it’s so tough. They have done several CTs on her head and all looks fine so far. They have also done a TCD a couple of times. So far those all look good.
They completed her trach. Everything went well, thank God. Now we begin the process of finding a long-term care facility and pray for improvement now that she has the trach.
Thanks for the update. It’s great news on the trach!
Try Adult Services in your county, they’ll be opened tomorrow. They are the ones who investigate convalescent/rehab facilities.
Although Social Workers aren’t allowed to recommend any specific place there is a way around it; simply ask where they would want their mother to get rehab.
Also go to your State DHHS website and do the research on what facilities are supposed to do when. When my parents were still living, they had to go to a rehab facility. The one my Dad was in wasn’t so great. I literally threatened to call the Supervisor over Adult Protective Services and tell him what they were doing. It helped immensely. My mom was at a different facility, wanted to go home and they said it would be another few weeks. I did some research and discovered Medicare only pays for a set number of days. Facility was trying to keep her for those days. The attending physician has to put the expected rehab time down, I think within 24 hours of admittance as part of Medicare compliance. Several things happened…I asked the night****strong text RN to see my mom’s chart. Having her medical power of attorney allowed me to look, make sure you have that or someone who is cognitive enough to look at and understand her chart. The doctor did not make the note as required, the facility did not have the initial family meeting required by Medicare, mom fell in the bathroom, a visitor heard her asking for help, and there were some other out of compliance issues going on. Long story that I did not make short, mom was released and home for Mother’s Day as she wanted.
Someone in the family needs to be present for each staff meeting on your mother. Take notes. Have any questions anyone may have written down. The staff will spend about 15 minutes on staffing each patient if that, so realize that it’s streamlined, very fast and they may use language you don’t understand. Ask for clarification. They might be able to do a Zoom meeting or something else that allows you to be virtually present.
Another good idea is to have different family members or friends visit at different shifts, even the night shift. Go about 90 minutes before shift change for the night shift. Im not sure GA has opened visiting though. I will text my niece and see how families can ensure their family member is getting good care with COVID-19. She works in a rehab facility down in GA. Last I talked to her, no visitors were allowed.
I’m glad the procedure was successful. Make sure you allow time for yourself to decompress.
Thanks for the tips! The bad part is that as of right now, we will not be able to visit her. I’m so worried about how we will be able to know and verify they are taking good care of her. At least in the ICU we have been allowed one visitor per day. The hospital case manager seemed like she had very little info and we had to make first contact. My sister in law is a nurse though, so she is helping with the search for the best place.
I truly understand the limitations COVID-19 has put on family members. Our niece is quite aggravated about it. I’m sure your SIL can help. If she knows an Adult PSSW, she could ask them. The Adult PSSW investigates rehab and other facilities. I was eventually allowed to have my smart phone in Neuro ICU. The RN’s helped teach/reteach me on how to use it and they were sure to make sure it was charged. Maybe y’all could do the same when your mom is able. Perhaps the facility will allow you to Skype or FaceTime with her even before, just for family interaction. Ask the SW that each facility has…Please us posted, there’s a lot of folks who are reading this
It is frustating situation to me, because we do not know what to so and what to expect.
I have terrible post surgery aneurysm. It was good for one day, then in the next 24 hours, I became like veggie, but I was awake. Hardly talk and swallow, I got feeding tube.
The only things, stay focused and positive with God’s help.
Now, it is over 28 months.
Try to stay strong so they (the medical staffs and docs) would be able to see it, and help you
I just joined and am reading a bunch of posts just to sort of orient myself up this site. Thank you so very much for this informative response. It is relevant across the board for anyone who may at some time end up in a long term care facility. Blessed are those with family members nearby.
Welcome to our world wide group! Thank you so much @Meggie, it means a lot that our group can help others. When you feel like it, start a new topic, ask for help or experience from our very knowledgeable and experienced members. Some helpful tips are providing members with the size and location of your cerebral aneurysm, if you ruptured or have an incidental finding and what course of action the specialist suggests. We are an inquisitive group. Also if you’re seeking out a surgeon in your area, just ask. Perhaps more importantly, is how you’re feeling about it all. Knowledge can be powerful and a bit overwhelming when it comes to our brains. We are here for you. Should you need any assistance in navigating this site, don’t hesitate to send a message to myself or ModSupport.
All the best,
Moltroub
Wow. Thank you so very much Moltraub. I hardly expected such a warm, welcMy 2mm aneurysm was an incidental finding—a complete surprise, and I’m still dealing with the news. Honestly, after reading a few posts on the site, I feel
Wow. Thank you Moltraub. I hardly expected such a warm, thoughtful response. My 2mm aneurysm was an incidental finding, and a complete shock that I’ve been struggling to take in. After I learned about BAF, thanks to Google, and no thanks to my neurologist, there were fewer days of outright depression and anxiety. Stories of the brave people who have overcome ruptures and multiple surgeries have humbled me. Mine seems like a small drama in comparison. My neurologist is I’m sure a fine doctor, but he is an extremely busy man, and his accent makes his hurried explanations difficult to understand. I don’t recall where exactly my aneurysm is located, and after his monthly consultation with the radiologist who performs corrective surgeries he will contact me with next steps. You would think that where I live -near San José, CA, a big metro area—there would be other neurologists I could transfer to, but I have been told by several doctors I trust that there is no one else they would recommend. So, I’m waiting til the end of March to have another FaceTime call with my neurologist to get more information. Thank you, too, for offering to help with the website. I find it hard to figure out, so I may well ask for assistance. Take care, my new friend, and thank you again for reaching out.
@Meggie You are so very welcome! Since I developed FAS after my second coiling, I have a few secrets in dealing with accents and doctors in a rush as well…Just use reflective speech and ask the Neurologist to slow down. When doctors don’t slow down enough for my brain to process, and I get frustrated, I say to them, I’m brain damaged, what’s your excuse? If I’m not frustrated, I would ask them to wait and let my brain catch up. Back before my stent placement, I said things in three so it would be “Wait, Wait Wait…”
I know San Jose CA. I had a dorm mate who lived near there when we were at Cal State Chico. I grew up in So Cal and now live in NC. I miss good Mexican food. We haven’t decided what it is the restaurants serve here, probably Tex Mex.
You can private message me by clicking on my avatar and then on the blue message button.
Remember, everyone who comes here is both brave and a bit frightened for self or loved ones. You have joined a great supportive group!
Virtual hugs.
Moltroub
Hey Meggie,
My name’s Merl, I’m a member of the Modsupport Team here on Ben’s Friends and (unfortunately) I’m also a neuro patient too. I’ve been done the neurosurgical route a few times and it never gets easier.
But that first diagnosis… …it’s a shocker, it really can knock you off your feet and take your breathe away.
You say "…Mine seems like a small drama in comparison…’ but I bet for you it’s not. Any neuro diagnosis can be shocking, let’s face it, that’s our brain they’re talking about 
I MUST agree with Moltroub in regard to the medicos. If you are having difficult with their language or their jargon, stop them, tell them so. This is about you, not them and you need to be able to take in and understand what is going on. If you are still having issues, take a friend or even better, a medical advocate, with you. Many years ago now, part of my job was as a client advocate, attending medical appointments and the like. I’d have to stop the dr’s and translate their jargon into a more simple language and then ask questions on my client’s behalf. The whole medical scenario can be scary enough, but having some understanding can lessen those fears and it’s the dr’s role to assist you to do so. If you have questions you need to be able to ask them and they need to answer them.
Some medicos can be a little blasé about it all, like ‘well, yea, we do this sort of thing everyday, so don’t worry about it…don’t panic’, the minute they said ‘don’t panic’ what did I do…? PANIC. They may do this sort of thing everyday, and that’s great, but we don’t.
With annies type, size, location and symptoms can play a big role in any course of action taken. Often with neuro patients a ‘wait and watch’ approach is taken. If it’s small, slow developing, not in a dangerous position, not at risk of rupturing and giving minimal symptoms, monitoring can be recommended. I can assure you if you can avoid neurosurgery I would STRONGLY recommend it, but if and when the time arises that it is required follow the advice of your dr’s.
We’re not doctors. We’re all patients, just like you and we know what it’s like because we’ve lived it too. If anybody tells you this is easy, they haven’t been here and they, honestly, wouldn’t have a clue, so come talk to us.
Merl from the Modsupport Team
Once again, many thanks to you Moltraub, for your many helpful tips I don’t know what FAS is though. I’m sort of afraid to switch to private message, because I’m so insecure about using this website. Afraid I’ll lose you forever! And is your icon the same as FB or did you create it for here? I don’t know what appears to you for mine. A propos of doggies, I should say that before I discovered BASC, my two Dandie Dinmont Terriers were my best source of comfort. I’ve only told my grown sons and a few close friends—in very brief terms. I don’t like talking about it, really—too fraught with anxiety for everyone.
Good Morning @Meggie! FAS is Foreign Accent Syndrome. According to my beloved Speech Therapists it is very rare. In fact the Speech Therapist at Wake Forest Speech said that with the accumulative years of all the Speech Therapists there, never had they come across someone with it until me. My initial ST said in her 30+ years she hadn’t come across anyone and urged me to go to Wake Voice to get the proper diagnosis. When I moved to the South, I didn’t have an accent or so I believed. With age and traveling to different areas of the country, I have learned each state has its on vernacular and syntax. It took me years to develop the correct speech style for the South. I liked to say that I used to speak correctly and then I learned to talk right. LOL
I don’t have a FB page. I did when I was an On Call Child Protective Services worker for work reasons, but never for personal use. My avatar is one of our rescues, Ohana. We thought she had Pit Bull in her and only our Vet disagreed, everyone else thought so as well. For our big Christmas present, we gifted each other with an Embark DNA/health test. Our Vet was correct, Ohana is 50% Boxer on the maternal side. Your avatar shows up as an “M”. To change yours to something more personal. You will need to go to your profile by clicking on the “M” that shows up on the top right side of the page. Click on the human form. Click on Preferences. You will see the “M” with a pencil under Profile Picture. Click on the pencil. From there you can customize your avatar! Don’t forget to use the New User Help page New User Guide. The only difference is the help guide says to click on the butterfly logo, but on this group you click on the orange “aneurysm” logo that the BAF developed. I really encourage you to start a new topic.
You won’t lose me or the group by trying PM. I did take a rather long sabbatical when my parents health declined and I was charged as their caretaker, I became overwhelmed to say the least. My Neurosurgeon even grounded me from them for three weeks. Their cardiac NP told them sternly that they were having me do things they could still do! They’ve both passed at the age of 84, so that stressor is gone. One of our members had reached out to our wonderful Mod Support asking where I was. Seenie shot me an email and back on I have been for 4-5 years now. To have been in the helping field for years, it is truly a gift to be able to help others here as a Moderator and member! I get on every morning EST. If you’d like to use the chat feature, just tell me a time and day and I will try to arrange my schedule. For me, anything after 3:00 pm my time or Noon your time is good. We call it a day around 9:00-10:00 pm EST, so a short window for chatting. I can help you start a new topic which I really think you should. Having a newly discovered aneurysm can be fraught with anxiety and many members can give you support.
All the best
Moltroub
I’m a little overwhelmed right now to follow up on starting a new topic or developing a more personal avatar. Maybe I can just use my FB photo. You are welcome to visit me there. I don’t post very often but there are lots of pictures. Anyway, I’m sorry to have overlooked this message when I checked my mail this morning. In addition to my own health stress, there is as of yesterday an outbreak of a highly contagious and dangerous equine virus at the ranch where my mare lives.
I’m very sorry for the loss of your parents. They were lucky to have you care for them. Neither of my two grown sons live nearby. One is in LA and the other in Chicago. And all the rest of my siblings—all younger—live far as well, a brother and sister in the Midwest (we are from Indiana) and one sister in Delaware.
FAS is a new term for me. What are the symptoms?
Your friend,
Meg
@Meggie, you may use any photo you want that is already in your photo library.just as long as it’s not sexually implicit, prejudicial, or extremely offensive I imagine since we are a support group with world wide members and are open to young people. I would be happy to start a new topic under support for you if you like.
I’m so sorry to hear that your beloved mare is at risk for an equine virus. We had horses when we lived in Rowland Heights. We always had to be careful with the Bubonic Plague that seemed to start up in Diamond Bar. Someone’s Vet would contact them and the phones would start ringing up and down the roads. Next thing you saw was everyone sterilizing their barns. And no horses were allowed in or out of Diamond Bar. That was decades ago and I imagine the horses and cattle have probably been pushed out like they did in Norwalk back in the early mid ‘70’s. Hopefully UC Davis has come up with a vaccine
Foreign Accent Syndrome (FAS) is just an accent that sounds foreign to the country one resides. I don’t speak another language though I grew up with Spanish and could get by well enough folks understood me. I had babysitters that were fluent in Spanish, Russian and German growing up. They always spoke to me in their primary language. But my FAS doesn’t have a particular country or language accent. Amy, the Speech Therapist at Wake Voice said people will hear an accent they are familiar with but one that is not their own. Boy, was she right! We used to have a great little European Deli that a very nice woman from Russia owned. She heard French, her employee who was French, heard Romanian. Some folks hear a Gaelic accent, some a South African accent or Jamaican accent, some a Spanish accent. Other than the employee at Sears who said I needed to go back to my own country when we were trying to buy an appliance, people take it well. I have to be very careful with television shows as we have discovered I will pick up nuances of the accents in the shows. LOL. My inflection with words are not American in any of the regions and I sound like someone who does not have English as their primary language. Used to be the only people who understood me were those who were familiar with different languages or those that English was not their primary language. We once had a very kind German gentleman who stopped for directions. He was the first to understand me completely despite my aphasia, very bad stutter and lack of visualization. He asked if I spoke German and I said Nein, ich spreche nicht Deutsche. He laughed and started speaking German and it was easy then for me to give him directions in English. You can read about it here Foreign accent syndrome - Wikipedia
I have damage in both Broca and Wernicke areas. My left hemisphere took such a blow from the SAH, I’m no longer able to do simple math when I used to tutor statistics at Chico State and algebra later in life. I had wonderful Psych Professors who taught me to do complex mathematical equations faster in my head then on a calculator. My ability to visualize is slowly coming back and I have wonderful people in my life that are helping me relearn math, besides the children’s math games I do online…all baby steps!
I don’t have a FB account, sorry.
All the best
Moltroub