I hope I’m posting in the right place.
My name is Hayley, I’m from the UK but have been living in the US for the past 15 years, as I married my American husband. On 6th March he had an aneurysm, out of the blue, we were sitting in bed watching TV, he was laughing then all of a sudden I heard him making this loud weird snoring type noise, to start with I thought he was kidding around, but 2 mins of telling him to stop joking about I phoned 911. They thought he had took drugs even though I told them definitely not, they gave him Naloxone or Narcam . Then took him to hospital, as I can’t drive I stayed at home waiting for a phone call from the hospital. They told me he had an aneurysm and was sleeping but he probably wouldn’t wake for a few days, they were wrong, he woke a few hrs later, and pulled all his wires out. The first few weeks he wasn’t talking sense but after that he’s been ok, just very weak,he spent 4 weeks in icu but then he went to rehab. Thing is he’s been home and bk to rehab 3 times since, he came home on the 6th July and went bk to hospital on the 12th, as he gets confusion. The times before have been because of UTI’s but this time he didn’t have one.
I don’t have anyone here to help so I feel so alone, he’s going to have to have some more rehab but he feels like I don’t want him home, this is so hard, I don’t really have any emotional support either. Thanks for anyone who read this.
He also had a shunt? Put in after 2 weeks as he wouldn’t stop bleeding.
Welcome Hayley! I moved your post to General, it’s where we try to encourage people to post new topics, it’s something I know how to do😂
I cannot begin to fathom the difficulties you’re going through, they seem to be compounding, a lot! If you don’t mind my asking, do you live in a rural area, semi-rural or in a city? I’m not familiar with Delaware as I’ve never been there, farthest North I’ve been to is PA. Different areas can have access to different types of assistance and I would be happy to research some for you.
EMS has rules apparently of not allowing passengers in the box, some paramedics follow those rules, some not so much. In my area of NC it can be hit or miss with their decision.
It’s very, very infuriating to hear a paramedic give an assumption without knowing history or doing a thorough check up and obtaining history from loved ones present.
Naloxon is Narcam and in case anyone is unfamiliar with the medication, it’s normally used for an opioid overdose. Not being in the medical field, I’m not aware of any other uses for it. I’m also unsure how the paramedics would think opioid overdose and not some type of stroke.
I do know when I ruptured, neither Communications (911), the paramedics nor the Lt had ever dealt with a rupture. They thought I had a migraine and was headed for an ischemic stroke due to my BP rising because of the pain. I was fortunate in the very first volunteer first responder that showed up on his way to work in the ER, knew it was much more serious than a migraine. I’m wondering if that was the case when your husband ruptured, a ruptured aneurysm didn’t even cross their mind. The further away from a highly populated city, the less the emergency responders deal with ruptures I think.
Shunts are used to release to decrease swelling in the brain, not to stop the bleeding to my knowledge. Cerebral shunt - Wikipedia
Many members here have experienced hydrocephalus and can speak on the matter better than I can. I’ll leave that to them. If his aneurysm was still bleeding, the surgeon would have had to go back in and try to stop it either with more coils, ballon assist, stent or they would do a craniotomy and put in a clip.
When our brain is damaged by a rupture, our personalities can and often do change. Please be patient with yourself and him. Depending on the area of the brain that has suffered damage personality changes can be very pronounced. It takes time, a lot of it, for our brains to create new pathways.
I would suggest visiting him daily while he is in rehab or the hospital. I know you don’t drive but there are other methods of transportation. Do you have access to public transportation when he is in rehab? If you live inside a city, it will be far easier to access than in the country. Do you attend church/synagogue/temple etc or active in any community groups? Many times other people who are involved will set up a volunteer driving group, at least they do in my semi rural area. If you are on Medicare/Medicaid or have some type of disability, public transportation may have special vehicles you can access. For me to get to a bus stop is about a three mile walk with no sidewalks and speeding vehicles. I was able to access the special transportation vehicle when I needed it as I couldn’t drive back then.
Our members are really good at sharing their experiences and providing emotional support. Sometimes it’s not enough depending on our frustration level, feelings of sadness, etc. check to see if there are any caregiver support groups in your area, many are doing them with Zoom meetings or other computer programs where you can use your computer. Some places to search for would probably be TBI groups or Stroke Support Groups. The BAF posts the support groups that are affiliated with them here Brain Aneurysm Foundation - Brain Aneurysm Support Community
If you let us know where in Delaware you reside, we can do a more concentrated internet search for you. If you don’t want to say in the post, just send me a PM and I will look.
Give members time to respond…
All the best,
Moltroub
Hey Hayley,
Welcome to Ben’s Friends.
My name is Merl and I’m a member of the modsupport team here on Ben’s. I saw your post here yesterday, but I was not having a good day, symptom wise, and thought I’d leave my response until today. I must agree with everything Moltroub has written. I must also say your experiences with the systems are not unique, in fact, they are rather more common than many would like to admit. I say this as I too have had medicos make what they may consider ‘educated guesses’ that were very wrong ie Drugs and alcohol, only to find out years later the real cause.
Drug use is often the ‘Go to’ diagnosis when symptoms are non-defined or don’t fit a specific condition. Naloxone’s primary use is as an opiate antagonist. In very basic terms it blocks opiates. It adheres to the opiate receptors in the brain and blocks the opiate from binding to the receptor. There are some 'Off-label" uses for low dose naltrexone (LDN) that have shown benefits, for example HIV/AIDS, Parkinson’s Disease, ALS and Alzheimer’s to name a few, but there are often other treatment options with better outcomes for these conditions, other than naltrexone.
The human brain is a unique piece of equipment. No 2 brains are wired in exactly the same way and no 2 bleeds have exactly the same symptoms/effects. So what maybe considered a small bleed with minimal effects for one individual could be catastrophic for another. Some medicos use the theory that if patient ‘A’ has a group of symptoms from a condition, then patient ‘B’ with the same condition will have the same symptoms. But when it comes to neurology this couldn’t be further from reality. I’m often saying “2 people can have exactly the same brain injury but have vastly differing outcomes”. Personally, I’ve required 6 neurosurgeries (Including the insertion of a shunt) and none of them have been the same either in symptoms nor outcome. Trying to draw any parallels just between my own symptoms is near on impossible, so the idea of drawing such parallels between patient ‘A’ and ‘B’ is just not possible.
Waking up in ICU can be nasty. I too woke up, wires going everywhere, plugged into machines going beep, beep, beep, needles in my arms etc and I freaked out, ripping tubes and wires out, trying to get out of the bed whilst everybody around me was trying to calm me down and explain what was going on. I was so disorientated, felt like I was in some sort of mad scientist experiment and I went into PANIC mode.
I completely agree with Moltroub in regard to visiting daily whilst he’s in rehab. Having that familiar face turning up each day was a BIG thing for me. Someone I knew, someone I could naturally be relaxed with. I was a ball of stress. I HATE the hospital environment at the best of times, having pain @ 10+, my tolerance with nurses was very low to nil and when I’m in agony I am NOT a nice person (Or so I’m told 
) and the nurses wore my venom on more than one occasion. Having that familiar face I could relax a little, I felt safe and I knew at some point in the day that face would come.
Moltroub is also correct in regard to the shunt not being for the bleed or blood. Within our skull there needs to be a balance of 3 things Brain matter, blood and a fluid called Cerebral Spinal Fluid (CSF), if one of these is out of balance then I become symptomatic. CSF is a water like, nutrient rich fluid that surrounds our brains and spinal cord. It is produced within the brain and drains down through our spinal cord. We produce around 600ml of CSF each day, if that fluid cannot escape the skull that’s called hydrocephalus (or an older term ‘Water on the Brain’), that pressure can build and build and the consequences of that pressure can be catastrophic. The shunt is there to drain that CSF and regulate the pressure within the skull. But, the shunt is an artificial drain, it’s made of plastic and it can take some time for our body’s to normalise to it. Our body’s can naturally adapt but a plastic tube cannot and sometimes the shunt tube can block or break (also called a shunt fracture). The tube also has a valve, sometimes the valve can block or fail and this can cause all sorts of oddball symptoms, some of which may need surgical intervention. I have turned up to A&E numerous times only for them to do a scan and send me home, but by the same accord I have gone to A&E had a scan and had them recommend I be admitted. I think that if he feels the need to go to hospital, then go and get it checked out. I’ve ignored and minimised symptoms previously and by the time I did act it had turned into an urgent/emergency situation, so I certainly wouldn’t be recommending waiting. Even in being told all is OK can be a HUGE relief.
The whole neuro-journey is not an easy process for anyone, neither the patient nor the families involved. We know this because we’ve lived it too, so come talk to us.
Merl from the Modsupport Team
Oh wow I’ve finally found my post, I’m not good at this kinda stuff, I just tried to make an online journal and that took forever. Well you all know a lot more of what went on with your brain than I do about my husbands, they hardly told me anything, I remember a balloon being referred. The 1st paramedic who walked in, I heard her say “it sounded like is he Agonal breathing” thinking I didn’t know what that meant, so when I said omg whattt….she told me to leave the bedroom. When she walked in he was making a snoring sound but when she told me to move (as I was keeping his top half on the bed, he fell off the bed and hit his head on the bed side table, the snoring sound stopped and he kinda woke up. I saw her again this last time the paramedics came (12 July) and she told me she didn’t think she would see him again. He has also had a Wolanburg stroke? in the past 5 weeks.Looks like he’s not going to rehab this time they told him he’s been enough times so are sending him home tomorrow, this has confused me cos I don’t know how I’m going to cope with him, he’s 310lb and he’s lost a lot of muscle, he was 400lb plus when he went in 3 and a half months ago. Thanks for the replies. I’m going back and reading them again. TY.
If this sound muddled I’m sorry it’s because I just heard bad news from home.
Hayley, if you need help with his care at home, you will need to discuss this with his doctor before he leaves the hospital or facility so it can be set up. Ask for some home health care services to be provided. Perhaps they can do some type of Home Health regime. It will depend on the level he is requiring for assistance such as bathing, possibly PT, OT, etc. It will also depend on the type of medical insurance he has and what they’re willing to do.
I don’t know what the agonal breathing is nor the Wolanburg stroke. Perhaps a member with more medical knowledge can help out. Perhaps it’s Wallenberg Syndrome Wallenberg syndrome / Ischemic stroke / Stroke CVA / Causes - Disorders | Braininjury-explanation.com
I found this on Agonal breathing What Is Agonal Breathing? What Gasping Means and What You Can Do
It’s hard to live far away from where one grew up and has family still there, especially when something happens. I’ve learned one can only do what they can. Many things in life we cannot control, the one thing we can try and often succeed at controlling is how we react. Remember to keep calm and breathe. There are numerous YouTube videos on how to do this, usually under a Mindfulness heading.
I can definitely understand your concern about caring for your husband. When my husband had cancer, Hospice came to help with care, concerns, and advice. Hospice doesn’t cost usually. I cared for my husband for 5 months at home until he passed at home. A few days before he passed I was wore out and reached out to our family members for help. We lived far from family. Family came from all over. You have to reach out for help. Know that others do care. This is a good place for questions and support for you.
Wow…had this all written out, computer crashed and lost it all…UGH!!!
So, summary of what should be here -
My wife had a double brain aneurysm September 18th 2010 @ 47 yrs old
ICU staff expected her to be with them through December 2010 but she overcame 5% survival chances and walked out to go home October 30th 2010
Generally in good health and does most daily things on her own like dressing, bathroom, eating (we bring it to her as she has dropped her plate at times), etc - BUT no more driving, working, cooking, cleaning house, laundry, yard work, managing finances. Normal everyday adulting stuff she no longer can do safely.
She is on 12 or so meds for extreme hypertension, cholesterol, sleep, pain, muscle spasms, etc.
As she is unable to work, I have attempted multiple times in the 11+ years since she had her aneurysm to file for her disability, but given denials of - she did not have enough work credits - I made too much money - been too long for any work history so no case! So, here we are stuck in the SS/Disability machine, getting chewed up and spit out.
Anybody have a similar situation and been able to find a way through the mire?
Please help
Thanks
So sorry to hear of this. I know that it has been a while since a post. I don’t think it will do good to restate what has been stated, but if you update the post, maybe new ideas will come in.
As far as 1984_Grand_Wagoneer is concerned, I would suggest talking to a SS and disability attorney. They may have some ideas.