Questions for those who have been in a coma

This post went to a topic that was about ten years old. We closed the topic and moved @MattM ‘s question in the hopes that currently active members can assist him.

@Michael_L did you get any responses to your questions above about being in a coma from ruptured BA? My mom has been in a coma for only three days and the surgeon is already very negative about the possible outcomes.

Matt, we really hope you receive some answers from members. It’s very hard for family members when someone has had a rupture and on top of it ends up in a coma. I do recall we have had a few members that were active years ago.

When we perceive surgeons as being negative, it’s most likely based on their experience with a very small number of patients due to the rarity of ruptured aneurysms. I’m not a doctor, but as a patient for 26 days in NSICU I saw a few things - They look for a lot of neuro responses, the amount of blood entering into the cerebral spinal fluid, area of the brain where the blood escapes to, all the different results from the blood work ups, vasospasms, etc. They do a lot of talking (staffing) with Residents under them if at a teaching hospital, discuss (staff) cases with their peers inside their department and are trying all they know in the best interest of the patient. The RNs staff a lot with all the different doctors.

I know when I ruptured, my family was told for 21 days they didn’t know if I would make it. The outcome wasn’t a positive in their experience and training, but each and everyone told BH, they just didn’t know. It was extremely difficult for BH, my parents as well as other family members. I will keep you and your mother in my thoughts.

This is a slow difficult process. I am no expert As i am still new to this too but after reading many of the people’s stories here everybody’s recovery is different. After a ruptured aneurysm my wife was only responsive to pain stimuli for a week. That was 9 months ago she is still recovering but is able to care for some of her needs like feeding, dressing,showering and some chores.

I wish you and your mother well

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Thanks everyone for sharing your experiences! It is nice to hear that there is some hope. We are now on day 13 and my mom has been in about the same condition for the past 7-10 days. She will usually respond to a command to blink her eyes or (barely) move her thumb, but only once per day in the morning when the doc does his regular evaluation. When her eyes are open they have a blank stare and aren’t moving around or focusing on any objects. They say she’s still having extreme vasospasms and they are giving her meds to keep her blood pressure around 180-200. CT scans show no new brain damage, but still confirm two parts of the brain (one part in brainstem) with dead tissue resulting from the strokes she had soon after the rupture. A few days ago they switched her off the breathing tube and feeding tube to a trach and peg, so now she doesn’t have all the stuff in her mouth. She’s been breathing over the ventilator the whole time, so it appears she still has the capability to breathe on her own. There is talk of possibly moving her to a long term acute care facility in the next week or so, even if she’s in the same condition.

Thanks so much for the update Matt! It sounds as if your mom is getting Triple H therapy. It’s just an experienced guess as it is what they gave me for 21 days. If she’s still having vasospasms, I would fight for her to stay in the hospital and not transfer her. With me, they did ultrasounds 2-3 times a day checking on the vasospasms and so many CTs I can light up our county.

I don’t know if a long term care facility can do that level of care. You might want to start with speaking to her insurance company, it seems they control our level of treatment and for how long. If your not allowed, and she is married, have her husband talk to them. You may need to be present and listen in to the conversation. He may allow you to ask questions yourself.

I’d have a serious conversation with her surgeon and no one else as the surgeon makes determinations, not the Residents nor the wonderful RNs. Everyone follows the surgeon’s orders. I can be a bit pithy and I’d come out and ask why he/she would even contemplate moving a patient who is still having vasospasms. I’d say some other things but I can’t type them here😱.

Make sure you and her husband if she has one is present with the surgeon and any other family members if they’re coming to visit on a regular basis. Have a list of questions ready and go down them one by one. Do Not nod your head in agreement if you or anyone else doesn’t understand. It is a failing we have here in the United States, not sure about other countries. Doctors of any type seem to fall into their medical language when they are protecting themselves emotionally, this is normal for anyone who has to handle deaths. Tell the surgeon to dumb it down, most of us don’t know the brain the way a surgeon does as it’s generally not what we studied in school. Use a type of speech that’s sometimes called reflective where you put into your own words what you think is being said for clarification. I’ve been known to tell a doctor to draw me a picture that I can understand.

I will continue to hold you and yours in my thoughts.

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@Moltroub thanks so much for the support and advice! We did move my mother to a long term acute care facility yesterday as they appear to be able to give the same care, if not more, than the ICU. Even though she’s still unconscious she is getting physical and occupational therapy, along with respiratory therapy and starting to come off vent. Also these nurses seem better and/or have more time, so they are able to clean her much better and have noticed some minor infections the ICU didn’t notice.

@Moltroub I read your story in your profile, but would you mind providing more details? Were you in a coma? How bad and how long were your vasospasms? what was your initial recovery like in ICU? What were your doctors saying about potential recovery during that time? I just don’t understand how all the doctors are so negative. When I push them for exact details about why my mom’s case is so bad they don’t provide sufficient information for my engineer fact-driven mind. They will say negative stuff basically telling us to get ready to pull the plug because she’s having vasospasms still on day 6 and is on a ventilator, yet then on day 14 they reveal that it’s normal to have vasospasms peaking at day 14 and continue through day 21…and also she’s been breathing well the whole time and the vent was just in case something happened. When I mention successful recovery stories like yours after extended ICU stays the doctors don’t believe me and think the specific stories I’ve read on the internet are fabricated.

Matt, I’m really happy to read your mother is receiving better care! If the minor infections are decubitus ulcers, the ICU is going to be in a bit of a pickle. Any medical facility that is the cause of decubitus ulcers (bed sores) can lose their federal funding. They certainly get fined and have to do a bunch of retraining. Medicare/Medicaid takes them very seriously as it’s indicative of poor nursing care. From my experience with both my parents, a staff member looks over the patient when leaving and there’s another that looks over the patient when receiving.

I would never fabricate my rupture, never ever. Tell those doctors to just call Dr. Quintero -Wolfe at Atrium Health Wake Forest Baptist Health in Winston-Salem. They can ask her about her patient that ruptured with a 5mm multi-lobed aneurysm with more than 24 daughter sacs (she quit counting at 24) and that developed Foreign Accent Syndrome after procedure #2 for more coils, #3 had balloon assist with more coils, and finally #4 with the NeuroForm Atlas Stent and wait for it - more coils! I’m sorry, lost my temper there…. I was on a zoom type of information with the BAF years ago and I couldn’t find any information on vasospasms online back then. I asked the guest speaker, a doctor, the nitwit had the audacity to tell me it was impossible for me to have vasospasms for 21 days. He then blew me off. I’ve not been back on those “meetings”

I also had a PA from TN tell me in the cab headed to the Capitol for lobby day that if it was the surgeon she worked under, he would have done a craniotomy right away. Didn’t matter that the treatment my surgeon did was successful for me and the PA dismissed it. She also stuck us with meeting her Congressman as she decided to fly home, apparently either her family or her husband’s family didn’t see eye to eye with that Congressman.

So yes, 21 days of vasospasms is in my medical record. I was not in a comatose state. The Residents told BH not to expect much, that I may never wake up, that I may not make it, that I may not be able to speak, walk etc. I woke up before they expected me to so I surprised them then. They started in on asking a lot of questions but I only focused on BH. I knew BH, I knew we had promised early in our relationship to dance in the streets and I asked, more like insisted, BH go home and get my good Japanese saw off the floor in the cellar🤣

How bad the vasospasms were, I really couldn’t say. Between the rupture and the vasospasms, Either EB or Dr, Walker, I think it was explained vasospasms in this way - take some playdoh and roll it out into a snake, Spread your fingers and push down on it, this is your artery and though it’s not completely blocked, the blood can’t get through to the part of the brain it needs to, at the amount it needs and a part can get damaged due to lack of oxygen, etc. the other example was taking a garden hose and kinking and then letting go. I have an incredible amount of brain damage is what I’ve been told. I have also been told by several doctors outside of the hospital, that there is no medical reason that I should be here. My surgeon calls me her miracle of miracles. Why did I survive and others don’t, I don’t know but I decided it was because I still had a job to do.

I forget the woman’s name that came in every day and did the ultrasounds. One time, a young man showed up, did it and in probably an hour, she came back and did another. She wasn’t happy with what he had done. She had over 30 years experience! I was getting them 2-3 times during the regular work day hours. I think they started sometime in week 2. I was getting an amazing number of CT scans prior to the ultrasounds, then the CTs slowed down to maybe one or two a week. Seems every time the Residents came to see me I was having yet another CT done. I haven’t requested my radiology records but did find out they are a separate record though findings of MRI/As and CTs are in my record. Oddly enough, I don’t have all the CTs in it either.

I know my brain was in excruciating pain and dumb me told them to stop the morphine. I thought it was the cause of me not being able to think clearly🤪. BH was told every day that I may not make it to the next and don’t have a lot of expectations on me surviving. It wasn’t until Day 22 or 23 that the Residents were semi convinced I would make it. Fortunately there were other people, Dr. Walker, EB and many of the RNs who gave BH encouragement as opposed to negativity. They also encouraged me to keep fighting. I remember telling the CNA to turn off the tv after they moved me from the open floor. She got mad. Apparently I had stopped her from watching her soap operas or talk shows. All I know is the light and sound from the tv hurt my already hurting brain. Flora, a wonderful RN came and pulled the plug when the CNA refused to turn it off.

The LEDs in the pen flashlights caused more excruciating pain and I just couldn’t adjust to it all. I got to the point I refused to open my eyes for most of the Residents. There were a few that I can name to this date that I didn’t mind and it’s probably because they didn’t make “the sign of the cross” as quickly. One time I told the groups that came by that they could do any sign, Star of David, Sheba, Muslim, it didn’t matter to just quit blessing me…only one doctor got it and he laughed so hard he choked. I’m guessing he was the one who knew a bit about Catholicism :joy:

Most of the RNs assigned to me were wonderful and kept the lights as low as they could and still do their work. They come in every 15 minutes around the clock. They couldn’t turn off the machines that constantly beep and ring and make all kinds of disrupting noise despite my pleading. It’s interesting I can recall all this and I do apologize for rambling. You did ask me to elaborate​:scream::crazy_face::rofl:

They tried dexamethasone for the vasospasms but I hallucinated horribly. I scared the poor RN, Susannah, so bad, she went running to get someone. In came Dr. Walker and EB (med student) and out EB ran. Two of the three Residents came hustling and did they ever get that stuff out of me and quick! It was the only hallucination I am aware of having and I have never forgotten it, I believe it would make a decent part in a Stephen King novel

I had no PT or OT in ICU. I was adept at PT having had back surgery the year prior and would do those exercises all the time. Dr. Q-W didn’t sign a release for me to get out of bed. Maybe the end of week 2 or beginning of 3 I decided I needed to walk. After all I had my lower lumber fixed the year before, as my choice was walk or not walk. I decided the Neurosurgeon who did my back surgery would be upset that I wasn’t waking. I stood up and couldn’t remember what I was supposed to do. BH came in and asked what was wrong. I said I wanted to walk but I couldn’t remember how. BH said the tears were just rolling down. BH sang “put one foot in front of the other…” and I walked about 50’! The entire medical staff began singing along and I remember one woman who was unresponsive began singing as well. From that moment on, she would always wave to me when I walked by. Unfortunately she didn’t make it.

Seems Tuesdays were a really bad day for patients and RNs. Tuesday was the day that many patients stopped living. When you’re in ICU for a long time, you feel the energy I guess it is. When patients die, there’s a tremendous busyness and then the RNs hardly speak. I get it, death is hard on everyone that’s living. Many times I would get several RNs that just came into my room for a break. I rarely spoke to them during these times, they needed a chance to regroup and breathe. I asked the Charge Nurse why they did this when he came in one night, he said they didn’t fully understand it but when they came in, they were surrounded by peace. I have a different concept of my Higher Power than what I was taught in Catholic school and Church. We are great friends, God and I. The way I perceive our relationship is we have worked together a very long time and we both pull our share of the load. I certainly couldn’t have survived working as long as I did with the client population I worked with without God’s help. But I also knew I had a responsibility to help God in my work. So maybe that’s where the peace came from, I don’t know.

I cursed one time in 26 days and used the “f” word. Mostly I’d say something my Dad’s family often said - “Jesus, Mary and Joseph, that hurt.” When I did curse that one time - it was when a very large number of medical folks, students, RNs and doctors were crammed into my little room. They decided to do an A-line and Central line as my veins were blowing and there wasn’t much more spots for the IV needle. When EB was trying to put in the A-line, I begged her to stop repeatedly as it hurt to much. I still feel bad as it upset EB and she did stop but she had to walk out for a moment. The doctor who was full of himself and probably one of her instructors said he would do it but he tried the one she was in and then had to go to the other wrist. He put it in but he put it in wrong and buddy did it hurt so I cussed. I used a lot of other non curse words to let him know exactly how I felt about his arrogant attitude and he better get EB back in my room stat! Well everyone started laughing and clapping. I couldn’t figure out why. They said they didn’t know I could curse and they all were very proud of me. Dr. Q-W came in later that day and made me promise not to curse, to use my words. I understand her request, it’s much too easy for someone who has brain damage especially in both language areas to curse and not sue their words. When Ben came on duty that night he felt the A line, and tried to get thePA in duty to remove it. That PA pressed on it and the pain went up. Ben got Dr. Q-W to order it being taken out before they even started rounds that next morning.

I begged to be released for a week or two. I told Dr, Q-W my dog was dying and I needed to be home for Trouble, Dr, Q-W said I couldn’t know that, I thought she had lost her mind! Of course I knew it I told her, Trouble is 14 ½ years old, dogs do not live forever. Dr, Q-W told BH not to tell me if Trouble died, BH told her I would know the minute BH came in. She did try to release me despite some of the others. She thought it would help me. But once again. I was a fool and literally danced out of ICU to go to the step down unit, I was back in within a few hours as the vasospasms got really bad.

Triple H therapy was used to control the vasospasms and I controlled the Triple H with my style of relaxation breathing, Eventually I was released to go home. I could walk, talk and feed myself. I had difficulty with buttons at first but I got them pretty much mastered. Dr. Q-W is 60 miles from where we live and several counties in between. She left it up to my PC to get me the help I needed. He didn’t know what to do with me but suggested I get another Neurosurgeon. I got another PCP eventually. I did know basically what I needed -ST,OT, PT. Dr. Q-W wrote a prescription for anything I requested. I just couldn’t find an OT but my ST worked on those skills with me. It’s why I am not allowed to cook unsupervised😂

I have an educational background in Developmental Psychology so I was fortunate to know what I needed. I worked with a lot of families and I knew I had to set small goals to get to the large goals. I had no awareness of thought processing early on, I just said whatever came out of my mouth. It has been a tremendous amount of hard, consistent work. If I failed to do something one day and completely rest, I would forget how to do it the next. I take a positive attitude in every second of every day and I see the beauty in the smallest of things, I don’t need the big ones, never have.

I’ve written an awful lot Matt, if I didn’t answer a question, ask again

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How are you and yours doing Matt?