Doctors aren't optimistic...I've heard this before


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It's eight weeks to the day of my mother's ruptured aneurysm. She had a coiling the day after, then a shunt 10 days later, which has since been revised twice. While she's mostly been sleeping, she has been awake, has talked (even made sense at times), waved to us, brushed her hair, been off the feeder (albeit for only 3-4 days), and got out of bed for PT and OT. Then she got pneumonia and back-to-back UTIs.

 

This past week, a series of seizures and the return of the ventilator (only for three days; she'd been off it since the day before the original shunt surgery) to keep her lungs from tiring out. She was almost totally unresponsive last Monday-Thursday; since Friday she's opened her eyes, but they don't focus or track much, just a little. I feel like I see recognition, however. Her medical team (she's in TCU) are not neurologists. Her CT Scans and EEGs keep coming back negative (4th ventricle is swollen a bit, but this isn't new, it's been swollen for awhile now) and when consulted, the neurosurgeons who performed the shunt surgeries said no intervention is needed. The doctors believe that her recent spate of seizure activity caused more neurological damage and told me that she is unlikely to ever come out of her stuporous state. Today one told me the chances of a change in her neurological condition are 'slim'; however, they used this name word to assess the success rate of a coiling procedure when her aneurysm first ruptured and caused a hemorrhagic stroke. They told us to prepare for the worst. The worst didn't come.

 

I don't want to have false hope or be in denial. I fully understand that my mother's life has forever changed and am prepared for the challenges that lie ahead. What I don't believe is that she mentally 'gone' forever. How can the doctors (internists) be so sure? If she's had a history of 'good' days, did the recent seizure activity really undo this? It's only eight weeks in. At the beginning, they were telling us that six months is the real indicator of post-stroke recovery.

 

I'd love to hear your thoughts, experiences, input. Don't be afraid of telling me the truth.

 

Heartfelt gratitude,

 

Rachel

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Dear Rachel:

My heart goes out to you. My first hubby, Paul, at the age of 39 had three brain aneurysms. It happened so fast, on a Monday morning about 2am. Aug 1992 I got him to the hospital and I was told then that the mris, ct scans, etc. all showed an aneurysm on his brain stem. They had to get him to a hospital that was better equipped to help him so they had to get him to John Hopkin's. The Surgeon said he needed surgery, however, his brain wasn't "happy" and they had to try to get it "happy" before they went in and did surgery. They said it was a miracle he was still alive as usually people die from this asap. Here I am trying to understand "happy" brain vs not "happy" brain. They had to do surgery the next day as things went down hill and they tried to clip it but when they tried it just broke off so they had to pack it. They put him in a self induced coma to keep him calm. I know he knew I was there as I wouldn't leave the hospital. I stayed right next to him and spoke to him, sang to him, prayed and laid hands on him, I would not leave. I needed to stay there because the Specialists said if and when he woke up either he would make it or he would die ASAP. I wasn't not going to be there. By Thursday he still hadn't woken up, so they were getting concerned. I looked at his eyes and there was nothing there. Their sparkle was gone. But, I kept my singing, etc. going. The Nurses had said they felt he knew I was there. I would talk about his fish and dog and the monitors would show different things. Anyway, I believe in keeping hope until the very last second, He never woke up, his other aneurysm burst and he was brain dead. How I hate that word, brain dead. But, he died the following Monday, he lasted a week. Don't give up, Believe in Miracles and the important thing is talk to the Drs, I couldn't have asked for better Specialists, I asked them straight up and they told me, as they walked out of surgery they came right to me and said he is in God's hands. They were humbled and I so appreciated that. They said they learned so much from my Paul's case that would help them with other patients in the future. The greatest thing was in the state of MD when a person is Brain Dead they have to still be watched, etc. for like 24 hrs, or something, it was a long time, and I wouldn't leave, because when you are in a self induced coma, they have to make sure you are legally deceased. But, I contacted the Nurse asap and asked to get a dr in there as I wanted to donate his organs. So, Paul lived on, someone rec'd his liver, kidney, corneas, heart, burn victims rec'd skin, whatever could be harvested was. I got to meet the heart recipent and we became good friends. I Hope this helps you. Just love your Mom and let her know how much you care. they can hear as the hearing is the last thing to go. Paul's legacy lives on. I have done a lot of education with the 911 individuals as they would not take him when I first called 911 because he was not able to say take me to the hospital and I feel their not taking him was wasted important valuable time. He wasn't able to think and speak at that time. It was a nightmare but I had a video made professionally and had his two surgeons speak on aneurysm signs to look for as they totally missed the mark with Paul. I spoke to those wanting to recertify and get certified. Your Mom is helping others... she is on this journey... Know God is holding her in his loving arms. Reading your post brought so much up from that time in my life. I just know he did beat the odds by making it a week. If you Mom has made it this far, there is hope. I had 11 and a half of good years with him.

I will keep you all in my prayers. God Bless, Hugs, Jan, Brain Stem Stroke Survivor, Nov 2003

Believe in Miracles and SOAR

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Rachel,

Right here :hiya: ruptured aneurysm massive hemorrhagic stroke, less than 10 percent chance of survival, coma. My prognosis on the off chance I survived was that I would be locked in in a vegetative state.

 

The worst of my issues now are that the mascara on my left eye sometimes comes out like I put it on with my right foot and I have to redo it. I walk completely unassisted, although I have movement and can use my left arm for some gross motor tasks, I really have no functional use of it.

 

I was extremely blessed to have recovered as well as I have. I can't promise you that your mom will, but I am an example of why you should not lose hope. I will offer my prayers. Don't underestimate the power of prayer, I truly believe prayer is why I am here today.

Maria

 

 

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Thank you both for your responses. :)

 

Maria, if I may ask, what was your situation? I mean, how serious was your SAH (my mother's was category 4)? How long were you unconscious? Her situation these past 10 days is the worst I've seen in the whole eight weeks. The doctors say she could come back but they don't know for sure, things don't look good at this point. She is completely unresponsive, even to stimuli. Your description of putting on your mascara makes me smile, though, and I hope with all my heart that my mother experiences your fine recovery.

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RaCHEL,

 

i THINK DOCTTORS HAVE A SCRAIPT THEY LEGALLY HAVE TO READ BEFORE ANY MAJOR PROCEDURES rE DONE.. tHEN THEY ARE LEFT TRYING TO EXPLAIN THIS SAYING THEY HAD TO SAY WITH THEIR OWN EXPEWREIEWNCES. iT GETS EXTREMELY FRUSTED. I usually asked for a private meeting with my doc. He explains things much better when it iz just the two of uzsa. My neurologist just told me he has '/no idea what caused my 2nd stroke' My tghought now is I want to stay with him because he is honest. I want that in a doctor. Time fore a referral to see some who might be able to figure out the cause this tim!

 

Another thing: my neureologist and a neuro opthamologist both told me I would never get my eyesight back to normal. I had double vision. One dsy I woke up and my vision was 'norml'' I went to my neuro and showed him. He saisd I will never tell a patient their eyesight will never get better. So don't believe them when they sy never. They really don't know becaUSEWW WEACHstroke is diffewrewnt and so are the survivors. Be there for her now with encouragement. Help hr with her PT, OT Ans Speech. Be a part of it if she lets you.

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RaCHEL,

 

i THINK DOCTTORS HAVE A SCRAIPT THEY LEGALLY HAVE TO READ BEFORE ANY MAJOR PROCEDURES rE DONE.. tHEN THEY ARE LEFT TRYING TO EXPLAIN THIS SAYING THEY HAD TO SAY WITH THEIR OWN EXPEWREIEWNCES. iT GETS EXTREMELY FRUSTED. I usually asked for a private meeting with my doc. He explains things much better when it iz just the two of uzsa. My neurologist just told me he has '/no idea what caused my 2nd stroke' My tghought now is I want to stay with him because he is honest. I want that in a doctor. Time fore a referral to see some who might be able to figure out the cause this tim!

 

Another thing: my neureologist and a neuro opthamologist both told me I would never get my eyesight back to normal. I had double vision. One dsy I woke up and my vision was 'norml'' I went to my neuro and showed him. He saisd I will never tell a patient their eyesight will never get better. So don't believe them when they sy never. They really don't know becaUSEWW WEACHstroke is diffewrewnt and so are the survivors. Be there for her now with encouragement. Help hr with her PT, OT Ans Speech. Be a part of it if she lets you.

 

 

Yes in deed, I talked to a woman who's voice came back just like your eyesight after seven years. A finger on my right hand damaged forty years ago and not able to work (bend) began working a month and a half post stroke so anything is possible ;) There's many, many stories like ours, so don't you give up hope Rachel.

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Rachel,

I was in a coma for 2 weeks and on life support. There was a device implanted in my head (I don't recall what it is called which monitored brain activity). I was in a coma for intensive purposes I was completely unresponsive. What you said is very true the doctors just don't know and can't predict the outcome. My neurosurgeon said I'd never walk again. When I went back months later for a follow up after he walked in to the exam room, looked around for my wheelchair then turned to me and asked "Can you walk?"when I responded that I could he asked me to walk across the room. He hugged me and his eyes welled. He then picked up the phone and requested his surgical team report to where we were because "I have something they need to see to believe".

Don't give up hope they really don't know.

Maria :friends:

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Guest lwisman

When I visited my neurosurgeon a year after my stroke, he commented that my visit made his day. He said he did not expect my outcome to be so good. Then he said many many people who he operates on do not make it.

 

His experience may be why doctors are often not optimistic.

 

There are many on this board who have proved the doctors wrong. :D

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Thanks, Maria and Lin. :) So happy you're both doing so well.

 

It is now nine weeks since the aneurysm ruptured. My mother was completely unresponsive for two weeks. Then, this past Wednesday, she began tracking a little and trying to move her mouth, as if attempting to speak. Today, she groaned when her mobility team turned her, something she hadn't done before. I see more recognition in her eyes. She still doesn't follow commands, however, and her pulse is around 95-100. Her doctors aren't planning another CT Scan to check for further damage. She's been cleared to go to a skilled nursing home, but first must be able to cough up secretions on her own. The physical therapist told me she can teach me to do range of motion exercises. That, apparently, is the only activity my mother can have as she's not awake enough for real PT.

 

Grrrrrrr. Her doctors don't really tell me anything other than they aren't optimistic. Her neurosurgeon says it's 'possible' for her to recover, and given the small steps she's had these past few days, I tend to believe this. My mother's two brothers only say they don't want her to live a 'half life' (i.e. vegetative) and my brother hasn't contacted me in over two weeks, so I have no idea what he's thinking. My sense to that she'll do better at the skilled nursing home; once she's out of a hospital and in a place where the staff can move her around some has got to be a more effective option than just lying around in bed all the time.

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Guest lwisman

Rachel,

 

I get really antsy when people start using the term vegetable state. It is my understanding that the only way to tell if someone is actually in a true vegetable state is to have an MRI. Doctors can see brain activity even if the patient cannot communicate.

 

After my stroke I was in a coma for two weeks and then don't remember anything that happened in the next two months. But, my brain did heal. It just took time.

 

Incidentally after my stroke my family was at first asked about organ donation (talk about pessimistic). However, they did an MRI and there was lots of brain activity. At that point, the pessimism lessened.

 

Keep asking lots of questions and pushing for answers. When will they begin therapy -- range of motion exercises can begin once the patient is stabilized. They do not have to be coherent.

 

Keep advocating. You are her voice.

 

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Rachel,

 

I get really antsy when people start using the term vegetable state. It is my understanding that the only way to tell if someone is actually in a true vegetable state is to have an MRI. Doctors can see brain activity even if the patient cannot communicate.

 

After my stroke I was in a coma for two weeks and then don't remember anything that happened in the next two months. But, my brain did heal. It just took time.

 

Incidentally after my stroke my family was at first asked about organ donation (talk about pessimistic). However, they did an MRI and there was lots of brain activity. At that point, the pessimism lessened.

 

Keep asking lots of questions and pushing for answers. When will they begin therapy -- range of motion exercises can begin once the patient is stabilized. They do not have to be coherent.

 

Keep advocating. You are her voice.

 

 

Absolutely right, you are her voice, ask questions and if the doctors are using buzz words, tell them you don't understand ask to have it explained. As well make sure you get the rest you need, because you won't be any help for your mother if you're exhausted. Stay strong, don't give up.

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  • 2 weeks later...

An update: She's still in TCU but is now more alert and responsive, not talking, just tracking with her eyes and responding with facial expressions. She will squeeze your hand but isn't yet following commands. Today her BP dropped to 87/45, which is kind of scary. Her drs. hope that increasing her fluids will bring this up.

 

The aneurysm ruptured 10 weeks ago. There is a plan to send her to a skilled nursing facility though no definite date. My family and I are staying optimistic, encouraged by the life we see in her eyes.

 

Blessings to you all!! THANK YOU!!

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Dear Rachel,

My heart goes out to you for your Mom's illness and you and your family's distress. Please know God is wathching over her. Doctors can't predict what is going to happen to a person after a catastrophic illness. Most of them like to paint the grimmest of pictures so if the worst does happpen, they're right...if they get better...they are still in good standing with you. I worked as an R.N. in a neuro ICU for 10 years. The seizures are a result from the brain insult and she should be on anti-seizure meds now and the rest of her life...siezures take a tremndous amount of energy from the brain and that may be why her neuro status has changed for now. If she's not on any now, make them start them. Only our Lord who is The Great Physician knows the outcome for any of us. I'll be praying for your Mom and you and your family. I saw so many miracles in Neuro ICU...don't ever give up hope! God Bless you all now and always!! Joy

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  • 3 weeks later...

Another update: It has been 13 weeks since the aneurysm ruptured and my mother is still hospitalized. She came back from her unresponsive state and now opens her eyes, tracks a little, and tries to move her mouth. Sometimes it seems as if she's listening to me and to her doctors, sometimes not. She sleeps alot, but when placed in her medical care, moves her head and perks up quite a bit. Since her doctors can't do anything more for her medically, they are recommending her discharge from the hospital. The problem is they want to put her in custodial care (something her insurance won't cover) and I feel she could do better at a skilled nursing facility (which her insurance will cover). She really improves when she's moved around; her PT team doesn't share my view, and this influences the doctors. All say 'custodial care'. I will fight them on this and advocate for a skilled nursing facility. Fortunately, her nurses and the supervisor of 'patient/family - hospital' relations agree with me and are on my side.

 

At this point, her doctor says he's is 'doubtful' that my mother will recover. A good friend of mine, who is an internal medicine doctor, says it's too early for predictions and that anything can happen. He did caution, though, that it's already been three months. Earlier on in my mother's stay, she'd been at a higher level of functioning, which was encouraging and the doctors said her prognosis seemed 'very, very good'. When the seizures came along and wiped that out, her prognosis changed to 'this is as good as it gets'. But my dr. friend says not to look at statistics because everyone is different and anything can happen.

 

From what I've read, I've gathered that stroke/aneurysm survivors are usually in rehab by the second month. Her case seems to be really difficult and her recovery very long. I don't want to lose hope, but it's been 13 weeks already. What if this IS as good as it gets? Why did the doctors coil her (a 1 in 5 chance of survival) if they did not expect her to recover? Too late in this drama, I am learning that there is a huge difference between 'survival' and 'quality of life'. My mother would absolutely hate being dependent on others for care and even more so, be upset that she couldn't do her art work or travel anymore.

 

 

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Guest lwisman

Just to let you know that their are those amongst us who had a long journey back. I remember nothing from the first 2 1/2 months after my stroke, a cerebral hemorrhage. I am told I became more and more responsive during that time. Towards the end I was able to respond appropriately, but ten minutes later I did not remember the conversation.

 

I was in three hospitals for a total of 4 months and 3 weeks. Then I was in outpatient therapy 3 times a week for 6 month.

 

Be patient and do not believe the negative. Keep working at it. Good luck,

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  • 1 month later...

Well, I am sooooo happy I didn't fully buy into what my mother's doctors had been telling me since June because last week, four months and nine days after my mother's aneurysm ruptured, after she had been really unresponsive for weeks, after her doctors saying that she'd likely never reach a higher level of consciousness, and after the pallative care team were pushing me to turn off her feeding tube, she finally woke up! If I hadn't seen/heard it myself, I'd never have believed it. It began on Friday, when she began talking and asking/answering questions, most of which even made sense. Then, on Saturday, I went to the hospital to visit her...when I walked into the room, she looked at me and asked, 'What have you been doing?' (I'd come from a hike and was still dressed in my gear). My brother called while I was there and I put the phone to my mother's ear. She made the motion to hold the phone and said, quite clearly, "Hi! What are you up to?' Wow! I don't know what it took to finally get her to 'wake up' but who cares?! As one of the nurses says, 'It doesn't matter how long it took for her to come back. The point is, she's back!' (Love love love the nurses at that hospital....so wonderful!!)

 

On Sunday, she transferred to a rehab hospital and is now receiving PT, OT, and speech therapy and actively a part of all. She acknowledges that she is confused and unsure of how much time has gone by, but she is following commands again, moving all limbs again, and talking again. After four months of basically a sleepy, unresponsive state and three rounds with pneumonia, many UTIs, and meningitis. Her heart and lungs are both strong and she is slowly remembering things. I don't know what caused this change, though I do feel vindicated for waiting and not giving into the doctors' negative predictions. The brain needs time to heal. I fully see this now.

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Rachel,

I wish I could say I told you so because I possessed some profound knowledge or insight but that's not true. I wasn't even so bold as to attempt a guess. The best I could offer was an example of how I began in the same place and was now here to be an example of why you should continue to hang on to hope for her because she very well might be one day. I can't begin to tell you how it made my day to see your post.

 

Again I won't even attempt a guess at how well she'll recover, no one should or can. Every stroke and recovery is different. Please stay involved on the site and encourage her too as well. The road back is a long tough one and we'll be happy to help her and help you help her back.

Maria :friends:

 

 

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Thank you, Maria and Lin. :)

 

I had an internal belief that she was still 'in there' and would eventually wake up. This is what kept me almost relentlessly cheerful and positive, even when her doctors and the pallative care team were trying to get me to 'be realistic'. What is encouraging is that the medical team told me that since she hadn't gone to another level for so long, she likely never would. This turned out to be completely wrong, for she is now at the highest level of consciousness/functionality that she's ever been in the four months since this happened.

 

I am so grateful for all the prayers and kind words. You all have made a huge difference. Thank you!!! :friends:

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  • 5 weeks later...

This is a great thread. Shows a couple things. First, when you read this thread from the top your thinking "no way... game over".. when you get to the part where your mom wakes up your thinking "incredible". I think we were created and I also think the recuperative powers latent in the human body and specifically the human brain, are largely unknown. Your moms account is vivid evidence that we have to maintain hope even in the most dismal of circumstances. Huge congratulations on 'keeping the faith' for and on behalf of your mom!

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Well, I am sooooo happy I didn't fully buy into what my mother's doctors had been telling me since June because last week, four months and nine days after my mother's aneurysm ruptured, after she had been really unresponsive for weeks, after her doctors saying that she'd likely never reach a higher level of consciousness, and after the pallative care team were pushing me to turn off her feeding tube, she finally woke up! If I hadn't seen/heard it myself, I'd never have believed it. It began on Friday, when she began talking and asking/answering questions, most of which even made sense. Then, on Saturday, I went to the hospital to visit her...when I walked into the room, she looked at me and asked, 'What have you been doing?' (I'd come from a hike and was still dressed in my gear). My brother called while I was there and I put the phone to my mother's ear. She made the motion to hold the phone and said, quite clearly, "Hi! What are you up to?' Wow! I don't know what it took to finally get her to 'wake up' but who cares?! As one of the nurses says, 'It doesn't matter how long it took for her to come back. The point is, she's back!' (Love love love the nurses at that hospital....so wonderful!!)

 

On Sunday, she transferred to a rehab hospital and is now receiving PT, OT, and speech therapy and actively a part of all. She acknowledges that she is confused and unsure of how much time has gone by, but she is following commands again, moving all limbs again, and talking again. After four months of basically a sleepy, unresponsive state and three rounds with pneumonia, many UTIs, and meningitis. Her heart and lungs are both strong and she is slowly remembering things. I don't know what caused this change, though I do feel vindicated for waiting and not giving into the doctors' negative predictions. The brain needs time to heal. I fully see this now.

 

Rachel,

 

I'm so happy to hear this, you were right and they were wrong (don't expect them to admit it though) ;)

Tell your Mom that we're all routing for her, she's a lucky woman to have a daughter like you.

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