Was Anyone Placed in an Induced Coma/Experience Paralysis Following SAH

[Thebelleoftheball]

I am just curious if any of you who have experienced an SAH rupture were placed into a medically-induced coma at any point, & if so, if you'd be willing to describe your experiences.

My boyfriend, Todd, suffered such terrible vasospasms, that he had to be placed into a coma, as all other treatments were not stopping the spasms.

He was in the coma for about a week, but has been lifted it out of it by being taking off his sedation. I saw him 48 hours after sedation had begun to be lifted. He cannot move or speak, but opens his eyes.
I asked him to blink if he could see/hear me- he did! I couldn't believe no one had thought to ask him this yet. I wasn't sure if he could understand me, however, there were a couple of things that happened as he laid there that made me realize he could, the most important being, when I asked him for a smile,

 

I saw the corners of his mouth twitching. I continued encouraging him, & eventually, he was able to produce a short, quick smile (no teeth, but clearly a smile), & did so about a half dozen times when I asked him if he please would. You've never seen someone so overjoyed as I was over something so small- it let me know that he is still with me, & can comprehend what I'm saying, & is trying to respond, which is awesome!!

The problem seems to be, it is as though even though his brain can hear/see/think/process, his body & talking are still trapped inside of him. That is why I'm curious if anyone on here has ever experienced anything like this- I want to know what your loved ones did that helped you most through that period of time.

I can't stand the idea of my baby being trapped & scared. I told him that I can't imagine how terrified he is, & that I will be with him no matter what in getting through this, & that this entire SAH event/ordeal has not changed my love for him, other than making me realize I love him now more than ever.

 

I told him he will get better, & that we will be married, as we had been discussing. I had my head down as I told him all that, because I'd started to cry, & when I looked back up at him, I saw a giant tear coming from his left eye. I told him, "Baby, please don't cry, it's ok!! I'm glad you are able to hear me & understand me, & I never want to make you cry, but in a way, your tears are reason to be thankful, because your brain is still processing words & feelings, so this is good!!"

Anyhow, that's kind of where we are at, so anyone who has experienced anything even remotely similar to what Todd is experiencing, please share with me how long it lasted, your process for overcoming it, what most helped you through it, etc.

Thank you so much, & I hope wellness & good health forever for all of you who have survived SAH!!

[Skippy]

Sorry hun, can't help you with this one.  My husband was in a coma in September after a motorcycle accident.  I was looking for his wedding ring, which I noticed he wasn't wearing, and the nurse told me it was tied to his wrist.  When I asked which one my hubby lifted the arm it was tied to, so even though he was in a coma he could hear me and knew where his ring was - like you, that made me cry.

 

It is good that he can respond emotionally to what you are saying and feeling though, shows the brain is still active in my opinion, but the other stuff I can't help you on I'm afraid.

 

Time is a great healer and, although patience is supposedly a virtue, both help with recovery; not just for him but you too.

 

Good luck hun and I look forward to hearing about Todd's improvements xx

[Daffodil]

Hi Belle , sorry to hear Todd is having such a tough time but glad he responded to you.

I don't have a direct experience to share with you as I had none of the conditions as those you are now witnessing. I did meet a woman via a forum for young stroke survivors who was diagnosed with locked in syndrome post her SAH and she said how amazing it was when people realised she was trying to communicate. She has in fact since written a book, I'll see if I can find it and post it here, she was a lovely lady and is now back running marathons, it gave me inspiration when I was not long out of hospital and unable to walk, work or look after kids.

I'm not saying that is what is going on only medics can but it may be worth asking the professionals their thoughts and if they have any suggestions or aids, maybe they have a grid of pictures to represent words and moods such as 'yes' ' no' ‘thirsty’, ‘pain’ and ‘sad' which they have used with other patients and see if you and Todd can get him responding through that and eye movement or ask for a speech therapist ot something to help work out a communication plan.

He will get very tired but encouragement and patience will be the way.

[Winb143]

All I remember is chasing My Mum and even swimming after her as she liked swimming,  but she wouldn't talk to me.

 

She told my Dad not to speak to me and my Brother not to sing to me, it was as if she was telling me to go back.

Which I didn't realise at the time.

 

Then a tall man offered me some sweets and threw them up in the air and as I turned towards sweets.(Typical) !

   

I saw my Daughter and  hubby looking sad so I ran to them.  I know this sounds daft but it was when my shunt kicked in as my Dad, Mum and Brother had passed on.

 

Keep singing his favourite song as he is in there xx That is what my family did to me, I was a captive audience !! lol

 

Good luck and show him pics and things of his past xxx

WinB143  xx xx 

[subzero]

Hello Jade

 

I am sure you will appreciate that everyone`s condition and experience is a bit unique and that those medics directly involved with Todd`s recovery are best suited to offer their advice based on their experiences. Don`t be afraid to keep asking them for information-I found them always willing to provide me with information about my wife`s prognosis.

 

My wife was already in hospital when she had her SAH, and was placed in an induced coma within minutes of the alarm being raised. (Sunday). The doctors in ITU advised me that it was their intension to take her off the sedation on the Tuesday. When I visited early Tuesday afternoon I found that she had pulled out all her blood lines and I had to wait for a considerable time while they got everything under control again.

It was an anxious few days because you simply don`t know how speech and movement is going to be affected by the induced coma and of course by the SAH.

 

For her, she was so weak that movement was very limited, however she did try and say a few words between drifting in and out of sleep.

 

Her coiling was not completed for a further two weeks.

 

If you read my Introduction you will see what recovery involved for her. Slowly her sight, speech and dexterity recovered over the following weeks..........

 

As you mention in your post- emotions are high. Your mind is working overtime- thinking about the worst while hoping for the best outcome-and feeling absolutely helpless because Todd`s recovery will be a slow patient process.

 

During those early days I can`t emphasise enough the need to take care of yourself too. Communicate with close friends, eat well (it is easy to rely on fast foods to get by) - you don`t appreciate what the worry and stress is having on your own body function and you may well suffer mentally and physically if you neglect yourself.

 

Try and accept that Todd is going to need time to heal.

 

Glad you have found BTG so quickly- you will get much support and encouragement here.

 

Todd will benefit from your sincere desire to be there for him whatever the future holds. That promise will challenge your relationship from time to time in the future.

 

I do wish you the strength you need at this tough time.

 

Subs

[Gemma B-B]

Hello,

 

I had my brain haemorrhage during heart surgery and although I came around after the surgery I then went into a coma due to the size of the bleed and the hydrocephalus. After having an EVD fitted to relieve the pressure on my brain I was kept in a medically-induced coma as I was on life support.

 

Unfortunately I cannot offer you any real first hand experience as I do not recall having the brain haemorrhage or anything else for about 3 to 4 weeks afterwards. I know that whilst I was on life support my family were around me and talking. As I was taken off the sedation they were all around me and waiting for me to wake up properly. I did not appear to be coming around until my husband said he was going to have to leave for the night to get back to our house - it was at this point I came around properly and told him not to go.

 

Although I do not remember any of this it would suggest to me that I could hear what was going on around me whilst still under some sort of sedation and whilst coming around from it. I also know that what helped me through that time was my family - my parents and husband in particular who came to see me everyday and spent time helping me process everything and get things straight. I was very confused when I first came around and it took weeks for me to even begin to get things straight and to begin relearning simple tasks (such as getting dressed etc.)

 

I agree with what others have said on here - it is probably worth talking to Todd's medical team to get their input about what is going on and what can be done at the moment. You are obviously very concerned at the moment, but as Subs says it is also important that you take care of yourself as well. I wish you both luck.

 

Gemma x

[Macca]

Hi,

I was in a coma for a week, although it was not induced.  As I was coming out of it I was talking complete nonsense for a day or two and then I started to come round.  I was oblivious of people around me and was reliant on them not taking offence at me saying some outrageous things.  They realised it 'wasn't really me' talking.  nevertheless, I needed much support over the coming months and needed people to come and talk to me, to show me pictures and photographs, to remind me of names and places and things I once knew.

 

It induced in me for a short while at least, a sense of panic, because I knew there was something wrong but I couldn't articulate it to anyone.  I had forgotten how.  I know that may sound ridiculous, but at the time it felt very real.  I eventually started to pick up on little things and I counted every little thing recovered as a success and progress on how I had been the day before.  But it also meant I knew I was getting better, albeit very slowly and that I was going to have to go one hour, one day, one week at a time.

 

Eventually I was able to start writing a diary and I realised over time what good progress I had made.  I still find it hard to look at that diary because it brings all the emotions back, particularly bad ones and that upsets me.  However it is also a reminder that although it was a bad time, I did come through it with patience, determination and the support of those around me. And yes, also with a slice of luck I think. Each of us on this recovery journey goes on it at our own pace.  It isn't a race, it is a journey of discovery, about ourselves, our loved ones and our resilience to overcome adversity.

 

So take your time, map that recovery journey, for each one is different, our blessings arrive at different times, be they big or small, and be thankful for each one.  Treat each as a bonus, not an expectancy, for if you do the latter you will encounter disappointment and will overlook the smaller successes that deserve much merit.

 

Savour the time you spend together on this recovery journey, as you might not recognise it now, but this can be quality time you both experience and it will bind you together like no other happening can.

 

Keep on doing what you have already done - keep talking to him, keep holding his hand, involve him in your daily life, make him feel that he still belongs, no matter what.  Progress may be small to start with but hopefully its pace may increase.

 

I wish you both luck.

 

Macca

[Thebelleoftheball]

I really appreciate all the advice, thank you, all!!

Daffodil, Skippy, & Win- I'm glad you shared your experiences/inspirations, because any anecdotes such as these give me so much hope!!!

Subs & Gemma- The biggest problem is, I can't talk to his medical team. He's at a hospital 2 1/2 hours away, & by the time I get there, rounds are over, or it's the weekend, & the doctors aren't really doing rounds. I wish so much that I could. I have a list of 30+ questions written down for them.

Macca, bless your heart- that trapped feeling you had, I know that's what Todd feels, but I know he's trying to break free from it (he's now progressed to moving his head, & yesterday, passed a swallow test & is being given puréed foods in conjunction with the feeding tube). You are correct about how this binds us, as I've never experienced a level of devotion inside of myself as I now have for him. It's very new to me, because in the past, I'm ashamed to say, I'd probably have cut & run if I'd encountered something horrible like this with a boyfriend.

The thing is, with this whole SAH ordeal, I've had to glimpse the possibility of living without him, & it made me realize...I can't. So, yes, I hope & pray that small progressions will beget larger & larger progressions, & that I'm as much help to his recovery as I can be.

[Super Mario]

Is it possible for you to make an appointment to see his medical team for when you can get there? Another alternative could be to have a telephone consultation with them.

I do hope that you can find some way of talking to his team to answer your questions and clarify things for you.

[Winb143]

I hope you get some good news and he starts listening to you.  Keep trying to talk to him etc etc  and never give up.

 

Good luck to you both xx

 

Smile and try and make him smile xx  

 

All the Best

 

Win xxxx