Basilar Artery

[Guest kaj]

My suffered from a basilar artery annie on June 23, 2007. She was graded as a Hunt Hess IV. She was in intensive care for a little more than 30 days. When she left to a long term care hospital, all she was doing was barely squeezing her right hand and had her eyes open. At the long term care hospital she got off the trachea and was talking and eating pureed food. She doesn't have any idea what year it is, where she is, or what happened to her. If you talk to her and ask her a question, many times she will say something totally strange and not on subject at all. She doesn't always know who her family is. She is in rehab right now. She is getting a little stronger physically but her mind doesn't seem to be getting better. She isn't able to go to the bathroom so she is in a diaper and on a catheter. I am so worried that she will be in a nursing home the rest of her life. She is only 67 and was very active before this happened. The neurologists at the ICU said her brain looked great and it would take time to heal. The doctor at the long term care hospital said she will not have a full recovery or a significant recovery. Is there anyone out there with a similar situation in the basilar artery, HH IV who came out somewhat ok and could live at home????? Please help I feel very discouraged.

Kim

[Karen]

Hi Kim,

I'm very sorry to hear about your wife. It sounds as though she has had a particularly hard time. I had my SAH just over 2 years ago and I'm still recovering. I think that the brain in the early stages, has a tendency to shut down a little, in order to begin recovery .... The only thing that I can say to you is, try to stay positive .... she's spent a heck of a time in the intensive care unit, which I would imagine would set her recovery back.

I would suggest taking in some family photos, holiday snaps, anything to stimulate her brain ... favourite music ..... favourite perfume. I still have short term memory problems, but little by little it has improved ... I've read many times that the brain has to find new pathways and literally has to re-wire itself.

Considering the ordeal that she's been through, if she's managing physically to get stronger, then that's a positive and she's still in the very early stages of recovery..... Don't be disheartened by what you're told by the professionals.....they're not always right with their prognosis.

Try to keep positive and note the small changes in her. Do you live in the UK? How much is your wife capable of? If you can "exercise" her brain in any way, it will be of benefit to her .....

If you need a friendly ear, help or support, we are all here for you.....

Thinking of you.....

[Guest kaj]

It is actually my mom. We live in the US. It is very difficult. I keep thinking about the way she was and wish we could have her back. I try not to dwell on it. I hope the professionals are wrong and she does much better. I am glad to hear that you are doing well. It is nice to know that people can survive this and do well.

Thanks, Kim

[Karen]

Hi Kim,

Sorry, your Mom ....

Yes, the Medics aren't always right with their prognosis ..... keep working with her and don't give up .....

People do survive a SAH, that's not to say that it's a hard and long road to travel ..... it's not easy, but with a good, loving family around you, it makes you more determined to try your hardest. I think that a support network for everyone involved is paramount.

How old are you? (if you don't mind me asking!) I know that my own kids really helped me to focus on my recovery or survival .... I was really determined to stay around for them.

[rince]

If we had a penny for every "never going to recover" or "recovery will stop at six months" sort of story that health care proffesionals tell we'd have almost enough to buy a weeks shopping! There are manypeople who are told that and then go onto to make much more of a recovery than expected. We should never make light of SAH because we are very much the success stories but we are enough to hopefully make that sort of diagnosis a thing of the past.

Scott

[Guest kaj]

I am 39 years old. I would love to have a miracle story to tell someday. That is my secret hope but the rational side of me just wants her to be able to walk and go to the bathroom by herself and know who we are. If she does that, I would believe in miracles. My only problem with helping my mom is my twins and newborn. They keep me very busy and my husband and I both work fulltime. Time does not allow me to visit like I would like. If we were independantly weathly then we could time a leave but unfortunatley, we are like most Americans and both need to work. That is my biggest guilt right now.

[Guest Clare]

I wouldn't feel too guilty about having to work. At the end of the day your mum has had a good life so far and she would probably want you to continue providing the best life you can for your children, as they are the future.

My mum was only 44 when she had her SAH which is very young, luckily the outcome wasn't so bad. But had my mum been iller for longer she would have wanted me to continue the best life I could for my kids.

And when your mum's brain has worked itself back into shape, she will be very proud of you for not falling apart.

I was with my mum nearly all day every day and she knew who I was and was quite coherant once the worst was over.

But she doesn't remember a ****** thing , the conversations we had or me even being there.

If your mum still doesn't know who you all are yet, chances are she's not missing you at the moment.

I think your coping fantastically x

[Guest kaj]

Thanks, I am trying to be too much for everyone these days. I just want things to work out. The only way that I feel I have some control over the situation is if I bring her activities. It makes me feel better because then I feel like I am contributing to her well being. I have to admit I do get frustrated sometimes and just ask God for help or my brother who passed away this year. I am still waiting for the reply HOpe it comes as a miracle!!!!

[Guest kaj]

Is there anyone out there who did not know what had happened to them for a long time? It has been just over two months for my mom now. Everyday I ask her if she know where she is and what has happened to her. She never answers correctly. When I tell her, she does not remember the next day, of course. I know this is a cognition problem but I am wondering if this will resolve and she will have a light bulb moment and ask us what happened? Any similar experiences???

Thanks, Kim

[Guest kaj]

Today is not such a good day. I am feeling very down. I start work in two days and will not be able to spend much time with mom. The speech therapist stated that her response time has improved but her consistency in accuracy is not good. Sometime I feel like she is never going to get better. My dad was feeling down and said he wondered if he did her any favors by finding her. We are at a low right now. Tomorrow might be better. She did try soft foods today instead of ground food. I hope she masters that. They aren't even going to try to take out the cathetar because she can't tell them when she has gone to the bathroom. Sorry to be so negative today, just not a good day.

Kim

[Guest kaj]

I am in much better spirits today even though my mom wasn't any different than the day before. She started therapy so early in the morning that she actually started falling asleep during speech therapy. I did talk to her about my childhood and she remembered a few things without help so that was nice. She was also trying to tell me that her brain isn't doing what she wants. However, she still doesn't know what happend to her, what year it is or where she is. We will keep holding on.

Kim

[Karen]

Hi Kim,

Sorry to hear that you've been feeling up and down, over the past few days. At least your Mum is recognising the fact that her brain isn't quite doing what it should.....that is probably a good thing.

Cling on to the small changes and over time you will hopefully see those adding up and realise that your Mum has improved, even if it does seem to be taking an age.

Short term memory is a huge problem for most SAH'ers ..... I still have problems remembering what day it is, telephone numbers, my date of birth especially and how old I am. When I first came out of hospital, I would quote a telephone number from a previous address, somewhere that I lived about 10 years ago.... The more tired I am, the worse my short term memory is. My daughter often tells me her plans for the next few days, but I can totally forget what she's said and then she'll get annoyed with me for not remembering! I normally ask everybody to write important stuff down on a calendar.

Try to keep positive.

[Guest kaj]

My mom's memory is only a minute or so. She is still so confused right now. Still doesn't know what happened to her or where she is. She has her feeding tube out as of yesterday which is good news. I am trying to get through this with little goals in mind. So far, she talks, reads, off the trachea and feeding tube and eating grounded food. the next goal is to get her to go to the bathroom and get off the cath. After that, I would like her to come home and learn to walk. I hope we get to take her home. That is the biggest goal of all. She can't end up in a nursing home. It is not a quality of life and she would not have wanted that. So I will keep setting these goals and hope she keeps accomplishing them. I see her tomorrow. I can't wait. I started work so I haven't been able to see her for three days. It is really hard. I hope not seeing her until the weekend will allow me to see progress. That will make me feel better. Seeing her everyday is hard because I don't notice the little improvements, maybe a couple of days will allow me to see more. Thanks for your help. I am happy that you are doing well. Tell your daughter to be patient, if possible. She is very lucky to have you!!!

Kim

[Louise]

Hi there

I ditto what everyone has said I was the same as your Mum took a long time to be who I am today, a very long road with lots of hurdles & tears along the way frustration the lot but time is a great healer the brain dosn't repair itself like a broken bone it takes a lot longer, in my case for every 5 steps forward there was about 20 or more back........

Hope this is making sense to you, as I'm not in the best of form at the min......

Take care and look after yourself because you have to be strong for your Mum.....

Louise.x

[Guest kaj]

It makes perfect sense. My mom is very confused. That is the scariest thing. I just hope she clears up a lot or we are really going to have a difficult time ahead of us. I know it is too soon to tell. Does anyone know when is the time frame on improvement. What I mean is, is there a time when she doesn't improve cognitely she will not get better. I am tired right now so I don't know if I am making any sense. Hopefully you understand what I am trying to say.

Kim

[AndyH]

Hi Kim,

My wife had her SAH in May 2005.

I was first told that she wouldn't survive the initial bleeds and that she was going to die. I prepared for the worse.

When Heather was still breathing in her coma I was told 'If she survives then she will be so damaged that you will probably be unable to look after her. I prepared for the worse.

When they discharged her from the hospital I was told that recovery lasts around 2 years.

Here we are 2 1/2 years later.

I see signs of recovery weekly. Heather is capable of doing pretty much everything for her self. In hospital I cleaned and bathed her, I fed her, I helped to teach her to walk and use her left side again. I did this because at the time she couldn't do it herself. Have a look at her now. If you want to see her, look at the Andy and Heather tv spot. Its on here. Not bad for a girl that should be dead or disabled enough to be in full time care.

Recovery is slow and I have been told many times that it stops after X amount of time by many 'professionals'. I have also been told by survivors of SAH, some of them 40 years into this, that recovery goes on and on. I have read case studies and books that suggest recovery is a lifelong process. The brain never stops healing. It is a remarkable organ and its possibilities are endless.

Never stop pushing for support and never stop learning new ways to help your mom. The more you know the better you are prepared for the recovery your mother deserves.

Take care

Andy

[Julie]

Hi Kim

Like your Mum I was very poorly for about two months, I don't have any memory of the first two months post SAH at all. Anything I tell people is "parrot fashioned", because my husband has told me the "story" so many times. Initially I just could'nt store anything.

I can only echo what the others have said with regard to the "six month rule". I'm almost 8 years post SAH (so happy to be here!!) and I'm still making improvements. Some days I even know what day it is all day long

Karen's suggestions of music and photos is really good!! My husband used to put ear phones on me (playing some of our "special" tunes) even when I was'nt fully conscious (he said I used to smile at them). And, its nice to wake up to a friendly face (put a couple of her favourite photos on her bedside locker?)

Oh, don't forget to not be so hard on yourself!!!

Best Wishes!!

[Guest kaj]

I know that patience is the key here. I still wish there was a crystal ball somewhere. Next summer will be the eye opener. We will really know what to expect for the most part. the team at the acute center said she made great stride this week. Especially physically. cross my fingers.

Kim

[Karen]

Just keep positive Kim ... it sounds as though your Mum is making progress.....it doesn't matter how small the changes are.....but, she's making them ....... if you can keep strong, then this will come through to her ... don't ever neglect yourself .... as a Mum, I know how important it was to know that my kids were okay .... that was the main thing and still is ....

Just remember that you're doing good too.....

Love and hugs xx

[Guest kaj]

She will be moving this Thursday to a sub acute from acute. Our goal is for her to be in a walker and be able to go to the bathroom on her own. I hope it is realistic. thanks for the kind words.

Kim

[Karen]

Hi Kim,

I'm sure that it is realistic .... Every step is progress and you will find that the "small steps" will eventually add up .... like I've always said, don't give up .... I'm now just over 2 years post SAH and my steps forward have been even greater, since hitting the 2 year mark ... even I have started to see some progress (the first year - 18 months was at a snail's pace) .... the more progress that you make, the more determined you are to keep going and that's why the support around you is crucial .... just keep encouraging her and praising her ....

You're both doing extremely well.....

If she see's that you are coping okay, then I'm sure that she'll put in the extra effort......it's quite amazing what can be achieved, as long as you have the support ....

Just to add, take each day as it comes ..... for most of us SAH'er's it can be a rollercoaster ride ..... we all still have bad days, many years on .... but tomorrow is literally a different day .... I don't look further than my nose any more .... it's just a different aspect on how you view life .... if I have a good day, then I'm grateful, if not, I tend not to dwell on it ..... tomorrow is normally, always better .... it just takes a bit of time to get there and view life slightly differently....

Sending a big hug to you....

[Guest kaj]

Thanks, Karen. I know progress is progress and I also understand very well the roller coaster ride. The neurosurgeon told us after he put her coil in. I thought to myself, YEH YEH, but he wasn't kidding. HE was telling the absolute truth. I can't believe how much my emotions can turn on a dime with just one little set back or one little piece of hope. It really is amazing.

We took my mother home for one day. She knew it was her house and all of our names. She occasionally got us mixed up. We brought her to her computer to see if she remembered what to do. She liked to play with the keyboard but had a hard time with the mouse. It was nice to see her home but sad as well. I could tell she had no idea that she hadn't been there in a long time. My daughter who just turned three is the mothering type. She fed my mom jello and "tried" to help tie her shoes. It was precious but again sad to see it. Her move is Thursday, now her 5th place. I hope to God that this will benefit her and be a better place than the last.