How long typically is the recovery from a subarachnoid hemorrhage?

My husband had a subarachnoid hemorrhage on June 5th 2015. He has recovered well physically, has some very achy shoulders, but can walk, climb stairs, shower by himself and mostly get dressed by himself.

We had surgery on December 10th to install and shunt, with the view this will speed things along. He has some small improvements but not significant yet.

He has cognition problems, short and long term memory issues and overnight incontinence. Some improvement in cognition, he can remember things in the past but cannot hold on to a memory for more than 10 minutes before it has gone. He has difficulty in believing me about certain things. His Mother passed away in November, he has been told several times and seen the funeral service sheets, but is constantly bringing her up and his Dad who passed away in 1984, as being here and about to visit. I don't think he wants to accept that she or he have gone. He doesn't not want to accept he has been retired since 2008, and argues with me and everyone on that too. The outrageous stories have calmed down a little, the odd things he did , like soap on toothbrush, have also improved. Definite positives and we are about to be reassessed for Physio and Cognitive therapies on Monday. He has not been willing to do either of these exercises on a daily basis for me. I try to get him moving, walking outside or exercise programs in the house, but not successful sadly. He feels the Cognitive exercises are demeaning and worthless, therefore will not do them with me. I get him to play a game of Uno or read an article to him, but he has no interest in doing anything himself. I realize he just feels too ill and tired. I pick my battles and hope I can get him to do something other than sit in the chair and fall asleep. He watches TV but does not read at the moment. He would normally be very active, problem solving, designing something, building something or at least listening to music. But sadly, all that has gone.

I was looking for input on how long recovery might take when the physical side seems to be pretty good. I know no one can really tell me, but I am desperate to find ways to help him be motivated and for me to see the light at the end of this dreadful tunnel.

You may want to look into a specialist offering Neurofeedback. There are a variety of neurofeedback tools that might help him along. Neurofeedback is a way of getting the brain retrained and speeding up the process of allowing other parts of the brain to take over tasks. Insurance typically covers this type of intervention but be aware that it will take a large number of treatments but it is well worth it. Good luck!

Dear Edwardo,

Thank you so much for sharing your experience. I am totally empathetic with your situation and wish you and your wife much success in her recovery. It is a long journey I realized that from the beginning but it is difficult to get good advice and expectation input from the medical professionals. They are helpful but are not living the nightmare that you and I are experiencing. I am hopeful to get my husband back to some sort of normality, he is an intelligent man who is very analytical and loves to problem solve and fix things. It breaks my heart every day to see him so lost. I truly believe he will recover, the effects of the aneurysm do not seem to have done major damage, so far. He is still very much like his old self at times. Just not motivated. I appreciate the candid responses and am looking for my own coping mechanisms, thankfully I am the patient one in this relationship, we have been married 42 years and that is evident. I am hoping for some positive changes in his personality too, he suffered from the "glass is half empty" syndrome and I have always been the "glass is half full". A little less of that would be wonderful.

Thank you so much for your words of encouragement.

Edwardo said:

Hi Djjscc , So sorry for your troubles . You two are still early in your healing journey. Improvements happen slowly and each person responds on their own timescale . The things you outlined are familiar to me and were experienced at different times from wife's Sah . This is not like healing from a broken leg the damage affects personality , memory , initiative and so many things that make the person who they are .

At 22 months post sah mine has better cognitive recall , good orientation ( she no longer thinks its 2005) She can move around on her own , She can recall short term and long term memory . When tired she regresses and asks about old jobs and passed away relatives . Bladder Incontinence became an issue and remains so today Depends makes it a non issue . Through the whole 22 months.... crippling debilitating fatigue has been a constant... but the more she rests, the more her situation improves .

She is much the same as before but her personality has changed and there are new traits to get to know . The healing continues - I dont look for the old her to pop out again but I am pleased with the new her . I had to develop my own coping strategies to deal with the disorientation and them seeing past relatives and friends . Arguing with them doesn't work - I calmly explain the truith then change the topic . Sometimes they will say something and mean something totally different . Its hard to explain .

Wish you the best,

Edwardo



Ed Dunlej said:

You may want to look into a specialist offering Neurofeedback. There are a variety of neurofeedback tools that might help him along. Neurofeedback is a way of getting the brain retrained and speeding up the process of allowing other parts of the brain to take over tasks. Insurance typically covers this type of intervention but be aware that it will take a large number of treatments but it is well worth it. Good luck!

Dear Ed,

that is an amazing piece of advice, thank you so much. I will definitely be looking into it and asking the therapists if it is available to us. The brain is such a complex organ and can do wonderful things when pushed. I am very encouraged.

Hello...."Everyday" is considering a challenge. Every hour, day, or minute will be a challenge, not for your husband; for YOU too. I agree with everyone's' who wrote in, it does take time; that's NO LIE. I won't sugar coat it. I'm sorry.

Anyway, I used Lumosity. It's AWESOME....Helped with cognitive skills, speed, memory, attention, flexibility, and problem solving. I had to re-train myself with the reading stuff, so it took me 1yr. to get back to reading again(1st grade to college; I got my B.S. degree, 3 month later on Easter 2013; that was the yr. I had a brain aneurism).

The light at the end of this dreadful tunnel: PRAY, PRAY, and PRAY....He will get you through this, Good days. Bad days. God is in all days. You'll get through this. It won't be painless. It won't be quick. But God will use this mess for good. With God's help, you will get through this....I will be praying...One more thing, it not a dreadful tunnel, nor God testing you...be patient, Trust God, he has a plan! That's what I tell my self EVERYDAY....I hope this Help...

God Bless...

Tricia Lemon

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Thank you Tricia, I will try Luminosity when he is able. I am SO grateful for your words of encouragement and will keep fighting. Very best wishes to you in your struggle too
Tricia Lemon said:

Hello…“Everyday” is considering a challenge. Every hour, day, or minute will be a challenge, not for your husband; for YOU too. I agree with everyone’s’ who wrote in, it does take time; that’s NO LIE. I won’t sugar coat it. I’m sorry.

Anyway, I used Lumosity. It’s AWESOME…Helped with cognitive skills, speed, memory, attention, flexibility, and problem solving. I had to re-train myself with the reading stuff, so it took me 1yr. to get back to reading again(1st grade to college; I got my B.S. degree, 3 month later on Easter 2013; that was the yr. I had a brain aneurism).

The light at the end of this dreadful tunnel: PRAY, PRAY, and PRAY…He will get you through this, Good days. Bad days. God is in all days. You’ll get through this. It won’t be painless. It won’t be quick. But God will use this mess for good. With God’s help, you will get through this…I will be praying…One more thing, it not a dreadful tunnel, nor God testing you…be patient, Trust God, he has a plan! That’s what I tell my self EVERYDAY…I hope this Help…

God Bless…

Tricia Lemon

agree with others that 6 months is still very early days. I barely remember the first 6 months after my sah. I also had no short term memory at all, I would do things like ask my husband the same question over and over, it wasn't just that I forgot the answer, I forgot I even asked him the question already, it's a really strange situation to be in. I also used lumosity, it will send you a reminder email and give you some exercises to do every day, but you can also just pick and choose which games you do. When I first started it was really bizarre, I couldn't figure out how I kept getting things wrong when I was so sure it was right, but over time it did get much better, I think it really helped me to get my brain working better. The thing is patience, you just have to accept what has happened and your brain is not as good as it was, but playing these games etc seems to get your brain firing again. I also did 3 different physio programs during the first year to get my balance and walking more coordinated. I remember being told that most recovery happens in the first year and I know that was true for me.

Just as an aside and this may sound silly to add, but a month before my rupture/sah I had to have my cat put to sleep, she was 18 yrs old and we had her from a kitten so it was very upsetting for me to lose her. The strange things is that every now and then I see a picture of her on my computer and realise I totally forgot we even had her, I don't know why my memory keeps blocking it but sah can do some strange things to us. 18 years of living with and loving her and it's almost like she never existed, it makes absolutely no sense to me. After a year though, I also started getting really vivid memories from things that happened 20 or so years ago, like it was yesterday, things I haven't even thought about in many years, that's weird too. I think it's just a case of waiting for the brain to make those connections again, but anything you can do to help it along is a good idea too.

Dear Sharong,

Thank you for your advice and sharing. You did not mention how long you have been suffering from the SAH?

I am trying to understand it all and be prepared for anything, I am beginning to think we still have longer to go than I first understood. I celebrate any small victory and treasure the lucid times I have with my husband. I feel guilty when I have lost my patience with him if he will
not exercise, I just know that it is so vital in this early recovery to keep moving and keep his brain challenged.
You have come so far and can recognize that. I find that amazing and wonderful. Best wishes for a continued progress.



sharong said:

agree with others that 6 months is still very early days. I barely remember the first 6 months after my sah. I also had no short term memory at all, I would do things like ask my husband the same question over and over, it wasn't just that I forgot the answer, I forgot I even asked him the question already, it's a really strange situation to be in. I also used lumosity, it will send you a reminder email and give you some exercises to do every day, but you can also just pick and choose which games you do. When I first started it was really bizarre, I couldn't figure out how I kept getting things wrong when I was so sure it was right, but over time it did get much better, I think it really helped me to get my brain working better. The thing is patience, you just have to accept what has happened and your brain is not as good as it was, but playing these games etc seems to get your brain firing again. I also did 3 different physio programs during the first year to get my balance and walking more coordinated. I remember being told that most recovery happens in the first year and I know that was true for me.

Just as an aside and this may sound silly to add, but a month before my rupture/sah I had to have my cat put to sleep, she was 18 yrs old and we had her from a kitten so it was very upsetting for me to lose her. The strange things is that every now and then I see a picture of her on my computer and realise I totally forgot we even had her, I don't know why my memory keeps blocking it but sah can do some strange things to us. 18 years of living with and loving her and it's almost like she never existed, it makes absolutely no sense to me. After a year though, I also started getting really vivid memories from things that happened 20 or so years ago, like it was yesterday, things I haven't even thought about in many years, that's weird too. I think it's just a case of waiting for the brain to make those connections again, but anything you can do to help it along is a good idea too.

djjscc, my rupture happened just over two years ago. I still have problems with memory, or concentration (multitasking can be really overwhelming for me still) but I'm doing much better. My husband had to remind me along the way that I was doing better and improving. As the person who had the sah, it's hard to see your own progress sometimes because it seems to happen so slowly, and your memory/brain fog gets in the way too of really seeing it.

I do agree with you though about your husband doing daily exercises and mentally challenging things. I did my first physio program after I left hospital, and on days when I wasn't working with a physiotherapist or assistant, I had exercises to do on my own at home. I was also working with an ot on mental exercises to improve brain function as well. My husband signed me up for lumosity, so my exercises and lumosity were on my daily to-do list, as well as things like having a shower, meals and brushing teeth etc, so for a long time my schedule was just those things (as well as a mid day nap). I wish I knew what to suggest, your husband would really benefit from doing these things but I don't know how you could get him to do it.

Djjscc...

Has your hubby had extensive eye testing? A neuro-oph?

Has he had extensive hearing tests?

Has he had any neuro-psych testing done? Even the very basic before discharge?

Moltroub supplied a "basic brain"...recovery brochure (from a clinic in FL)...in the "resources" category.

I have added some basics on our brain lobes/structures/cranial nerves... (basics...not completed)

From my own med records...I came across some terms like: gliosis and exvacuo...

Way back when, this BAF site had an "ask the doc" forum which was lost in the transition to Ben's Friends' management... however, one med-advisory board member did explain that gliosis is scarring of the tissue...and, that exvacuo (an antiquated word)...was/is Normal Pressure Hydrocephalus...which in general is 'maintained flow of CSF'...thus, no shunt needed (but the tissue did shrink...and my lateral ventricle has expanded...)

Because our neuor-psych testing (likely some of my records) note 'cognitive impairment'... something jogged my thought...to which impairments heal...and, which expand/worsen... For along time here...I have so recommended neuro-psych testing and f/u's...where tests can show healing, decline, to 'no change"...and at interval (timeframes) tests...some tests stop, others are added...and, others continue..

And, somewhere/somehow, my memory was finally jogged...that those impairments not healing...could become a dementia...which I began to search...dementias...

First...shocked when the www.alz.org includes the "normal pressure hydrocephalus" ... which includes symptoms: difficulty walking, decline in thinking skills, loss of bladder control...there are numerous other sites including NINDS...and PubMed... and, the other various dementias are noted...and may be useful in comparing symptoms noted.

Prayers my addressing some of these issues is not overwhelming...I can only express my personal opinion in the need of appropriate testing...to determine appropriate therapies...and, f/u tests to track the improvements, declines, or no change... I do not know what your hub's doctors have covered, suggested, recommended, and/or completed with him and you.

Dear Patioplans,

Thank you for the complex information that I am trying to get a handle on. I do feel that I need as much information as possible, but also sometimes need it translated or explained for me. Makes me feel so inadequate, but I am learning all the time.

He has had eye surgery to remove a pool of blood over the retina of his right eye. He can now see out of it very well. He has not been tested for hearing, but I have noticed he is hearing much more acutely than before. Loud sounds, babies crying etc bother him. Bit of a problem as we have 2 new Granddaughters, just 4 months old now.

His progress seems to be always positive, but just very slow. The incontinence is apparently a little better overnight, his cognition is a little better, his memory is still spotty. Especially for short term. I have a lot of trouble with him insisting I am wrong and he is right about most things. He is an intelligent and analytical man, he has always used me as a "blame board" when he needs to find someone to blame. I can take it mostly, but it wears me down at the moment. I try to keep positive and play Polyanna's glad game. The relief of a good blub now and then also helps. My kids are very supportive and always looking for answers too. I am so very lucky he is still here, I just want the man I married back. Maybe that is too much to hope for. But thanks to you and everyone else on this website, I am getting some help in that direction.

patioplans said:

Djjscc...

Has your hubby had extensive eye testing? A neuro-oph?

Has he had extensive hearing tests?

Has he had any neuro-psych testing done? Even the very basic before discharge?

Moltroub supplied a "basic brain"...recovery brochure (from a clinic in FL)...in the "resources" category.

I have added some basics on our brain lobes/structures/cranial nerves... (basics...not completed)

From my own med records...I came across some terms like: gliosis and exvacuo...

Way back when, this BAF site had an "ask the doc" forum which was lost in the transition to Ben's Friends' management... however, one med-advisory board member did explain that gliosis is scarring of the tissue...and, that exvacuo (an antiquated word)...was/is Normal Pressure Hydrocephalus...which in general is 'maintained flow of CSF'...thus, no shunt needed (but the tissue did shrink...and my lateral ventricle has expanded...)

Because our neuor-psych testing (likely some of my records) note 'cognitive impairment'... something jogged my thought...to which impairments heal...and, which expand/worsen... For along time here...I have so recommended neuro-psych testing and f/u's...where tests can show healing, decline, to 'no change"...and at interval (timeframes) tests...some tests stop, others are added...and, others continue..

And, somewhere/somehow, my memory was finally jogged...that those impairments not healing...could become a dementia...which I began to search...dementias...

First...shocked when the www.alz.org includes the "normal pressure hydrocephalus" ... which includes symptoms: difficulty walking, decline in thinking skills, loss of bladder control...there are numerous other sites including NINDS...and PubMed... and, the other various dementias are noted...and may be useful in comparing symptoms noted.

Prayers my addressing some of these issues is not overwhelming...I can only express my personal opinion in the need of appropriate testing...to determine appropriate therapies...and, f/u tests to track the improvements, declines, or no change... I do not know what your hub's doctors have covered, suggested, recommended, and/or completed with him and you.

Djjscc, sharong and I are about on the same length of recovery. I ruptured Nov 2013 and Vasospasmed for weeks afterwards. I was once a problem solver, loved to read, do stuff, anything but sit still. After the rupture, I changed. I talk more now, it’s hard for me to read more than a couple of pages at a time. I could have read a book in a day or two, now it takes weeks. I don’t always remember exactly what I read but I get aggravated when I try to reread and my brain says “Jeesh you read this already”.

In the beginning year, my mind was literally black. I had no visualizations and no words running amok in my brain. For me as a problem solver, I could look at an issue and see it playing in my head with numerous outcomes, quickly. Both visually and verbally. I can’t do that anymore. I had lost my words and couldn’t explain it to anyone. It’s called expressive aphasia. I’ve seen one thing in my thoughts since that day and that’s it.

He needs time to heal. The doctors don’t know precisely how long or how much because every brain and every person is different. I’m statistically not supposed to be here. My doctor doesn’t put emphasis on statistics as much as she does the person. In all the data I have read, it can take up to two years for the brain to recover. My brain took about 18 months until the doctor said it was done doing the majority. But as others will say and has said, the brain doesn’t stop. It can get better with effort. Don’t get into too much hurry, the brain is a major organ and it takes time to heal. Push too much and it’s many steps back, don’t push enough and it’s no steps forward.

There are many, many variables - amount of damage to brain tissue, personality, drive, self worth, etc

In the beginning I was confused but am enough of a blarney talker to get by. I knew enough to tell my Dr that my synapses were not firing correctly across my corpus collustrum. I remembered a lot from earlier times. Because of the amount of blood that leaked into my space, I guess the doctors thought I would have a lot more brain damage.

I would suggest getting your primary physician to get him into Occupational Therapy, Speech Therapy (my ST had me counting money, cooking, etc) and Physical Therapy. (I had just had major back surgery the year before so it was still imbedded that I needed to walk daily. If I hadn’t had the surgery, I wouldn’t be walking) If your Primary doesn’t know which to do first, have him or her call the Neurosurgeon. The more you allow others to encourage him, the better you both will be. I also had to use sticky notes, phone reminders, white boards for simple things like hygiene, eating, drinking, etc. I like responsibility and as I progressed would give daily goals for me to meet, be it a load of laundry, cleaning, etc. it was a major trial and error. There are some things I cannot do by myself (like cook) but many things I can do without assistance.

As a person who experienced a SAH, I can’t caution caretakers enough not to enable. Sometimes I feel as if my partner talks to me like a baby and it sets my temper in a foul mood. Sometimes I am able to ascertain that my speech has declined and this is what has caused the lower speech. Sometimes it’s because my partner has gotten very scared and is reacting to the fear. I can normally let this slide. There are times when I think that my partner would like it best if I was chained down, but sometimes I am the one who put the chains on to begin with.

Your husband is probably trying to figure out what has gone awry, he is more than likely very aware he is thinking differently. Give yourself a break, take a day off and go do something fun every week. If he needs to have someone watch him, look into some type of adult day care. I can’t remember what it’s called but Adult Services in your area would know. And there are ways to get scholarships or grants or something to help offset the cost if your income is high.

Thank you so much for wonderful advice and counsel. I am always wondering if i am doing the right thing, if I am doing what he would choose to do for me. Such a burden but I am ever hopeful. If he can recognize his capabilities and get some motivation to do things, I would be happy. I cannot leave him but I am trying to organize friends, family and maybe a paid Caregiver to take over for a few hours a couple of times a week.
Having realistic expectations is so important. We have been extremely lucky so far, I now know that this is going to take a lot longer than I was originally led to believe. I just want him safe, well and to come back.
I send you all the very best wishes for your own happiness and success. Sharing your knowledge is a priceless gift to us all, thank you again

I forgot the most important thing - hug him, right now. Just because…

I second Moltroub's advice about finding the best neuro-rehab outpatient therapy in your area! I suffered a SAH in 2013, severe enough that I cardiac arrested during the procedure to coil my aneurysm. I spent thirteen days in the Neuro ICU and 8 days in an acute inpatient rehab before being released to go home. My memory and cognitive functioning was terrible! I had few memories of the preceding days in the ICU or rehab, however once I began an intensive outpatient program, it was like a light was turned on. Three days a week, I attended from 9am to 330 pm and had a "class schedule" with various disciplines that included speech therapy, physical therapy, occupational therapy, as well as group sessions and meeting with a psychologist. The psychologist asked me during the first week what my goal was and I responded that my goal was to complete therapy and return to work in six week. He just smiled and nodded, as I'm sure he thought I was delusional! I did complete therapy and returned to work full time 6 weeks later and a short 9 weeks after my sAH. I honestly do not think I would have recovered as quickly without that extra therapy! Definitely ask your neurosurgeon or primary MD if any such program exists in your area. Best wishes to you and your husband. I know how difficult it was for my family. I think even more difficult for them, than me.

I thought of something else, can your PCP get In Home Care. Perhaps PT and OT. This way you get a couple hours break. My parents both had this last year, in the beginning, I felt the need to be there and answer questions. Then as the different people learned my parents, etc. I was able to go outside for a time, even go to the store. They were a godsend when things got awry, and helped me work through the medical maze when,y parents required it.

Also look for respite care, this can often be supplemented by insurance and will give you someone bonded. I think most of this, if not all can be done by your PCP.

Yes thanks I will be looking in to all that. Great suggestions!

Moltroub, you are amazing! Thank you again!

hugs



Lisa Eriksen said:

Moltrub, you are amazing! Thank you again!