Jump to content

time scales for recovery


Recommended Posts

Hi, good to find every body here. I had SAH over two years ago. I did a lot of web searching and info finding after it first happened, largely because the doctors were useless. After I left hospital I felt totally abandoned. Unable to work and being told by benefits office I was ok to go back to work.I often feel like a fraud. Any way here I am two years on and still struggling with tiredness, headaches, loss of concentration annd memory and 'cotton wool' head, so here I am back on internet. Are any of you experiencing the same difficulties this long after ????. I dont want to put a downer on any one because I know of people who have recovered quicker than me -just looking to not feel so alone in this I suppose. caroline

Link to comment
Share on other sites

Hi Caroline,

yep, I've got all of those. My SAH was Sept 1st 2010. I managed to hang on to my job but it is very hard going and I sleep for England. If there was a gold medal for it this summer I'd definitely be in the running (or lying down!). I am also sensitive to artificial lights, particularly if headaches are nearby. I'm n9ot sure there is a timescale for getting totally better for any of us. All seem to be experiencing different things and going at their own pace. It's very frustrating and the angst is the same whatever stage you are at. Just keep chugging along doing the best you can. Managing your condition seems more achievable than eradicating it, but keep having a whinge and a rant. It does you good to get it out of your system and we have all lived it on here. This is a great place to be and we're glad you found us. Keep posting.

Good to have you on board.

Macca

Link to comment
Share on other sites

Welcome to BTG ....I had mine 2009...still cannot walk that far...but getting there slowly.....

It is a long haul..but never give up...you need a sense of humour and the right attitude...don't let it beat you xx

I wish you all the best and keep your chin up when you have down day.as after the down days you will get good days.....

Good Luck Caroline

WinB143 x

Link to comment
Share on other sites

I had mine in June 2010 (anni but no rupture) & have not yet made it back to work. Part of my problem is that I still have double vision & the more I concentrate visually the tireder I get.

I don't really get bad headaches but I do get the woolly head feeling & my memory & spelling aren't so hot, my typing speed has reduced greatly too.

I have just applied to do some voluntary work to see what I can do, I know I can't multi task or be pro active rather than reactive & I do worry that my max period of concentration still hovers around the 2 hour mark & then I hit the wall of fatigue. Fatigue is a big one for me, it seems no matter how I sleep I am always tired

BTW welcome to BTG & I think we can all iidentify with the lack of info on discharge!!

Link to comment
Share on other sites

Hi Caroline,

I have just passed 4 yrs since SAH & totally empathise with what you are saying. Sometimes, I feel I don't want to say too much on here in case it drags other people down if they are still earlier on in their recovery.

It was almost 2 years before I got any support at all (incidentally it was the brain injury support worker who I met at that time, that mentioned BTG to me - I am so glad she did!). For a lot of people all of the problems DO get better but not for all of us. I did go back to my old job for those 2 yrs but it was absolute hell & exhausting as I was just not capable of doing my job any more. Four years on, I still have massive fatigue & constant head pain. I have had neuro psychology testing (at the 2 year mark) which was in a lot of ways totally devastating, I cried for days, ranted, screamed, swore & refused to believe it. Now I am very glad I had those tests - they clearly identify where the damage to my brain has hit. I have had on-going counselling since which has helped me to understand that the cognitive issues, fatigue & pain are likely to be permanent after this length of time. I really needed help to come to terms with this. I still hope that at the very least the pain & fatigue may improve (and it is possible that they might) the cognitive skills and memory will not improve but that is ok(ish) now.

Can you ask for cognitive testing to help you understand and deal with the impact it has had on your life? For me personally it was an upset well worth going through to get to the badly lacking after care.

Good luck and it's nice to meet you on here.

Michelle xx

Link to comment
Share on other sites

Welcome to BTG!

I’m two and a bit years post SAH and I am most definitely not ‘cured!’

Mental fatigue is my nemesis and this impacts upon my life in a way that many people fail to understand.

In living with a brain injury, I also live with people’s misunderstanding of my abilities and I find this very frustrating. There are some people in my life who ‘get it’ but others, although well meaning, can be confused by my condition.

Social contact needs to be controlled significantly. Tasks which require deep concentration can only be executed in brief spells. Crowded, busy environments are energy sapping and kind invites from friends to go on shopping trips are always declined. I am unable to meet friends for drinks as the noise of bars and hopping from venue to venue would be impossible to enjoy. I am also more forgetful and absent minded than before and neither can I multi-task. But 'I look well' and am often judged on this alone.

I am no longer depressed about my circumstances, although I do not like them; but I do however consider myself ‘at peace’ with it all.

There are ways I manage my condition. For me, carving a different existence was necessary and I stopped trying to slot into previous routines. I used to run marathons, enjoy festivals and music gigs, but to engage in these things to a lesser capacity is just painful. It reminds me of what’s been lost and it doesn’t make sense to engage in hobbies which make me sad.

I have carved a different identity for myself. My ‘hobby’ is now my voluntary work. It is social contact in a ‘structured’ way and in working with impoverished people I have a greater gratitude in how fortunate I am to have been born into a family who has the resources to support me.

I access counselling at Headway and this continues to have a positive impact.

As I’ve said previously, I’m at peace with my circumstances but I am still trying to reconcile within myself, people’s misunderstanding of my abilities. It can leave me upset and frustrated when people overestimate me, but I am making some progress in trying to not let things aggravate me so much.

Self -acceptance is a peaceful stage to reach but I’m finding other people’s inability to grasp things a tad trickier!

Link to comment
Share on other sites

Welcome to BTG!

I’m two and a bit years post SAH and I am most definitely not ‘cured!’

Mental fatigue is my nemesis and this impacts upon my life in a way that many people fail to understand.

In living with a brain injury, I also live with people’s misunderstanding of my abilities and I find this very frustrating. There are some people in my life who ‘get it’ but others, although well meaning, can be confused by my condition.

Social contact needs to be controlled significantly. Tasks which require deep concentration can only be executed in brief spells. Crowded, busy environments are energy sapping and kind invites from friends to go on shopping trips are always declined. I am unable to meet friends for drinks as the noise of bars and hopping from venue to venue would be impossible to enjoy. I am also more forgetful and absent minded than before and neither can I multi-task. But 'I look well' and am often judged on this alone.

I am no longer depressed about my circumstances, although I do not like them; but I do however consider myself ‘at peace’ with it all.

There are ways I manage my condition. For me, carving a different existence was necessary and I stopped trying to slot into previous routines. I used to run marathons, enjoy festivals and music gigs, but to engage in these things to a lesser capacity is just painful. It reminds me of what’s been lost and it doesn’t make sense to engage in hobbies which make me sad.

I have carved a different identity for myself. My ‘hobby’ is now my voluntary work. It is social contact in a ‘structured’ way and in working with impoverished people I have a greater gratitude in how fortunate I am to have been born into a family who has the resources to support me.

I access counselling at Headway and this continues to have a positive impact.

As I’ve said previously, I’m at peace with my circumstances but I am still trying to reconcile within myself, people’s misunderstanding of my abilities. It can leave me upset and frustrated when people overestimate me, but I am making some progress in trying to not let things aggravate me so much.

Self -acceptance is a peaceful stage to reach but I’m finding other people’s inability to grasp things a tad trickier!

Lin-Lin, thank you for those words. It is lovely to have the support and well wishes of others but sometimes I just need people to back up what I have found personally & make statements that prove that how I am now is OK and that I don't have to keep fighting. I am how I am :biggrin: Thank you for stating it as it is - I still struggle to make myself THAT clear. I did the battle but did not win the war to the extent I hoped to. Your words make me feel that what I have achieved is good & I hope to be as upfront about it as you some day, without having to make excuses for myself. THANK YOU xxx

Although, I have never run a marathon & do not have a family who chose to support me I have to say - my skills at copy & paste are still a bit rubbish :lol: The rest applies!!

Edited by goldfish.girl
Link to comment
Share on other sites

Hi, good to find every body here. I had SAH over two years ago. I did a lot of web searching and info finding after it first happened, largely because the doctors were useless. After I left hospital I felt totally abandoned. Unable to work and being told by benefits office I was ok to go back to work.I often feel like a fraud. Any way here I am two years on and still struggling with tiredness, headaches, loss of concentration annd memory and 'cotton wool' head, so here I am back on internet. Are any of you experiencing the same difficulties this long after ????. I dont want to put a downer on any one because I know of people who have recovered quicker than me -just looking to not feel so alone in this I suppose. caroline

Hi there Caroline

I'm six years post SAH in August. It took me at least a year to stop having mid day naps and get my sleeping patterns back to normal. I still suffer from woolly head syndrome occasionally but normally when I haven't had enough sleep. One thing I have noticed is that I don't catch colds as often but when I do they knock me for six whereas I used to be able to shrug them off within a couple of days. Sudden loud noises now annoy me rather than scare me.

I found that keeping my brain active even when I was resting helped me - I do a lot of crosswords and wordsearches etc just to keep then engine ticking over without too much physical exertion. I can honestly say that six years on I do feel 99.9% recovered other than some physical limitations such as exercise - I used to jog and do step aerobics twice a week, now I can't because of the impact it has on my head - so now I swim and use a strider to exercise. I'm working in a primary school 9 - 4 every day term time only (funnily enough I am off work ill today with one of the aforementioned colds).

I think recovery is as individual as DNA but everyone on here helps everyone to try to stay positive and knowing that you have that support helps a great deal I think.

Edited by Skippy
Link to comment
Share on other sites

Hi Caroline and warm welcome

You'll find that we're all different, different in the extent to what happened different in how long it takes Im 12 years on there is no time scale, but yes I too have all that.

The only one thing we all share is the feeling of being abandoned from the hospital, & the minefield of the Benfits.

take care

Link to comment
Share on other sites

Hi Caroline,

I have just passed 4 yrs since SAH & totally empathise with what you are saying. Sometimes, I feel I don't want to say too much on here in case it drags other people down if they are still earlier on in their recovery.

It was almost 2 years before I got any support at all (incidentally it was the brain injury support worker who I met at that time, that mentioned BTG to me - I am so glad she did!). For a lot of people all of the problems DO get better but not for all of us. I did go back to my old job for those 2 yrs but it was absolute hell & exhausting as I was just not capable of doing my job any more. Four years on, I still have massive fatigue & constant head pain. I have had neuro psychology testing (at the 2 year mark) which was in a lot of ways totally devastating, I cried for days, ranted, screamed, swore & refused to believe it. Now I am very glad I had those tests - they clearly identify where the damage to my brain has hit. I have had on-going counselling since which has helped me to understand that the cognitive issues, fatigue & pain are likely to be permanent after this length of time. I really needed help to come to terms with this. I still hope that at the very least the pain & fatigue may improve (and it is possible that they might) the cognitive skills and memory will not improve but that is ok(ish) now.

Can you ask for cognitive testing to help you understand and deal with the impact it has had on your life? For me personally it was an upset well worth going through to get to the badly lacking after care.

Good luck and it's nice to meet you on here.

Michelle xx

GG, I wanted to let you and other senior members know that I absolutely love hearing about your experiences years on into it because it gives me a sense of, "I'm not crazy!" If I know that senior members still identify themselves as being in my same group, then this community is here for me how ever many years I need it. Then I can pass on the wisdom like all you senior members do for me...for another when I'm a senior member.

Thanks so much each and every time you post - the honesty really does help me.

~Kris

Link to comment
Share on other sites

Hi Caroline and welcome I think we all have after effects from the SAH and have to find ways of living our lives around them. I suffer from what is now classed as chronic head pain most likely cause being a trapped nerve from the surgery but have been told to learn to live with it. The fatigue is a lot better than it used to be but can creep up on me when I overdo it.

I have adapted my life/work balance which has helped a lot but I do find concentration and multi-tasking very hard and working in an incoming call centre it can be very challenging at times but also funny as finding the correct words if I'm tired is a problem luckily most people laugh with me when I'm having problems finding words or speaking double dutch.

Link to comment
Share on other sites

thanks so much for all your answers. So good to be understood and know that you are coping with similar things. If any one else tells me how well I look ! grrrr.

Hi Caroline,

yep, I've got all of those. My SAH was Sept 1st 2010. I managed to hang on to my job but it is very hard going and I sleep for England. If there was a gold medal for it this summer I'd definitely be in the running (or lying down!). I am also sensitive to artificial lights, particularly if headaches are nearby. I'm n9ot sure there is a timescale for getting totally better for any of us. All seem to be experiencing different things and going at their own pace. It's very frustrating and the angst is the same whatever stage you are at. Just keep chugging along doing the best you can. Managing your condition seems more achievable than eradicating it, but keep having a whinge and a rant. It does you good to get it out of your system and we have all lived it on here. This is a great place to be and we're glad you found us. Keep posting.

Good to have you on board.

Macca

Link to comment
Share on other sites

Hi Caroline,

I'm nearly 7 years on (next week July 25th, a date I'll never forget! :wink:) I'm still experiencing recovery, so don't give up.

I think that the Doc's should set a realistic minimum recovery period, which I would set at a 2 year minimum, both for physical and mental recovery ...not enough research has been done in this area and it often makes us, the SAH patient feel pretty lousy that we're not achieving what we've been told.

Keep well, life does get better...xxx

Link to comment
Share on other sites

Hello,

Thanks to all for replies. I think we all want to know when we will get "better" but unfortunately there are no good timelines. Karen, I like the two year mark. Makes me feel good as I am approaching one year on 7-30. Sadly I feel worse today than I did 1 month post SAH as I returned to work after two months. Felt about 72% then but 50% now.

Have headaches, fatigue, leg pain, weakness. But as Macca said, it is a matter of managing it. Hope it gets better for you Caroline and for all of us.

David

Link to comment
Share on other sites

Hi David,

I would always say that you need to measure yourself up against the person that left hospital and not life pre-SAH. It's probably helped me to keep sane, as I tried to return to work and didn't manage it, even though I thought that I would be completely "healed" at 3 months.....hmmmm...:wink:

I think that going back to work at 2 months post SAH is pretty unrealistic in terms of recovery both physically and mentally and in my books, you're doing fabulously to have continued and to have managed work. I think that you're doing extremely well, even though I can read between the lines and can perhaps see that you've struggled and are still continuing to do so....it's not easy is it?

1 year post SAH is a good point to reach and I hope that you go out and celebrate what you've achieved in the last year, as it really is something to celebrate...

I hope to see you posting on this site at your 2 year SAH Anniversary ... life post SAH isn't what I wanted, but it does get better and recovery still happens..xx

Take care and wishing you well...xx

Link to comment
Share on other sites

  • 2 months later...

I asked my consultant to give me some idea about recovery timeframes, and he said that for a lot of patients they would be 50% recovered at 6 months, 90% at 1 year and as well as they were going to be at 2 years. He did qualify this and say that there are always exceptions to the rules, but it was something to perhaps think about and certainly you should not expect yourself to be "fixed" immediately....the brain will take a long time to heal itself.

I hope that this helps.

Link to comment
Share on other sites

I know this is fairly old thread but just wanted to say...Ready?

When I had physio, my family were told not to hold too much hope, look at me now, I can go to toilet - well I can lol

I can wash my face etc ..I was told I would never do much for myself ...but I had to prove them wrong, awkward so and so I am.

I get tired, and I do not work but I had mine in 2009 along with every bug that came near me, I got them.

You will get better David but it's a long haul and hard work...So Chin up and be a brave soldier.

Trust me after 3/4 years it gets better and better. off days Yes but we had them before SAH.

Now go and get em pal xx and never say never xx

Good Luck Pal and keep going okay? xx

Love to you and family

WinB143 xx xx

Link to comment
Share on other sites

I know for a long time, there was this study that was re-quoted in the literature and still is pervasive today that states that 3 months is the time it takes for 90%. This 'research' was done way back in the 50s I think and has no basis. It was just some doctors who expressed what they thought was it. They had not experienced it or even followed up with post nursing home stays. Now it seems like experiments with followups usually are after 18months...I even think the 2year mark is more reasonable...however, everyone is so different. I thought to myself, your young, in good shape, you'll recover faster than most. Well, it doesn't matter what I want, SAH has a mind of its own and I don't control it. However, I just keep accepting as I go and that acceptance is always changing as new challenges come into the foreground and others that seemed important fade.

The first I heard was, 'She'll be fine.'

Then, "She'll be out in a week."

Then, 'This might take 3 months.'

Then, 'We don't like to say.'

Then, 'It's not until 2 years before we like to evaluate.'

I just wish the first 3 never were said to me because they were totally bogus and based on what the old literature said. I even told my occupational therapist about the horrible feeling that comes when they give you a bogus date, but she said, 'Well, some people like to have a date." A bogus one not based in reality of any sort, really?

Bluh, Doctors and health care professionals are terrible with semantics sometimes!

~Kris

Link to comment
Share on other sites

I went to see my Doctor, about backache, I can talk to him he is okay when in good mood..lol

He said to me "Well you have done well haven't you, You should be pleased" lol he is sweet but I told him I need physio

for back when I walk..I await his reply???...I look like Quasimodo when I walk..lol

My hubby said "could it be her weight ? " So I'll be lashing out when asleep ..lol

Love to you all and Smile xx

WinB143 xx xx

Link to comment
Share on other sites

Kris, I was automatically signed off work for 3 months & horrified to be told that :shocked: I didn't stay off for that time though & it's interesting to hear that the 3 month timescale dates back to the 1950's. It is surely time for the medical advice to be updated. Having said that, after my 2nd brain op to coil a further anni, I was signed off for a week & had to ask for longer at the end of that week - I got one more week and felt that ready or not, the doctor says that's all I need :crazy:

I do agree though that the cognitive testing should be put off for a year or more. My testing was at 21 months and the results totally unexpected (to me anyway!!). It was explained to me after that the healthy brain cells surrounding the ones that got damaged in the bleed go into hibernation in order to protect themselves from damage and slowly awake over time when they think it's safe to do so and take over work that was previously done by the damaged cells, hence the advice to wait for cognitive testing.

It is really good to have a psychologist/therapist on board here to help out with historical thoughts on brain recovery issues and have an awareness from personal and professional experience to question those somewhat outdated views.

Thank you for sharing what you have learned.

Michelle x

Link to comment
Share on other sites

Just going to add what my neurosurgeon said to me, 3 months for the vertebral artery dissection to heal. As he felt it was just “as serious of a recovery as a brain surgery” at that time I had known I had a tumor near that spot- I do not know if he knew but I was not told until my 3 month recheck MRI with and without contrast. Saying something takes 3 months to heal is not saying you will be well in 3 months. But I think we grasp at any hope things will get better sooner. Guess we all had some wishful thinking there. I really thought I would be back to work in a few weeks, 3 months, etc….. I weaned back at 5 months and it was really slowly. Now I work the easier hours and have a day off in between my working days.

I was examined by my neurosurgeon at something like 1 month, 3 months and 6 months then I started seeing a neurologist- on my own as I had questions I felt I had to have answered as I had no idea what actually happen with the whole event (nor do I most of the time) as well as I was concerned with my progress in recovery. My GP was the one who said “some things will not get better for me” and he was trying to be honest and not crush my hope but it is true I have brain damage in areas along with some preexisting medical problems. I made him tell me the truth and I think if I were not so demanding not to be pacified with a PAT answer he would have gladly lied to me. I am still seeing my neurologist (2nd one) I will see him for the 3rd time next month on my progress with new medication.

After having my neuropsychological evaluation at about 9-10 months post SAH & stroke I thought that was almost enough time for me to be evaluated but I do not think anyone now should have that done sooner. I think they will not really have any real answers until a year after your SAH. That is my understanding. They just need time to see where all the pieces fall -so to speak. In hind sight I still cannot wrap my head around my brain issues which seems so strange but I think it is pretty common. But I can see improvements and I am so much better than I was just 1 or 2 or 3 months ago. I had my SAH & strokes Sept. 16. 2011.

Just wanted to add my 2 cents worth to this conversation. I do recognize we all have injuries in other areas and are not the same with extent of trauma. Along with personalities not saying someone would not fight as hard but if I am looking at myself on this one my mom would given up hope and my dad was a fighter and lived so many years beyond his doctors wildest dreams! Along with having a good quality of life even with all his limitations.

maryb

PS. I will do jsut about anything including cut my hand off if I can have a 1/2 way normal life again, I will take the Ritalin I was prescribed and keep my fingers crossed as I feel it has "WOKE" up brain cells that were gone. Parts of my brain that did not work like processing. I am pretty pleased I can plan and cook a meal- cannot plan too many days in advanced but I am pleased I am this far because really 2 months ago I did not see me ever getting off the sofa!!!

Edited by MaryB
Link to comment
Share on other sites

Hi Caroline and everyone else,

I am 4 months now post SAH, and I agree with the lack of follow up and "answers" from the MD's. I went back to work after 7 weeks, and I know I was not ready. I am an ER nurse who puts in 12.5 hour shifts from 3p-3:30am, and between the crazy hours, the emergent nature of my job, the commute and the constant headaches, the stress is getting to me. Most people think that if you look ok, you feel ok, I also hate always feeling crappy, so when asked I say "I am fine". Sometimes every bump in the road hurts the base of my skull when I am driving home. Most weeks I have 3-4 migraines. I was never sick before this SAH. What helps me most is forcing myself to eat well, drink lots of water, and exercise. It is frustrating not to have the stamina I had before, (used to be able to run 12-15 miles), now I am happy running 2-5 miles. I am slower, but at least I am moving. My emotions run deeper, and I am not that upset about turning 51 in a few days! I am just happy for my kids I am alive. I do miss my red wine. (now I just whine)

So far I am on my 3rd neurologist, most of the headache drugs have side effects that are as bad as the headaches. I am going to keep looking for answers and attempting to find a doctor that can help me. My hospital had a headache center that I am seriously considering, I am also going to try alternative medicine, because, plain and simple...daily headaches....really suck!

I always log on to this website for encouragement, and it helps knowing I am not alone. I seems, the head injury does heal with time, but I really am not the same.

Take care,

Charisa

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...