I would love to hear from others to find out if my experience is "the norm". I had a bout of endocarditis which caused a "storm" of TIA's (this is what the docs said). They did not seem to have any physical impact. One year later, I had more TIA's and this led to an operation...a 3way bypass, a valve replacement, and I woke up with a dead left arm so clearly I had a stroke during the op. Three months after that, I had to have further through-the-leg surgery to repair gaps which had occurred around the valve, another 5 hrs under anaesthetic. I am now 6 months on from the major heart surgery, and still feel I am struggling to recover.....unsteady on my feet, heavy and slightly dizzy in the head, left hand and arm feels uncomfortable to use tho I can use it, hair getting thin......... and I keep thinking perhaps I am complaining unnecessarily as so many are so much worse, and I should be happy...but I get terribly emotional as everthing is such an effort. My doc says I should not be surprised as I have had "a lot". Am I being stupid to be so unhappy with the current status quo?
I wonder if I can state some of the obvious. TIAs are not trivial andnot to be ignored. Howevr, the word Transient means you will not have any lasting damage from a TIA.
Next, the query that you had a stroke. It sounds exactly what you had. A "full" stroke. This will be shown on your letters from the hospital to your GP. It is 99% likely to be a bleed or a clot.
A stroke is very slow to get recovery. Many of us, in fact a huge majority of us, get "post stroke tiredness" (again, scout through your discharge letters) and a few of us coined the phrase "stroke fatigue" which is just us SS chatting and not a medical term.
It is a big pain. Your brain suffered a stroke and needs to recover, so your brain needs endless rest. And plenty of water. I found it helpful to write a stroke diary and monitor the level of this SF. And to relate lack of sleep etc to the level of faigue. SF does ease but it can easily take two years and more to recover. So please do not ever give up. Things on this front will improve, I promise you that much.
Next is the physical recovery. Please keep all your limbs moving. Every day, move them. Walk a little, Wiggle your digits. But keep everything moving.
Next on this never ending list is cognitive damage. We often suffer from emotionality. But that will ease in time. In the meantime expect tears in excess and often without reason. A real shock for us blokes who dont cry, well we do now. And depression. Stroke sends waves of depression to attack us. Bat them away as best you can. Smile endlessly (that really works) and be positive, for instance think what you can do and not what you can not.
Next...no you are not being stupid. No one understands what you are going through, other than another SS. We understand. So lean on us, draw your strength from us. We lknow what you suffer.
Finally the heart problems. Thats a most unfair double whammy.
I have developed serious heart issues in the past six months. All I can add is that it is very hard to tell what is SF and what is heart problems. I will be having surgery to fix the heart, just one valve, and I will then be able to tell what was heart and what was SF.
So no, you are not the norm. None of us are. Every stroke is different. But most of us have some of the symptoms from which SS suffer.
You have been dealt a foul hand. How can you possibly be happy about that hand. If you can find some good things then focus on the good things. Smile. Be positive. We are here for you
Rats. I wrote a reply then my dodgy hand hit a wrong key and I lost it. So sorry, but Colin just so you know I am really grateful. I thought I was being a misery and a hypochondriac. I do try to keep moving...3000 steps a day if I do not go out for a walk, 5-6000 if I do, but I tend to pay for it after that, for a couple of days, pushing through seems NOT to help, it seems to make matters worse for a few days. I am learning tho. It just goes so much against the grain for me to sit and do nothing, I am a "creative" and my studio beckons. I go out there...it is in my garden...and I can manage half an hour or so but then have to go indoors and sit down to recover. I hate that. And I am not over fond of my body in general now, and my irritability. But if you say things do get better with time, I will take comfort from that, keep moving as best I can, and hope I last long enough to receive and appreciate those better days to come. thanks again.
ps I have looked thro the letters from my cardiologist to my doc, and cannot find much in the way of reference to the stroke which occured during surgery...only a brief mention of TIA/STROKE in one doctor's letter, the doc who performed the repairs earlier this year. Otherwise, they just discuss the details of the surgery, which was long and complex and they talk a lot about all the various complications I had afterwards. I think they actually did not realise about the stroke until after the surgery, when I pointed out that my arm was not working, at which point, they seemed surprised, tho they did wheel in a neurologist who simply said it "would improve". After that I did see an occupational therapist, so they did take it on board, but not in any major way. Which is why I called it a "minor stroke" and rather feel I am making a fuss over nothing...........
Colin, I forgot to say I hope all goes well for you with your surgery and that you recover quickly. Jackie
I have deleted part written posts many times. I will press the button on the side of the mouse and this deletes the SA posts. I will often reply on "word" then copy and paste when I have finished. I also find the second attempt is never as goos as the first.
I can only speak about stroke because thats the experience I have had plus a lot of stuff from fellow stroke survivors.
I would only do what I could easily do. For me that was 45 minutes of anything then a rest of at least 45 minutes. Pushing through just made things worse. We need rest rest and more rest.
If you can work out things that do not tire you, then the day will fill up nicely. I can watch TV and type away on my PC. But reading tires me quickly and anything to do with my old work will exhaust me in minutes.
So we get mentally tired. We get physically tired and then on top of that we get emtionality. Crying, laughing, irritable, cross any or all of them. It does ease, very slow but it does ease.
I would want to know whether or not I had a stroke. That will show as an infarct on an MRi scan. The infarct is an area where the brain has been killed off. It doesnt regrow, it is permanent. There is then an area around the infarct which might repair, or might partially repair. This relates to clot type strokes. Bleeds might be different.
Some may not want to know. There is no right or wrong.
If you carry on with your positive attitude and your steadily working at more movement etc then things will improve. Your brain will be looking for alternative pathways to avoid the dead area. This is apparently known as neuro plasticity.
I must say I took the corona confinement badly. I have chipped away at recovery for 4 years and now I get confined for goodness knows how long. I also have the added bonus of necessary heart op, to replace the aortic valve. I am utterly terrified of going to the hospital. Irrational fear (another stroke delight).
Keep at it Jackie. Things will improve.
Everything you say resonates so profoundly with me Colin. I checked my letters, and yes, I had a stroke. 45mins action and 45mins rest sounds about right. I cook supper for hubby which involves a lot of toing and froing around the kitchen and standing to cook, which makes my head spin and I get more and more exhausted. So thank goodness he does the washing and tidying up after, tho he mutters about it a bit, says I am untidy but it is not so much untidiness as sheer "oh I just cannot do one more darn trip to the larder or fridge to put stuff away" and I really mean, I cannot possibly manage one more step. I feel I get weaker by the day even tho I know I do more "steps" on some days than ever before. I do about 5000 some days, 2000 on a bad day. But my legs feel like jelly by the end of the day and typing is an effort. I just want to sit and sob sometimes. I used to be so capable. Now I drop things all the time, it drives me nuts! The Positive Attitude gremlin doesn't get a look in some days! I so wish I could go and get some Hyperbaric Oxygen Therapy, as I have seen what it can do for SS, if the brain matter is not totally necrotic, it actually can regenerate dormant brain cells. But the centres are all closed and I would not want to go sit in a chamber with other people right now. What a this Covid thing is. And even more annoying is that despite the fact I am 75, with chronic heart issues and having had a stroke, I still have to queue for hours to get a delivery slot for food, I do not fit with the government's ruling about those most vulnerable, it is crazy. Colin, I really hope your surgery goes brilliantly...I am sure you will be kept well away from bugs, tho I quite understand your fears and would share them. My hopes and prayers are with you. One last thing...does anyone know if there is any particular kind of therapy one can do other than just walking and general rehab with a theraband for the arm.........I suspect my arm and leg are getting weaker. And if anyone knows what could help with the slightly spinning head...I just feel unbalanced most of the time...are there tablets which help? any advice would be really appreciated. My cardiologist just shrugs and says "you need physio".
Thank you Jackie,
Ideally you could have physio and then perhaps seated yoga. But the virus is making that nigh on impossible. I try to move everything and that helps me. Your limbs should not feel weaker. Maybe you are doing too much ???
I get stroke fatigue, diagnosed as post stroke tiredness. It has eased over the years but I have not found any medication. It is, in my opinion, essential to get the right night time sleep and then any daytime naps that my body tells me about. Get rest, no stress and things will ease, but its all slow slow slow.
I am being prepared for heart surgery right now and I look forward to seeing if that was a big part of stroke fatigue. But the SF was with me for 3 years before my heart decided it had had enough.
Keep on keeping on. Smile a lot and be positive,
Colin you keep popping into my head, as you said you were being "prepared for heart surgery" I wonder if that was literal...if so, then you are 4 weeks on from that surgery. Perhaps it was not really literal, you were just generally organising stuff...I do hope that you got your surgery despite the Virus conditions, and that you came thro it safely. 4 weeks is not long but some people are up and about quite fast, hopefully you are one of those. My situation has not changed, if anything it is perhaps a bit worse, the fuzzy head is with me all the time and I am so unsteady on my feet. I had a brain MRI last week to see if perhaps I have been having more problems with tiny clots or something similar. Whatever....I doubt they can do much, they will just put me on blood thinners if I have had, or am having, little "incidents". I would love to be given meds to stop feeling like I am on the deck of a ship the whole time. It is now 7 months since my big operation, the thought of being like this for another year or two - or for ever - is not fun. Anyway, enough about me, I really hope you are the other side of your op and it was successful for you. Jackie
I have yet again wiped out a reply to you. Its so annoying isnt it.
Most of us get slow slow slow recovery, but it is recovery. So slow you cant see it, which is why a stroke diary is such a boon. You can look back and see how far you have come. I fear you have probably got another , on average 18 months, to grind through, but nearly all of us do get recovery within two years.
The corona situation just piles the agony on.
Blood thinners (clopidogrel) works for me. I tried switching for five weeks and it made no difference. But we are all different. The thing that is most certain, is that you need the right amount of sleep. And then day time naps as well. For me, its 7.5hrs night time and perhaps an hour in the day. If I dont get that then recovery is hopeless. Sleep means a lot. And boy did I have to work at that.
I am so sorry that you have been concerned about my comment that I was awaiting surgery. I write a lot on this site and didnt want to think that you guys thought I had abandonned you. Yes I was awaiting heart surgery. It was very serious and urgent. Talk of just a few weeks to live etc. Well I had the surgery and they confirmed I got there just in time. Replaced the aortic valve. It was too far gone to do the "tavid" which has a fast recovery. Mine was open heart surgery and that means I have twelve weeks of rehab. I am on week 4. But compared to stroke recovery, this heart stuff is a doddle. I can see improvement every day. Of course I cant see the consultant, nor the cardiac nurse, nor go to rehab. Its all closed. So I have to make up the rehab and stick to it. My GP has given decent support and even sent a nurse to me rather than get me to the surgery.
I am now going for a light lunch before I rub out this reply !
so glad you "got there in time". I know what you mean about seeing the recovery daily...that was how I felt when in hospital post surgery (I was there for 7 weeks because of the endocarditis) I did physio every day and felt stronger when I left hospital, than I do now! But my suspicion is that it is all relative...I felt stronger because I could see the progress, and since being at home, although my tracker tells me I am doing more every day, up to 4000 steps a day, in fact I lack discipline and do not do the exercises I know I ought to do. I find all exercise knackering! Even using a theraband for my arm. My balance has worsened and I thought for a while perhaps I was having more mini strokes but a brain MRI done last week shows no deterioration, so it might be something else. I am "seeing" via zoom, a vestibular physio who will assess me. I am interested to get her feedback.
It must be quite hard for you to be your own physio and even doctor, doing this stuff alone is not easy. I wish you well and hope that the coming weeks will bring more positive recovery steps. Knowing your heart is much safer now must give yuo some peace of mind. I hope so anyway.
best wishes Jackie
Lets look forward to the physios etc returning when we get a grip on the corona stuff. In the meantime online physios sound like a great idea.
I too find the motivation somewhat poor, because i am never sertain that my actions are the right ones.
Very much agree with your notion that its all relative.
However, this mornings walk started with me being very sluggish, but then I began to walk much much better than before. Progress!
This is indeed bad news that we have no medical supervision. Are we doing some harm at all ? I hope not and I push onwards
Colin, it is good, apparently, to push thro with physio. I had a long chat with the head of physio when I was in hospital, told him I had been to cardiac rehab and felt no different at the end of 9 sessions. He said that was probably because I worked within your limitations, and the only people who do well are those who force their muscles to do a tad more than they feel comfortable with, because it is only then that the muscles recognise that actually, there is a touch more energy there to be tapped into, and they are able to "reset" their computers to allow you to push further the next time. I slightly poo pooed this, thinking yes but it is not good to overdo it...but I suspect he was right. He also said he had been involved in a large survey of people whose recovery had been improved by exercise...or not...and he said that the only people who did not benefit over time were the couch potatoes. Hmmm....suspect I might be one of those......
Thank you Jackie. Interesting. I am not and will not be in couch potatoe category. My tendency is to do too much. I do find there is a conflict between, try hard with physio and do not do too much.
I totally agree. I just did three times around a small local lake - more of a large pond. 1000 steps to a circuit. I think it was one lap too many for me, but at least I did push thro the tiredness at the end of two laps.
Well done. Now look forward to the same again tomorrow. Thats the hard bit, but can be surprisingly successful.
Hi Colin, I have not forgotten how helpful you were to me on this site, and have been wondering how you are recovering from your op? I do hope you are making steady progress. Jackie
What nice things you say. Thank you.
today is the final day of my 13 week rehab. I am getting stronger and i used my petrol mower a little. The op seems to be a total success, although with no proper follow up i cant be sure. When i look back to being very adjacent to death, yes i am recovered rather well.
how are things with you ?
thanks for asking, Colin. I am, I'm afraid, struggling. For the past few months I have had problems with horrid balance/steadiness that I did not have before the February valve repair procedure; my acupuncture chap, a well qualified chinese fella, says it has somehow affected my central nervous system. I am also suffering with a very resistant urine infection which the doc is trying to clear up, loads of antibiotics, so I feel rather exhausted, very frequently. I am doing all sorts....acupuncture, osteopathy (she thinks there is a very tight muscle at the back of my right ear, maybe caused when on the operating table - hmm, feels tighter one side than the other so she may be right) and am even going 4 times a week for Hyperbaric Oxygen Therapy, which can help stroke survivors IF the brain cells have only been damaged rather than killed off. Most unpleasant in hot weather to sit with a heavy mask on, in a small chamber! But I feel worth trying. I am now 9 months on and sadly NOT feeling much better. Still get very emotional too, (which annoys my daughter But she pushes all my buttons, which doesn't help! ) So I plod on. Got myself a treadmill so even if it rains, I still walk for at least 10-15 mins before exhaustion sets in. Glad to hear you are out mowing, sounds good, glad the op was successful. Keep up the good work. Jackie
You certainly cant be accused of not trying !
It is often said that perhaps two years is a marker for stroke. Most of us can get decent recovery within the two years. And also the muscles dont fail too much until two years or so.
About your stage (9 months) can be a right pain because we dont think there is any progress. But there is progress, we just cant see it. Your case is extra difficult as you had a major op as part of your recovery period. My stroke recovery was pretty much finished when I had this latest op. And yes I am enjoying a lot of plus points now I can use my muscles and joints.
The emotionality is hard isnt it. Perhaps you can part exchange your daughter for a cat, just for a few months. I read many things on this site and child care or family issues are a big step too far. I have a near to ideal situation as I have a wife to look after me, a bungalow to make mobility easy and no children within a hundred miles. And no parents either. I just dont know how anyone copes with extra problems. The year that the stroke got me, the figures suggested that 65% of people split from their partners after they had a stroke. I guess we become a different person.
I have one lady who has recovered well and helped me through my recovery. She actually got married during her stroke recovery. A few years on and they seem very very happy indeed.
You mention that exhaustion sets in after just 15 minutes. I am hoping thats only when you exercise heavily. I got 45 minutes before exhaustion and I thought my levels were bed.
I was fit before stroke. Could always muster an extra hour or two. I am intrigued by what will happen now I have a new heart valve. Already I am much fitter. So what was stroke and what was heart disease ??
I am going out this morning. Now thats a change