What my physiatrist said about the six month recovery window from cerebellum stroke

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Hi everyone.
So much to tell about this 7 months. Ups and downs, I think more downs than ups.
I believe I made some evolution but I still get so many symptoms.
My stroke was caused 7 month ago by a trauma in my neck which caused a dissection in my left vertebral artery, which caused a small trombo that caused a small stroke in my left cerebellum.
I was sent home after 5 days in the hospital with clop for 20 days, aspirin and statins.
Statins gave me hell so I lowered them and then stoped all together about the fourth month.
My last MRI, 4 moths after stroke, showed the very small scar in my cerebellum and no other stroke. About a month a half ago I had a second Angiotac (six months control) which showed that the artery is now permeable and the dissection resolved which is great news because all arteries look ok with no plaque, no focal stenosis and everything just great to sum it up.

Meanwhile in this 7 months I have lost a lot of weight, about 22 pounds of muscular mass. I was a good exerciser and went to the gym 4 to 5 times a week and lifted weights, but since the day of my stroke the only exercise became walking my dogs around the block and reduced my walking by 90 to 95%. I went from 150 pounds to 125 (I am 168 cms tall about 5’5"). I got no mobility issues from my stroke, just vertigo the day it happened and tremble in my limbs that ended after a few hours, stability got affected by vertigo some headaches, numbness in my left hand which got me to the ER a couple of times.

A couple of months ago a physiatrist sent me to be checked at an integral rehab foundation. They tested my motor skills such as swallowing and my physical state at that time, cognitive function, small motor skills. I went through 6 different health professionals, but after all they didn’t find any reason to accept me because, more than some mild disequilibrium in my walking and satability affected when standing in one foot and closing my eyes, nothing more seemed to be needed for treatment, so they said that I was not that bad.

My arms and legs have started to ache in the recent months, more muscular and find my self in almost daily episodes with weakness, dizziness, some nausea from it and feeling very low, this started a couple of weeks ago to be on daily basis. About this my Internist says that it can be related to post stroke deconditioning syndrome, and I believe fatigue also has something to do with it and because I lost so much weight in muscle mass. So after checking me hormonally, metabolically, doing a 24 hour holter and a echocardiogram and checked everything fine, he gave me a 3 month window to try to lower my cholesterol with diet and to build up my muscle mass again to help with the syndrome. I found this aproach from the doctor very good but the daily episodes are still there (this happened last week).

Then yesterday I went back to the physiatrist who sent me to integral rehab to a check back, and she told me that all this is just sequels, that the recovery window of six months is over and that I just have to live with it.
It was hard to swallow but, after reading so much about recovery, post stroke fatigue and what my Internist says, I just don’t think this to be true. I know that my equilibrium will maybe never be the same but I don’t think I just reached the full length of recovery just yet, specially since I’m probably suffering fatigue from stroke which is giving me trouble almost daily. How can a health professional say this?

If there is someone here who have also suffered a cerebellum stroke, do you have other opinions or lessons to be learned that you guys can give me?

My “sickness” symptoms right now are: dizziness, muscle aches, feeling low on energy, some gastrointestinal discomfort, weakness, and a foggy head, which appear in to the day. If I have to grade it I wake up normally with a 1 or 2 out of 10 and they begin to build up through the day to a 4 to 6 out of 10, and when going to bed back to 1 or 2.

Have someone had some similar experiences?

I feel like I really don’t have that much to believe to this physiatrist who also almost did not remember me yesterday when I went for the second meet with her.

My internist said that Im fine, my lungs are fine, my heart is great, metabolically and hormonally Im ok, my chollesterol is a bit high but he tested me for Lipo a and came out very low so he is not that afraid since my arteries are plaque free and the stroke came out of trauma, have not diabetes and no high blood pressure, and he believes is just a matter of waiting and rehabilitating my muscles.

I feel a bit lost, is all so confusing with so many opposite opinions. I think I can live with the dizziness and feeling constantly like Im on a boat. Sometimes I feel this with no other consequences and let it go, but the sickness, weakness and discomfort that I get sometimes is what really gets me down.

I think that I have progressed but still have a lot to get trough, and I don’t think this is the end of it.

Your thoughts and experiences are more than welcomed.

Best to you all warriors out there.

Ruben

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Hi Ruben,

my stroke was 26/42 on the NIH scale, 2 years ago. I presume you’re in USA because you refer to a physiatrist (which we don’t have in UK). Anyway, my stroke was different from yours, but there are some people here with Cerebellar strokes (dizziness a problem, so you need to rehab your vestibular system). I have worked like a donkey at my rehab, and a senior physio, on my team, has just seen me and said, almost in shock at my progress, “all therapists could learn from me”.

I have embraced many different disciplines to aid my therapy. One was learning Qigong, and how to circulate Chi inside my body. However, the single most effective therapy for my recovery has been something quite different. Luckily it’s free, and so obvious, that you’ll likely ignore it : The sun. Failing the sun get yourself a red light panel, and treat your poor traumatized mitochondria to some quality nutrients. We get 90% of our energy from these poor critters so be kind to them

Good luck, Roland

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Hi again Ruben from Columbia :slight_smile:

We’ve written replies about most of what you describe above from several perspectives including some quiet recently :slight_smile:
Reading those will give you a broad set of opinions.
The Magnifying glass above is your friend

Anybody who tells you that after 6 months “that’s it” is probably working on commission for a insurance company because it’s utterly untrue. If they aren’t then did they fake their medical qualifications¿?

Secondly the dizzy & Spacey is something a lot of us get. Currently I’m getting it about daily - maybe a little less at the moment.
In January it was awful. At one point it was bad enough to send me back to A&e ( Unlike you I’m in the UK :slight_smile: ) I’m 4 years past so you might see that it’s the sort of symptom that can persist and variable and emergent.

I had it in the first year because my blood pressure meds weren’t right.
I have had it in the last year but my blood pressure meds are right now so a post stroke emergent feature?. It’s impact waxes and wanes

Emergent symptoms from about month 4 are not unusual - the welcome post recommended in your previous thread (here - see post #7) goes some way to set the scene.

I assume for your medication the aspirin and clopi were a sort of thrombolysis? Given you had manipulation of the neck causing a dissection which presumably formed a clot that then moved into your brain?

This medication is normally given to people who have ischaemic strokes as a life long prophylactic against having another along with a cholesterol controller. it is normally avoided in people who have hemorrhagic strokes IIUC

Statins are normally the blamed cause of muscle aches. But if you’re not taking those and you’ve looked up muscle aches and pains and don’t have any of the obvious things like overuse viruses etc then vitamin deficiencies in B12, D, Iron etc are again possibilities as is neurological causes - I guess with the amount of sunshine in Colombia it’s been D isn’t a problem either?

I think searching for people who have had the same label applied to their stroke is something of a red herring. Factors like fatigue are common for us many forms of acquired brain injury so you don’t IMHO need to look for somebody who had a stroke to the same physical area to share in good advice.

The most effective way to deal with fatigue seems to be learning too manage its impacts and learning to reduce the things that cause it

Caio
Simon

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Hi Reuben @roccello the 6 month recovery window is sadly often cited but just isn’t true. If we continue to work at it we can continue to improve. Slower maybe after 6 months but still improve.

Although I had a different type of stroke I often feel like i’m on a boat. I’ve been checked over by many professionals & they can’t find any other cause than my stroke. I’m nearly 3 years on and it has improved a bit but is still there especially when fatigued.

It is common to lose some muscle mass after a stroke. Exercise (difficult when you feel dizzy) & a good diet (high in protein) should help rebuild that. Just build the exercise back up gradually if you can.

Keep going as yoy can definitely still improve.

Best wishes

Ann

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Thanks a lot for your response @pando Ill be looking into Qigong, sound quite interesting. We have good suny days here in Colombia, being so close to the equator, I’ll be getting a lot of sunbaths as much as I can.

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Hi @SimonInEdinburgh
Yep my stroke was Ischemic to te cerebellum, not sure about te severity of it, but my neurologist said it was very very small. For what I have read the size of the stroke is not directly proportional to the “size” of the symptoms or the fatigue, so I guess is just my brain rewiring and as I have seen so many times in the forum, I’m still in the early days.
They tested me hormonal and some vitamins also, D was a bit low and started a supplement already, but my GP says is not necessarily relates to all my symptoms, but the supplement won’t make any wrong.
Hope I get to manage a bit my fatigue, which I think is the one to blame, specially because I was at a good start the first two or three months from stroke, and it began to get a bit worse with time, and with some new activities, so I guess is normal that fatigue was building uo and now I’m getting the full of it (hope it won’t get worse).
Thanks a lot for all your advice.

@Mrs5K I totally get what you say about multiple physicians and professionals but must of them don’t get the fatigue part as an important one. The closest I got was my Internist with the post stroke deconditioning syndrome that he believes is making me very weak and low, but the rest of them, specially my now former physiatrist , just discharge you to build up some resistance to something that is just what it is and basically suck it up. Even then they should point to some ways to cope with the symptoms or sequels to make our live better, but I suppose they are just humans with a knowledge and are doing, most of them, the best they can.

What really got me is that I improved for the first months, specially in the dizziness department, had no muscle aches and was a bit scared and tired, but the last two months and specially the last one, I have seen muscle aches (which two month ago I blamed to Statins and stoped taking them about two month ago) tiredness and a subsequent dizziness build up to new levels. I suppose my fatigue just was slowly building up with isolated episodes and just recently is really liking in and need to learn how to manage the way is constantly affecting my every day.

Have anyone had that same experience?

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Yes
all You describe and the time scales and the changes are common too many of us.

On the fatigue of front …

normal advice is keep a diary of activity, nutrition hydration medication bright lights music cognitive effort physical effort and anything else you can think of. Also keep the diary of your fatigue fogginess sleepiness confusion dizziness/ wobbliness, quality of speech, speed of speech and movements

Then compare them looking for correlations over the last 2/ 3/4 days

To manage it folk suggest various supplements you Search you’ll find them; iron I think is one. @pando is the expert :slight_smile: also resting with or without sleep however feels beneficial. You might Keep a diary of what form of rest you did for how long and how that improved things?

Caio
Simon

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I’m jealous of your sunny Colombia, Reuben

Qigong goes back thousands of years. I am not a fan of statins, tried to take them 15 years ago, failed, and gave up, thank the Lord. I’ve just written how fatigue is often due to inefficient mitochondria (after a stroke they are traumatized); they give us 90% of our energy; so treat them ; they need food + sunlight (plus exercise) to thrive. They are damaged by oxidative stress. I can feel the nitric oxide dissociate from them (Cytochrome C Oxidase) CcO after lying in the sun ; it’s a tingling sensation.

I have learned a lot from my stroke ; I’m a fan of honey now (came back from holiday with Thyme, Carob and Oak honey). Proudly I will tell you what my senior Physio, Colin, said about me yesterday ; “all therapists could learn something from you”. I do not wear a white coat, but have read douzens of medical / health / recovery books, and had many discussions with my radiologist friend. Every struggle has been worth it, and you can also empower yourself to overcome your dizziness & fatigue, slowly but surely. Good luck

I’m seeing my chiropractor today so, apologies, will have to miss meeting @SimonInEdinburgh

Hang in there & you will make progress, ciao, Roland

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We will miss you this PM (Not sure if I can make next week’s)

Which supplements & diet would you suggest for @roccello in relation to fatigue?

Caio
Simon

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Fatigue?

bah, so many factors, and I would really need to know more about Rueben…

Sunlight (in moderation to start)
Shilajit from Himalayas (also in moderation to start)
Plenty of fruit, veg, chicken & Honey !
liposomal vitamin C, lots of
(A blood test will say if you’re deficient in iron, if so Popeye says plenty of spinach & peas)
Water, make it good quality / go swimming !
Exercise, hormesis, fresh air / get outside & sing

there are too many things to suggest ; but connect with nature before / in tandem with popping pills & supplements. This planet is here to support you ; make the most of it !!!

ciao, Roland

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