I am now 14 months out, can’t believe i am saying that and in this position. I have full range of motion but suffer from central post stroke/thalimic pain that makes me feel as if there is a tourniquet wrapped tightly around my whole left side even though I can move. That’s why I am not eligible for Botox, although the pt feels there is some some cogwheel spacstity -just not “velocity” dependent. I also suffer from extreme fatigue so I am pretty much only comfortable lying down despite not feeling this way for a good four months before the pain condition hit. Unfortunately this can be what happens when a lesion develops on your thalmus. I’m miserable 
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Thanks for your response.
One possible solution could be botox, I am not pretending that it would resolve all issues but can be helpful. I am not aware of US systems, hence, very difficult to comment on this. Thalamic stroke pain and spaticity symptoms can be overlapping - without physically examining you it is very difficult to give any definite answer. I feel for you though, it must be a very difficult situation. But I am glad to hear that your are finding UK forums useful.
Not sure if you can post any pictures of your hand (without face) in this forum?? That might give me some ideas, but I am clearly not sure about the forum rules and what might be possible.
Wishing you all the best.
Kind regards
Kusal, Stroke OT
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Dear Simon,
Thanks for your message and I glad to hear the progress that you are making. I am also very pleased to see that you have not given up, and you have very good understanding of what could be effect of stroke. Although, I am so called a educated professional , but to be honest I learnt nothing as part of my traning …I have learnt about treatment for stroke through experiments, youtube, books and numerous trainings, so unfortunately I cannot explain to you in technical terms. I can only explain in layman’s terms, my apologies in advance.
In my view, muscles are like spring, that can be stretched and contracted (under normal circumstances). After stroke, the stretching signal from brain becomes very limited and leads to muscle tightness/spasticity ( I am not differentiating between the two for simplicity). At this point muscle becomes something like a frozen (not actually in temp) tissue, and the two things that can make it supple once again is massage and botox (depending on progression of condition). Exercise and stretches on its own cannot achieve the above. This is my answer in relation to your question for ‘removal of spasticity’. In addition, to this all body muscle are connected in a ‘kinetic chain’ - so unless other muscles are treated it may be difficult to remove spasticity, e.g. my client today complained of shoulder pain, I practiced sit to stand from chair and pain resolved. You will have to take into considerartion the aspect of sensory changes as well.
I hope that this makes sense, please let me know if you have any questions.
Wishing you all the best.
Kind regards
Kusal, Stroke OT
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Thank you for your response. My hand looks normal as it opens, closes, etc, it’s just that i can’t control it, there i s pain stiffness and a cold feeling, plus it tremors. I do want to try Botox or quite simply anything that could help.
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Dear Simon, I believe in Bobath principles and the course changed my direction of treatment. You are correct in saying that you are unable to access your voluntary movement system, a part of the reason would be muscle stiffness, and likely other part would be postural/sensory deficits. You need to think more centrally i.e. bridging, peolvic tilt, foot massage, hamstring stretches, neck stretches would be precurosr to gaining access to the voluntary control system.
I hope this makes sense and also you enjoyed the breakfast.
Take care
Kusal, Stroke OT
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If you are in US try to contact Tara Tobias or someone like her and see what they say. I am only suggesting botox because based on your description that rings a bell. I have not seen your hand, hence, difficult to recommend anything wih 100% guarantee.
Wishing you all the best.
Kind regards
Kusal, Stroke OT
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Thank you for your help. I think for me, now having more trouble with walking, plus the stiffness/pain and the ataxia in the arm I am quite fearful 14 months out whereas before I thought for sure I would improve. I am happy to hear that you continue to make improvement beyond that time frame.
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