Update on treatment (immunosuppressant drug trial)

I started the drug trial in Nov 2023, and should finish May 2024. At this stage I have seen no improvement and my CRPS is just getting worse.

I am now at the point that my AVM team are asking me to consider amputation (which is severely complicated by the CRPS). So I am now researching outcomes of amputation with CRPS in preparation for my meeting in June. The whole thing is made worse because the only pain consultant in my area left, and now I have no idea when I will get my next treatment or even see a pain specialist (which I kinda need to do to get an answer as to whether I would be a suitable candidate for amputation with my CRPS).

I just want to cry frankly - it has become such a huge mess,


Hi. I’ve moved this to the Extremity area because the people who will have considered amputation (and I’m sure there’s at least a couple) will see it in there.

I often think CRPS should be rearranged somehow to spell CRAP!

With you all the way :muscle:t3:


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I am so sorry. Where is your AVM? You probably have already tried embolization

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Thank you!

(and 100% should be rearranged to spell crap :rofl:)

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Hi Pat

I have an AVM in my right foot (I think between two of the metatarsals?). This is the problem child of my AVMs. I also have them in both eyes (in my left eye just below the optic nerve, and in the whites of my right eye).

They tried embolisation in May 2021 - this is what caused the CRPS for me (although I was already experiencing mild symptoms before then, it became full blown CRPS after that treatment).