Really starting to panic about appointment on Thursday

Really starting to overthink and panic about my appointment on Thursday with the AVM specialist.

Logically - I am sure it will be fine.

But brain wise…panic is setting in. :fearful:

Mainly because the CRPS symptoms are spreading up my leg (I do have a follow up with the pain clinic in January). However I know that if I were to go ahead with amputation it needs to be above the level of the CRPS to be affective (and lessen the chance of it spreading to the rest of the leg). And my consultant advised that the “best” one to recover from was a below knee…

So as you can probably guess I am really anxious - worried that my consultant might now recommend amputation as the condition is spreading.

Logically, I know this likely won’t happen. But I am freaking out a lot.

(I am also hoping to get an update on what more AVMs in the eyes mean, and if they will test me for Hht).

Does anyone have good distractions or ways to cope with appointment anxiety?




It sounds good that you are recognising it won’t be as bad as your panic is leading you to think, that’s definitely a good thought to have.

Since much of your worry at the moment is about your extremity AVM, I’ve moved your post to the Extremity category because that way, we should draw the attention of extremity people who have worried about similar stuff (or actually gone through with some of it).

I think I’ve got a couple of thoughts, neither of which may be useful but know this: I’m with you all the way, ok? What you’re talking about is just as scary as a brain surgery, so I kind of get it, at least. The way I approached my (brain) embolisation was to justify to myself “Do I need this? Is this important to do?” and honestly, for me, at that time, oh yes it was important to do. Was it still the right thing to do looking back on it (and generally I don’t recommend hindsight, it’s just stupid) yes, it was still important to do it and the right thing to do.

So think about it (if you must) in those terms, perhaps. None of us want to second-guess this week’s path so I’ll stop there but do let us know how you get on.

Second, things to keep distracted for 2 days? In some ways, anything. What I tried was to give myself something that needed real thinking to do. I decided if I did something easy, my mind would still be free to think. So I chose an electronics project and had to design it, order parts for it, wait for them in the post, build it, get it wrong, fix it and so on. You’ve only got two days, so nothing as complex as that but something you’d need to focus on. Are you any good at art, for example? If you’re at least moderately ok, set yourself a challenge to paint or draw something you’ve never attempted. There are lots of classes on YouTube that you could browse. (I’ve also done this but to date never actually set pen, pencil or brush to paper to try to replicate something I’ve seen online but I’ve got at least one or two I’ve seen that I’ve thought to myself “I could do that…”)

Hope something here might help and good luck this week! I do want to know how you get on.

Lots of love,



Hi Writerchick, I’m actually writing a book myself. And I journal. Both are a therapeutic outlet. You can use this thread as a way to pseudo-journal and get wise feedback at the same time.
As far as your pain/panic I have no insights that would help. I do feel that your emotions are “normal”. That probably doesn’t help to hear that from me. But it helps me to hear it from someone I care and respect. So if you have that person, go for it.
I’m pulling for you and hope you get the best possible outcomes. Best wishes, Greg

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I do the box breathing and it is amazing. You breathe in four counts, hold four counts, breathe out four counts, hold four counts. Repeat. This is something marines so for pain. It’s worked for me sometimes. It helps regulate blood pressure.

I can’t give much advice. I tend to catastrophize before appointments as well. I had a brain scan and bubble echo cardiogram yesterday. They turned up clean. That was a big relief. On to more testing next week.


Kind regards,


Have a good day today :crossed_fingers:t3:


Thank you everyone!

I will let you know how it goes (I am pulling out the big distraction guns for the moment and playing sims)


My thoughts are with you today. John

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It is recommended that I try the immunosuppressant for 6 months to see if it is effective and I can take it.

If it is, then we will work out how I can stay on it long term.

If not my options are manage conservatively (I guess that is pretty much where I am now and I can say for free that it is awful), try another embolisation (but the last one severely flared up my CRPS), or discuss amputation.

Big questions:

  1. Can anyone advise on precautions the family and I need to take (e.g, mask wearing indoors)
  2. If you are managing a foot AVM with CRPS conservatively - please could you tell me what that is like for you

Thank you everyone for your thoughts and advise - it means a hell of a lot!

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Good to hear the update, though the choices don’t feel that good, do they?

A couple of questions…

  1. CRPS = Chronic Regional Pain Syndrome?

  2. What is the immunosuppressant focussed on doing?

Yes I have been diagnosed with chronic regional pain syndrome (and done IVRA for it - but no success)

I am not quite sure what the immunosuppressant is supposed to do. I can’t really find papers on it on google scholar either. But apparently (what consultant said) was it is supposed to lower the activity of the AVM? But it won’t cure it.

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You’re talking about an extremity AVM, so I understand these things less (= not at all!) It is interesting to me (and I expect others in the Extremity team, and likely those with a @PelvicAndUterine AVM) if the immunosuppressant is focussed on reducing any growth etc of your AVM. You’re a bunch of people very much in the same difficult situation.

Did you have a conversation about HHT or any other AVMs you may have?

Is the immuno suppressant Sirolimus? As far as I can see Sirolimus and Thalidomide are the only two medicines given to slow down/ stop AVM growth.

If you search here or on FB you will find a few people who take it. As far as I understand, those drugs are given to people with large complex AVMs for whom embolisation is not enough / not working. In UK/ Europe they use Thalidomide, in the US/ Australia Sirolimus.

I was advised to take Thalidomide. It’s not ideal: not enough study, data, idea of long term side effects. We are guinea pigs to a degree…. or we can see it as given the chance to access pioneering new treatments. If we keep to half full glass: the studies are also very positive and promising. However when it comes to deciding for myself, my views are the same as Richard’s. I ask myself: Do I have a choice? Do I need to do it? Answer: not really and yes. Seeing in that way, helped me come to term with my decision which is to go for it.

Now my AVM is in my abdomen, I don’t have CPRS and I am yet to start on Thalidomide, so that is the extent of my input, I am afraid.

In the meantime, I hope that helps. Have a lovely Christmas



Unfortunately they don’t have facilities to do the HHT testing at the moment (but I will chase the eye specialist in January to see if I can get it done locally)

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Thank you!

I am not sure which one it is yet.

You guys are definitely right on the: do I need this and do I have a choice questions (I would answer the same as well).

Just so worried about the risks of infections (I am notorious in the family for catching colds).

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My son has a complex AVM on his thumb and wrist and he has been taking tramanetib (Mekenist) for 3 months. So far, the growth of the AVM has slowed and he is in a lot less pain. He has blood and heart exams monthly to watch for side effects, which haven’t been too severe. We are in Philadelphia, PA in the US.


Could I ask - what precautions do you take as a family to minimise the risk of your son getting sick on the drug?

In terms of precautions, blood tests are done every few weeks as well as an EKG and eye tests. Rashes can form as well but we have not experienced that. I would mention Mekinist to your team of doctors and see what they say.

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Thank you! I am so pleased it is helping your son (and keeping fingers crossed that i will see good results to).