Intestinal AVM - anyone else?

[Writerchick]

Those two are awesome - very kind and patient.

I know I had an angiogram embolisation - but not sure what they used.

Unfortunately it didn’t work and seemed to flare up something with my nerves which still hasn’t been diagnosed (no fault of theirs, just got a backlog with the local pain clinic so a long wait for diagnosis) - although when I got a telephone consultation with my pain clinic in November they suspect I have developed Chronic Regional Pain Syndrome in the foot. Just waiting for an in person appointment to confirm.

Unfortunately because of this Mr Lim doesn’t want to risk anymore procedures until my possible CRPS is sorted (in case he makes it worse). This means I am kinda stuck because there is a huge backlog in getting to the pain clinic. So unfortunately not much has helped as of yet.

I was told that embolisation doesn’t always work first time. So don’t worry overly if it doesn’t do the trick the first time. I was also told that it can take several rounds of treatment.

Just as a heads up though (in case anyone gets the same thing) - be very wary of symptoms where your bad area goes very cold, changes colour, or excessive sweating - just let them know asap and they get you in fast to check it out (seriously I was in the next day after reporting those symptoms to get checked and make sure there wasn’t a clot (there wasn’t - this is what the pain clinic think might be CRPS).

Best of luck! (They have links with the London Clinic as well, so you might get treated there - very plush (and fantastic food after the treatment).

[pitica]

@Writerchick Thank you so much for your reply! It gives me more hope, although I know AVMs are beasts to treat. How was the recovery from the procedure? Do they give you any meds (blood thinners, aspirin, etc)? Can you climb stairs? It’s so hard to find info on these procedures.

I think I’ll ask for another appointment before procedure to ask them about possible side effects of the procedure. I don’t even know what organs my AVM touches on and what it might affect. It seems the main symptoms are caused by the varicose veins they cause down in the pelvis. I already have nerve problems (I think) but a combo of amitryptiline, gabapentin, and Loratadine make my symptoms bearable even though I live a very limited life to control the pain. I wouldn’t want to risk making things worse. I can at least work right now.

I asked Dr Brookes if they are going to use onyx and he said ‘Others use it and we think it’s not good.’ Apparently he wants to block my artery using foam, but other docs told me I have many arteries/feeders. I guess he’ll know once he’s in there.

[Writerchick]

Always happy to help!

In my case, things were a little more complicated. Firstly they very kindly also partially removed an infected toenail (which actually hurt more recovery wise than the embolisation). This wasn’t part of the planned procedure but I had got the infection a week or so before the embolisation and called them up to ask if things could still go-ahead to treat the AVM. They said yes and actually offered to treat it while I was under on the day (win! I can’t stand blood and would hate to have it dealt with while awake).

If I remember right it took a week or so to feel better generally (not including my fun new nerve issue). From what I found online, normally they have to inject the stuff into your AVM from the outside, which can lead to ulcers. BUT - Dr Brooks and Mr Lim were able to do mine from the inside - so I had no wounds from the embolization to deal with. I don’t know how long it takes to feel better from that if they have to do injections. Fingers crossed they might be able to do the same for you and get it done internally (also means fewer plasters when you wake up!)

Unfortunately, my foot started turning icy cold (the whole foot) and I told them about it a week after the procedure (I had just figured it was normal till I spoke to my parents and showed them - that was a solid no). So I was rushed in because there was a chance I had a clot (no clot thank goodness). So, in the long run, while I felt better generally after a couple of weeks - the nerves were flared up thanks to the possible CRPS. This is still ongoing (and resulted in me having to be rushed up twice in as many weeks, and one week-long stay for iloprost infusion in case of a clot). Side note - the veggie burger on the menu at the Royal Free is actually really nice - if you have to go in overnight and that is on the menu, definitely worth trying.

Re meds - nope. I wasn’t given anything like that. Just sent home (they did give me an anti-sickness pill before I left as it was a two-hour drive home and I get travel sick - so do ask if you get the same). Not sure if this would be different for you as your AVM is higher up. Worth checking out though.

Re climbing stairs - yes, but not well. My AVM is in my foot (causing problems since 2020). Things have just gotten worse since the start of all of this. I can no longer put any weight on the front half of my foot it is so painful, and I have to walk around on my heel (which is causing problems all of its own). So yes, I can manage stairs, but slowly and painfully. Very interesting trying to bring food upstairs, or walk-in general.

I think it is definitely worth asking about side effects as your AVM is in the pelvis - I wouldn’t be able to give a good answer there.

Also worth a conversation re pain relief. They are super good and happy to write letters to get you onto the pain clinics locally - but I know there is a huge backlog. I was told I am considered urgent with my pain - I spoke to the Dr at my local pain clinic once in November (very lovely) but I am still waiting for an in-person appointment. Apparently, they are so backlogged no one is getting through very fast. I can certainly sympathise with the worry! I lost my job because of this, and am stuck at home, laying or sitting down 99% of the time because of the pain. If you ask they might also write you a letter for your GP to explain what is going on, and help sort out medicines for pain relief?

Dr Brookes is very good - like I said he actually managed to do my first treatment internally, running it all through the veins and stuff with no need for injections. So hopefully he will be able to zap yours really well too.

If you have any other questions I will try and help!