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Five days post sclerotherapy/embolizations


#1

Hi all,

I had sclerotherapy/embolizations done on my left leg AVM on Wednesday (about 5 days ago at this point). I’ve had the process done before, but it’s been a couple of years and while I went through all of my social media and emails (ha), I can’t find any record of how I was doing/feeling afterwards.

I am impatient to be able to walk again without limping around, and the transitions from lying down or sitting to standing have been particularly awful. While some parts of my leg feel completely typical/just like my normal right leg, I can feel increased pressure in a few particular spots on my bad leg and I am hoping beyond all hope that this isn’t the new normal because I Simply Cannot with it.

Have you all found that things sort of shook out after a couple of days? I’m hoping my body figures out its new pathways/the sclero’ed pieces start to fade away and it doesn’t suck quite so much by Wednesday or Thursday, but I’m nervous because I can’t remember last time (probably bc of the Percocet).

Christina


#2

Christina,

How are you doing? I know you posted this a week or two ago. I was hoping some @Extremity folk would be able to share some experience with you.

Thinking of you,

Richard


#3

Hello Christina,

It sounds like you are through some of the worst of the treatment and healing process. You may feel you have “become one” with a recliner chair… ice and elevate is most of our mantras. I don’t know if you will have dead tissue that will need to be removed or if your body will absorb the treated mass.

There is plenty of reasons for hope for a better future for you. After years of dealing with ‘my little bugger’… limping around, wearing different sized shoes, dealing with heat, pain and the occasional hemmorhage… my AVM seems to have gone into remission. I’ve had six angiograms with alcohol and/or glue treatments on the AVM over the last couple years. The last of the procedures was last November. So far, the little bugger hasn’t tried to reform/regrow. My foot has healed to the point that I walk without pain, no limp. I can wear sandals (of the same size) without problems. Most of my friends have forgotten to ask me how the old AVM was doing. I view this omission on their part as a good sign. I wish the same for you. Cheers!


#4

Thanks for the input.

I’m about 2 weeks out from my surgery now, and while some things have improved, others are still just the same. I can’t stand without a compression stocking, which means there’s a plastic chair in my shower and another chair in front of the sink that I bounce between in the mornings. And I know I have some nerve damage-- there’s an electric, painful buzz in my shin every couple of minutes, or the feeling of a too-short string between my toes, ankle bones, and shin. I’m hopeful that, since the hurt keeps changing and morphing slightly, that means it’s getting better, however slowly.

I have a follow up appointment in a week to talk about what is next. I hope it’s not stockings and narcotics-- as sexy as that sounds. I would really like to shave my legs without making my teeth curl, though-- there is nothing pleasant about a razor against buzzing, numb legs.

In the meantime, I’m in a pool of regret. Was it really so bad before? This feels worse, but who’s really to say?


#5

Christina,

I’m so sorry to hear of what you’ve been going through! I have had 5 embolizations and am in the process of scheduling my first trial of sclerotherapy here in a few weeks after a major decline in my progress. When I first started treatment I was just like you, and had such pain when transitioning as well in addition to that pressure you are talking about. That, to me, is what is the most intolerable at points. After my embolizations I have experienced a lot of this as well, with it taking up to a month in a half to two months to really return to normal depending on how much work they did. (Mine is in the sole of my left foot) What is your after surgery pain management like and what do they do for you afterwards? My doctor has been really great about explaining different options of aftercare and being attentive to what works and what doesn’t, and thinking about how to tweak things. I hope this all makes sense, and if you have any other questions please don’t hesitate to reach out and ask! I wish you luck and healing, the pain is unbearable and nobody deserves that. Keep us updated! :heavy_heart_exclamation:


#7

I don’t really have any pain management this time around. I wasn’t hurting when I left the hospital, so I was just told to take tylenol as needed. But since the swelling went down and I’ve started to grow more mobile, I definitely have a ton of pain-- though yesterday I was able to put my foot on the ground without any compression and I didn’t convulse with pain. So that was nice.

A question for those of you who have dealt with nerve complications-- I’ve been reading online that the buzzing feeling is often what nerves feel like as they are healing. But how do I know if my buzzing (always in the same place, for brief flashes) is the good kind or the bad kind?

Also, is it strange/noteworthy that my leg hair hasn’t grown over the skin that is currently numb/buzzy? I had shaved my legs right before my procedure, and there are little bald patches where the most intense lack of feeling/buzzy pain are.


#8

The more pain, the more gain. I say that from experience. Your blood vessels have formed a thrombus, or clot. That was the purpose of the embo. Eventually this superficial clot- no danger- will be re-absorbed by your body. In its place will be scar tissue which will stop those abnormal blood vessels from widening and accepting too much blood. I wd not worry @ nerve damage for a full yr. Nerve fibers are re-connecting. Normal. As long as your skin is intact- no ulcers- then you should be good to go. I once thought I had a DVT post embo, but now understand that DVTs are deep. My pain was always more superficial. I hope I don,t sound callous. It is grueling misery 24/7. I am annoyed that MDs do not listen to their pt pain complaints. Mine was. This is the type of pain that requires narcotics augmented by Tylenol. Motrin and Alleve can cause some bleeding, which you do not want. Ice packs on and off every 10 minutes. I wd be so numb that I wd not know if I had freezer burn. Elevation!. And use electric razor when you grow hair. You don,t want a razor nick in an area that does not heal well.