Uterine avm

Types of Avm's Pelvic & Uterine AVM
1

Hello all

I am new to the group, and new to AVM’s in general. I have a uterine AVM which caused a major haemorrhage, and sadly, termination of my baby. I am wondering if there are others with uterine AVMs who can guide me.

Also, I am booked for an angiogram on the 22.4.10, and would really love some guidance about the procedure for embolisation and recovery afterwards.

Thanks
Amanda
2

Hi Amanda! There is only one other member that I can think of with a Uterine AVM. Ck out Tish B who also happens to be from Australia!
http://www.avmsurvivors.org/profile/TishB?xg_source=profiles_memberList

So sorry to hear about the hemorrage and loss of your child. That must have been very difficult for you.

As for your angio, the experience is very similar for all of us regardless of location. Sometimes the brainers have to stay awake for them (scary) but otherwise it’s the same and is minimally invasive. Most likely you will be put under general anesthesia, and then the radiologist snakes the catheter up through to where they want to look, inject some dye…and they take some pictures! You will wake up feeling fine for the most part, but will have to stay in the hospital for 4-6 hours laying flat because of the cut to your artery at your groin. You may have some bruising at the cut site. But no other outward issues. After that, you should treat yourself to a milkshake or some other yummy treat, and you are done! :slight_smile:

The embo will prob feel like pretty much the same kind of experience from your point of view. Honestly, it is all much more scary in thought and anticipation than what you will actually feel. You will freak yourself out much more wondering what will happen than what will happen. And really, it’s almost good cause you prepare for the worst and then think “peice of cake!” when you are done.

This is a good link that talks about embos and different types of Extremity AVM’s. You may find it helpful!

http://emedicine.medscape.com/article/419614-overview

Good luck!
Shalon

3

Thanks so much Shalon, I have sent Tish a message, hopefully she’ll get in touch. Much appreciate your comments below. The radiologist is going to do the embolisation on Thursday. Have not found much about recovery. How long before I would be back on my feet?
Amanda

4

I think it is typical (at least for us 10 yrs ago) that you have the embo / angio in an operating room, then move to ICU where the angio tube is removed, then you lie FLAT with pressure on your incision for 4-6 hours, then released from hospital.

A key question to ask going in the OR is WHO IS GOING TO BE REMOVING THE TUBE AND ARE YOU FOLLOWING MY GURNEY TO ICU TO DO IT? Wife was highly upset when she woke in ICU after one procedure, looked at the clock and mentally ticked off almost 2 hours, when she found out the DR had not been in yet to remove the tube and her time would start AFTER he removed the tubes! She was not pleasant after having laid flat for several hours for the procedure, then time in ICU, then the 4-6 hours. Every procedure following she wanted to make sure someone was tagged to follow her to remove the tubes!!!

Other than some grogginess (from an anesthetic used) and the OUCHiness of the groin wound, you are ok to do most anything. They might say no lifting or straining for a few days, to give the incision time to heal.

Now if you want to ACT pathetic, you might get some sympathy for several days (grin), but honestly, it’s not that tough to recover from.

I’m sorry to hear of the loss of your child. God Bless.

Ron, KS

5

Thanks Ron, some great tips, especially re the tube being removed. I suspect that wont be such a problem for me, as I am not having a general anaesthetic, so maybe the radiologist will remove it when done, but I am grateful for the tip.

Think I might have to ACT a little pathetic, as least to get a rest from running around after my toddler :wink:

6

Hah, the act will work for a little while (although maybe not with the toddler).

I laugh cuz my wife suffered a limp/foot drop from one procedure. While window shopping, she would feint having trouble walking to spend more time looking at stuff. I caught on pretty quickly though!

Best wishes,
Ron, KS

7

Hi Ron

Turned out to be a horrendous experience, so much pain from the embolisation, and I actually passed out. Next time I want a general anaesthetic… for some reason they dont use them much here.
Definitely getting to be pathetic for a bit :wink:
Amanda

9

Hi Angela
Do you think you could email me directly so we can discuss this via email? I am happy to pass on the knowledge I have learnt, and the things we are doing now that I am 20 weeks pregnant
Thanks
Amanda

P. S. if you can’t email me direct via this group, perhaps you could give me your email address and I will email you?

11

Angela
Is this email address correct? It seems to be bouncing back to me
Thanks
Amanda

12

Hi all,

You may certainly trade emails via posting them directly in these discussions to continue your discussions in private if you wish.

If you want to follow a route that does NOT require you to post your email address publicly here, follow this process:

  • One of you issue a Friend Request to the other one.
  • The other one will then need to accept you as a friend.
  • Then you can send a private mail via this site directly to each other.
  • Once you are at this stage, then if you wish, you can include a direct email to each other via a message sent within this site’s software. This approach would keep your email address private except for who you send it to directly.

This is a function of the software package this site uses. I don’t understand much of it, but it is how it works.
Hope this helps.
Ron, KS (one of the mods here)