Hello everyone. I am New to the forum. . I have had a an avm in my foot/second largest toe for about 10 or 11 years. For most of that time there were no complications with it and it did not seem to be growing. Recently had a rupture in the Avm and experienced pulsatile bleeding from it. The last month in half have been very challenging as I have been to the emergency department three times after getting stitches for it as the stitches dissolve and the bleeding starts again. I have seen a vascular surgeon and I have been referred to a vascular anomalies clinic for it as well. I got an mri about 2 weeks ago and they have a clear idea or picture of the malformation.
I can’t walk or anything right now and if I put any pressure for walking I risk bleeding again. Anyway. I am glad this forum is here because this has been quite a challenging time for me and I do not have a plan for longer term treatment for the avm yet.
Thank you for reading this. I just need to get it out and hopefully someday I can be helpful to others at some point as well.
Welcome, and great you found us. Hopefully our group can provide some support and experience to you! I’m a brain guy, so can’t provide much personal experience relative to the your AVM specific, but we all share many challenges with these. I find the initial challenge is understanding what we have and what it is, and Dr. Google is always a wealth of information, recognizing bad news always travels faster than good news. I see often the extremity AVMs cause a lot of challenges and am sure some of our group will add. Hopefully the vascular abnormalities clinic will be able to help with some options and a longer term management/treatment strategy. Once again, Welcome. John.
Welcome from me, too! Since your AVM is in your foot, we really do need some of our @Extremity group to share a little of their experience.
I know you’ve done some reading because you ed a post in the Extremity category but there are others out there, fighting with similar stuff. It’s a bit quiet over the holiday period but I hope people will check their emails soon.
Thank you for the welcome Richard. I have done a quite a bit of reading on the forum and on other sites. I understand people are a little busy during the holidays with their families and other things.
Having bleeds starting during the holidays has been very difficult. I feel like I can’t get the medical care I need as well. I am hoping the new year is better than the end of last year.
I started bleeding again a few days ago but I currently have it under control with compression bandages. The problem is that I can no longer walk. I feel like my ability to walk is fading away for now until I can get the bleeding under control. It is very discouraging.
-Warren
To be honest, you’re in a very difficult situation. I completely understand how you feel and I know that the Extremity guys have very much the same trouble as you. As a complete minimum, I can tell you you’re among friends.
Yeah. I have gathered from reading the stories of other people in the group that there are people here who have gone through similar situations. I do feel I am among friends here. Just taking things a day at a time.
All the best to you -Warren
Welcome to the forum. As a fellow extremity member with an AVM in the foot I definitely get where you are coming from with limited walking. Hopefully the drs will get on the case now the holidays are over and things will start to improve!
Thank you for the reply writerchick. I have read some of your earlier posts on here and they have been helpful to me. I hope I get the medical care I need as well.
I have non dissolvable stitches that controlled some of the bleeding this time but another hole opened up on the edge of the last stitches. I am controlling the bleeding from that one using gauze and compression.
I have to eventually get these stitches out as well. Just wondering when this bleeding episode will end or how it can be done controlled more permanently. I am tired of going to the emergency department. The clinic/committee I was referred to meets once every 2 months and they did not inform me of when they are meeting next. So I am just waiting here in limbo and my legs seem to be wasting away from non use. Also fear bleeding at night when I sleep.
-warren
I’m sorry to hear of your troubles. I have both AVMs and VMs in my foot and have been recovering from my own embolizations over the holidays. I am using a knee scooter to get around for the time being. It’s not a long term solution though, and I’m looking into a wheelchair for some more freedom on bad days.
However, my surgeons have never had serious concerns about a bleed in my case so I’m afraid I can’t be much help on that front. Welcome to the forums, you’re certainly among friends.
Thank you for sharing your experience Carly. Thank you for sharing the knee scooter suggestion as well. For many years bleeding wasn’t a problem for me either. I am hoping at some point mine will be under control more permanently. I feel physically and mentally well, over all, in every aspect of my life other than my foot.
Hi Wdc, Medically I have very little in common with you.
But something you said triggered an emotion I have a lot. (I can’t tell if you’re a man or woman.)
For me and male friends it’s almost sacrilegious to say, “I’m lost.” It’s just not “manly.”
I’ve come to know better. Believe it or not it’s actually okay to say you’re lost and very very few people would look down on you. Even though they won’t ever admit it, they’ve been lost too.
Try to be patient and kind to yourself. I’m not a fortune teller, but I can guarantee answers will come because they always do. (Whether you like them is another issue.) Take care, Greg
Hi Greg. Yes there is no doubt in my mind that I feel lost and confused and so many other emotions about this. I hope I get answers soon or at least some sort of plan going forward.
I can certainly say this hit a chord with me, and I’m glad to be sitting by myself. I have two medical appointments today and expect a call from my gamma knife nurse I spoke to yesterday, after years of smooth sailing. I realize the emotions I’m feeling are normal, none of which I like to admit, but lost and afraid are at the top of the list. It is like reliving a lot of things for me, that I thought were behind me. Stay strong guys, John.
I hope you get through your difficulties soon John. It is so challenging going through this stuff and processing the feelings. I am personally getting help now to deal with the emotional psychological aspects of dealing with my situation. Part of it for me right now is just being patient with the process. Which I am sure you are familiar with.
The anomalies clinic that is covered by my insurance meets in February. so for now I just want to get through this month.
-warren
@Wdc1 Hello & Welcome
Warren so glad you found this group. It can be so scary and maddening to go through this and our feet have so many nerves you must be in loads of pain. Are you being seen by a pain neurologist?
I am in California too - near Stanford area presently getting drenched.
My AVM in my brain. My younger sister 2 years post my first stroke got necrotizing fasciitis which is flesh eating virus and it attacked her foot and leg. This was in 2013 and she lost a great deal of tissue and skin . She is currently going to wound care for it -
Stanford really was great for surgery but they really didn’t know what to do for wound care each nurse did it differently as I was helping them.
When she went home before her skin graft I fired the first nurse that came who said she knew about wound care.
St Mary’s in SF which has a fabulous Burn unit referred me to wonderful place that had proper nurses that knew had to do wound care. My sister is also allergic to many things like latex and plastics.
We still always have xeroform, telfa non adhesive dressing, paper taper and Bacitracin at all our homes for her.
It’s so hard for others to understand this medical journey.
Thank you so much for sharing your experience and your experience with your sister. The bandaging suggestions you provided are very helpful.
If you don’t mind me asking what nurses did St. Mary’s refer you too? My Wife and I could definitely use some help with the wound care aspect of this while we wait for the clinic to provide me with a treatment plan.
We are in San Jose fwiw. I am so glad that the rain stopped today even though we need it.
Hello @Wdc1 Wdc1 Warren happy to share the info and if recall they were cheaper than the nurse who from Sutter nursing who did not know what she was doing.
My sister had a nurse named Jay . They promised we would have the same person each time which we did.
Not sure if Jay is still there but can’t say enough about him.
Especially my sister had really bad PTSD one dr who took over from the wonderful surgeons at Stanford missed her collapsed lung ( a nurse figured it out)
Then he kept trying to change her from heparin to a new blood thinner that did not have a coagulant and she has a bleeding disorder called Von Willebrands - needless to say I had it out with him esp when he tried to say it couldn’t happen and I told him I did financial analysis for a living and loved statistics.
If you need any other help navigating the Bay Area health realm let me know. Or if you need an advocate to go with you . I have done it for my family, friends and others that I met on support sites .
ed a post in the Extremity category but there are others out there, fighting with similar stuff. It’s a bit quiet over the holiday period but I hope people will check their emails soon.