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AVM Survivors Network

Pelvic AVM Support Group- What is your story?


#1

Hi I am new to this site. I live on the CT NY border. I have a pelvic vascular malformation (VM). It effects my uterus and vaginal walls. I was told no one has my exact case. I am now 30 and my first bleeding episode and surgery was when I was 3 years old. Pain, bleeding, hemorrhaging, blood transfusions, tests, MRIs, and surgeries are a big part of my life. I am currently still being treated surgically at Lenox Hill Hospital with Dr. Robert Rosen. I have never physically met anyone that has endured anything similar.

Lately I have been feeling really alone and been searching for support groups for rare medical conditions or anything at all similar but they don’t seem to exist. I would love to set up a support group if anyone is interested. Or if anyone would like to chat and share some stories, I would love that too. Things such as your location, type of pelvic malformation, treatments you are currently undergoing and are they helping you, what doctor(s) have and are you seeing, and/or anything else you would like to share I would really appreciate!

Thank you!
Tara


#2

Tara,

Welcome to the site!

You are right, pelvic and uterine AVMs are rare among rare. We do have some current members here in the @PelvicAndUterine group. I suggest you join the group and have a look in the category of the same name under the Types Of AVM section on the home page.

I notice you found another very old post here from someone with a vaginal AVM. They may reply but the post is very old. Note that “Apr '13” means April 2013 and “Apr 13” means April 13th this year, so the date format gets very subtle.

However, I hope you will find some current members with AVMs in at least a similar area.

Welcome and very best wishes. We all have AVMs of one sort or another and we’re here to help each other.

Richard


split this topic #3

A post was split to a new topic: Uterine AVM Member


#4

Richard,

Thank you so much for you suggestions and help. I just joined the group you suggested to me. So glad I came across this website, so great! Good luck and very best wishes to you as well!

Tara


#5

Hi, Tara.

I’m David. I’m 25 years old and live in North Carolina. I am very new to this whole AVM world so I don’t know how much I can offer in terms of help but It’s always nice to connect with someone who has the same type of condition. I was diagnosed on Valentine’s day of this year (2018). I went to the hospital at 11 o clock on the 13 of February with excruciating pain and what I thought was kidney stones. I had all the symptoms of kidney stones and figured it was nothing to worry about but still needed treatment. To confirm what we thought were kidney stones, they did a CT scan of my pelvis the next day. They didn’t find any kidney stones but did find a very large pelvic AVM that was pushing up against my kidney and several other organs. The AVM pushing up against my kidney had given me a severe kidney infection which was causing my current symptoms. From there it’s been kind of a whirlwind. The specialist here didn’t want to treat me. He said he’s been practicing for 20 years and has never seen something like this so didn’t feel comfortable/qualified to treat me. From there I was referred to the University of North Carolina in Chapel Hill (about two hours away). The specialist there is great but is leaving on sabbatical in about a month. I saw another doctor about four hours away in Charlotte, NC that is great but is, you know, four hours away… I’ve had an angiogram with Dr. Kim at UNC while waiting to find a permanent doctor for treatment. I finally have an appointment with Duke university which I’ll be going to next week and they already have me scheduled for a procedure with them in about 3 weeks. The doctor I’ll be seeing seems very qualified from what I’ve looked up about her. Dr. Pabon at Duke vascular interventional radiology if you’re curious. I understand what you mean when you say you’re feeling lonely. You could be surrounded by people that love and care about you but when you have such a rare medical condition that pretty much overtakes your life, it’s hard for anybody to relate to you or help you in any way. Most people don’t even understand what it is, even after I explain it to them. That’s why i’m on here today, I’m feeling pretty alone right now and just looking for someone to connect to even if it’s just by reading their posts. I wish I had more to offer as far as my story but my story is just beginning. Not quite sure what’s going to happen from here but quite frankly I’m pretty scared and feeling extremely alone. It would be great to connect to someone so if you would like to talk some more, please let me know. I’m very sorry to hear about everything you’re going through. I’ve been having a very hard time dealing with this for the last two months. I can only imagine you having dealt with it your whole life. You must be an extremely strong person. I hope that everything works out for you and that things get better.

David


#6

Guys,

You’re never alone. If you need to talk, just talk. I’m crazy enough to be here most of the time! :heart:

Richard


#7

Thank you, Richard.

I’ve seen you pop up on a couple of posts. You do seem very active. It’s very nice. :slight_smile: Are you currently undergoing treatment? What’s your story?


#8

David,

I’ve got a brain AVM that I had embolized this time last year. For some reason, life is just fine today but I’ve spent the last 51 weeks not being convinced that the glue had stuck all of the relevant bits. I’m lucky that I don’t have any deficits but I have had some ongoing symptoms that I’m still checking out.

I first heard a symptom of my AVM in October 2015 and thought I just had wax in my ears. By Jan '16 it was more noisy and I started googling stuff as I really can’t be bothered to get a doctor’s appointment. It really is difficult in our village. I couldn’t find anything worth going to the doctor for. By April '16 it was definitely louder so I did a bit more googling and found pulsatile tinnitus and AVMs. I found this article and was pretty convinced I had the transverse-sigmoid sinus variant. So I went to the doctor pretty quickly. She referred me to ENT at hospital as I’d say her initial diagnosis was tinnitus rather than pulsatile tinnitus and so I had to wait until August for that appointment (not v urgent).

My ENT man was great. He listened to my head and could actually hear the “bruit”, the noise of the blood coursing through from artery into vein (same as I could hear it, to be honest) and he very carefully tried to tell me that I had quite an “interesting” diagnosis (that I’d already worked out!). It did push me off my pedestal, though.

It took 3 months to get an MRI done and to see someone more expert in what it was and what to do and I can tell you that those three months were quite worrisome. I then had to wait a further 4 months to be scheduled for / have an embolization.

Rather than feeling fixed after the embo, I could hear an even louder pulse but the doc was convinced I was all fixed. I’ve spent maybe 6 months getting better since then. Then I felt I was slipping back and went back to the doc again. A further 6 months later and I’m going through scans to see if there is anything still going on there. As of a few weeks ago, I was feeling quite grey about it all. For some reason this week, I feel pretty good. So the whole thing is quite the rollercoaster. You are not alone.

It’s a great thing to be able to connect to people across the world and just talk. The “discovery” stage, which I’d say you’re plumb in the middle of, is pretty scary but actually there are lots of people here with an AVM (obviously) and actually we’ve all got through it. It feels like the worst thing but actually you can get through it. You’ll surprise yourself.

Tell us anything. We can be here for you.

Richard