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AVM Survivors Network

Pelvic avm


#1

Hello all. Anyone have experience with glue for a pelvic avm. Two embolizations are not working. Any feedback would be great. Thx


#2

Hi Bo62 I have an AVM running off my left Iliac artery (Pelvic area). I have probably had 9 or 10 embos and stopped counting. Last one I had was 6 years ago and the best results as I finally went to Docs who really specialized in the areas that I have mine in. Eileen on this site also has Pelvic area VM/ - she might chime in as well. What type do you have, more surface or internal?
Do the Docs give you any answers as to why they haven't helped? What did they use? I would stay away from any alcohol procedures as my experience and many others is having tissue damage afterward. I had some muscle damage and it has resulted in muscle weakness on my left back area and left front pelvic area. Get back to me/us........will look for your response


#3

I also have had multiple glue embo’s on my right femoral and illiac avm with no success. They slow down growing for about a year but as soon as I hit that year mark symptoms come back and I need to go in again. Last time due to the arteries being much larger than they had expected they attempted to use glue and coils which I’m finding out now with my pain and symptoms returning that it didn’t work any different than the glue. I have found that there is not much else we can do but maintain. There is little success in obliterating these types of avms due to how extensive they can be. If you need to talk you can always message me. I hope your doing well and I could help.


#4

One of my AVMs originates and the left iliac bone and spreads throughout my pelvis up to the diaphragm. I have had multiple embolizations. all of them have been with metal coils, because some of them were so cavernous, and alcohol oblation. None of them have ever reopened. I have had small regrowths. So far, after 2 years they have remained fairly stable.


#5

Hello Bo62,
I too had a pelvic AVM off the left iliac artery. I received 8 embolizations over a four year period using glue, coils, and one attempt at using a sclerocing agent that failed because my AVM was so high flow. I continued to have pain in my left lower pelvis region. When I went for a 9th glue embolization procedure, my Drs found the flow through the nidus had closed! It has been 6 years since my AVM closed. I had continued to have pain issues for a couple of years after that, but now I seldom have lower pelvic pain.
I wish you all the best finding Drs, treatment that will bring you relief.
Kathy


#6

Thank you everyone on the feedback. It’s hard to find any info on pelvis avm’s.
After my 2nd embo, stable for a year. Then it has grown larger (22cm+).


#7

I’m seeing my 3rd specialist next Friday to discus glue procedure.
I went to have a nerve test done and doc said, “wow, I would rather have a brain avm”. Thx doc lol


#8

You have given a lot of info. Thank you and wish u well…


#9

Great that you r doing better…


#10

Thank you. I have lower abdominal pain, numbness, had, feet face numbness. Hope it gets better.


#11

I also have bad nerve damage in my back hip and my thigh. It causes pain and numbness in my leg and back. I had an EMG and it was painful not worth it considering there’s nothing they can do for it.


#12

I forgot to mention I have afib also. Can’t get a straight answer from docs what is casing symptoms.


#13

Hi Msamberxo, I read that you have nausea. I had bad nausea n dizziness this week for first time. Ment to re n said probably vertigo. I’m thinking its related to avm, afib. Im I crazy??


#14

I can say for certain you are not crazy! I have had extreme nausea since before I was diagnosed and it gets better after I have an embo for a few months and then it starts to come back as the avm grows. My drs can’t explain it but once I hit the 5-6 month mark after surgery everything I eat makes me nauseas but also if I don’t eat for more than 4 hours I get nauseas it’s kind of a catch 22 I have learned that mints and for some reason plain potato chips help settle my stomach sometimes. And I don’t really get dizzy but at times I do get light headed and very weak out of the blue. I hope this helps if you have any other questions or would like to talk just ask I like to help anyone I meet with this debilitating malformation because I too was called crazy by dozens of drs for 7 years before I was finally diagnosed! I was only 16 when symptoms started to appear and since all tests were normal then every dr I saw said they can’t help and suggested to my mom that I was probably just trying to get out of school or wanted attention and that I should seek therapy. That caused me to fall into a depression, I started to believe that it was all in my head and did the best I could to get thru each day as it came.


#15

Wow. I feel for u. You sound strong and keep at it.
I feel bad for my family because I complain about my sysmtoms. I can deal with them for now n hope for the best. Thanks for all the help I really appraise it. Hope I can help as well.


#16

The only option we have is to be strong. I have my weak moments some days are better than others but on my good ones I try to inspire as I was inspired by this disease. I am now a certified surgical tech and starting school to specialize and become a surgical first assistant. I also feel for my family and boyfriend because I too complain a lot when I’m having a bad day. I have to just have to remind myself that it will pass and without their support I wouldn’t be here today. I hope you get the answers your looking for soon. I actually have an appt with my vascular surgeon Wednesday to see if I’m going to be having another embo. If I find out any new information that could help you or others I will definately post about it.


#17

Good for you. Do the best you can. It’s funny I don’t feel like I have a disease or a survivor of anything. Then my doctor n wife tells me that it’s serious n I need to be careful.


#18

Bo62,
I see you mentoined that it has been suggested that you be careful. What have you been advised not to do?'
The only things my providers have mentioned are to avoid contact sports, don't get in a car accident and to manage my blood pressure.
Input from others? Thanks for sharing.


#19

That’s the same for me. I also have afib n bouts extreme dizziness n blackouts. Don’t break a hip too. Lol.


#20

I had pelvic AVM embolization in January 2012. After reading some of these posts I realize how blessed I am to have had a successful procedure. The interventional radiologist used glue in my repairs. I had 4 on the right and 1 on the left. There were also two other small ones that they monitor with the regular CAT scans. I also experience the light headedness at times and have to watch myself with over activity and stress. My embolization was done at Penn State Hershey Hospital in Hershey, PA. I would recommend them and if you need more info please ask. I too realized that there is not much information to be found on pelvic AVM.
Happy