Pelvic avm

I had the glue used to embolize a pelvic AVM in September 2015. The AVM and aneurysm it had caused were said to be shut off. I am getting my first CT scan since just after the procedure this week. I hope it really did work. I didn’t realize that the AVM could start “flowing” again as I am now reading about in this discussion.

Hi
Can I ask how many did you do? Are you feeling better? Did you have problem with sitting after using glue and coil?

Thank you for sharing.

How do you cope with the pain? I cant sit, walk or lay on the bed now. I really fed up with this disease.
It is inspiring to see you become surgical tech. Did you try physio after the embolization?
I am ashamed of my family to complain about the pain because I had it for 21 years, but Im really tired and wish I could do something.

Hello all. Back after a couple years. Had a lot of issues going on aside from avm.
Hope everyone is hanging in and being strong. Finally did another ct scan after 6 years. I was supposed to have one every year.
Links like my pelvic avm has grown from 4.5 cm to over 9. I was told back in 2014 this would probably happen. Going to see a new specialist tomorrow, 5 overall. Not much they will do, risk is to high to intervene.
Enough about me, hope all are doing good and if I can help with experience s or to rant, I’m here.

Bo,

Hi! Great to hear from you, though sorry about the circumstances!

We have a new crowd of @PelvicAndUterine avm members these days, and a handful of newbies in the last month or so for some reason and one or two in the same position as you. Do consider joining the P&U group (look under Groups on the Ξ menu above).

It’ll be really helpful for people if you can share how you are and how you get on with your consults.

Really good to meet you. Best wishes,

Richard

Hi Bo62,

My name is Nathalie. I also have a pelvic avm which is putting pressure on my heart although I am not yet in heart failure. I hope you find someone willing to do something for you. They said the same to me originally and now they want to try embolisation. Not happening though, thanks to Covid and pressure on hospitals in UK.

Did they tell you why they think it is too high risk? Have you had any treatment before? What are your symptoms? Do you find that your symptoms are evolving over the years?

Nathalie

Hello. My situation is similar.
I’m not in heart failure yet, but after 6 specialist that wouldn’t touch it, I found one that says it’s a low risk embolization. I’m concerned why this doctor is to gong ho and all others won’t go near it because I have several feeders. My symptoms are getting worse and don’t know how long I can deal with it. I’m also about surgery with covid and I have a history of failed operations and infections. I think I will wait for now.
I hope you are doing well and find some relief.

Hi!

Low risk embolisation? With a high flow avm? Well, I wouldn’t trust that doctor either. I too have several feeders from the left iliac artery and a few from the right.

My doctor was upfront and said it was a risky operation. Non target embolisation is the concern. He is looking at several operations with different approach and different materials. He said that the reason I am not in heart failure yet is because I am only 48 but, if we do nothing, it will eventually happen.

My symptoms are getting worse (can’t walk so well, even on flat anymore, pain is getting more frequent and more intense etc…) so I decided to go for it. That is, after doing my research and finding out he is a renowned specialist. Admittedly, he said that he might go in there and realise that there is nothing he can do. But, hey. Got to try.

It sounds like you have had a rough deal so I understand your wanting to put things on hold at the moment. The search for solutions must be draining. I too hope you find some relief and some quality of life.

Let me know how you get on and if you want to talk or vent, I am happy to listen.

Nathalie

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I know. I’m 59 and don’t know if I want to risk it. Thank you for listening, as you know it’s hard to find someone who can relate.

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Hey!

How are you?
Have you seen TJY’s post?. Apparently he, and others, are hailing Dr Rosen as THE doctor in the US to accomplish pelvic AVM miracles. Might be worth a read.

Nathalie

Hello there. Im doing ok. How about you. Hope you are hanging in.

Hi!

I am good. Not due for another serious round of pain for another week or so, so I am enjoying my good times. :confetti_ball:.
Back to work on Thursday though but I am OK. Probably because I am in denial :rofl:

Keep up the spirit. We have no choice but to stick it out. I hope you do well in next procedure/ treatment. I’m not doing anything right now. Don’t trust last doctor, seems to casual. I guess you can be with nothing to lose. Lol.

Hi,

I also have a pelvic avm and had it embolized at Oakland Kaiser by Dr Brahler. This was April 2019 and he did a great job. I also have afib which the cardiologist insists is sleep apnea. I do not agree since I was tested before I had any corrective surgery done to the avm. COVID then hit and I’ve kind of been in a waiting period. So maybe check with Dr Brahler.

I Hope you are doing well. Sounds like you had a good surgery. I’m still debating having another one. I have many issues and I feel like it’s just going to make it worse.
Maybe after COVID calms down. I also have a severe testicular varicosele. Anyway don’t mean to vent. Most people and doctors don’t really know how to treat or symptoms of a advanced avm. Just keep puttin along.

Hello. Just checking to see how you are doing.
On my 7th specialist and not very encouraged to attempt any procedure. My feeders are to large now and symptoms getting worse. Oh well I had to try.
Hope you are managing and doing well.

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Hi!

I hope you are well. I am not doing too bad, a mix bag, really.

So, I am now often using a walking stick but I’ve been ok the last 10 days. I’ve been walking longer and further than I have been able to for some time now, without limping or muscles seizing completely.

Of course, that followed 3 days of intense pain which finished with my stomach not tolerating pain killers anymore. We had tickets booked for Top gun, I didn’t want to let my family down. I took painkillers and took my walking stick but I had to leave and ended up projectile vomiting in the cinema’s toilets. I have not taken anything since but if I can’t tolerate pain killers, I am going to be in deep doodoo. :persevere:

Still waiting for my first provedure….

Sorry to hear your news, be strong. They are making progress all the time. was that Dr Rosen from New York, who you spoke to ?

I am so sorry that you have to go through this. I wouldn’t wish this on anyone. I didn’t mean to vent while you are in pain. But I do understand what you are going through and I’m here if you need to vent yourself.
As you know most people don’t know or understand what you are going through.
All the best,
Eddie