My daughter has an AVM deep in her left thigh. It’s quite small but very painful. It has burst once but was misdiagnosed then. She is about to undergo her 3rd removal in the hope it will ease the pain.
There are no other options, only surgery.
She is reluctant to take medication but takes panadine forte now. She’s doing her HSC soon. As well she has glandular fever and low iron. Poor kid.
Has anyone else experienced constant squeezing pain and what do you take?
Are there many others in Australia?
Cheers
Hello,
I too have a small VM in my right calf. It is in the muscle entirely(nothing visible). I get deep muscle pain which is diffuse. I too have low iron(have since I was a small child). Surgery did not work for me, and the recovery was horrible but each person has their own experience. I found that some arthritis medications can help but people were often hesitant to prescribe them. Narcotics are the only thing that touch the pain for me. I hate the way they make me feel. Has she tried ice, elevation and compression? These offer some relief but mostly just make things bearable during the day so I can take the heavy medications at night. As for People in Australia feel free to search, but I don’t know any specifically.
Thanks Rachel
Are you in pain every day?
She is in quite heavy pain on most days.
Thanks
Gretta
From Gretta’s iPhone
Im in Sydney and had my AVM in my brain removed a few years ago… its always tough on kids i guess and especially as a parent i can only imagine how it feels.
There are some good Doctors in Aus though and Im sure she will get the right treatment and hope all goes well for her final year in school… God bless!
Thanks Adrian.
Extremity AVMs grow back. 
Yes she’s seeing dr hayward and he specialises in them but can’t do anything more after this last effort to fix the strong to severe pain.
All the best
Gretta
From Gretta’s iPhone
When my VM is active yes. Best in the morning worst in the evening/night as the blood pools in my lower leg. I have had good success with alcohol embolization. The initial pain is very bad but it gives me between 3-5 years with only occasional pain (when I’ve very active). Once the pain is every day again I know its time to go back for treatment. It was worst during puberty and pregnancy (progesterone seems to play a role in growth).
They did try a surgical resection once and it lasted only 6 months until I was in daily pain again. The recovery took about 2 months until I was able to walk normally (though I had some complications). So 4 months of reduced pain wasn’t worth it to me. If you are seeing a vascular surgeon might I suggest an interventional radiologist. They tend to see more AVM and VM patients. Compression, ice, elevation and rest help but its hard to expect a young person to be inactive. I found hobbies where I could sit to be best things like needlepoint, and art. Good luck!!
I was not sure if I should respond, but will mostly because I have an AVM deep in my left thigh similar to your daughter but I am about three times her age and mine was just discovered 8 months ago. Dr. Sunita Srivastava at the Cleveland Clinic put a few tight coils in two arteries for my first procedure but there was no change or improvement and will target more arteries with coils in a few weeks. I guess it is an iterative procedure to shutting down arteries feeding an extremity AVM so as not to shut down good arteries feeding my muscles! She said “it would be a bloody mess” to try to operate on my thigh to remove that AVM and she is absolutely has no plans to do that. I guess my AVM has several arteries that are not centrally located that are problematic. I understand that every AVM is unique to each person so each procedure is tailored to that person. I was so very, very optimistic the first procedure would improve me greatly as we thought we saw one major artery that was feeding the AVM. Dr. Srivastava reminded me that she told me a single procedure very often is not effective and that we will visiting each other a few times a year and less often as the years pass but that this may be a lifetime adventure. It scares me that they often (or always??) grow back?
Hope this helps in at least in any general way. Anyone with an AVM in the thigh is welcome to contact me as I am really trying to learn more about this.
Thanks so much for your email Rob.
My daughters AVM was first diagnosed when she was 8 as it “burst” and had a bleed which was mis diagnosed for some time. She had always had her sore spot on her leg.
She has been reviewed by an interventional radiologist who specialises in malformations who said he could not help her AVM.
Surgery is her only option apparently.
I’m so sad for her because she is in such severe pain every day and this is the 3rd surgery to try to reduce the pain.
I’m thinking removing the leg may be a long term option but of course she does not want to do that.
I hope yours improves over time too.
Cheers
Gretta
From Gretta’s iPhone
Hi Gretta,
your post reminded me on our situation at home. My 15 year old daughter has an AVM in her right foot which causes her severe pain.
She is getting treatments (embolisations) since May 2016. After a long journey she finally got diagnosed with the AVM in December 2015. Back than we lived in Atlanta, GA but September 2016 we moved back to Germany, were we found after a longer search an Interventional Radiologist who treated her the first time last month.
The treatment here is different to the US and didn’t cause her that much pain, but we don’t know by know whether the pain is really better or will come back as it did so often.
My daughter is taking painkiller every night and often during the day since 2 years… she refuses to wear compression socks but ice does help her a lot …
Hope your daughter is getting help …
Good luck
Martina
Hi Martina
Thanks for your reply, and sorry to hear your daughter is in so much pain.
She had just had her AVM removed for the 3rd time. It was impacting her sciatic nerve. She’s in lots of pain poor kid. The hope is that this time it will be somehow a miraculous cure and stay away, but the chances are very unlikely.
The doctor has said it will most likely return and will be most painful for her through pregnancy.
It’s just frustrating that she’s in pain constantly, while trying to do school exams and all.
Well, all the best for your daughter too.
Best regards
Gretta
HI Rachel, I recently had the embolization to a VM (they figured out during the procedure there wasn’t an AVM) and now experiencing some numbness / tingling on my leg at the VM location. Have you ever felt this with your alcohol embolization? I am told that nerve damage is a risk but that it was very low. This is the 3rd time they have done the embolization and the first time i have experienced these side effects. Thanks!
Hi Megan,
Personally with embolization no, but with the resection surgery yes. I have complete loss of sensation on a small part around my scar. It has gotten better over time as some of the nerve ends have grown back it does start to tingle. Honestly the worst part of that is that it itches, but I can’t feel the scratch. Its super weird. My VM is very deep inside the muscle (you can’t see anything if you look and they even have trouble finding with ultrasound sometimes). This is why I get muscle pain as my symptom and not nerve pain. I would think there are 2 possibilities one they damaged the nerve or two your vessels are rerouting and getting closer to a nerve. Either way if it becomes bothersome or gets worse talk to your IR. There are lots of AVM people who have success with Lyrica for nerve pain caused by AVM. I’d give it sometime (a month or so) and if it doesn’t stabilize reach out to your Dr. Each persons VM, AVM, AM is different and reacts differently to treatment.
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