Where has everyone gone?

Sight should be “site”.

In answer to your question @ reoccurence, Mychal, this last situation shocked me. I was feeling pain in an area that has been treated years ago. The pain was frequent so I took a look ; bright blue vein on top of treated veins! I was shcked; I have had collateral circulation after embos, where bloodflow finds new pathways. “Do not let despair define you” is a quote from my cousin, a priest. So I have that on my screensaver. I do take pain killers; never more than I should. Your lack of pain amazes me! It sounds astounding to me. Like you, I would have checked for circulation to rule out swelling that numbs the area. But all is okay!

I am still looking for spinal am which I joined in June. I tried the links for spinal and says page not found. Anyone able to direct me please thank you

Hi Pattycake, here is the new link: http://www.avmsurvivors.org/c/types-of-avms/spinal-avm

When you create a new post, select “Spinal AVM’s” from the dropdown menu so that they will all appear in this category! Hope this helps,

Meli from Mod Support

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Thanks Meli :slight_smile: .

Hi Extremities Group, my daughter Bronte has an AVM deep in her thigh that has been removed twice. Poor little thing is in such pain. We live in Australia and see Dr Hayward, from Westmead Childrens’ Hospital.
Bronte is very tall and is still growing. She is 15 and 6ft. Recently after an X-ray another growth has been found in her shin. Insanely, the two are not related. Investigations continue into the shin tumour, which appears to be non cancerous (phew!!!) but still unknown. It is inside the bone so doesn’t appear to be an AVM.
Bronte has high levels of fatigue, and has had for much of her life. I’m wondering if anyone knows of a relationship between AVM’s and fatigue. She has had very low iron, and thyroid levels are low, and both are treated and are now in the normal range. She is still very tired.
Meanwhile, she is looking at catwalk modelling, and I hope her significant scar will be accepted, and not rejected. :slight_smile:

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Glad to see there are some postings again from non-brain AVM members. I had embolization for pelvic AVM in 2012. Because this comes under the category of “rare”, health care professionals don’t really have much experience with how the body reacts as a result of both depleted blood supply for many years and then increased blood volume post embolization. I have been having heart palpatations for almost 7 months and heart tests did not show anything definitive. So they put me on a pill to keep them under control, but my gut feeling is that somehow this is associated with the AVM. They glued 5 and are monitoring 2 more. It is just frustrating! However, I count my blessings everyday because I am certainly in a lot better shape now than prior to finding the AVM. Merry Christmas to all. Happy

I agree

Yes I’m just getting to know how to use the new one.

How did they remove the AVM? Our 13 yr old daughter had 5 laser surgeries at age 12 on her high flow AVM which is fed by the femoral vein on her right mid thigh. At that time we thought it was a cavernous vascular malformation but through a recent echocardiogram discovered it was a HF AVM. We are searching for treatment facilities! We had a full spine/brain mri done and it showed a lesion at T4 in her thoracic spine… at this point, like you, we don’t know what the other spot is. Praying for your daughter!