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AVM Survivors Network

Mother of a 5yr old


#1

My daughter who is 5yrs old was diagnosed with ‘venous malformation’ on her right knee. We already did sclerotherapy twice. Once in October 2014 and again in September 2016. She started showing symptoms again for the past two weeks. Her knee becomes stiff and movement becomes restricted. It’s hard to see her is pain. I have few questions.

  1. Does sclerotherapy and embolization mean the same thing?
  2. How do parents of young children manage with pain. We have been giving pain killers. Is there anyother way?, because we hear painkillers are not good for use for long time.
  3. We are from India. Any parents with similar case from India?
  4. Is there any permanent solution for this? Or does it continue to reoccur? If yes, for how long?

Regards,
Betty


#2

Betty
I am so sorry this is happening. No sclerotherapy and embolization are not the same thing. Usually with embolization the doctors use something to create a dam such as medical glue, coils or crushed onyx. I have the glue and onyx.

I am not sure what state you are in but medical marijuana topicals and gummies and oils have helped me. I think its only legal in colorado for children.

I also use ice and heat. I am still having head pain years later mine in is my head.
I also have a heated mattress that helps and might help with her pain.

I am sorry I can not answer your other questions

Welcome to the group -

Angela


#3

Sorry to hear that your little one is going through a difficult time. I think her AVM is the least complicated one and there are so many treatments available for it. It’s been 4-years that I’m living a nightmare, and i can totally understand you. Mine is in my neck and spine, imbolization is a treatment for non-lifetreatining or simple AVMs, but I did radiation therapy as a second option because imbolization wasn’t for me. Stay strong and patient. Use naturopathic treatments if you live in India but, make sure to do your own research before doing anything.
She is just too young, her body is able to fight it,and I’m sure she will fully recover soon.
Angel