Extremity and Other Non-Brain AVMs

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Extremity and Other Non-Brain AVMs

For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!

Location: medical/symptom type groups
Members: 589
Latest Activity: Jul 22

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Headaches & Fatigue & moodswings

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Comment by pratibadha pratap singh on July 13, 2015 at 10:53pm
Hi . i am pratibadha from Kathmandu.I read the comment of Lind Gaye miller,lionlady & jascarpentier.I am 35 years old now.I got really horrible extensive diffcult type of avm back of my right knee from my childhood .I got to know very late about my avm &complex of treatment .I waited for almost 5 years to get proper treatment.As you know avm main treatment is to kill the lesion not block or surgery.

I went to Samsung medical center for my treatment
I went thrice there .main treatment is using ethanol coil .I have almost 50 coils in my right knee .I have check also my 95 %is cure i have to go again for 5% to cure it.After the using ethanol hospital should have facility to control its affect after the procedure .
main important factor is that


i donot have any problem now.

see u...
Comment by LINDA GAYE MILLER on July 13, 2015 at 8:02pm

Those are all side effects I had with alcohol embolization. I experienced swelling, extreme fatigue and severe depression after every procedure. That's why I stopped doing embolization. I believe there may be other embolization agents that may not have these side effects. You may find other people who have tried other agents on the facebook AVM Awareness group. Good luck

Comment by LionLady on July 13, 2015 at 5:06pm

Hi,

I have been living with a very large AVM on my thigh for 57 years. I have been very fortunate and have not been very effect by it until recently. About 20 years ago I had an embolization with coils and it shut off the shunt which did not reappear. I just had an alcohol and glue embolization last Weds. I have very little pain but I do have swelling and I am tired, Not sure if it is due to the steroids that I am on ( will be finished with that on Weds) or the procedure itself. The next procedure is scheduled in 4 weeks. The doctor is very hopeful and positive. It has been great to work with her. I found her information on this website. Any comments on the recovery from an alcohol procedure is welcomed.

Comment by LINDA GAYE MILLER on July 13, 2015 at 4:08pm

I been living with AVM for 54 yrs now. My advice is you find a intervential radiologist that uses embolization agents like Oxyn, glue, gelfoam or coils. The only emboliztion agent I have experience with is alcohol. However it works it's just hard on the body. I would recommend that if your AVM is not extensive. If it's small it may eradicate your AVM. I would not recommend surgery or cryo therapy until you exhaused all other options. You may wan't to join the facebook group AVM Awareness. There are many others who use it. You can find out what worked for them. Good luck-Linda

Comment by jascarpentier on July 13, 2015 at 1:41pm

Hi! I am not sure I am posting this in the right place. I have had a veinous malformation in my left knee since I was seven. ( 21 now )… It has greatly affected my life, having to stop all competitive sports, trouble working standing long times or sitting long times etc. Last week I saw my specialist in Montreal, after getting my last embolization with Bléomicyn ( not sure how to spell it ) , I have had 4 unsuccessful embolizations in my life that have just made my conditions worse. So my Dr. gave me three options, One is a surgery to take out the part of my muscle that is infected by my malformation, The type of my malformation is like a spider web of small veins wrapped around my nerves and bones and intertwined in my leg muscle from mid thigh to mid calf and in my knee. The second was Cryo but it is still in a really development state. And the third was to live with this constant pain for the rest of my life. I was wondering if anyone had experience with the surgery or Cryo? I am aware that arms or vms could potentially grow back.

Comment by Rachel on July 9, 2015 at 1:36pm

Anyone who like me needs to sleep with legs elevated when I have flareups I found this cushioned-elevated-leg-rest today. I've ordered one for me. See if it might help you. I have no affiliation with the company or living social just passing on a find that might help. 

Comment by Nico09 on June 12, 2015 at 2:11pm

Hi everyone,
I just thought I would leave an update - I had embolization and then surgery the following day to remove my AVM on my jawline. I had this done in Calgary at the Foothills hospital, and everything went pretty much according to plan. Right now I am finding that the site where they did the angiogram for embolization is hurting more than my actual jawline! I cannot move my bottom lip because a nerve in my face was affected, but this is suppose to get better with time (I hope!) The surgery wasn't as bad as I thought it would be, it took about 1.5 hours and I don't remember a single thing. I am really hoping for no re-growth. I hope everyone recovers smoothly! Let me know if you have questions about my experience and I would be happy to chat. :)

Comment by Mel on June 11, 2015 at 12:43am

Hey guys, thanks a bunch for getting back to me. We have not had anything done other than typical MRIs and such. We do want to try the compression bandage. I'm not too sure how to go about getting one. His doctor is in Toronto. Can I get one anywhere? And I think we are needing something heavier for the pain as well. Has anyone done any herbal medication for pain?

Comment by munchkin on June 9, 2015 at 9:59pm

My daughter had an avm in her foot Rolphie77 and has been in quite a lot of pain too. She is 14. It s a tough time anyway for teenagers, let alone with AVMS! It depends what sort of pain it is. We tried all sorts of things. Now she takes a nerve damage pain killer at night and at least that helps her sleep. She now wears compression stockings all the time as they really help the pain. Have you been to a pain management team at your local hospital? This really helped my daughter. Good luck. I so feel for you. Perhaps the shooting pain are nerve pains. This means that normal panadol etc dont help. She ll need other medication I think. Thinking of you

Comment by munchkin on June 9, 2015 at 9:56pm

 

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Posted by Tricia on July 31, 2015 at 8:56pm 0 Comments

Hi guys, I have been contacted by William Fitch daughter Alisha wanting all his AVM friends to beware of his passing on the 28/7/215. If you would be so kind & pass this very sad Message around. Thank you. R.I.P William

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