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: 598
Latest Activity: on Thursday

Discussion Forum

Upper Extremity AVM

Started by Kyle. Last reply by LionLady on Thursday. 2 Replies

Medicines for controlling/curing AVM

Started by Prashant. Last reply by Autumn Nicole on Tuesday. 3 Replies

Headaches & Fatigue & moodswings

Started by Carlysmom. Last reply by Tessy123 Jul 9. 2 Replies

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Comment by Westwin on Wednesday

Well, the saga continues. Off to Boston again Friday for 2 more appointments. Echocardiogram and pre-op assessment to see if my 15 cm pelvic AVM can be treated via angio as surgery is not an option due to its complexity. Fortunately symptoms are still minimal just a bit more frequent. Biggest concerns are bleeds and cardiac stress so treatment is suggested while I'm young and healthy. I guess this is where 55 y.o. can be considered young. Wish me luck!!

Comment by Deb C. on Wednesday

Jackie, there is a specific group for Facial (Head/Neck) AVMs where you might be able to get answers to any questions you might have. Here is the link:
http://www.avmsurvivors.org/group/facial-or-head-neck-avms

All the best,
Debbie

Comment by Deb C. on Wednesday

Teresa, I hope they can find out definitely what's going on and get you on a path of less pain.

Take care,
Debbie

Comment by trob3613 on Wednesday

I have an MRI Thursday on my right calf. I look forward to finding out for sure if it is a AVM in my calf or something else causing me pain but also fear it. I am hoping the doctor isn't right and that it isn't a AVM but am not quite sure if anything else would be any better. They can see what they think is a AVM on the ultrasound and I won't know the results of the MRI till Friday morning when I go see the doctor so I am sure I won't get much sleep that night, not that I am sleeping very well right now with my mind racing. I know that something has been going on in my right side of my body for about 4 years now. I have gone from running almost everyday to injury after injury to my right leg stopping me totally from being able to run. I feel like it is all linked to what ever is in my right calf. Thanks for letting me rant.
Teresa

Comment by Jackie on Tuesday
CHEEK AVM- anybody out there please!!!!
Hi I have a AVM between the left internal artery and left facial vein....
Having an angiogram with view to proceed to transcatheter embolisation next week (3 Sept)
Thanks- Jackie - from New Zealand
Comment by Jackie on Tuesday
CHEEK AVM- anybody out there please!!!!
Hi I have a AVM between the left internal artery and left facial vein....
Having an angiogram with view to proceed to transcatheter embolisation next week (3 Sept)
Thanks- Jackie - from New Zealand
Comment by Jackie on August 24, 2015 at 3:01am
Hi, I am 56 year old female from New Zealand and about 6 weeks ago After an MRA it revealed I had an AVM on the cheek.. I had never heard of this before so this is very foreign to me. I will undergo a procedure through the groin next week but this seems to be a lot of " unknown territory" until the procedure begins. I would appreciate your comments
Thanks - Jackie
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.

 

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Avm 25 years ago on left side of brain. Now walking with a limp on right leg, could this be scar tissue? Had angiogram this week, no new developments thankfully! 5 mris on head, back, neck, spine fou…

Posted by Donna on August 28, 2015 at 1:30pm 3 Comments

Avm 25 years ago on left side of brain. Now walking with a limp on right leg, could this be scar tissue? Had angiogram this week, no new developments thankfully! 5 mris on head, back, neck, spine found nothing. Emg test done on nerves.. nothing.…

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