Extremity and Other Non-Brain AVMs


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
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Comment by Westwin on November 8, 2015 at 10:35am

Procedure at Children's Hospital cancelled due to age, BMI and hypertension. Being referred to another hospital now this time in CT. Entire process has to start over, for the 4th time. Balancing between "gee maybe this isn't so bad that I really need treatment", and "can I please get this over with".

Comment by happy on October 24, 2015 at 1:49pm

Westwin, I have been reading all of the comments and experiences from our group of AVM survivors and as you can see we all have different experiences. I had my pelvic AVM diagnosis in Oct 2011 and the embolization was done January 2012. My procedure was done by an interventional radiologist using glue. I had 4 branches on my right side and 1 on the left. My treatment has been very successful to date. Just wanted you to be aware that the symptoms for a pelvic AVM can change quickly. From October until my treatment in January I was approaching congestive heart failure. I was walking with a cane because of great leg weakness, general weakness and short of breath. An EKG was done about 3 weeks before my procedure and the primary care doctor said it looked like I was having a heart attack. However, because of lack of blood volume there was nothing to do at that point but rest and limit activity. Take all the information that you can find, but make sure you choose the best doctor you can find. May God direct your decision.

Comment by Westwin on October 21, 2015 at 10:43am
thank you for your comments. Jury is still out. I need to discuss more with my care team.
Comment by Leslie A McDonough on October 21, 2015 at 7:51am

Hi Westwin, I have not commented on the latest on my AVM because it was still sinking in. I too as I have posted before gone to Boston to MA General. to make a long story short - being treated for at least 16 years with many coils and alcohol, etc. The last one being MA General with a stent to close up not open up and some more coils - 5 years ago + and on the table for 6 hours because of complexities in the area of treatment. I had a dye contrast Cat Scan in August at my local hospital and sent to my Doc in Boston.The letter to me of Sept 3 from Dr. Watkins said and I quote - I am happy to say that you have had a durable and complete resolution of the problem. There is no evidence of a residual AV Malformation. I am still in shock as I have lived with this for so many years. I do have some tissue and nerve damage and have periodic pain from that when doing too much but that is nothing compared with the old AVM pain. I hope this helps with having an experienced Dr. with lots of knowledge in the AVM area doing the work or at least overseeing the work being done as in Vascular surgeon - Interventional radiologist association with each other (in my case they both worked on me).
Also, this is a first thing not last thing for me. I am a believer in Christ and I Thank Him for the outcome - prayer is never wasted.

Comment by Leslie A McDonough on October 21, 2015 at 7:40am

Comment by Nataraj on October 20, 2015 at 9:37pm

Hi Westwin.
I am just like you. I have a big pelvic AVM. I can see lot of varicosities in my pubic area and it keeps increasing and I have no pain or any other symptoms except i develop DVT in my veins. So I am on coumadin. I have seen many Dr some suggest coiling, glues but I am afraid to do it as it is not causing problems and like you said I don't want to wake up a sleeping bear.I am so confused whether to meddle with it or leave it alone. Since I am on coumadin I am more worried.I am depressed too because of this as I keep checking everyday and every time whether I am getting any blood in my urine or stools. It is frustrating. I don't know what to do. I just pray God....

Comment by justme on October 20, 2015 at 9:06pm
Westwin- I have. Pelvic AVM also. Had 5 treatments on it 2 years ago. Haven't gone back since the last one. The the used the glue, coils, whatever they could throw at it. The first one was definitely hard. I'm not sure what I expected, but I would run fever from anywhere 1-5 days after and basically felt like I had the flu. I honestly feel my doctor was too aggressive. On the last one somehow a nerve was damaged and I my right foot went completely numb. I was unable to use it for about 2 weeks, then the worse pain in my life came to it. Nothing helped. I finally saw a neurologist who was willing to investigate and he found my uterus had grown immensely and my right kidney had hydronephrosis from the ureter being blocked from the AVM. Had a hysterectomy (very dangerous) and the pain in my foot immediately went away, however it did leave parts of my foot numb. I can use it and it functions, but there are parts I cNt feel at all. All this being said, I don't want to scare you, however, I was completely unprepared for what could have happened and unfortunately did. Ask lots of questions and go slowly with the procedures. I haven't gone back to see how it is and unless I'm in complete heart failure I don't ever plan to!! Best wishes to you!!
Comment by Westwin on October 20, 2015 at 8:24pm

angiogram and embolization with coils set for 1/6/16. Not looking forward to this in the least. Only minor symptoms at present so I'm afraid to poke the bear so to speak. Surgery to remove the AVM is not an option due to it's size, 15 cm, and location in my pelvis, too near delicate structures. Issues of bleeding and cardiac stress are understood by me but still not willing to fully accept having this procedure. I guess I'm just being thrown into making a decision that has not good answer.

Comment by Abbey Rodamaker on September 26, 2015 at 9:19pm
Anyone with a periorbital AVM? My daughter had a left periorbital AVM surgically removed at 4 months old. No embolization. The lesion is still visible and shows marked increase after crying (she's now two). Original MRI/MRA could not rule out orbital extension, but her surgeon acted like it was no big deal...
Comment by Msamberxo on September 17, 2015 at 4:58pm
Good luck Westwin I'm one of the few other members on here with a pelvic AVM. I know how hard and draining it can be I have had 5 angio embolizations with glue and coils I have one every year and it's not easy but it keeps the growth under control so if it is an option I would make sure your doctor has dealt with your type of avm before and do what's best for you. Hope your feeling well.

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please help me my frends

Posted by Tomas on November 24, 2015 at 10:56pm 2 Comments

I have a few questions:
How do you feel awakened after head surgery
or severe pain after surgery?
thank you people!
Regards Zanas

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