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AVM Survivors Network

Finally getting some answers

#1

Well I am back here again! My son has a lip avm and are working at chop in Philly but waiting 2nd opinions from boston and arkansas! Today at chop the ir told us that embolization through angiogram was the only option! She would want to use alcohol! We are going elsewhere and waiting to hear back! Finally today she confirmed avm with a mixed capillary component! I am
Not confident with the ir in Philly! My question is may someone else be able to do a surgery??? I guess that is why 2nd and 3rd opinions are do necessary! Thanks :heart:

#2

Please check out Johns Hopkins in Baltimore, MD. This web cast is interesting and may spark some ideas for treatments and questions to ask the surgery team. Good luck!

http://webcast.jhu.edu/Mediasite/Play/d2af9eff9e564311b45dfbaeac0d1d0d1d

#3

Thanks so much!!! The address is saying invalid! Is there somewhere else to view it?? Thanks again!

#4

Try copying and pasting the link in to your browser. I was able to click on the link, and it is working for me. It does talk about alcohol treatment of AVMs. I have a question for you: Who are consulting in Philadelphia, Boston, and Arkansas? I live in Nashville (not a small town!) and I guess I feel pretty good about my neurosurgeon but would like a second opinion about my situation. I have HHT, and the genetics doctor who drew the blood for the HHT test suggested some clinic in Cinncinnati.

#5

Mary, check out the HHT Centers of Excellence: http://hht.org/living-with-hht/treatment-centers-2/treatment-centers/

Arkansas is wonderful. We also have members with HHT who go to Duke.

#6

Thanks Mary on phone so will try it on my iPad! Anyway my son has cm-avm and his dermatologist at chop wants to enroll us at the hht clinic at penn for a closer follow up! On his lip avm he sees IR dr Cahill! We consulted dr richter at Arkansas and waiting for who will look at him in boston! He has had a full body scan and no avm anywhere else. I will keep you posted on what I learn about the hht clinic. Thanks for your help!

#7

Sounds like you have everything under control. Great job Mom! Getting many opinions and being aware of all of the options is the only way to go.

#8

Amy, glad you are getting other opinions. I had AVM in my lower lip as teenager, doctors wanted to cut it out by taking out the middle of by lower lip and pulling it together afterwards leaving me much more scared than I already was at the time. However, I refused and they went back to exploring other options. They eventually used a series of shot to cut off the blood flow to it, and over a period of time isolated it enough to control the bleeding and cut it out without cutting a vee in my lower lip. So, keep pressing for other opinions and go with your gut instincts! I am praying you find the right solution for your beautiful little boy. R/Steve

#9

Amy, I am wondering exactly what an AVM looks like. Mine is deep within my brain. He is so lucky you are taking care of this. I always heard they can occur anywhere I
have only heard of the brain, until I was introduced to this site. Was it present to the eye at birth? Just curious. So important to get a doctor that knows what he's dealing with. Will you need a plastic surgeon after resection? Best of luck to you all.

#10

Very good luck to you and your son.

#11

Hi Amy - My son has an extensive avm which has taken over his left hand, entire arm, shoulder and into his chest. I have had about seven opinions over the years and sclero-therapy has been the only answer for him so far. He has had over 15 of the procedures but we have the best IR doctor ever and are happy with him, Richie and Dr. Rilling (Froedert Hospital-Milwaukee WI)are on a first name basis. Never give up and keep going for different opinions until you are satisfied. My son Richie is almost 23 yrs old and lives with severe pain everyday. Just this week we found a pain management doctor that actually offered hope with two procedures for pain that we were not familiar with. I cried when the doctor said one of the procedures may be "life changing" for my son. Granted this is for pain control and won't help the lack of use of his arm but it is still hope. Never give up searching - I have been at it for 20 years. Thanks for listening and good luck - I will pray for you and your son. Jeananne

#12

Jeananne, please let us know how the surgery goes for your son. We have a lot of members with arm and leg avms who live with daily pain.

#13

Thanks so much for your concern - I just came upon this site a couple of weeks ago when I was at my lowest trying to help my son. The support is awsome!

#14

Google dr. Robert spetzler, you can send him the medical records. I would definitely get his opinion. We live in NYC and go to Phoenix, Arizona to see him. He is amazing. Good luck.

#15

Thanks everyone! Susan my son was born with a larger lower lip. We were told up in teh beginning it was a hemangioma and it would go down. By teh time he was 2 1/2 we pushed to go to Chop in philly, we live in Scranton. Anyway Steve it is scary because we had surgery and met with the vasular plastic surgeon who stated he could fix it with 2 surgeries. The first they debulked but cut his lip in middle to pull together. Anyway minimal scar and looked great. It grew back again and he was diagnosed with cm-avm. I knew it was something else. Well after months of me pushing they confirmed that he has an AVM. It has been a long road and know it will be until we finally hear that he is able to be successfully treated. This site is amazing and the info is invaluable. Jae I hope all is ok and know that people are here to hear and share stories. I am happy you found it. Thanks for all the insight and am still looking at places to talk to. Hugs again

#16

Good luck Amy! You are the best mom for your son, and did a great job in finding more opinions and answers.
Surgery after embolization (or alcohol embolization alone) may be the best way to have it cured, but I would suggest to get as many options as possible and then choose the best. Don't forget about your intuition!

#17

thanks Svetlana...... such wonderful words of encouragement. I will keep you all posted once I hear back. Fingers crossed we get an answer soon

#18

Hi Amy - You should definitely get a 2nd and 3rd opinion. I received 5 consults and I had an extremity AVM and most of those doctors didn't understand an AVM or unable to even diagnose one. I am an Arkansas patient myself and they are the best and truly understand AVMs. If you don't feel confident with your IR, then do not proceed with him/her. Please keep us posted on what you decide to do for your child.

#19

Excellent comment from you, Steve, for Amy to here.

Is not this site amazing, of how we AVM people can connect!?!?

Lisa A. Stuckel/Kane

#20

Yes this site is amazing BoxBarge, and so are we as survivors :)