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AVM Survivors Network

New here, with a newly diagnosed son

Hey folks-

I am looking for help. On June 28th, my son collapsed with convulsion/seizure like activity. We took him to the ER, where they ran an MRI with negative results. We were scheduled to discuss his case with neurology on July 1. During the few days in between, he had a couple of episodes of numbness in his legs, and he walked them off.

On July 1, following an episode that he had recovered from, he was in the bathroom with my wife outside. She asked him a question, and he responded oddly. When she opened the door, he was tonic clonic on the floor. She called to me in a panic, and I started CPR because I didn’t think he was breathing and couldn’t find a pulse.

Doing CPR prompted the ER to take a chest x-ray. On the x-ray they found this mass, which turned out to be a pulmonary AVM. Every other test has come back clean, from MRI’s to MRA’s, CT’s and every possible blood test imaginable. The only thing he has is the pulmonary AVM, which they are estimating is 3cm and in the lower portion of his right lung.

I am aware of the possibility of HHT, but there are no other markers for HHT present. They have taken blood to be checked for HHT, but we won’t know the answers in the meantime. He is undergoing coil embolization at Columbia Presbyterian (NYP-Morgan Stanley Children’s Hospital) on Monday AM.

I am looking for any opinions/data/history that can help me better understand what lies ahead.

First and foremost, is there anyone here with a single pulmonary AVM and no HHT?

Secondly, we have been told that pulmonary AVM’s are rarely found in children of his age? Birth, or 40’s and 50’s, and almost always with symptoms preceding. My son was a completely unsymptomatic, healthy, athletic individual until 10 days ago, and now he is not.

Thirdly, does anyone with a pulmonary AVM have issues with positional changes? If he stands up too quickly, his SPO2 level drops from 90 to 75 and he goes T-C. However, if he sits up, acclimates, then stands and acclimates, he can function like a normal 13 year old. We went kayaking on July 4th for an hour without issues, but he had a meltdown the next morning.

Fourth, doesn anyone have a history of passing out after urinating? He’s gone T-C 4 of the 5 times after peeing. I assume that it’s the positional changes affecting him, but I don’t want to overlook his other systems.

Fifth, if you have had the coil embolization process, did you have any issues afterward? Are there things that I need to watch for? I want him to know what his future looks like.

Lastly, was your diagnosis process painful? Did you have to pass out in front of 2 rooms full of doctors to get them to believe that you/your son was really ill? Was your doctor equipped to handle it? Did your referral to the expert require an act of god to get them to call you back?

I am doing the best that I can, but I haven’t been able to get anyone to explain things to me without having to look up1/2 of the words they used. I am looking for answers that I can tell my 13 year old, not medical jargon. Thanks in advance for your support.

Steven

I searched members on the Network that came up when I typed in Pulmonary AVM. You may want to contact them.

http://www.avmsurvivors.org/profiles/members/?q=Pulmonary+AVM

There is also a group for Parents on the Network.

Good luck…My prayers will be there for you Son and your Family as well.

Welcome to the site Steven,

Your questions sound just like the ones all of us ask when we are first diagnosed, especially having to look up 1/2 (or more) of the words! At age 13, your son might be able to help you search and you guys can learn about AVMs together. Getting the DRs to listen without witnessing wasn’t a big issue for us. We did find though that AVMs are not that common in the medical field. You want to make sure your DR team has a lot of AVM experience, even if it means travel to find the center than can help him.
Best wishes,
Ron, KS

Welcome to the group Steven. Like Ron, I suggest trying to find a doctor that knows a good bit about AVMs. Not easy to do, but is well worth the effort. I wish your family the best.

Hi Steven, welcome to the most wonderful site to get the support you need! There have been so many wonderful medical advancements with treating AVMs and will keep your son and your family in my daily prayers and sending you lots of positive energy and blessings for his treatment tomorrow!

/Michele

Hi Stephen. My first cousin had a pulmonary AVM but he was an adult when it was discovered. He did not have any problems once it was removed. I would highly encourage you to join the sub-groups mentioned on the earlier posts.

I did a search of Columbia Presbyterian for you…
http://www.avmsurvivors.org/main/search/search?q=Columbia+Presbyterian+

Yes…quite a few people on here have nightmare stories when it comes to trips to the ER. If you have time please read this blog because it shows why having the right doctor is so important…
http://www.avmsurvivors.org/profiles/blogs/almost-untangled?xg_source=activity

I will be praying for you and your son tomorrow!

I had a coil embo…no problems

Hi and welcome,
All I can say is make sure you get an AVM specialist to do anything that needs doing.
My thoughts are with you all

Kia Kaha Taiki

DM

Son just came out of the coil embolization procedure. 3.5 hours start to finish, and the doctor is optimistic that he got it all. His sats are up 5-7% immediately and he is resting comfortably.

Super Hurrah!

So happy to hear the that the procedure went so well Steven - YAYYYYY :-))))))!!!

So many blessings for us to be thankful for!