Getting an embolization on the morning of Friday the 27th

Wow ok, I was 19 when my pain started and the softball started to form, however I wasn’t able to find a doctor who knew what the heck it was until I was 25 years old! I am now 39! It’s never too late to start embolization procedures but you do need to find a good doctor who knows what these AVMs are. My surgeon is located in NYC where I live. How old are you now? I’m sorry you don’t live where you can find an experienced surgeon for it, they are hard to come by. But there are many experienced ones in the Boston and NY area if your able to travel. I can always send you the info to my surgeon if that was an option for you.

Filomena

2 Likes

Thank you John. :smiley:

Hi Michelle,
The swelling for me is more on the top of my foot than on the sole. My avm basically wraps around my second largest toe. The bleeding is from the top of the foot. As for pain I am extremely fortunate that I am not feeling a lot of it currently. I am really worried that is going to change with the embolization.

Thank you for sharing your experience. It sucks that the doctors where you are not more knowledgeable. I am really hoping that you get the care you need for your avm Michelle

-warren

Hi filomena. Thanks for your response.

I am 53 years old. I live in California in the Bay Area. The Dr. that is going to do the procedure tomorrow has some experience dealing with avms in the extremities.

I am in a position where stopping the bleed is a critical thing so I don’t know if I have a lot time left to get this fixed. That also possibly limits whether I can get a second opinion or not.

-Warren

1 Like

Hi Warren, how are you? I hope you’re good & well.

I was born with an AVM on my eye/orbit/frontal/temporal & occipital lobes

I had a bleed end of November/early December 2017 where my conjunctiva came out of my eye socket.

I spent the whole of 2018 feeling DREADFUL, CONFUSED, LOST, ROBOT/ZOMBIE LIKE

I had a MRI scan early 2018

Angiogram (I think it was in March 2018)

Then a CT scan in April 2018

THEN I HEARD NOTHING UNTIL I GOT A LETTER AROUND END OF OCTOBER/NOVEMBER 2018 (THAT’S WHEN I NEWELY JOINED AVMSURVIVORS)

I went back to the hospital early December 2018 & they put me to sleep & they did the angiogram & I woke up & DOCTOR SAID THE ARTERY THEY WANTED TO EMBOLIZE CLOSED BY IT’S SELF

RICHARD, KNOWS HOW LOST & CONFUSED I WAS BUT I HAD TO TAKE THE RISK & EVERYTHING TURNED OUT GOOD.

NOT ONLY FOR ME BUT FOR THE DOCTORS ASWELL.

I LEARNT IN 2018 A FEW THINGS LIKE PATIENCE & GRATITUDE.

I ALSO LEARNT THAT ALL THE TIME & ENERGY I SPENT WORRYING & STRESSING WAS REALLY POINTLESS.

EVER SINCE THAT BLEED MY LIFE HAS NOT BEEN THE SAME EVER SINCE.

I NEARLY KILLED MYSELF IN 2020 THEN GOT SECTIONED (HOSPITALISED IN A MENTAL HEALTH/PSYCHIATRIC HOSPITAL)

I GOT ARRESTED IN 2021 THEN SENT TO A CARE HOME FOR 9 MONTHS

& NOW I’M CURRENTLY LIVING IN A REHAB PLACE.

STAY POSITIVE!!! :sunny:

NEVER EVER LOSE HOPE!!!

PRAY!!! :palms_up_together:t3:

I PRAY ANYTIME, ANYWHERE & EVERYWHERE QUITELY ALONE BY MYSELF

I WILL PRAY FOR WHATEVER I WANT IN MY LIFE & I ALSO PRAY FOR OTHERS ASWELL IN THE WORLD

:blue_heart:

1 Like

Warren,

The other thing that @HealthIsWealth could share with you is that he has had bleomycin sclerotherapy, so if the doctor suggests that, we have more than one person who has had this treatment.

Best wishes for tomorrow!

Richard

2 Likes

Yes, I forgot to mention I’ve had 2 bleomycin sclerotherapies but treatments got stopped because of COVID.

2 Likes

Thank you so much for your reply HealthIsWealth. I am very grateful for you sharing your story. I feel encouraged and inspired by you and your journey.

I am definitely learning more about gratitude and patience right now !

3 Likes

Thank you Richard!

1 Like

@Wdc1 Warren I hope everything went well for you . If you are at Stanford I hope you Dr Leong as your anesthesiologist and I was just checking to see the dr who assisted Dr Marks when I had my last Angio and embolism in 2015 and I think maybe Dr Maybe Dr Maybe Marks is retired. So not sure if you are at Stanford but it was Dr. Jeremy Heit who was very nice.

If you need anything or just want to chat or need an advocate let me know.

I am sure I am a weirdo but as long as the anesthesiologist understands that I need good nausea meds I don’t stress the knock out portion.

Hope you got good food in the hospital and everything went well
Hugs
Angela

1 Like

Good morning Angela!

Thank you very much for your support. We can’t use our Insurance at Stanford so unfortunately I was not able to utilize the services of their AVM clinic. The Dr that did my embolizations - Dr Thomas Brahler, the anesthesiologist Shani Samedi and the Nurse were good.

They informed me and comforted me before the procedures which according to Dr. Brahler went well. The portion of my AVM that was bleeding was occluded 100% . No more bleeding from there I hope!
The other portion of the AVm on the bottom of my foot / toe was occluded 80%. So now I just wait and see if my toe or toes fall off . The majority of the embolizations were done with glue with a very small amount of alcohol.

I have had a lot of difficulty sleeping the last few days and I have been in quite a bit of pain in the last day or so. I have some pain meds to help manage the pain. Hopefully they are enough. The sensations I have been feeling and some of the pains are indescribable.

I am going to see a podiatrist on Tuesday which is good. I should find out more then and hopefully I will be walking soon and will get to keep my toes.

Thank you for the offer to help advocate for me and everything else. Your help and the support of this forum thus far have really helped me a lot through this process. I am very grateful to you and everyone on this forum.
Edit- Hugs back to you
-Warren