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.
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
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.
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 !
@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
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
@Wdc1
Hi Warren
one thing that really helped me with my AVM surgery and many other surgeries I had non AVM related was a cold therapy machine. You can get them online either from a medical supply company or from eBay.
Some are even both cold and hot,
I suggest getting a new pad , they make different ones for different parts of your body.
Then what we do is free sandwich size Ziploc bags of water and then put them in the container and usually this will last about eight hours and so you can actually get a full nights sleep.
Put a towel underneath the unit cause sometimes there is a bit of water. And this helps in the healing process.
Glad they were able to get most of your AVM .
Take your time healing. Are they sending you to physical therapy post surgery check up?
Hi Warren, just wanted to wish you warm wishes on your recovery post-op. I’m spinal AVM but since you live in SF
Bay area, your posts piqued my interest. I’m in SF and had embolizations / surgeries done at CPMC. I’m switching now to UCSF for physiatry care and very happy.
It sounds like you are being taken care of by a very supportive team.
Just wanted to send virtual hug to sometime else from SF Bay area.
Thank you. I appreciate your kindness. Wow the big apple. Traveling is not really an option for me at the moment. However I have got back in touch with the Dr who is referring me to a vascular surgeon in Auckland. Sometimes it is easy to give up hope but I need to keep trying and believing there is another option to ease my pain.
Thank you for giving me hope. I hope all is well with you.
Take care
One possibility is to inspire your surgeon to consult internationally on your case, if there haven’t been any in NZ or even Australia. I found that my team of GPs varied completely in their approach to me. One didn’t know anything and appeared uninterested in knowing anything. One junior doctor was fascinated and asked if she might have a listen to my bruit (you could hear the squirting from artery to vein with a stethoscope in my case) as “I might never find another in my career” and my favourite GP clearly didn’t know very much but took it upon herself to find out and champion my needs with the hospital. She was the lady who finally got me a surgery date.
So I think ask your surgeon if they might consult internationally about your case and I’d hope they might find it interesting and stimulating to do so and make a bit more progress. It is obviously the case that there are people in a similar situation to you when we look to a larger population such as the English-speaking world that we have represented in small part here.
It is hard not to give up, so balance my unbridled optimism with what you can drive yourself to do. I don’t want to push you more than you want do yourself.
Thank you Richard. You are a wonderfully encouraging person. It is always nice to hear from you.
Drs are certainly all different, the ones eager to keep learning are always a bonus.
Just frustrating when the Patient knows so much more than them. I told my Dr that as long as the specialist knows what an AVM is, I was willing to see him. Lol. If we don’t laugh we will only cry.
Hello Angela! Thanks for the suggestion for cold therapy. Thankfully the pain has diminished quite a bit since the procedure. The podiatrist I am working with says over all things are looking good. Going to see the podiatrist again tomorrow. Will talk about physical therapy tomorrow. Still not walking yet but I am able to get on crutches and I can have my foot vertical now.
Things are looking much better right now. Thank you for all of your help!
Once my case was taken up by my provider and reached the right people things have been going well and the team working with me has been supportive and helpful.
Looks like there are a few of us here in the SF Bay Area
