Hi all,
I never know where to start - those of you who are active on here probably already know a bit of my screwed up story. Others who aren’t on here much (welcome back) or are new (welcome to the place that saved my sanity - and on more than one occasion.)
I’m going to attempt to “bullet point” my story because it “surrounds” my question:
- First diagnosis in 1978. No one in Michigan even knew what it was. Mayo Clinic removed it (95% of it). Additional surgeries and embolizations in 1986-87, 2009, and 2018. Managed to go thru the first three series of treatments, embolizations, and surgeries with some but not major long term issues.
- 2018 was a bad bad year. Had a major embolization on January 30, 2018. 2 1/2 years later, well let’s just say that there are 13 sets of cranial nerves. My symptoms that I still deal with are related to 8 of those 13 nerves. Hearing, headaches, vision, voice, swallowing and the beat goes on… I have not returned to work and I don’t believe, shy of a miracle, that I will be able to.
- a lot of my symptoms are changing almost constantly. My headaches now are different than they were in the summer of 2018. They are no less difficult, just different.
Because of that, I keep pretty close track of what I’m seeing and feeling in terms of changes. I noticed last week that my feet were starting to swell up. Not a lot but definitely happening. So, I e-mailed my doctor and he said it doesn’t sound serious, keep active, when you aren’t active, elevate it and let me know if it gets worse. It was getting better but then by yesterday morning it was getting worse. I was on my feet for maybe 30 to 45 minutes and they got a LOT puffier. So I called the doc and I have an appointment there tomorrow and they sent me to the emergency room to make sure it wasn’t a blood clot or something serious like that.
It’s not. Whew!
The ER doc said that it appeared to him, based on the ultrasound that it is a “venous insufficiency” which basically means that the gateways in my veins aren’t shutting the back door and the blood that is supposed to flow from my legs to my heart is sticking down in my leg and voila! I have puffy feet and uncomfortable feet. Not a big deal but just “one more thing.” to have to deal with.
I said before that I don’t believe in coincidences. I think that the odds of this happening to someone who has another type of rare vascular disease is probably very slim.
So my question for you - do you or anyone you know whom either has or had an AVM also deal with this venous insufficiency thing as well?
Thanks in advance,
TJ