I don't believe in coincidences

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,



Hi TJ! I can’t say that I have heard of the connection you mention but I tend to agree with you, I’m not a big believer in coincidences either. Is there anymore exploring being done to confirm venous insufficiency and not something else associated to fluid build up? I know very little in this area but I would seek further confirmation for sure. Take Care, John.


Oh no @TJ127 I am sorry to hear this. Being on your feet for 30-45 minutes doesn’t sound like long to make your feet swell
Are they going to run any MRIs on your brain just to rule it out?
One Other weird thing I have is thoracic outlet syndrome…I have the nerve kind but there is a vascular kind and people talk about swelling in their hands and feet.



Yeah, we are working on ruling out other things. Other things are not as nice of things, so here’s hoping…




Hi TJ, It’s been awhile since I’ve visited with you. Sorry to hear about your feet issue. Like you don’t have enough on your plate! I’m doing well. I don’t want to jinx myself but I haven’t had a seizure in longer than normal. Maybe due to meditating regularly.
About coincidences, they do exist but they have different names. Karma, chance, uncertainty, luck/unlucky… There’s plenty of stuff in the universe we don’t understand (for example the human brain!)
The other side of the coin is what can you learn from a “coincidence”? They can be good wake-up calls. Greg

Greg, Good to hear from you. Never a dull moment in life is there? Next Monday, my 19 year old moves into an apartment of his own. Next Wednesday, our 28 year old moves to a city about 5 hours away to take a job at a top 20 hospital in pediatrics. A phenomenal opportunity for her and some peace and quiet at home once we’re down to only 1 kid at home… (of course, the one still at home is a 18 year old “sometime drama queen.”


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