Welp, on January 9th I had a neurosurgeon from the Mayo Clinic crack off a few pieces of my vertebrae (the lamina portion of the vertebrae) from T5-T8, cut through the dura covering my spinal cord, and then remove a 3 cm long arachnoid web that was compressing my spinal cord. They are pretty certain that the arteriovenous fistula that I had previously been diagnosed with and treated for was completely unrelated to the spinal cord issues I’ve been having. Similar to the fistula though, arachnoid webs are also very rare, about 1 in 500k or so. This paper has some good summaries if you really want to read a lot.
As three (and three quarters) year old Morgan has excitedly whispered a few times:
They figured it out!
I’m trying to not get overly optimistic, but it is quite possible that now that my spinal cord is no longer compressed it may just float back to where it is supposed to be and will conduct signals much better. Really only 1-2 years and a lot of rehab will tell though. I’m pretty excited about the idea of rehab where I can actually make progress though.
So now I have about 5 more weeks of recovery where I’m not supposed lift more than 10 pounds. Unfortunately at almost 4 months now, Connor is already bigger than that. I can however do as much walking as I can manage. Right now I can safely do about 300 feet as long as I have hiking poles to help my balance. Still a lot of pain from the surgery, but it is a lot better than it was last week, so seeing some improvements.
Thanks everyone for all the thoughts and notes. The past month or so has been a hectic whirlwind trying to figure out how to get to the bottom of why things were getting worse. Turns out we hadn’t really figured out the right cause in the first place.
Below is a video of a similar surgery, and a few images of my spine.
That U shape is the arachnoid web preventing a dye injected in my lower back spinal fluid from flowing up to my brain. I was head down at an angle for this image. 
Installing a gold bead at T7 to make sure they operated in the right place. He was literally hammering that needle into me. Was rather cool. 
After surgery making sure they hadn’t left anything in – except the obvious thing.
greg.blog 
Wow Greg, so happy they found something that can be removed to hopefully reduce or eliminate your symptoms. But it still sounds extremely painful and you are to be commended for your positive attitude and hopefully you will see some improvement over these next few weeks. Best of luck to you.
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This sounds like really positive news! Thanks for sharing your struggles and information in such detail – as well as knowing how you’re doing, it’s been really interesting to read.
Hope this latest discovery and surgery lead to amazing improvements for you!
Say hi to Mekayla from us too 🙂
Sarah & Patrik ________________________________
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BIG R-E-L-I-E-F! Fingers crossed!!
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Sounds promising, I hope it really helps this time!
Also on the plus side the name of it makes it sounds like they found and removed an evil alien being that was trying to take over your mind, but failing because of your constant struggle of willpower; almost as bad-ass as what was actually happening. 🙂
Good luck!
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Ya, I feel like I need to come up with a lot of spider related jokes now.
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Holy cow this is amazing in 7 different ways! Also i lol’d at the scissors part. Ps, going to the mayo clinic saved my colon in 2002
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Ya, I have lots more thoughts on Mayo vs Kaiser. Kinda amazing that the same imaging Kaiser has been looking at for over a year Mayo was able to find a diagnosis from.
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All this shenanigans going on and yet you STILL respond to my slack pings immediately. I hope the rehab goes well for you, man. Thanks for sharing all the details of this – it’s something I know nothing about.
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Good luck Greg. I was being diagnosed incorrectly for almost 2 years. Doctors wanted to biopsy the lesion in my spine. Second opinion at the mayo, and the neurologist saw something he thought was a tad off. An arachnoid web. Tons of other tests, images, and we decided with surgery back in September of 2018. My 6 month follow up showed the lesion went away. It appears the web was compressing my spine causing the lesion and my symptoms.
I am still dealing with nerve issues in my legs and feet, but only just a couple of weeks ago did it feel like things have started getting better.
Wish you the best
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Hi please someone help me find a neurosurgeon that is aware of arachnoid web,and has successfully removed it. I am in Georgia
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