Oh Jodi, such a horrible moment in time, tearing open your dura once again.
I’m sending all the healing energy I can and the focus that your MD locates and repairs this new leak quickly.
I can only be up for about 15 minutes at a time still. I live alone.
I make large batch freezable meals in 15 minute increments. (Spaghetti sauce. Soups, chili, beef stew, lasagna, crock pot anything etc). I set a watch alarm so that I don’t lose track of time, and get up to chop some veggies first, no matter where I am in the process at 15 minute alarm, I go lay flat again. For minimum of 2 hours, then I have another 15 minutes upright. It’s kinda amazing what you can do in 15 minutes.
Hi Teyani, thank you for your kind words. 🤍 I’m so sorry to read this about your though — I know you had surgery, and was hoping your baseline had improved. Have you been patched after surgery?
There’s no patching in my near future; my talk at this year’s BTG explains the many reasons why, but it’s unfortunately not a risk I can afford to take. I’ve done consults, but until I’m prepared to accept the risk of getting worse, not better, it is a tough sell. And with my facts, outcomes aren’t reassuring.
Unfortunately, chopping things is one of the biggest issues with my ventral leak, but I’m glad to hear you’re able to, and have found a system that works for you. Having MCAS also means a lot of soups and sauces and the like are out. Definitely complicates things!
May I ask, what symptoms are most prevalent after 15 mins up, is it the brain sag and all the cognitive and other changes it brings? (For me that’s been the worst)
I truly wish you could get more uptime, and hoping you slowly gain it over the coming year.
Thanks Jodi. I’ve had 4 blood patches, 6 fibrin patches, a laminectomy in my thoracic spine with a full dura wrap, and another surgery just above that laminectomy to clamp off my first venous fistula March 24, I developed another VF last June, and went to Cedars to get help. They recommended embolization this time, which Dr Maya did in Nov 24, I was much worse afterwards. Then as of week three in Dec, I began fluctuating between low pressure and rebound high pressure. I had been scheduled for a cervical spine surgery at the end of Jan, but I decided to postpone it due to the RIH. So nothing is scheduled as of now.
Being upright: orthostatic headache at back of my head (like someone bashed me with a baseball bat) , dizziness, hand tremors, blurry vision, floaters in my vision, feeling faint, nausea, full body drenching cold sweats. All that happens after 15 minutes and things get worse if I stay upright longer. I’m at the wait and see portion of responding to this rotten condition.
Thank you for sharing. I am sorry things haven’t trended upward for you. I get those same symptoms minus the cold sweats, and some very angry tinnitus added as well. Hoping for some positive change for you, or a path forward that you feel good about. For me, i am still on pause with treatment but I hope I can make a little faster improvements now that I’m not constantly going into anaphylaxis any more (having moved out of my old apt).
Ah, Jodi. I'm so sorry to hear about your fall. Best wishes for recovery.
Thank you so much Emily <3
I just read the ProPublica piece about the doctor. I kept thinking it couldn't get worse, and then in did. Just... horrific.
Sorry to hear about the shower sliding. Wishing you a speedy (and sustained) recovery.
It truly is a twisted story, so horrifying.
Thank you for the kind words
Oh Jodi, such a horrible moment in time, tearing open your dura once again.
I’m sending all the healing energy I can and the focus that your MD locates and repairs this new leak quickly.
I can only be up for about 15 minutes at a time still. I live alone.
I make large batch freezable meals in 15 minute increments. (Spaghetti sauce. Soups, chili, beef stew, lasagna, crock pot anything etc). I set a watch alarm so that I don’t lose track of time, and get up to chop some veggies first, no matter where I am in the process at 15 minute alarm, I go lay flat again. For minimum of 2 hours, then I have another 15 minutes upright. It’s kinda amazing what you can do in 15 minutes.
Keep your expectations low.
Get a patch as soon as possible.
Hi Teyani, thank you for your kind words. 🤍 I’m so sorry to read this about your though — I know you had surgery, and was hoping your baseline had improved. Have you been patched after surgery?
There’s no patching in my near future; my talk at this year’s BTG explains the many reasons why, but it’s unfortunately not a risk I can afford to take. I’ve done consults, but until I’m prepared to accept the risk of getting worse, not better, it is a tough sell. And with my facts, outcomes aren’t reassuring.
Unfortunately, chopping things is one of the biggest issues with my ventral leak, but I’m glad to hear you’re able to, and have found a system that works for you. Having MCAS also means a lot of soups and sauces and the like are out. Definitely complicates things!
May I ask, what symptoms are most prevalent after 15 mins up, is it the brain sag and all the cognitive and other changes it brings? (For me that’s been the worst)
I truly wish you could get more uptime, and hoping you slowly gain it over the coming year.
Thanks Jodi. I’ve had 4 blood patches, 6 fibrin patches, a laminectomy in my thoracic spine with a full dura wrap, and another surgery just above that laminectomy to clamp off my first venous fistula March 24, I developed another VF last June, and went to Cedars to get help. They recommended embolization this time, which Dr Maya did in Nov 24, I was much worse afterwards. Then as of week three in Dec, I began fluctuating between low pressure and rebound high pressure. I had been scheduled for a cervical spine surgery at the end of Jan, but I decided to postpone it due to the RIH. So nothing is scheduled as of now.
Being upright: orthostatic headache at back of my head (like someone bashed me with a baseball bat) , dizziness, hand tremors, blurry vision, floaters in my vision, feeling faint, nausea, full body drenching cold sweats. All that happens after 15 minutes and things get worse if I stay upright longer. I’m at the wait and see portion of responding to this rotten condition.
Thank you for sharing. I am sorry things haven’t trended upward for you. I get those same symptoms minus the cold sweats, and some very angry tinnitus added as well. Hoping for some positive change for you, or a path forward that you feel good about. For me, i am still on pause with treatment but I hope I can make a little faster improvements now that I’m not constantly going into anaphylaxis any more (having moved out of my old apt).
Sending hugs to you.
Ps. I did hear your talk at BTG this year, but the persistent brain fog has caused me many memory interruptions.
I'm so sorry to hear your news. Thoughts, prayers, and hugs reaching out to you. 🫂
Thank you so much Martin
Oh no.... Wishing you a speedy recovery. I really enjoy the articles you share
Thank you, and so glad to hear you enjoy CAE