Top Tweets for #CSFleaker
A young male CSF leaker had 32 blood patches & half dozen DSM's & CTMyleograms. He has medical PTSD but is finally sealed after years of suffering. I was told to give up after 5 patches, 1 of which had remarkable results for 2 weeks. "Just accept it as your life."
#csfleaker
Last night, I dreamt I wasn't a bedridden #csfleaker; that doctors hadn't dismissed me, that I still had my home, my job, my health. And I was so very happy. 3 1/2 years of suffering. I just want my life back.
@_MISS_DIAGNOSED @KerenLeah @RiderDolan I would say “unbelievable!” But sadly it is very much believable, even common for #csfleaker s. Has another leak formed as a result do you think?
@pmkmann @_MISS_DIAGNOSED @csfleakaware @csfleakuk @csfleakinfo That would be a first, and a very important step - a CSF specialist dedicated to helping long-term difficult #csfleaker patients. No doubt they would learn far more, far faster, and solve a lot more cases. But what do I know - I only have an IQ of 150......
#csfleaker friends - thoughts on a CT Myelogram? It's helpful, not helpful, worth it, not worth it, found leak, missed leak? Any input is appreciated.
Photo: Fatbiking back in the pre #csfleak bedridden days. Miss it so much.
DURADASH® SPOTLIGHT—Amalie was 28 years old when she experienced a spinal CSF leak due to a labor epidural. It took exploratory surgery to find & fix her leak. Learn what she's doing for #duradash & what she wants people to know about spinal CSF leak: https://t.co/cyt239WqJm
A big shout out and congratulations to Bahareh @SpinalCSFCanada for the first ever Canadian SIH conference!!🎉 You worked so hard and the results were amazing! Us #csfleaker s owe you a deep debt of gratitude and we love you!❤️❤️🎉🎉🎉
I cherish the memories of good health. Praying for every single #CSFLeaker . I'm so sorry for your suffering and I hope we're all sealed and healed soon. 🤍 Photo: March '20 - Just 3 months before I became bedridden with a #CSFLeak
I've traded living life to the fullest to hospital beds and endless ceilings due to a #csfleak. I just want to live a normal life other people. #pleasehelpme #csfleaker
What a #csfleaker sees. Thank you @csfleakinfo for your compassion! The first photo is mine. 💜💦💔 #csfleak @csfleakuk @csfleakaware
https://t.co/g7mc8PFkMK
There’s a whole #csfleaker community out there that I wish I had known about sooner. Makes me think I’m not as crazy as I think I am (even though I still feel crazy because normal doctors don’t understand what’s going on)
@_MISS_DIAGNOSED It sure is. Thank you. Wishing us both sealing and healing soon!! #csfleak #csfleaker #weneedamiracle
but it is a big step forward on my medical journey that w e get to celebrate during this year’s #MigraineAndHeadacheAwarenessMonth . 💜❤️
#MigraineAndHeadacheAwarenessMonth #MHAM #SpontaneousIntracranialHypotension #CSFLeaker #BrainSag #HeadPain #Dizziness #Vertigo
Celebrating your 12th wedding anniversary when you have a #spinalcsfleak means going out of town to lay flat in a different bed for a few days! 💜 #csfleak #csfleaker #csfleakawareness #sih
(4) However, I am hopeful that I will continue to #heal and begin to participate in life again.
Your continued #ThoughtsAndPrayers are appreciated. 🙏🏻
#ChronicPain #ChronicIllness #Disability #SpontaneousIntracranialHypotension #CSFLeaker #BrainSag #HeadPain #Dizziness
#BedRest Log: Day 584
We left this morning for LA. In just 5 short days, I’ll get my 8th #BloodPatch, my 2nd at Cedars-Sinai.
💜 Your thoughts & prayers are appreciated. 💜
#SIH #CSFLeaker #BrainSag #HeadPain #Dizziness #Vertigo #VisionChanges #Fainting #Seizures (1/2)
😅 #BedRest Log: Day 525 - That feeling you have when you finally get a #diagoisis after being told for years that it was "all in your head"/ #Psychosomatic.
🎨: The Salt Packet
*Hahaha! Couldn’t resist sharing! 😂 (1/2)
#SpontaneousIntracranialHypotension #CSFLeaker
On August 6th, 2020, my whole world was turned upside down. On August 7th, I hear the words “CSF leak”. On September 8th, October 8th, November 19th, December 31st, February 25th, & June 23rd, my local doctors attempted to do a blood/fibrin patch to help me.
(1/3)
#CSFLeaker
1/ #BedRestLog :Day 447
When my #CSFLeak began, I thought I would be on #BedRest for a bit, get a #BloodPatch, then life would go back to normal. It didn't. My treatments failed, & my home became my prison. Now, I wonder, if I’ll never escape.
#CSFLeaker
🎨: TheChronicallyHonest
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