NINE YEARS WITH A SPINAL CSF LEAK

A new video since reaching my nine year anniversary of my spinal csf leak starting from a ladder fall in January 2015. I have also recently had MRI's from October 2023 reported on my a neuroradiologist and my specialist neurologist saying that they can still see my leak in the cervical and upper thoracic spine and it remains unchanged since my last CSF leak protocol MRI's in September 2019. So that has confirmed that I am still leaking. So I wanted to focus this video on my leak rather than my arachnoiditis symptoms. Although as I say in the video - it's often so hard to know which is which.

Link mentioned: Learning to Thrive with a Chronic Illness:    • LEARNING TO THRIVE DESPITE HAVING A C...  

CONTENT SUMMARY (use to skip to parts of interest)
0:00 Intro
2:29 Arachnoiditis flares bring more classic postural csf leak symptoms
2:48 I can be upright most of the day
3:06 Consistent and similar symptoms throughout the day
4:36 Arachnoiditis vs spinal csf leak symptom confusion
5:40 Stopping invasive spinal procedures
11:11 Leak symptoms: Fuzzy/ dizzy/ dreamy equilibrium
11:38 Constant head pressure sensation
11:50 Neck stiffness
12:36 Phonophobia & Photophobia
13:06 Concentration and cognition limitations
13:42 Travel in cars and planes tough
14:50 Hyperreaction to ICP changes
16:43 Can I still work?
19:16 There is still life and hope
20:40 I had 4-5 years of clear scans at start
21:40 Finding your own daily rhythm
23:53 Learning from others whilst understanding our uniqueness
25:50 'A marathon not a sprint.'
27:18 Be careful with getting fixated on getting fixed
28:02 There is a life to live even if you don't get fixed
31:08 What about the future?

Read more about my story at: https://beckyhillblog.com/

Twitter: Beckyhill3

PLEASE SHARE WIDELY IN ANY CONTEXT: This is a FULLY PUBLIC educational video project & can be shared with anyone in any setting or platform with my full permission. My only desire is to raise awareness of these desperately awful conditions & how to treat them.

#Arachnoiditis #Adhesivearachnoiditis #SpinalCsfLeak #CSFleak #PostConcussionSyndrome #TarlovCysts

UK CSF LEAK CHARITY: https://www.csfleak.info/
US CSF LEAK CHARITY: https://spinalcsfleak.org/
SPINAL CSF LEAKS: Clinical Presentation, Investigation Findings, and Treatment Outcomes of Spontaneous Intracranial Hypotension Syndrome (NHNN authors): https://jamanetwork.com/journals/jama...
ARACHNOIDITIS: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video
   • Arachnoiditis—Taming the Most Painful...  ​​
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) https://www.practicalpainmanagement.c...
IV STEROID TREATMENT: A medical paper supporting the use of steroids in treating early stage arachnoiditis and in the prevention of further adhesive arachnoiditis: Immunotherapies in chronic adhesive arachnoiditis – A case series and literature review https://www.sciencedirect.com/science... And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania https://www.karger.com/Article/FullTe...