spinal CSF leak

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spinal CSF leak
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How much can one person take ?

It’s happening again, stiff neck and now the almighty pulsing pain into my brain if I move position.
I feel sick, new doctors will not listen. Still no face to face appointment. How long am I going to have to suffer without help 😔
I have had two epidural (not elective but emergency surgery) Three lumber punctures due to suspected meningitis and I have eds.
feeling very alone right now. My family are lovely and caring but they just don’t get the magnitude of pain. Picture of our latest family member 😊
#CerebrospinalFluidLeak #CSF #SpinalCSFLeak #Migraine #migrainwarrior #Pain #ChronicPain

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Making it Work

Last fall I bought a used scooter. It was a really big step for me accepting my disability. The past two weeks our weather has warmed up and so I’ve been getting a lot of use out of the scooter. It’s been such a freeing thing to be able to say “let’s go for a bike ride!” I might be exhausted but getting onto the scooter and following after my kids is possible and I love it. I still struggle with identity but I will always remind myself that this is a gift I can’t take forgranted. I don’t want to spend my motherhood indoors afraid of trying to go out with my kids because of how much pain and exhaustion it causes. This year I’m ready to get out.

Tell me how you’ve adapted life for parenting with a disability. #ChronicPain #ChronicIllness #RheumatoidArthritis #MarfanSyndrome #TarlovCysts #SpinalCSFLeak #pseudomeningocele

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Chronic Pain

I’ve been awake 1.5 hours - which is about 3 hours earlier than I normally wake up. This week I’ve been waking up in enough pain that it can’t be ignored while I drift back to sleep. I’ve also been falling asleep hours earlier than normal because my exhaustion won’t allow anything else. As I wait for my first rheumatology appointment in 4 weeks I can’t help but wonder if this is my new normal or if this is a slight curve in the road. My chronic illness journey has been more about new normals than slight curves but with every change I still cling to hope that the road will curve back to what I’ve already adjusted my life to.
The pain in my ribs with every breath, the intense perceived burning of my skin on my legs, back and side, the bone aches and joint stiffness, the abdominal aching from the pinched nerves in my spine, the 24/7 headache from low CSF levels - they wreak havoc. My body seems to be exploding with these useless sensations - they aren’t telling me anything new. My body is not in great shape but their constant nagging cannot change that. The unpleasant sensations meant to warn me of danger are only telling me what I already know and what cannot be fixed. It’s a special kind of torture - chronic pain - one that I must learn to accept, acknowledge and learn to ignore. #ChronicPain #RheumatoidArthritis #MarfanSyndrome #TarlovCysts #SpinalCSFLeak

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I have fibro, chostochondritis, & pain from a CSF leak on the brain. I am also obese due to a binge eating disorder. How do I get appropriate

treatment, respect, and support from medical staff and others who do not take my documented diagnosis seriously but blame my weight?

They say that I am making excuses and refuse to help me until I help myself by losing weight. I am working on weight loss but it is extremely slow because of my pain, ptsd, borderline personality disorder, & bipolar. All of which many feel like are excuses.
#Fibromyalgia #BorderlinePersonalityDisorder
#SpinalCSFLeak #Obesity


We’re allowed to be mad

We’re allowed to be mad that our genetics put us here. We’re allowed to be mad that no matter how hard we try, some things are incurable. We’re allowed to be mad that spaces aren’t accessible. We’re allowed to be mad that friends stop thinking of us. We’re allowed to be mad at the ridiculous amount of unsolicited medical advice we get from people daily—as if we’re not doing everything in our power to feel as good as possible already. We’re allowed to be mad that companies think of us as an afterthought or use us for inspo porn. We’re allowed to be mad that our medical system makes us sicker by the stress it causes alone. We’re allowed to be mad that some doctors are in it for the wrong reasons. We’re allowed to be mad that you regularly demand additional emotional labor from us. We’re allowed to be mad that we’re in pain. We’re allowed to be mad when you don’t see us. We’re allowed to be mad that our own governments constantly dehumanize us. We’re allowed to be mad when you refuse to hear us. You hurt us all the time. We’re allowed to be mad. We should be. We’ve begged long enough. And we are not getting on our knees for basic fucking human decency. Include disabled people in your activism. Check in on your disabled friends. #ChronicPain #Painsomnia #SpinalCSFLeak #EhlersDanlosSyndrome #MCAS #POTS #DisabilityRights


How do you feel when doctors doubt how ill you are?

#ChronicIllness #ChronicPain #SpinalCSFLeak #CerebrospinalFluidLeak #RareDisease #neurology #HeadInjury #PostconcussionSyndrome #Headache #Depression #Anxiety #SuicidalThoughts

I fell off a ladder nearly exactly 5 years ago. I was diagnosed with a concussion, then post-concussion syndrome, then after 8 weeks correctly with a spinal CSF leak. I have been unwell since - with ups and downs. Cycling being pretty much bedridden for weeks or months then upright all day following treatment... and then everything in between that.

But never ‘well’ or ‘normal’

My medical journey has been really really tough. The battles of TRYING to explain how ill you feel to doctors and medical professionals are exhausting and brutal on your mental health.

This is a long extract from an article I wrote to try and process some of the trauma of my own medical journey following up from some stuff that came up from counselling to try and work through very complex and traumatic memories and emotions after another physical and mental health crash in the Spring!


I wrote it as an ‘open letter’ to try and explain to doctors that we often feel so vulnerable and exposed it’s like we feel completely ‘naked’ in front of them - when having to see them or go into hospital.

How do you feel when you have to see doctors - especially when they don’t really understand the complexity of your physical or mental health conditions?


Feeling Frustrated #ChronicIllnessEDS #SpinalCSFLeak #PosturalOrthostaticTachycardiaSyndrome

Have been getting super painful headaches at the base of my skull for a long time now, mainly when sitting or standing and getting a throbbing rushing feeling in my head into my neck. The last six weeks they have gotten way worse, and I have been sleeping flat because the pain will start to go away when I do that. pain has been more intense this week. Went to lay down last night and head was thumping hard, then I started getting pains between my shoulder blades. Went to emerg not knowing what the heck has been going on. Nurse sees me and after hearing my symptoms immediately thinks I have a CSF leak, had an IV put in and was really hopeful they had found what was wrong with me. Dr comes in and tells me I have a tension headache, no tests, nothing. has IV taken out and sends me home. I’m feeling super frustrated and don’t know what to think now. What do you all think? I’m waiting to see a dr for my EDS symptoms but that’s 2 yrs away. I don’t know if I should bother getting a second opinion or not? The dr seems pretty convinced it will go away if I get massage. This was also after he found out I was diagnosed with POTS earlier this year. #


Spinal csf leak #SpinalCSFLeak #EhlersDanlosSyndromeAwarenessMonth #EhlersDanlosSyndrome

I just found out that my surgery for my spinal csf leak and tlif for my ruptured disc that was going to be September 10 just got moved up to August 6. I’m so happy but also so nervous! I’ve been so miserable because the headaches have been so awful! Anyone had this done before? Last time my recovery was awful I hope this time is better! They said I might have to stay flat for like 3 days anyone know why??

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