NINE YEARS WITH A SPINAL CSF LEAK

[@bradfranklin2191]

Always good to hear updates from you, Becky! You are an incredibly informative and inspiring person.

[@beckyhillblog]

Thank you so much for your kind words!

[@m2anjne]

Thank you for sharing your new video. Love hearing about how you are doing now. I learn so much each and every video - gives me a lot of inspiration and helps so much!

[@beckyhillblog]

Thank you for your kind words!

[@susanmathews8927]

Thank you once again for such an informative video and every single point I'll agree with and now living with a CSF leak for 23 years along with other Neurological diseases. I fought against the symptoms and wasted years until I learnt to accept that the new normal for me really wasn't going to change. Since my acceptance, and learning to take each moment as it comes and the multiple variations in symptoms was a game change for me and I cope with the suffering levels of pain with meditation rather than medication, except during a flare up when I really need the medication to get through. We are so similar it's almost scary but thank you once again. ❤

[@beckyhillblog]

‘Acceptance’ is such an important part of discovering a new life worth living! Constantly trying to fight against it just burns us out and leaves us in perpetual discontentment and often despair too. It’s only in acceptance that we can learn to be thankful for what we still do have. But it is certainly a very tough road and acceptance takes a long time. Thank you for taking the time to comment and I am sorry you have to suffer from this too.

[@LuciaCusano]

Thank you for sharing your experience

[@Serenity7250]

An interesting thing I read recently was about how our pupils are controlled by the autonomic nervous system. So the same as a leak can give you POTS it can also mess with your vision as the pupils dont react and open/close in response to changes in light like they should. My vision is very bad in low light and like you screens and lights cause lots of issues. All from the leak messing with our pupils reaction time.

[@beckyhillblog]

That’s very interesting! Thanks for sharing.

[@hanieletsantos3687]

I remember you. I hope your doing better Are you done with your surgery?goodluck

[@beckyhillblog]

@@hanieletsantos3687 I have never had surgery - these days the risks are considered too high due to my arachnoiditis / mild AA diagnosis. So I still have both a leak & arachnoiditis.

[@Lizlkotz]

Thank you This was very helpful to me. I also have a complicated leak situation/csf dynamics.

[@beckyhillblog]

Thank you for your encouragement. I am so sorry you are suffering too

[@dackjanielz]

Thanks for the video Becky. It's interesting and useful to hear your progress and how your symptoms are now. I'm still largely undiagnosed but have been living with what I suspect is CRPS and a csf leak, along with chronic cauda equina inflammation and sciatica. 6+ years for me and my leak symptoms are very similar to yours. Less postural, more of an all the time headache that may get worse if I push too far. Lots of fuzzy head, can't think or concentrate much of the time. My mood can change quite suddenly, I might be quite happy in the morning, but can quickly start feeling low and depressed. I think a drop in csf pressure may have something to do with this. You ever noticed anything similar yourself?

[@beckyhillblog]

Thank you for taking the time to comment. I think my mood is somewhat affected by my symptoms - as my pain/ detachment and pressure gets worse - for any number of reasons ‘coping’ in general gets harder. I don’t necessarily notice a drop as the day goes on - only that drop in energy and tolerance for pain as I get more tired. But tbh I totally think ICP dynamics can affect general mood etc. I also think the LDN (low dose naltrexone) I take (4.5ml a day) can help stabilise mood a bit because it can help with endorphins. As well as helping the inflammation and maybe the pain a little.

[@paco3447]

Lower thoracic here (CSF Venous fistula). Almost nine years also since my onset.

[@beckyhillblog]

It’s a tough journey right. Sorry you are suffering too! 😔

[@ronashford6764]

Thank you for sharing your experience, I feel frustrated and grieve for my old self

[@beckyhillblog]

It is definitely frustrating & there is a lot of grief to work though. I hope you find the best way forward for you.

[@rosetiger7268]

I have the same troubles traveling:/

[@rosetiger7268]

My comment about yt deleting my comments really disappeared too? I was going to add to the now deleted comment perhaps it was a glitch i was causing but. YT really is deleting my any mention of pain being caused by a doctors mistake.

[@lisalailey768]

Really interesting video and so helpful to hear your experience with this horrible condition, I had a spinal leak for 6-7 years after surgery, sealed for 9 years then after a car accident Ive been releaking for 2 years and ongoing, I have been able to reduce my symptoms by avoiding triggers, bending, lifting, also car journeys are a major trigger so I no longer go anywhere in a vehicle. I can now sit up most of the day but have to be resting for the most part, I value this upright time and it enables me to draw, which has become my survival mechanism. The cost of reducing my symptoms is that I dont go anywhere and cannot do most things which I used to, I have no social life and find myself in an invisible prison, feeling so isolated has been the hardest. I have not been able to work and like you I have to manage my symptoms and everyday is a challenge, something like a sneeze can set me back. The most simplistic of tasks for a normal person is impossible for me. I miss going into shops, Going to the beach, just to go somewhere different, even going to the dentist is impossible as it involves a car journey, I am awaiting mri to get diagnosis as last imaging was from first leak, I am hoping to arrange this locally as even with stretcher transport I couldn't tolerate the journey to London and had to turn back after 20minutes, If I trigger my symptoms I will end up bedbound again and for me I just cannot face living like that again so I do everything to avoid making me worse. I am very reluctant on having any invasive treatments as I had 2 blood patches and radon cisternogram many years ago with first leak and I don't want to take the risks with complications also my anxiety threshold is off the charts now and I really couldn't handle invasive treatments. I also have a large venous malformation around my spine which makes any surgery very complicated. I am trying to live with this condition and it has tested me to my limits, I think the hardest part is the feeling there is no one, no medical person who can help me. It can be terrifying especially when you’re in so much pain…but like you I am finding a kind of acceptance, and trying to live in the moment. Thank you again for this video I can relate to so much of it.

[@beckyhillblog]

Gosh I am so sorry to hear about your leak - releak and all your current restrictions and symptoms… it really is so very very hard. I really do try to get a balance with acceptance and perspective… but I can never deny how immensely difficult and painful it is to live like this in every way. I really do pray you have wisdom to know how to move forward in the best and right way for you… those decisions are so hard as well and doctors cannot always help us in making them as effectively as we would hope due to all the things they also don’t yet know and understand about these conditions and treating them. Thank you again for taking the time to share your story - it helps me and others every time we know we are not alone in our many wrestlings. With love and empathy xx.

[@KristinaMarie463]

How did you finally find a physician to treat you for a possible CSF. I have experiencing all the classic symptoms since 2017-2018 sometime after my cervical spine surgery. I have had three lumbar spine surgeries and the one cervical and honestly since 2018 I began having the headaches first than the other symptoms started causing doctors in all other specialties diagnosing each symptom separately but no one expects a CSF I don’t know how to explain to my doctors to where I am taken seriously. I even have spinal fluid sitting in my lumbar region since 2018 but that hasn’t warranted any concerns from my doctor.

[@beckyhillblog]

I found my CSF leak specialist consultant (8 years ago) through the advice & recommendations of other CSF leakers. There are U.K. & USA CSF leak charities that have lists of doctors and there are Facebook support groups which also have info and where people can ask questions. The key to diagnosis is seeing an experienced doctor.

[@KristinaMarie463]

@@beckyhillblog Thank you.

[@Girlwithfusedskull]

Craniocervical instability

[@kevinsomers2541]

Becky, I am praying for you as I am in a similar situation. I feel from a ladder in 2019 and have never been the same. I also have had a tumor behind mybright eye as well as a major fall from a Tru k and struck my head. I have also been treated for a possible CsF leak without. improvement. I have 12 bulging disc's, 6 spurs in my Dura, and a nerve root diverticulum. I had a DSM and CT Myelogram done, and it was like throwing gasoline on a fire. I a. Completely disabled. I have 24/7 headaxhes, and I call them suicide headaches, as there is no escape. I have severe neurological issues, parkinsonism, dystonia, and vision loss. My neck, back, feet hurt relentlessly. I have pins and needles in my extremities. Every muscle hurts so bad I can barely move. I have been unable to find a doctor who knows anything about arachnidosis. I live in Arkansas, and the healthcare system here is very poor. I have tried a shirt duration steroid trial, but it did nothing. I am scheduled for a full brain and spine MRI in 3 weeks, but I am unable to have dye. I was curious if that will hinder diagnoaing arachnidosis ? What doctor finally diagnosed you? I am trying to get into Mayo, as my doctors still feel I have a fistula or leak, but I am scared to do anything, as tye DSM ruined my life.

[@beckyhillblog]

I am so sorry to hear about your suffering and struggle. It makes life unbearable at times especially when investigations & invasive scans make it all worse. I really hope you do get answers too. I am under two neurology teams in two different U.K. NHS hospitals. Between the two I was diagnosed with a leak and arachnoiditis even though my scans were read as ‘normal’ for 4-5 years. Since then the leak has been seen by one hospital and the arachnoiditis by the other. But both are very subtle so it takes experienced radiologists carefully reviewing scans to see it. Unless your case is typically severe and happens to be more obvious. So it’s very difficult. If the steroid trial was very low doses and you were in a flare up of symptoms anyway - then they may not have much effect. My last arachnoiditis flare I took 40mg prednisolone for 10 days prior to IV and it only ‘took the edge off’ - it couldn’t get on top of it. But saying that - arachnoiditis can be very difficult to diagnose due to the cross over of symptoms with other conditions. Especially other spinal issues. However if the disc issues can cause inflammation then that can also be a precursor. So it’s definitely something to consider. Although finding a doctor who understands can be almost impossible. Whatever country you are in. I hope you get more answers and help soon.

[@kevinsomers2541]

Thank you for your response, and I pray for a miracle for you. I know, because of my own situation, just how much pain you are in. I also know that family and friends can be the very people who do not understand just how sick you really are. I am in the US, and it is almost impossible to find anyone who knows how to diagnose these issues. There are many days that I truly don't know how much longer I can stand this kind of pain. I am on no meds, as they don't work. Fentenol barely touches it, so there isn't much left. Thanks for your prayers, and I will also be thinking of you.❤

[@Nicholasblue9889]

I’m suffering and it’s mind bending stuff .I have cci and also at times clear leak symptoms but not been found yet . I been demented now since 2011 but had periods when totally normal . With me it’s cci as underlying cause . I’m wary of blood patches and c t mylogram because if the terrible conditions it can cause .

[@beckyhillblog]

@@Nicholasblue9889 I am so sorry that you are suffering too. It’s so difficult when things come and go and we don’t have all the answers/

[@Nicholasblue9889]

@@beckyhillblog I’m going to dr centeno for 2nd picl . I believe cranio cervical junction is underlying cause of your condition

[@rosetiger7268]

I may have already asked this but I'm not sure. I was wondering if noises bother you? I live on a busy street corner so loud vehicles cause constant severe back pain/spasms. A car with bass sat for 30 seconds outside my home an hour ago and the pain is still very intense. I can get 8-12+ hours of pain/spasms from one loud noise.

[@beckyhillblog]

Yes loud noises are really hard for me as I mention in the video. (phonophobia) I struggle to tolerate it for long and I wear ear buds/ ear plugs if in noisy places.

[@rosetiger7268]

@@beckyhillblog i was in a flare and its hard to concentrate ill have to rewatch. I just came across your blog about how loud noise bothers you:/

[@paulaguinane7146]

Has taken me a few attempts to watch the video start to finish as your symptoms and spinal issues are so similar to mine 😢 I’m in Northern Ireland where there is no specialist treatments so I’m under NHNN Can I ask who has helped with your diagnosis and treatments?

[@beckyhillblog]

I am so sorry to hear that you are struggling too. I am under two NHS neurology teams in the midlands. One is my local hospital and the other a CSF leak specialist neurologist based in the Midlands. They both ended up helping with my arachnoiditis by working together 5 years into my CSF leak diagnosis. But this happened mainly due to me being under their care for a number of years prior to the possibility of me having it being brought to their attention during one of my worst relapses resulting in a two week stay in hospital in July 2020. So I was very well known to both teams before that diagnosis. That’s when they tried the steroids and ultimately discovered signs of arachnoiditis evident on my lumbar MRI. The NHNN in London also has quite a lot of experience of spinal CSF leaks so I hope you find the help and support you need.

[@paulaguinane7146]

Thanks so much for the reply and for putting your journey out there for others to find. You’ve helped me put the jigsaw pieces together with the myriad of symptoms I have been experiencing and hopefully I can articulate more accurately what I’m experiencing so I can get the medical treatments needed to help give me a better quality of life I’ll continue to follow your journey and appreciate your response as I’m sure you have many who reach out, wishing you well 🙂

[@iamtherealdlc]

Did you had sore joints around the shoulders during this time of having CSF Leak in your spine?

[@beckyhillblog]

@@iamtherealdlc I do sometimes get stiff and sore shoulders. Sometimes the pressure changes can seem to cause this. Other times the lying down a lot on my side can make it worse too.

[@iamtherealdlc]

@beckyhillblog Have you've gotten CSF Leak resolved?

[@SacredOwl]

It has been awhile, do you still have adheasive aracanoiditis? Yiu have these bad pain flare-ups? I have it and found a way to stop the pain flare-up in less than 5 min. It works for me and I have shared with others and it works for others the same. Let me know and I will freely share with you. It is a bit of time explaining, so I dont mind if someone os intrested. Going on ten years and it still works.

[@rosetiger7268]

Does England provide disability funds to people? I hope someday the USA will help me. I cant even lift my arms for more than 20 seconds without disabilitating pain to even make a phone call. Oh.. you are lucky it doesn't seem like financial survival is an issue for you

[@beckyhillblog]

Yes I am very fortunate in that way because my husband earns enough to solely support our family. The U.K. does provide disability living allowances. But I haven’t tried to access them myself as we are ok & I know it’s very hard to get them. And because I am currently so functional some people might argue I could do some kind of paid work. But what I don’t really know? It would be extremely hard to hold down the vast majority of jobs. I do also currently do some work for my husbands business. But my heart really does go out to people who are in financial hardship due to their disability. It must make everything so much harder & even more painful. 😥

[@rosetiger7268]

@@beckyhillblog im married too its been a tough few months financially but I guess I'm getting by