MY SPINAL CSF LEAK & ARACHNOIDITIS STORY: 6 years of enduring pain

Рет қаралды 7,993

3 жыл бұрын

An introduction to my medical history and spinal CSF leak and arachnoiditis diagnosis. These illnesses were triggered by a ladder fall in January 2015 0:18 as well as probable biological disposition. I was originally diagnosed with a concussion/ post-concussion syndrome 0:30. This video also includes footage and photos from my February 2021 acute arachnoiditis flare 2:38 which was reversed by a 5 day treatment with IV Steroid Methylprednisolone 500mg a day bag 4:29. (I always also take 20mg Omeprazole to protect my stomach from steroids & anti-inflammatories.)
I now have two written appointment follow-up letters from two UK Midlands NHS Senior Neurologists from two separate hospitals (one more local and one where my spinal CSF leak specialist team are) confirming the radiologically supported diagnosis of arachnoiditis.
Please note: Suggestive features of arachnoiditis can now be seen on my earliest MRI's in March 2015 1:46 prior to me having ANY spinal procedures. It may well have been caused by one of my bone spurs 1:57 in my thoracic spinal canal piercing the dura from the fall and did not result directly from medical procedures. Although they could flare it over time. I do also have Tarlov cyst/s in my sacral spine and many meningeal diverticula in my thoracic and cervical spine. (This video talks more about other radiological finding • DAY 12 OF STEROID & AN... ).
My last spinal procedure was in September 2017 CT Myelogram (caused a seizure as I talk about in my day 1 steroid taper video: • DAY 1 OF STEROID & ANT... ) then an epidural blood patch (no.4) a week later.
Please also note: It is very risky to do diagnostic lumbar punctures on patients with suspected spinal CSF leaks or arachnoiditis. It can make them worse & they may have a connective tissue disorder which means they struggle to heal. Also only 40% of people with an active leak will show low pressure (1-6) anyway. SEE: journals.lww.com/neurotodayon... spinalcsfleak.org/10-myths-mi... & spinalcsfleak.org/about-spina...
To view my whole video diary please see my KZfaq channel: / @beckyhillblog
To view my year update (6 months after this flare, one year after diagnosis) then see this video: • MY ARACHNOIDITIS UPDAT...
Or flare video playlist: • DAY 2 ARACHNOIDITIS & ...
Or IV Steroid treatment and recovery playlist: • DAY 1 IV STEROID TREAT...
Or oral steroid & anti-inflammatory taper recovery playlist: • DAY 1 OF STEROID & ANT...
Read more about my story at: 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: www.csfleak.info/
US CSF LEAK CHARITY: spinalcsfleak.org/
SPINAL CSF LEAKS: Clinical Presentation, Investigation Findings, and Treatment Outcomes of Spontaneous Intracranial Hypotension Syndrome (NHNN authors): jamanetwork.com/journals/jama...
ARACHNOIDITIS: ‘Arachnoiditis - Taming the Most Painful Pain’ Dr Forest Tennant video
• Arachnoiditis-Taming t...
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) 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 www.sciencedirect.com/science... And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania www.karger.com/Article/FullTe...

Пікірлер: 79

@markvogel140 Жыл бұрын

Hang in there, I’ve had it since 2000. A good day now is what I would call terrible before my injury. Take care , and thanks for the updates I’ve seen

@seanburke5658 3 жыл бұрын

What a courageous video and thank you for sharing it Becky. We will be praying for you all the more. So good to see you looking better at the end of the video.

@beckyhillblog 3 жыл бұрын

Thank you so much for your comment and for watching my video. It's always so enlightening to get to know someone you have met online more via video or in your case via your video testimony and new book. Sending love and blessings to the family over the seas in NZ!

@cathy4194 3 жыл бұрын

I am so happy you are getting some relief. Sending prayers that you don’t have another relapse. 🙏❤️🙏

@beckyhillblog 3 жыл бұрын

Thank you so much Cathy. I have kind of accepted that relapses are simply a part of my illness now. But the relief is that we now know how to treat them much more quickly and effectively.

@larisakucheryava2436 3 жыл бұрын

Becky I’m praying for You🙏🏻🙏🏻🙏🏻

@beckyhillblog 3 жыл бұрын

Thank you so much!

@sashabagdasarow497 2 жыл бұрын

Feels like you have a good support over there, people caring for you :)

@beckyhillblog 2 жыл бұрын

Yes - thankfully I have very good support both medically and pastorally/ family/ friends... but it has been a learning journey for us all and not without it's many challenges over nearly 7 years in trying to understand what has happened to me. But that is also why I try and share my case so publicly in the hope that it makes it easier for others to get help and understanding too.

@caffhan 3 жыл бұрын

Praise God. Wonderful to see what a difference the steroid makes. I just wish we all had a treatment plan UK wide.

@beckyhillblog 3 жыл бұрын

That's why I am doing to videos to raise awareness of that. I hope more people can access treatment soon!

@KellyAnn1997 2 жыл бұрын

Im glad you found relief from treatment. Your symptoms sound so much like MS it’s very interesting how the brain and spine are affected by lesions or leaks in very similar ways. Praying your symptoms will be gone forever soon.

@beckyhillblog 2 жыл бұрын

Thank you Kelly, and yes you are right that there are many cross overs with other neuro-inflammatory conditions like MS in both symptoms and treatment. That is probably mainly linked to the arachnoiditis - but the leak certainly plays a massive part in it all too. We can always hope and pray our symptoms will 'go forever' soon ... that would truly be a miracle. But I have now accepted that this probably isn't going away and will need probably life long management. However, I am just very very thankful we have learnt how to treat it and hopefully halt or delay any further progression for now at least.

@eimjabegg5943 23 күн бұрын

And I thought my CSF headaches and problems were bad enough, but they pale in significance to yours Becky. Thank you so much for sharing your journey. 😘 Onward and upward from here!

@beckyhillblog 23 күн бұрын

@@eimjabegg5943 bless you! It’s all tough - anyone experiencing anything to do with CSF pressure/ leaks or arachnoiditis/ AA really don’t have it easy. It’s all extremely hard in so many ways… although saying that … there are always others who are somewhat better and others who are somewhat worse than us. But generally we are all unique - each with our own unique challenges & circumstances! So we cannot really compare. I pray you too will see better days!

@eimjabegg5943 22 күн бұрын

@@beckyhillblog thank you for your reply. I'm happy to report my CSF leak has been sealed with a titanium clip and so far, life is good - no headaches and improved eyesight, hearing, etc. I've still got a long way to go with regaining strength and stamina (I spent 2.5 years in bed) and progress is slow, but I don't live in bed and things are getting back to a new kind of normal. ♥ Lynette

@beckyhillblog 22 күн бұрын

@@eimjabegg5943 that is wonderful news. I pray you will go from strength to strength and that the fix holds long term. 😌

@ImGoodThankYou 3 жыл бұрын

Thank you so much 💓 💗

@splovelace 5 ай бұрын

I’m so sorry to hear your story. My heart hurts for you because I understand exactly what you’re going through. I was diagnosed with arachnoiditis in 2014 after years of suffering. I’m currently experiencing a large CSF in my lumbar spine and it’s very close to rupturing. I’m almost certain that it will require surgery. My fear is that the surgery may worsen the arachnoiditis which is located in the same area as my CSF leak. I hope you are doing better these days. Dealing with this disease and the leaks can definitely take a toll on you.

@beckyhillblog 5 ай бұрын

Thank you for your comment. I am so sorry to hear about your suffering and the dillemas in how to proceed medically. I discuss some of the dilemma in my most recent video kzfaq.info/get/bejne/q5ujibOB15e2nWg.html titled Nine Years with a Spinal CSF leak. Although my actual leak seems to be higher up probably in my thoracic spine. But the dilemma’s about further medical spinal interventions are very real. I hope you find the right way forward for you.

@splovelace 5 ай бұрын

@@beckyhillblog thank you.

@ShayVidz 5 ай бұрын

Oh my goodness ❤ my heart 😢

@paco3447 3 жыл бұрын

Wow. What a difference. I have both unresolved CSF leak for years and chronic inguinal pain due hernia mesh rejection and removal surgery. I think that steroid injection could improve inguinal neuropathy also, definitely not the CSF leak headache due its different nature, but one pain source better than two. The main problem here in Spain is that is close to impossible to get a corticosteroids prescription from a Dr. They are scared beyond paroxism to such substance and is off label.

@beckyhillblog 3 жыл бұрын

Thank you for your message Paco. In the end I think the main reason that the IV Steroids worked for me was due to the acute arachnoiditis inflammation in my spinal canal. The steroids help to deal with that inflammation which in turn improves my spinal csf leak symptoms. Although I do not think the steroids would work for more normal spinal csf leak patients like they did for me. It actually seems to be the arachnoiditis that is the driving force of some of my most debilitating symptoms. So in treating that inflammation - things quite dramatically improve for me. But sadly I am not sure that this would be the case for others too.

@bradfranklin2191 3 жыл бұрын

I get what I need overseas. It's not that hard for non-narcotics. Yeah, I'm risking my life but that's my choice. So far so good...

@derkarhu5079 Жыл бұрын

I'm currently in hospital, and they don't seem to be up to date on CSF leak...added to that the total of 11-13 meds, history of a possibly tiny cranial leak (i had a fall, with concussion, a few years afo), with negative MRI findings, known c-spine problems, and they wanted to do a lumbar puncture just to measure pressure, but research in Bern and Freiburg show that pressure is not a strongly-correlated indicator. I had an examination about 12 weeks ago, during which my neck was hypertended...some minutes later I had onset of vertigo, two days later, terrible headaches for hree days, then, after those headaches 'cleared', I noticed that headaches and dizziness started within just over an hour out of bed...over the following weeks, the time from flat to headache has continually decreased, and concentration is getting more difficult. Now, I need to find a way to get to Freiburg, or Bern... Your story just kills me!!

@beckyhillblog Жыл бұрын

I am so sorry to hear about your suffering. CSF leaks are really awful and the lack of knowledge by most doctors makes it so much harder. You are right that LPs to measure pressure are often not a good indicator and can lead to more problems. So it’s best to avoid them if at all possible. I hope you do find more expert help soon. Bern/ Freiburg do have a good reputation and experience. That is a good first step.

@marie-linehache4908 2 жыл бұрын

Hi Becky. I'm a french canadian. I found your video because I'm seaching for answers. I had severe sf loss post lumbar fusion. I had to be operated 3 times. I know that pain. I was twitching and spasming and back arching post surgery. My body was so painfull, I can't even find the proper words to descibe it. I just call it the Exorcist episode. I thaught I was going to die. I got patched up the next evening but now suffer from PTSD. I'm now on longterm disability because of these traumatic experiences but I want to thank you from the bottom of my heart for sharing your story. I used to work as a dental hygienist. After 20 years, this happened. I do want to share this info to the health professionals by offering a continuing education presentation eventually. This is so underdiagnosed here in the Maritimes. From this, I'm waiting for Marfan syndrom diagnosis. I suffered severe migraines that I now realize were csf leaks. Thay started at age 10. I'm 44. Education is key. Thank you so much.

@beckyhillblog 2 жыл бұрын

Marie, thank you so much for taking the time to comment and tell some of your own story. I am so sorry you had to go through that - of course that is very very traumatic. I have had a lot of trauma from my medical journey and the fact my conditions were not always well understood. A couple of years back I did some one-to-one counselling/ therapy which was really good in helping me process my journey better. And since the new diagnosis of Arachnoiditis - it has helped my mental health so much in validating and understanding my journey better. Although to be honest, when your conditions are rare and misunderstood by the medical profession and general public then it still brings a whole lot of 'traumatic baggage' and fears of not being believed with it. So I really can understand how much these things effect your daily life. I also hope that you get more answers and support to help you rehabilitate as much as you can. You are right that understanding and education is key. I have some possible undiagnosed Marfans in my family (there are various key features which point to it's influence) but I think it's more subtle/ mild - but might explain more of some of my own pre-disposition to both these conditions.

@albuttchi595 2 жыл бұрын

And here it starts,YUP.

@17theearl 7 ай бұрын

Hey Becky, On your blog you stated you were taking iron tablets for your low ferritin, does your docs know the reason for your low ferritin? Im having similar symptoms that you’ve experienced but docs are all stomped. Specifically, migraines for years, now tinnitus, body aches, pinpricks, low ferritin (4), dizziness, and most recently pressure in the head, migraines and dizziness when i play basketball. This is new for me which worries me. Physical activity now gives me a migraine and dizziness and my head gets really heavy to carry. I do also know that my CT showed nerve clumps. Etc. Thanks for listening! Hope ur well!

@beckyhillblog 7 ай бұрын

I think the low ferritin was just a temporary thing. Not sure the cause. The iron tablets seemed to sort it. I am so sorry to hear of your struggles. It really is difficult to have all those symptoms. I hope you get more answers and support moving forward.

@Europaer-vereinigt-Euch 3 жыл бұрын

@beckyhill I also have a csf leak from an LP last year. I had 4 EBP and the last one had caused aseptic menigitis! I also got rashes on my face, my legs and hands burned. all of this got better over time (I still have a leak, with tinnitus, head pressure, nausea pots etc). the doctors gave me prednisolone 50mg pills a day last week and hoped it would get better, but strangely, it made everything much worse again! i canceled it 4 days ago and things are getting better. I'm afraid of a new patch, but I still have the leak 😭. Now the CSF leak experts are considering a micro operation at the point where the LP was to find and close the leak, but there is also the risk of archanoid disease ... i am 32 and for 5 months my life has not made any sense

@beckyhillblog 3 жыл бұрын

I am so sorry to hear about your awful time with a leak and trying to get treatment. Spinal CSF leaks are IMMENSLEY hard to deal with. It's even more tragic when they are caused by medical procedures. I am also sorry the steroids did not help you. Maybe it's due to the different onset trigger. Steroids can flare any type of infection - even though they can help inflammation like I have from the arachnoiditis. Also we are all different and can react in different ways. I am sorry to hear that you face possible surgery. That must be scary and yes any procedure and operation to the spine runs the risk of arachnoiditis. Mine was caused originally by trauma and biological disposition. But my spinal procedures could flare things. It's just impossible to say whether people might get arachnoiditis. What is important is that doctors know how to treat it if it is a risk. I really hope that your doctors find a way forward so that you can find more full healing and get your life more 'back on track' ... but in the meantime I pray that you will find a way to endure the struggle and hold onto hope that you can find a way through. Take care and hang in there!

@anythinggoes5574 3 жыл бұрын

What's LP?

@yusanda741 2 жыл бұрын

Did you get check for gadolinium? Gadolinium is the IV contrast that doctors used fir mri , and it is a heavy metal and a poison .

@hanieletsantos3687 7 ай бұрын

What are the symptoms of aseptic meningitis

@honerdcouster8723 3 жыл бұрын

For full body contractions desicreated liver.

@theresageiger584 3 жыл бұрын

How do you get clay out of the gut

@Shri_Harivansh22 2 жыл бұрын

same this problem to me...i will spinal surgery and surgery after csf leak in my spinal ...but doctors some stiches in my spinal with thread and my csf stop ...

@beckyhillblog 2 жыл бұрын

I am glad they managed to stop it Priya - it can be a bit easier to fix when they know the exact location of the leak - like if it’s from a medical procedure or surgical error. It’s a lot harder when they don’t know exactly where the leak is. You then have to have various specialist scans first usually with contrast into your spinal fluid… which has its own risks & still doesn’t always show the leak. I wish you all the best moving forward.

@sandraolan8165 2 жыл бұрын

Hi Becky do you still have symptoms after the infusion?

@beckyhillblog 2 жыл бұрын

My flare symptoms improve radically from the IV steroids - however it doesn't 'fix me' as I have had this illness a very long time. So I have long term damage to my nervous system. Also arachnoiditis/ AA is often a relapsing/ remitting illness once chronic. However my treatment has very much improved all my symptoms when used in addition to my ongoing medication and walking protocol. Here is my update 6 months after this video was made: kzfaq.info/get/bejne/h8dihdqe3L-4dKM.html

@andrewlovato4785 2 жыл бұрын

Hello, my name is Andrew. I'm a 19 year old college student. I have been battling daily headaches and muscle tension in my upper back/shoulders/traps/neck for over a year. I'm doing atlas orthogonal treatment right now. I have gotten maybe 4 adjustments and I haven't gotten any relief. Also I'm looking into the CSF Leak Treatment. If anyone has any ideas or input please let me know. Thank you so much.

@beckyhillblog 2 жыл бұрын

Hi Andrew, so sorry to hear about your suffering. If you think you might have a spinal csf leak then I would be very careful with chiropractic manipulations because they have been known to give people spinal csf leaks or make them worse. My best advice for finding more out about leaks would be via the US & UK charities that I have links to in this video info. Do your own research to see if it could relate to your symptoms and then speak to a knowledgeable doctor. I hope you get more answers soon.

@17theearl 7 ай бұрын

Hey bud, i am having similar issues. Im 32. But lately I have been having severe headaches with exertion, dizziness, poor balance and tinnitus. I had a head MRI come back but it was fine. But our stories sound similar so my suggestion would be to start there? If you find anything answers please share any information with us. Good luck buddy.

@erikvalencia5430 2 жыл бұрын

Hi, how often do you take the iv steroids? My wife has Arachnoiditis and she used 1000 mg of Methylprednisolone for a week but if she leave the ivs she has pain. We don’t have doctor here in USA, so we are doing alone the ivs.

@beckyhillblog 2 жыл бұрын

I have only needed the IV steroids twice since my admission to hospital & diagnosis in July 2020. I only have them in complete relapses. So it was July 2020 & January 2021 and not since. You should only have IVs twice or max 3 times a year and only for the worst flares. When oral steroids are not strong enough. A week at 1000mg is a lot. I then did an oral taper from 20mg, then 15, then 10, then 7.5, then 5 before going back to 5mg every other day. You need to move to every other day as soon as possible to protect adrenal gland. Basically the steroids only tend to work on mild to moderate cases and don’t work for everyone. Mine reversed flare but I still manage daily pain. I find lots of walking and gentle stretching helps my body but only once using anti-inflammatory. So it takes time for flare to reduce after treatment - although my response was always radical. But I had to combine it with lots of walking to get best results. But not everyone can do that. Hope you find some more help soon.

@beckyhillblog 2 жыл бұрын

My blog has more information about ongoing management, but we are all very unique cases. We have to be very careful with steroids due to adrenal gland and osteoporosis and other big risks. So worth researching all that too to get right balance. beckyhillblog.com/2021/08/21/arachnoiditis-update-one-year-since-diagnosis

@Bettinasisrg 2 жыл бұрын

Did or do you get any relief from pain medication? Or are they denying you that? In America it's criminal what they've done to people.

@beckyhillblog 2 жыл бұрын

I have been on pregabalin in the past/ when I flare. But I always come off it when I stabilise. I do not tolerate opiates like morphine so they are no help to me anyway - just make me feel more ill. Even though I have been given or offered them in the past. But really I find the steroids/ anti-inflammatories and walking the best pain relief for me. Sadly though my treatments are very new - people really struggle to get help in the U.K. too in general. That’s one of the reasons I am sharing my story so publicly to raise more awareness.

@TheBadiiye 2 жыл бұрын

i think i have this headache in the temple. back lobes and thick white snot coming out i think its just an infection

@beckyhillblog 2 жыл бұрын

I am so sorry to hear about your suffering. Yes unfortunately there are so many 'headache' variables, it can be really hard to know what is causing it. In my case I have had low pressure (ICP) headaches, high (ICP) headaches, inflammatory headaches then probably normal tension/ stress and occasional migrainous headaches. The only way to differentiate sometimes is to do your research and even then it can be hard as people can feel and experience them in different ways. If your sinuses/ nose are very blocked then maybe it is more a virus or infection? But it can be hard to say! Even neurologists can struggle to know what headache is what sometimes.

@TheBadiiye 2 жыл бұрын

i think its covid 19 cause i just had covid and im really congested in my mouth

@beckyhillblog 2 жыл бұрын

@@TheBadiiye well let’s hope it improves quickly!

@hansolo3504 4 ай бұрын

If you had 500mg of methylprednisolone that would really affect your kidneys. How are your kidneys doing? Are you okay?

@beckyhillblog 4 ай бұрын

I am perfectly fine (as much as we can tell) 3.5 years on from my initial treatment regarding side effects of steroids. It would be a problem on many levels if you had it regularly. Recommendation for neuro inflammatory patients like MS patients that often access similar treatment is no more than 2-3 times a year at that dose… 500mg x5 or 1000mg x3 … keeping to that kind of levels should minimise the risks across various levels enough to well balance the risk/ gain ratio in favour of the gains. At the moment I am averaging using them once a year. The most I have had is twice in the first year of treatment. So of course there are risks to adrenal gland, bones, kidneys etc but if you are managed by a good team of doctors they know how to balance the risks. There are many inflammatory conditions which need similar steroid treatment - so on that level it’s not a ‘new treatment’ … more ‘new for arachnoiditis’

@hansolo3504 4 ай бұрын

@@beckyhillblog Thank you so much for your reply. Are you still on LDN? Just curious if that still works for you.

@beckyhillblog 4 ай бұрын

@@hansolo3504 yes I still use LDN

@christinesalome6677 2 жыл бұрын

But you also was leavking wehn you get the steroid? How they fix the leack ?

@beckyhillblog 2 жыл бұрын

Hi Christine, I am sorry to hear about your suffering. The complexity of my case is the arachnoiditis - that means I have neuro-inflammation (inflammation in my spinal canal). The steroids help the arachnoiditis which subsequently seems to radically help my leak symptoms too during an acute relapse. But the steroids will probably not really help a normal spinal csf leak patient. They need the leak stopped. My case is different because the arachnoiditis/ mild adhesive arachnoiditis seems to be my main issue. It's that the steroids help. For normal spinal csf leaks they normally need blood patches, glue patches or ultimately surgery to seal their leak. My case is more complicated than that. It's possible that the arachnoiditis effects my csf flow too which makes my leak symptoms worse rather than necessarily a worse or healed leak itself. I don't know if I am still leaking at the moment. See this article for update on that beckyhillblog.com/2021/08/21/arachnoiditis-update-one-year-since-diagnosis/

@christinesalome6677 2 жыл бұрын

@@beckyhillblog Yes but we don’t know if I have sure a leak because they don’t found and I was having blood patches they didn’t help maybe I have also archnotitis i dont know

@christinesalome6677 2 жыл бұрын

@@beckyhillblog Can I ask you how they found the leak and how long it was leaking and you also have to lay down really flat because me I also have to lay down flat without a pillow and now I have POTS also i go crazy 😓 the dont finde it since 9 Months

@beckyhillblog 2 жыл бұрын

@@christinesalome6677 so sorry to hear that. For five years they couldn’t see my leak. I was diagnosed from a low lumbar puncture reading (although it’s risky to do a diagnostic LP on someone with a suspected leak). And from symptoms (I only felt better flat). But in 2019 they finally saw the leak on MRI in my upper spine. Just a small leak. However in my case when the arachnoiditis flares I have to lie completely flat again. But treating with steroids gets me back upright. So probably the arachnoiditis inflammation effects my CSF flow or something like that. If you think you could have arachnoiditis then it’s best to do your research first because the vast majority of doctors either have not heard of it - or know very little about it. So it’s hard to be listened to.

@beckyhillblog 2 жыл бұрын

@@christinesalome6677 leaks are not located in about 50% of cases. It’s not unusual. They are getting better now they understand you can have venous fistulas and arachnoid/ dural blebs etc that will not show on MRI or most CT Myelograms - but many people don’t get them found. Many I know that do had to go to more specialist hospitals with more experience of leaks like I did. But even then it took them years of learning from 100s of cases to see them better on scans.