Tag Archives: Arachnoid inflammation

Arachnoiditis, Spinal CSF Leak

Seven Years Since My Accident: Spinal CSF leak & Arachnoiditis

Leave a comment

“Life can only be understood backwards; but it must be lived forwards.” – Søren Kierkegaard

It’s now over seven years since I got ill.

Seven years… it’s such a long time right?

I never imagined seven years ago the way our lives would be so altered in one day.

In hindsight I don’t see the accident as the only culprit for these life altering diagnosis. Yes, the fall seemed to be the trigger. However, the more I have understood the conditions and my potential biological predispositions. The more I realise that it may well have been an injury waiting to happen. And if not THAT day and that fall…

It would perhaps have been another day, another trigger, that created a similar ‘explosion’ of symptoms, a leak, of an arachnoid inflammatory response.

I do have multiple thoracic micro bone spurs in my spine pressing into my dura (that holds my spinal fluid). As seen on a thoracic CT. So it was probably always going to be a risk that one day one might penetrate the dura. Or if not the bone spurs… maybe a spinal cyst (of which I have many) or some other dural weakness.

So as the quote above says … we DO often understand better backwards. Hindsight is often a great revealer – we often see things with more clarity the further on we go! And that can really help – so long as we don’t get stuck in that past, in the memories we can’t change, in the moments now passed. Instead we must choose to accept what has happened, attempt to reframe it and find the best way forward we can…

Despite it! Despite it all.

So that’s what I – what we – have chosen to do.

To reflect.

To accept.

To grieve.

Then…

Let go.

Move on.

And embrace the life we have!

I have been meaning to write this blog update for a while. Well at least since I made these last two videos for my YouTube channel. The first one I published in January is with my husband Matt and was a reflection on seven years since my original accident (a ladder fall) and trigger for the spinal CSF leak & arachnoiditis. The second video was a slightly longer video documenting how I manage my daily arachnoiditis & CSF flow/ intracranial pressure issues.

To make the videos easier to navigate I have included a breakdown summary in the video info section on YouTube. I will add a record of the video summary’s here. To to be able to skip to different parts you will need to view the video on YouTube directly by clicking on the YouTube link and take a look at the info section below the videos.

SEVEN YEARS SINCE MY ACCIDENT – A Reflection With My Husband

A reflective discussion with my husband Matt Hill about the challenges and positives of the past seven years since my ladder fall and development of a spinal CSF leak and arachnoiditis.

Summary of my accident and diagnosis. 1:00 min

1. What’s been one of the hardest parts of the last seven years? 2:18

2. What has been one of the positives of such a difficult journey? 7:00

3. What advice would you give to other spouses/ partners/ family members in this kind of situation? 9:30

MANAGING MY ARACHNOIDITIS – How I Manage My Daily Symptoms

This video is an update on my arachnoiditis/ mild adhesive arachnoiditis (AA) and how I manage to ongoing daily symptoms. I have not had a major flare in over a year but I do have many ongoing daily symptoms I have to micro-manage throughout the day to get the most out of my time.

Here is a breakdown of content you can skip to in video info on YouTube. The numbers signify number of minutes into the video:

0:28 Seven years of arachnoiditis/ mild AA

1:16 Current medication

1:57 Vitamins/ supplements/ diet

2:08 Walking physio

2:32 When people ask: How are you doing?

4:09 What does it feel like to have arachnoiditis/AA/ Spinal CSF Leak (active or in recovery)?

5:18 How did my fall cause arachnoiditis?

6:49 What does the arachnoiditis pain feel like?

9:49 CSF/ Spinal fluid flow issues

11:24 Standing is normally a better position for me

12:46 Higher Intracranial pressure (ICP) issues/ symptoms – common to those with arachnoiditis/ tarlov cysts and post spinal CSF leak

15:02 Problems with focus & concentration

18:33 How about driving a car?

19:07 Do I ever feel normal?

21:09 Do I have fears for the future?

I hope that the videos are helpful to others out there with both spinal CSF leaks / arachnoiditis or any other physical or mental health condition. It really is not at all easy navigating such conditions which is one of the reasons I choose to share my story. As you will see and have read previously, I am very blessed and privileged to have a very supportive husband, family and wider support network in our church and other supportive friends – both around me and online.

I really do believe we need others to make it through the immense challenges of these conditions.

So if you do feel alone today I would really recommend trying to find others to connect to – both around you or online through support groups. There are many groups available via Facebook groups, Twitter and other forums. Please don’t stay isolated if you do need support.

…And please don’t stay silent either.

Talking or writing really can help. Whether you show others or not. I am in a privileged position to be able to share my story publicly – others are not. But I hope that even when you can’t ‘find the words’ that my words might connect with you. So that you know you really are not alone. There are others – some better off and others worse off than you. Across the world many others are trying to find their way through dealing with and managing these conditions and their devastation on our lives.

I am thankful that in 2022 we have the internet to help us find one another so that our collective experience and voice might become even more powerful and increasingly louder – until more people are reached, understood and helped – both medically and holistically. So please do share my story with anyone who might listen – if you think it will help you and the cause in general.

Compassion and advocacy starts with you, and I, telling our stories and hoping that through them others might well be saved some of the additional pain we have had to face. We will then realise more and more that we face these awful illnesses TOGETHER and together we are surely so much stronger than trying to fight alone.

“Sit with hurting people. Offer them your presence. Show them you’re connecting to their pain. Listen to what they need. Weep with them. It won’t make them feel worse; it will make them feel welcomed into communion with you.” – Katherine & Jay Wolf

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” -Psalms‬ ‭73:26‬ ‭NLT‬‬

See this 5min video for a summary of my medical history from that ladder fall in January 2015.

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

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 . And another case where IV methylprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania or see ‘Arachnoiditis: The Evidence Revealed’ by J. Antonio Aldrete,

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Arachnoiditis, Spinal CSF Leak

NEW VIDEO DIARIES: ARACHNOIDITIS & SPINAL CSF LEAK RELAPSE/ FLARE

8 Comments

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”

– Mother Teresa

At the end of January I had another horrendous relapse / flare of my arachnoiditis/ mild adhesive arachnoiditis & spinal CSF leak symptoms. Although I had experienced some pre-warnings in the weeks before, on Thursday 28th January my symptoms again exploded so acutely that I knew I needed to access another 5 day IV methylprednisolone ASAP, as previously agreed with my more local neurologist if that happened. It unfortunately still took a week to arrange for me to receive it at the local day case unit, especially as I really wanted to avoid going via the ED due to Covid and hospital pressures. It was also the first time of these arrangements being actioned which meant it took a little bit more time.

So as I waited at home as we and my wonderful GP team chased the hospital and my consultant to make arrangements for me ASAP, my husband and I made the decision to film what happens to me when I flare / relapse, and how I responded to treatment – as an open education and awareness project for other patients and their family and friends, as well as any doctors who may be open to listen and learn more about arachnoiditis and spinal CSF leaks.

We mainly decided to do this because when doctors, patients and the general public do not understand these conditions it causes us sufferers so many many problems in being ‘heard’ and accessing treatment. Also – as anyone can see from the videos when I am in a flare – things deteriorate dramatically in a week. Arachnoiditis/ AA flares should be treated as a MEDICAL EMERGENCY if doctors want to stop more permeant adhesions from forming – which could ultimately lead to paralysis, partial paralysis, incontinence and irretractable pain syndrome.

So I cannot stay silent!!

Without my IV steroid treatment, steroid taper and ongoing every other day 5mg prednisolone (steroid) and 75mg diclofenac (anti-inflammatory) & 4.5ml LDN (low dose Naltrexone via private prescription), I have no doubt the adhesive arachnoiditis would have moved into more severe categories over the last two flares.

It thus felt time to branch out into videos to complement my writing in this blog.

So I have a YouTube channel now packed full of educational videos showing my flare, talking about symptoms and how I have done in recovery since. I will keep updating my channel to talk about my progress or new things I am learning about that are relevant to the condition.

Here are some of the relevant videos and links:

This is my case summary video that was reviewed by a NHS Consultant friend before I posted it. I wanted to create a short summary of my whole medical journey that would also be of interest to doctors to and could be used as a presentation in their educational meetings and lectures if relevant.

Here are a few other videos from each section and a link to each ‘playlist’. All the individual videos can be found on my YouTube channel.

I will now add one or two key videos from each list here:

ARACHNOIDITIS FLARE DAY 2 SYMPTOM EXPLOSION
ARACHNOIDITIS FLARE DAY 6 WHOLE BODY HORRIFIC PAIN EXPLOSION
IV STEROIDS DAY 1 AT HOSPITAL DAY CASE UNIT
IV STEROIDS DAY 4 AT HOSPITAL DAY CASE UNIT
FINAL DAY (5) OF IV STEROIDS. IN THIS VIDEO I ALSO DISCUSS MY ISSUES WITH SITTING DOWN AND HOW I DO SIT. I ALSO TALK ABOUT HOW GOING FOR A WEE MAKES MY HEAD WORSE.
STEROID TAPER DAY 1 & STORY OF 2017 FLARE & SEIZURE FROM CT MYELOGRAM & FLARE FROM 40ML EBP
DAY 10 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT RESIDUAL SYMPTOMS AND MILD SCOLIOSIS
DAY 12 OF STEROID & ANTI-INFLAMMATORY TAPER PLUS INFO ABOUT PAST RELEVANT RADIOLOGICAL FINDINGS OF TARLOV, SPINAL/ BRAIN CYSTS, BONE SPURS & OTHER GENETIC NEUROLOGICAL ABNORMALITIES INCLUDING POSSIBLE MARFAN SYNDROME.
DAY 3 OF NORMAL ALTERNATE DAY STEROID & ANTI-INFLAMMATORY PROTOCOL. (5mg Prednisolone & 75mg diclofenac). THIS VIDEO ALSO INCLUDES INFORMATION ABOUT MY APPROACH TO ANTI-INFLAMMATORY AND COLLEGEN BUILDING DIET & NUTRITION.
Year update added in July 2021

That should be enough videos to give someone more of an introduction to my new educational and awareness project. I have learnt a lot over the past six years about my two radiologically confirmed diagnoses, even though I only knew I had had arachnoiditis all along too since July 2020. (It can now be seen on my original 2015 MRI’s 3 months after my accident and before any of my spinal procedures. I also experienced symptoms of arachnoiditis as soon as my symptoms came on after my ladder fall in January 2015).

PLEASE NOTE: ALL MY VIDEOS & WRITING ARE FULLY IN THE PUBLIC REALM AND CAN BE SHARED IN ANY CONTEXT OR PLATFORM WITH MY FULL PERMISSION. MY ONLY DESIRE IS THAT PEOPLE LEARN FROM MY CASE SO THAT OTHERS DO NOT HAVE TO SUFFER SO VERY MUCH FOR 6 YEARS TO GET RADIOLOGICALLY CONFIRMED DIAGNOSIS. SO PLEASE DO SHARE THEM WIDELY!

Thank you to everyone for all your support in this new educational project. I had 1000 views of my main case summary video in one week and I know many doctor contacts saw and shared it. If any doctors do want to know more they should feel free to get in contact with me and I can share more about the hospitals, teams, GPs and consultants I am under – IF they want to find out more because this would help their patients to get treated more quickly.

I now have two written radiologically confirmed diagnosis of arachnoiditis from two senior NHS neurologists at two Midlands NHS hospitals. I continue my medical journey under both their care.

Email me at: beckyhillblog@outlook.com

If my journey changes the outcome for just ONE patient then it is worth it all. So if you are that patient today – I do this for you and pray that the information I share may make your journey a little easier than mine.

“Let me be filled with kindness, and compassion for the one
For humanity. Increase my love”

– ‘For the One’ Bethel Music

For more posts of my arachnoiditis diagnosis please see the arachnoiditis menu above.

ARACHNOIDITIS INFO: ‘Arachnoiditis – Taming the Most Painful Pain’ Dr Forest Tennant video and Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete) and The Arachnoiditis Syndrome (Dr Sarah Smith)

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 . And another case where IV methlyprednisolone was successfully used: Idiopathic Arachnoiditis of the Cauda Equina: A Case Report from Tanzania

For more previous posts about my story of living with a spinal CSF Leak (from before we understood the arachnoiditis element) please look at the subject heading on the menu bar above.

SPINAL CSF LEAK INFO: Here is a brilliant 2 min animation about Spinal CSF leaks. For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.