My name is Becky & I live in Leicester, UK. I love to inspire, encourage, uplift & educate people. Since an accident (a ladder fall) in January 2015 I have been suffering from both a spinal CSF leak & arachnoiditis which are two horrifically painful neurological disorders that effect the brain, spine & whole nervous system. My spinal CSF leak was diagnosed 3 months after my ladder fall but was not seen on any scans until Autumn 2019. The arachnoiditis was only diagnosed in Summer of 2020 and only seen on past scans from that Autumn - although both conditions appear to have been triggered by the original fall mixed with biological disposition & might have been caused by bone spurs in my spinal canal seen on CT scan.
I am also a committed follower of Jesus Christ and support my husband in pastoral ministry & admin at our church www.lifechurch.co.uk . So I also produce content to help build people up spiritually - especially those trying to navigate spirituality & deep suffering.
@@joellabrie-ki9bk I find it hard to know for sure what does what. I started the LDN a similar time to long term low dose intermittent steroids (in 2020). But the combination provided a massive difference in my symptoms, pain, fewer relapses and a better quality of life.
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.
Thanks for sharing your story. I have many similar symptoms having to do with cerebrospinal pressure levels. Additionally, when I hit my limit being upright, I get an immediate intense nausea which will cause me to vomit. If I lay down immediately, it will stop completely & almost instantly. I’m wondering if others can relate.
@@aimeepearson6448 I am sorry to hear about your struggles. Yes I can relate when my symptoms are flared and at their worse. These days (in relapses) it can take a little while to recover from those levels of pain and nausea once lying down. But in my early days the change when lying flat was very quick.
@@beckyhillblog Thanks so much for your reply. Because my leak hasn’t been located, I keep questioning my symptoms. Thankfully I have a doctor who is invested in finding it. I just had a photon splitting CTM, which is a newer technology & hopefully the suspected venous fistula will show up!
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!
@@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!
@@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
Can you plz tell me how much time this takes to be cured?? Actually my mother got the same thing and doctor advised her to take full bed rest for 1week but i am very stressed that if it wont be cured then what??
Do you mean from a spinal CSF leak or arachnoiditis? Spinal CSF leaks can self heal in one to two weeks if caused by a needle or surgery. Bed rest can help this process. But it doesn’t always happen like that. Some of those types of leaks need further medical treatment. Spontaneous spinal CSF leaks (not from a medical procedure) tend to take longer and more often than not don’t self heal without further medical intervention. But only time can tell whether a patient can self heal or not. For further info see the links in this video info. Regarding arachnoiditis - There is currently no cure. Only ways to stop progression and further damage if caught early enough.
No I don’t find normal pain meds help me. I do not tolerate opiates and they never really helped the pain for me (morphine makes me very sick anyway & other types just make my head more dreamy etc which is one of my most debilitating things. Also it can cause constipation which is a MAJOR problem for people with leaks/ arachnoiditis ). I have used pregablin - it did perhaps help the tingling but not the pain to much discernible level. So I just use the steroids and LDN and occasional diclofenac. For me it’s the anti-inflammatory element that helps the pain the most. Unfortunately the nature of arachnoiditis is flares/ relapses - so you can do better for a while then it gets worse again when the inflammation builds. Hence I have most success in trying to fight the inflammation rather than the pain.
My Adhesive Arachnoiditis is the worst thing that’s ever happened to me. The constant pain is horrendous. I would not wish this upon my worst enemy. This is truly a cruel disease. I’ve recently contacted another man in America that has AA. I’m hoping to work with him to match notes. Doctors in Michigan have no idea how to help me. Zero knowledge. One question I do have is you mentioned that you haven’t had a CSF leak in a while. Do you know when you’re leaking by a “different” sensation/pain or do you only know by a new MRI? They are not cheap. Please help me with that if you could. If it’s ok I would like to subscribe. I would keep to help spread awareness but right now I’m in so much daily pain and low disability income it is tough to do things. Thank you for your channel. Meeting another AA just lets me know I’m not alone in this.
Thank you so much for your message - I am so sorry you are suffering so much. AA really is a cruel disease. Regarding my spinal CSF leak - recent MRIs confirm it’s still there. So likely it’s always remained constant. Although it’s probably a slow leak and by now probably covered with some sort of membranes (as they do over time) that stops my symptoms being acute. However we have come to realise that it’s the arachnoiditis inflammation flares that cause my ‘relapses’ both back into my acute ‘CSF leak & arachnoiditis’ symptoms. Hence there is some effect perhaps to my CSF flow or how much I leak during these periods. But according to my MRIs the leak has probably been constant for the past 9 years since my ladder fall in January 2015. When not in a relapse my symptoms are milder - constant,awful pain and debilitating in many ways. But I am at least more functional than when I am mainly bedbound & housebound during the relapses/ flares. My case is perhaps more complex by the definite spinal CSF leak being there. Although I think most AA patients have some level of CSF flow disruption and seepage depending on how bad the adhesive area is. I am glad my videos help people feel less alone. There are no arachnoiditis experts here in the U.K. really - only a few openminded doctors willing to learn. Although in my case it’s really my CSF leak doctors who experienced a few AA cases linked to leaks and leak treatment so had to learn more rather than being experts in their own right on AA. There can still be a lot of opposition to the diagnosis in the U.K. as everywhere. I hope you find a better way forward and discover more ways to manage and live with such an awful daily condition and such high pain levels.
@@beckyhillblog Thank you Becky. I’m interested in CSF leakage and blockages in the spinal fluid being cleaned by my thyroid glands. I’ve “been told” that my nerves and their sheaths are growing back into my spinal sac and collects debris and makes like a beaver damn. It then bursts through and I’m in bed for days balled up in the fetal, or casket, position depending on where the pain is the worst. Cramping, burning, throbbing, electricity. I’m just worried at the pace I’m losing my legs. It sounds like I don’t walk nearly as well as you or do you push through the pain. When I try that I’m in bed for 3 days. I’ve noticed also that I’ll be watching tv or reading a book and find my legs seized up and almost locked. I can free them but the frequency of this happening is increasing. Thank you for taking the time to talk with me Becky. The more people I know the better our doctors might be able to actually work together to help our suffering. I’m basically being treated with drugs like a cancer patient because no one in Michigan (US) has any doctors who know about AA. My name is John, Becky. ZARDOZ is just my favorite Sean Connery movie that no-ones seen. lol.
@@oZARDOZo I am sorry your legs are being and feeling so rubbish. That happens to me in relapses/ flares. But mostly I can walk freely as much as I want - there is always pain but walking can help it when not in an inflammatory flare (they only happen about once a year currently). If I lie down for a while or sit then my legs don’t work properly when I first get up and feel wierd but as I use them this improves. For me dealing with the inflammation has been a game changer in what I can do. Since the diagnosis in 2020 and using steroids/ LDN/ occasional diclofenac my symptoms are much more controlled. A daily battle - but I have much more functionality in every way and spend a lot less time in bed. It really is a very very difficult journey to live with these conditions esp when doctors don’t really understand them well and there is a lack of peer reviewed data for treatments.
Hi Becky, I have Arachnoiditis please look into Dr Forest Tennant, Arachnoiditis Foundation I have found some relief with his protocol Peptide usage BPC-157 ARA-290 God Bless
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?
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.
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 🙂
I've had adhesive arachnoiditis from1989 it's just a curse drs don't care we are the hospitals dirty we secret I have five spinal operations adhesive arachnoiditis even made my bladder shrink straight to augmention cystoplas also have spinal simulator fully implanted only us who have this understands iam from uk
- Prednisolone (steroid) 5mg every other day - LDN 4.5ml daily - Omeprazole (20mg) to protect stomach lining when taking steroids / diclofenac especially higher doses - To protect bones from steroids: - Calci D3 1000mg daily - Alendronic acid 70mg once a week Travelling/ flares - so I take very few - pregablin 50mg - Diclofenac 25-75mg - Diazepam 2mg - Zopiclone 7.5ml (sleeping tablet) But I have to combine the above with lot a of walking each day which is perhaps one of the most important parts of the protocol. I pretty much do 10k steps a day - unless in a flare. The walking plus meds is the key to my stability
Have you had a FONAR CSF Flow Dynamics scan done? Before he recently passed away, Dr. Raymond V. Damadian (the true MRI inventor) invented the FONAR scan. There are numerous scan centers around the world to monitor CSF flow dynamics some using FONAR scanners. It’s a wonderful diagnostic tool … be well 😊
Thank you - I don’t think I have had a FONAR scan but I have had many MRI/ 1 CTM/ a few CT & 1 cisternogram that have looked at my CSF and something of flow. My most recent MRI’s in October 23 confirmed that I do still have the leak evident from my cervical to upper thoracic spine. So that confirms that part of the issue but it can’t of course answer my other questions about flow issues causing pressure / ICP changes on top of leak etc etc
Ah ok I just looked FONAR up - it’s upright MRI. No I have only ever had MRI lying on my back. tbh I have heard prone mri on your stomach can be one of the best for checking AA. But my Neuro says the radiologists are not used to reading prone MRI so it would be hard to get one.
OMG! Thank you for all this info. I have been suffering with something like this for 5 yrs now and even the Drs look at me weird. I have a double fusion in low back and also have degenerative disc disease in my neck with a lot of pain. My vision gets bad and I cant even begin to explain the symptoms but fullness in my head is one of them. Headaches is another. I do have an arachnoid cyst in my brain but Drs do not think its a problem. Hopefully with all of the symptoms you list I can share them with my Dr. Its really very difficult to live a life like this, dizzy, brain fog, memory problems, etc. I feel my whole life is very difficult and Ive become a anti social and really dont have a life anymore. This is my late husbands computer, my name is Judith. Over the last 20 yrs I have been poked in the spine many times...I am probably leaking. These more intense symptoms only came on about 5 yrs ago, and perhaps all the testing has caused how distorted my brain is now. Vision is so disturbed, my visual horizon is so crooked that I have to immediately look down because my eyes wont align the horizon properly and it causes nausea and more dizziness mostly looking outward across a parking lot or field.
I am so sorry to hear of all your suffering Judith. Having so many strange symptoms really does make life so difficult - especially when doctors do not understand what they are. I hope that you find more answers and help soon.
I am sorry you are suffering with this awful condition too. Yes constantly needing to move around is certainly a key symptom for me that was so bizarre until we understood the arachnoiditis. Blessings to you too.
@beckyhillblog thk u.....I got a stimulator in my back but it goes to my stomach tried and tried to get it fixed even a 2nd surgery but I just had to stop using it. Wish Dr's knew more about this around me to help. Pains meds is all they do
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’
Yes but it takes very experienced neuroradiologists to see it. My scans were read as ‘normal’ for 4 years before they could see what was already on it.
I have adhesive arachnoiditis from 1989 it ruined my life my bladder shrunk and I had to get augmention cystoplasty aso five surgeries on spine have spinal simulator fully implanted it's a curse
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.
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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-u5sVPPr1Rm4.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.
It’s very difficult to be diagnosed with arachnoiditis in the U.K. perhaps slightly easier with spinal CSF leaks these days (although still tough) - but harder with arachnoiditis. My own diagnosis was only possible due to being under two NHS neurology teams for many years prior due to my spinal CSF leak. But if you send me an email and I can possibly send a few links to suggestions. But it’s not at all simple.
Just trying to keep my spine straight. I believe it’s linked to the mild AA as my spinal cord would be somewhat thethered. It can also be linked up spinal CSF leaks and low pressure (the brain sag sensation). But for me it’s both ends of my spine.
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.
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
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. 😥
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.
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.
I hope its been better for you but for me, it's like doctors dont even believe in the pain. Ive been given no treatment for this. (Dr. Tennet saw the arachnoiditis on my mri but other doctors have ignored this so far). Also I had wrote twice about the epidural causing this and both times were immediately deleted by RU-vid (I guess? The creators say they don't delete comments). So its a big secret then? I'm still in shock i can't even write about the epidural causing pain without getting deleted. Thank you that is encouraging maybe if i have another mri the arachnoiditis can be seen, its been around 5 years since the last mri
I am so sorry you are suffering so much but lack clear answers. It is so difficult because arachnoiditis is not well understood so doctors are understandably cautious. But equally when you are the patient in so much pain it feels so awful to be dismissed as perhaps ‘exaggerating’ or ‘seeking attention’. The ‘gaslighting’ that can then happen can be almost as damaging as the illness itself. The hope is that diagnosis and treatment pathways will improve in time. However this is sadly often not quick enough for those already suffering for years. I hope you get more support and answers moving forward.
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.
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.
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.❤
Adhesive Arachnoiditis flare-ups are horrendous. Personally, I do not take steroids as I am unable to source them in the UK. My prayer for us sufferers is that we are just not lumped into a chronic pain category, and there is more investment and research. Your videos have helped so many people. Thank you for raising awareness
They truly are horrendous. Yes unfortunately it is very very difficult to get steroids prescribed even if you have an arachnoiditis / AA diagnosis. Which is a shame - I wish they could at least trial them with more people. Although I do know there are risks to using them. I also agree there needs to be research and investment in understanding these conditions. Awareness is the first key as it is certainly very underdiagnosed.
@beckyhillblog I totally agree Arachnoiditis/Adhesive Arachnoiditis is a very underdiagnosed disease. Although considered a rare disease, I think it's more prevalent and misunderstood. A holistic approach to diagnosing taking into account, history, imaging, and symptoms is helpful. There is too much reliance on imaging. In my case, I have been diagnosed with late stage chronic adhesive arachnoiditis after 8 years.
@@shelleyrice1 yes because often they only know to look for late stages radiologically - but by then it can be too late to effectively treat. It is honestly so difficult and definitely also prevents understanding spreading.
I have adhesive arachnoid it is. For 49 years. It took 19 years to diagnose. Tried a stimulator 2 actually. Now I am on morphine pump. It seems it’s very hard to ease the pain. I also have stenosis in the cervical and lumber spine. I live in Dublin Ireland and there are days when I wonder how long can it go on.❤❤🙃☃️
I am so sorry to hear how long you have been suffering. It certainly is a brutal illness. I hope you find ways to manage the pain enough to move forward. Take care. ❤️
I had a fusion of my L5-l3 in 2014. I was supposed to be in the hospital for 3 days. On the 2 day doctor came in and I kid you not he violently pulled out my drainage tube followed by a spinal fluid leak. On day 5 he opened me back up and found a suroma and hematoma. I didn't go home until day 10. I went home in a lot of pain. My stitches came out and a few days later my area started leaking and would continue until it started looking like a swollen worm on my back and was red. I couldn't lean back in a chair. As there continue to leak through bandages and my underwear I told the doctor this is not right. I went to the ER and was seen. I told them and they tried to have me come back in. I told them if the doctor was concerned he could walk across the street. I was admitted to the hospital with an infection and the internist said you have a suroma. He took a big chance and drained it with a needle. I tried 16 injections and nothing helped. No one called it arachnoiditis until years later. Of course they didn't want to continue to treat me or given me pain meds to deal with the 24/7 pain from the base of my skull to my toes. Now I save my pain meds until I hit my wall but I will try everything else first. I'm teleworking since the pandemic. I spend my lunch hour resting my back and sleeping to then go back to work. I also spend 1 hr before dinner laying down. Every part of my life is impacted. Strength, sleep, joy just everything but I have to keep going. No one understands this condition and doctors never speak about it. They never tell expectant mothers during labor that you can get this condition with an epidural. It's not rare like they say. There are thousands of people that have it. Wishing you patience and peace while you deal with yours.
I am so very sorry to hear about your story - leaks & arachnoiditis are awful and when they are from medical procedure complications it can sometimes be even more challenging - especially when they can partly be caused by a naivety of medical staff to the risks, complications and complexities of these conditions. It really is so very hard to deal with the life changing pain and varying levels of debilitation. I am glad you are still able work but know it must be really hard for you each & every day. We do find ways to manage it all but it is really not easy at all. 😔
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.
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.
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. ❤
‘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.
Hi Becky. I have just come across your channel. I too have arachnoiditis. I have it 50 years now and tried everything, including stimulation machines. I am now on a morphine pump since 2021, but the pain was great for a few months but now is back full time. The dissapointment was tough, to say the least! ,!!. I was told that there is no treatment or cure. I do have a terrific Consultant and am greatful for. Thank for your that. I cannot drive as I am a visually impaired. Thanks for the channel. Sincerely Theresa from Ireland.❤❤❤❤❤❤😊😊😊😊😊
Thank you so much for getting in touch. I am so sorry you have had this horrible condition for 50 years now that really must have been such an endurance test. You are also right the disappointments are so very very hard. I am thankful that steroids & anti-inflammtories are helping to stop progression for me and reverse the flares more quickly. My case is also complicated by my having a spinal CSF leak too. I also have some great doctors so I am glad you have a great consultant who has chosen not to give up. I hope you find more ways of having less pain at least longer term - although I am sure there is little more they feel they can do since the pain pump. It’s such a shame the relief didn’t last longer. Take care xx
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!
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.
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.
