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@@ericschmidt-te1sz I am so sorry to hear that. I do hope you find some relief soon. It’s a horrendous condition to experience.

@@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/

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

@@joellabrie-ki9bk neurologists. But a lot of people can’t access them because it’s not a well known proven treatment yet unfortunately. 😔

@@kristinaburrows5316 I am so sorry you know what it feels like too! 😔

@@manuelgallegos3940 so sorry to hear you have it too. I haven’t tried peptides because my meds regime works for me (which is partly inspired by Dr Tennants work/ research anyway).

@@beckyhillblog Dr Tennant is the one who recommended the peptides it has helped me more than any other just a suggestion I will keep praying for your recovery God bless.

@@lalaland956 yes very much so as I talk about in my blog/ videos. Lying flat or standing straight & moving around is much better than sitting for me. Which is classic for both arachnoiditis (and tarlov cysts which I have).

@@darrend2035 yes it shows on my MRIs

@@melwhelan2598 yes!

@@joellabrie-ki9bk 4.5ml a day. 2.5ml in morning. 2ml in afternoon.

@@beckyhillblog does it help a lot .

@@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.

I also think the LDN may well help stabilise mood too somewhat.

@@angiehorn9417 not particularly the glands in my neck. But definitely my neck itself is always stiff and painful.

@@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!

@@aimeepearson6448 I do hope they find it. That is certainly half the battle.

@@beckyhillblog I do appreciate you sharing about arachnoiditis as this is new information for me. Take care.

@@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

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

@@nishisharma7822 I am sorry to hear that. No I don’t have a spine tumour.

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. It’s really hard to get in prescribed in the U.K. lots of restrictions on how it can be used due to risks.

I am sorry you have to experience this illness. 😔 But I am glad my videos help.

I am so sorry you have been suffering as well for so long! 😔

I only really find the anti-inflammatories effective. Pain meds don’t really help me much.

Do you have a gmail. You you send me what meds do you take . I can’t fine a dr

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.

@@beckyhillblog peptides helped my husband for a while .

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

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.

For more info on my whole case see my written blog at: www.beckyhillblog.com

@@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.

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 🙂

- 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

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.

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.

thank you@@beckyhillblog

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

@@kathywhitaker1042 I am so sorry it didn’t work. It’s so disappointing when things don’t help like we hoped. 😔

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’

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

@@hansolo3504 yes I still use LDN

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.

No I haven’t had anything removed. Procedures on my spine could risk further leaks/ flare the AA.

I am so sorry - it sounds awful. That is such a long time. 😞

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 th-cam.com/video/u5sVPPr1Rm4/w-d-xo.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.

@@beckyhillblog thank 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.

Email address is on my blog beckyhillblog.com

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.

Thank you for all your kind words! My husband & I can often be mistaken for a bit younger than we actually are!

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. 😥

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

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.

@@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:/

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.

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.❤

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.

@beckyhillblog That's a great reflection. In my case AA has been picked up too late.