MY ARACHNOIDITIS UPDATE : ONE YEAR SINCE DIAGNOSIS

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Update on symptoms one year since arachnoiditis diagnosis and six months since my last flare and IV steroid treatment. Things have progressed to a stable 'peak' in what I can do 1:30. Despite many many ongoing daily symptoms and challenges 2:00 including trouble sitting down 4:00 - with the help of daily medication and lots of walking each day 3:22 we have managed to go on holiday 1:40 and do many things that would have been impossible this time last year.
Medication changes: 5mg prednisolone every other day (after 20mg Omeprozole to protect stomach), daily 4.5ml LDN & Iron tablets for low ferratin levels 4:56
Arachnoiditis a relapsing - remitting condition: 6:37
At the moment we are not sure if the spinal CSF leak is still there or not. It was last seen on MRI in September 2019. I do also have Tarlov cyst/s in my sacral spine.
For further additional info linked with this video update please see this blog aticle: beckyhillblog.com/2021/08/21/...
#Arachnoiditis #AdhesiveArachnoiditis #SpinalCSFLeak #TarlovCysts #CSFLeak
To read about my July 2020 hospital stay and diagnosis please see: beckyhillblog.com/2020/08/22/...
To see my six year medical case summary video since my original trigger ladder fall please see here: • MY SPINAL CSF LEAK & A...
Please note: This is a fully public educational video project & can be shared with anyone in any setting with my full permission. My only desire is to raise awareness of these desperately awful conditions & how to treat them.
UK CSF LEAK CHARITY: www.csfleak.info/
US CSF LEAK CHARITY: spinalcsfleak.org/
ARACHNOIDITIS: ‘Arachnoiditis - Taming the Most Painful Pain’ Dr Forest Tennant video
• Arachnoiditis-Taming t...
ARACHNOIDITIS: Suspecting & Diagnosing Arachnoiditis (J. Antonio Aldrete)
www.practicalpainmanagement.c...

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28 июл 2021

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Комментарии : 66

@lindasplaylist100 Год назад

Hello fellow AA patient. Wish I could get care. Health care stinks in the US. Bad week for me. Thanks for sharing

@beckyhillblog Год назад

So sorry you have had a bad week. Health care in the U.K. can also be very difficult & usually involves much waiting on NHS. Many AA patients struggle here to to get diagnosis & help. It normally involves many battles. For me it took 5 years to get more answers - but by then I thankfully had a good team of open minded doctors who understood my case more. I hope you find more help moving forward.

@caffhan 3 года назад

Thank you for taking the time to record your update. It's wonderful to hear from someone else who has this condition. Keep on going. ♥️ Love from a fellow AA sufferer.

@beckyhillblog 3 года назад

Thank you for your encouragement. It helps when you know you are not alone!

@veronicahernandez7322 Год назад

I have AA- after for spinal surgeries, three Csf leaks, c4-c7 incomplete cord damage, etc. I lost. 60+% use of my arms and a leg. I ended up with severe contractures and I can’t extend my arms at the elbow, lift my arms , etc. My whole body shakes when I try to use them too much. My right leg is the same. Pain is 24/7. I have word finding issues from the leaks. I’m so happy to see someone doing better! ❤❤ Hope you continue to improve.

@beckyhillblog Год назад

Gosh I am so very sorry to hear about your own suffering. It sounds so complex. It must feel immensely frustrating to have developed AA after spinal surgeries to help other issues. 24/7 pain is so immensely exhausting - I have known months on end like that… and yet I feel very grateful to have found a pathway to more slightly easier days - despite the constant management of ongoing pain and symptoms. It does help when you can do more. I hope you also find some more relief moving forward or more fruitful symptom management. Take care - sent with empathy & love ❤️

@RosiepooUnowho 2 года назад

Thank you for the updates!

@pratyaytalukdar4077 3 года назад

I'm glad, you're doing so much better now. Keep it up. Hope to see you get even better. Sending all the necessary healing vibes!!

@beckyhillblog 3 года назад

Thank you so much for your encouragement!! 😊

@lucash8234 2 месяца назад

I was just diagnosed. Thank you for these videos.

@beckyhillblog 2 месяца назад

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

@klaudiapatrycja1747 2 года назад

Wow, I can only one km and sometime I have use rollator so your condition is amazing!

@beckyhillblog 2 года назад

I have had many seasons and many months on end over the last 7 years I could hardly walk at all or at least not too far. So it is always a blessing when I can. I hope you find more relief moving forward too.

@slipdisco 7 месяцев назад

Thank you for the update. I was recently diagnosed with arachnoiditis after an MRI and CT scan. I'm 64 years old and I had three lumbar back surgeries when I was 12 years old. My back pain has always been a problem, but things got worse in 2014 when I started having lots of pain, tingling and numbness. In addition to the back surgeries, I've had many steroid injections, and I didn't know that the surgeries and injections could be the cause of the problem. I was having physical therapy for my back, but my hips started acting up and I subsequently had my left hip replaced in July 2022 and my right hip replaced in May 2023. I was hoping that these surgeries would alleviate my back pain. It hasn't. Last week, I had a steroid injection in my lower back hoping to get some relief. My pain specialist and neurosurgeon stated that I need a decompression/fusion surgery because my lower back is very unstable. The injection has only provided minimal relief and I will be scheduling the for March. I've been reading about arachnoiditis on RU-vid and the internet and it all sounds so bleak. It is nice to see a story where a person is getting some respite and relief.

@beckyhillblog 7 месяцев назад

I am sorry to hear about your own pain and problems. It does sound very complex. And yes surgery, epidural steroid injections & any inflammation in the spine can be part of causing the onset of arachnoiditis. Often the more procedures the worse it gets. But you are right I am thankful that my condition is currently managed to the extent that it’s not progressing at the moment and I am able to be quite functional- amidst many many limitations. However, it really is an awful illness and one that needs to be managed carefully by doctors who are aware of how the inflammation can spread and cause progression. Managing the inflammation is key really. My story is also complicated by the CSF leak which adds more complexity. I hope you find more relief soon amidst having your manage your multiple conditions.

@slipdisco 7 месяцев назад

@@beckyhillblog Thank you, Becky! It is a lot to manage.

@nadinemcguigan1196 2 года назад

I’m 100% positive this is what causes the excruciating pain in the middle bottom of my back, I can’t walk or nothing and doctors aren’t even giving me an X-ray or nothing! I’m really struggling to cope with the pain and feel like I’m losing my mobility. I have already been diagnosed with neuropathic pain due to nerve damage and I think it’s related to this.

@beckyhillblog 2 года назад

I am so sorry to hear about all your pain and mobility issues. It is certainly very very hard to get a diagnosis for this because it’s not very well known and understood by doctors. Really you need an MRI to check for arachnoiditis/ AA however - it took 6 years for them to see it on mine as it’s very unusual. It’s also hard to see in the early stages and arachnoiditis itself can’t always been seen at all. Clear MRIs cannot rule it out. All I can suggest is doing your own research to see if it fits your own symptom patterns - then if it does trying to find an understanding doctor/ neurologist/ pain specialist. But it’s not an easy journey. I wish you all the best moving forward & hope you find more answers/ get more help soon.

@aliciam_g16 2 года назад

I second this about needing an MRI. X-rays don’t show nearly as much as the professional needs to see vs MRI. I’ve just been diagnosed with this today. I’ve lived with chronic pain since 2010 and have had 5 back surgeries already. It explains my increase in pain and even an MRI from one year ago looked totally different. This condition is very serious. The longer one takes to get it taken care of and treated the higher the risk of possible partial to full paralysis from the problem area down. Please try your hardest to get the imaging done. Catch it now before it’s too late

@disgruntledgrunt4259 Год назад

I was diagnosed with adhesive arachnodiits and cauda equina syndrome in 2004 after surgery the previois year for L5/S1 Spondylolysthesis & Spondylolysis. It hasn't been easy but we do it day by day thankfully with the help of my wonderful wife.

@beckyhillblog Год назад

Wow that’s a long time to have this but I am glad you have a supportive wife. That really does help so much!

@mariavelascomolina7491 Год назад

Hello Becky. Did you stop takimg all medications? I thought ldn and steroids at low dosis should be a permanent treatment to avoid inflammation. Are you doing well without?

@beckyhillblog Год назад

I still take LDN and every other day 5mg prednisolone to keep the inflammation under control. That is recorded in all of my videos and blog posts.

@bonitabradley8213 2 года назад

I’m 8 months into my diagnosis. I’ve taken myself off of everything but Tylenol arthritis and an anti-inflammatory. They never would give me anything stronger than gabapentin and Lyrica and that stuff made me stupid

@beckyhillblog 2 года назад

I hope that you find the best way forward for you Bonita & find the right doctors to help you. I only take Lyrica (pregablin) during major flares but quickly come off it again.

@petegangies 2 года назад

Hi Becky.. was the tarlov cyst identified to be causing any of your symptoms?

@beckyhillblog 2 года назад

No - my hospitals generally typically felt tarlov cysts are ‘incidental’ findings on MRI (I had to ask if I had them after viewing my own scans - then radiology confirmed). Now the main one is noted as small as only 8mm. Although I have heard a specialist say anything from 5mm can be symptomatic. My neurologist has learnt a bit more about TC over the years - but is only just learning and mainly in connection to spinal CSF leaks. But since my diagnosis I have learnt arachnoiditis/ AA and tarlov cysts are very linked & often if you have one - you can have the other. So in my case - we don’t know. I think it’s possibly symptomatic - but equally hard to know what is the arachnoiditis/ mild AA or what is the TC… so lots of ongoing unknowns.

@beckyhillblog 2 года назад

I found this lecture very helpful in understanding the links & that doctors understand very little about either condition unfortunately. www.crowdcast.io/e/tarlov-cysts-and-pain-in/register

@JosephOfBorg 3 года назад

I find that the vibration from riding in a car is a big factor. In fact it makes flying almost impossible

@beckyhillblog 3 года назад

Yes car journeys (especially bumpy ones) are really tough. My one plane journey since my accident in 2015 was to Italy in 2019. That was really very hard for me - especially the ascent. My ICP/ intracranial pressure in my head and spine seemed to increase very fast and I felt desperately ill. It did improve after reaching altitude but took a while. And it was only a 90 mins flight. So flights can have an added problem for some of us too if our ‘pressure systems’ are hypersensitive too. As well as the sitting and vibrations. 😩

@anythinggoes5574 3 года назад

@@beckyhillblog Becky, did you ever experience like these brainjolts or odd seizure-like symptoms that maybe happen for a second or whatnot? I get this symptom and it seems to stem from movement in my neck. It also feels like my sinuses are wonky. Felt like I was gonna pass out and vomit today. I also have the lower back pain but nothing else. Barely any headaches either. I'm referring to the CSF Leaks.

@beckyhillblog 3 года назад

@@anythinggoes5574 I get seizure like and jolting which you can see something of in my case summary video: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-cKECz_fCnFw.html like you are being electric shocked. I know now that it's a typical arachnoiditis symptom and connected to the nervous system issues. The only time I have actually seizured was after my CT myelogram in September 2017. But when I flare I regulaly twitch, spasm and jolt. I can't really relate to the sinus' being wonky - but I can get a lot of pressure in that part of my head so it feels 'full'.

@TheRuthyc Год назад

I think I have arachnoiditis. But no one can diagnose it. I have constant pain, never stops. Since 2002. A few weeks ago all of my pain medication was stopped. Here in Nevada there are strict rules. I used to be an RN. I think I could possibly have just arachnoid inflammation. So how does that show up on an mri? My pain is in mid back and just above sanctum and sacrum. I just cleaned the kitchen and the pain went to my buttocks too. I am suffering horribly and it doesn't stop! What are LDN tablets?

@TheRuthyc Год назад

Should say just above sacrum and sacrum itself.

@beckyhillblog Год назад

I am so sorry to hear about your pain and suffering. Regarding MRI results it’s tricky as ‘clear scans’ don’t necessarily rule it out. Sometimes it’s very difficult to see and also takes a very experienced neuroradiologist to know what to look for in more subtle cases. I also know people who apparently didn’t show anything on MRI - but during surgery for a lumbar spinal CSF leak the neurosurgeon scanned their dura with ultrasound (during open lumbar surgery) and could clearly see clumping and adhesions. But they were also lying on their stomachs and the adhesions were at back of spinal canal - interestingly a new systematic review of arachnoiditis literature has suggested MRI in prone position (on tummy)might help. Because gravity means when lying in back the nerves tend to move towards back and then radiology can’t always see if their might be a bit clumped or adhered to back of dura so easily. But the problem there is that radiologists are not used to reading such images - so such approaches may take time. On contrast high quality MRI they can sometimes see inflammation, nerves moving towards back and sides, clumping, larger nerve roots etc. I take LDN - low dose naltrexone in liquid form through private prescription- a lot of arachnoiditis/ AA and even MS patients believe it helps them although it does currently lack clinical trials. But is deemed a very safe drug in low doses. You can’t take it with opiates though. As it blocks them. I hope you find better ways to control your pain moving forward. Xx

@TheRuthyc Год назад

@ Becky Hill I thank you so much for all of this information. I am unable to do what you are doing here, the walking, without a lot of pain, especially afterwards. I am really glad that you are able to do this. Dr. Forrest Tennant was a specialist on arachnoiditis in California until the Drug Enforcement Agency shut him down for giving what they thought were too many pain pills. Due to the opiate crisis. He called it the king of pain!

@lilyrai984 Год назад

LDN low dose naltrexone I suffer from central pain This helps with 450mg lyrics And 75 mg nortriptyline.

@brianmcreavie3810 5 месяцев назад

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

@beckyhillblog 5 месяцев назад

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

@bradfranklin2191 2 года назад

I cannot thank you enough for sharing. I as fortunate to find relief from stem cells via IV, from my fat, and later on bone marrow. No cure, but a 90% better pain level for 3 years ... plenty of flares but NOTHING like before (2 years of high pain, gabapentin, etc.) but i can run a bit and play tennis gingerly and not suffer too bad or long, several days. Have met others via fB having similar results or better considering they had progressed further. Not running around, but much better pain levels. There must be some means IV stem cells can modulate inflammation or help reset it for some of us. No science behind it at this point. Triggered by (ill-advised, negative results) lumbar puncture I believe done too high (for me, anyay), L1/L2. No other issues. So a simpler case than most, but pain is pain. So I share in case others find it helpful. I mainly use pregenolone, intermittent 2-4mg methylpred as needed but no more than 2-3 times every 7 days, and LDN. But the stem cells changed the game for me tremendously. Pricey, though.

@beckyhillblog 2 года назад

I am so very very glad that you found more relief via stem cell treatment… it’s always so wonderful when we can do things we thought were lost. I am very thankful for my steroid IV’s & ongoing treatment & walking regime which has made my condition much more ‘liveable’ and ‘manageable’ … I can do SO much more than pre-diagnosis & treatment. However I find I perhaps have some extra restrictions due to the whole spinal CSF leak issue & being careful not to make that worse again too. So I have two things to be mindful of activity wise… although as you say our bodies tend to tell us when we have pushed ourselves too much. Firstly my head often tells me - then also the lumbar spine pain. I really do hope that we both find lasting progress through our ongoing protocol and treatments.

@beckyhillblog 2 года назад

I am not sure people in the U.K. could access stem cell treatment here - even if they wanted to try it. I am extremely grateful that so far all my treatment for spinal CSF leak/ arachnoiditis has been on our wonderful (although extremely stretched) NHS! So I haven’t had to pay myself (except for the occasional private consultant consultations when I wanted to speed things up)

@bradfranklin2191 2 года назад

For the bone marrow (my second round), they literally did NOTHING except syringe it out of ishial spines and push it via iv. No processing! I think they did count one of the two syringes and double it to estimate the total "dose" of viable Hematapoetic (marrow) stem cells. I had 0 hope of it working, it was just a "hail mary." I was in disbelief 10 days later when I didn't need my gabapentin. OK, the second round I had some hope, but not the first round a year earlier. Reference "Miracles from Heaven" the movie. Girl dying of intestinal disorder falls from tree, and is miraculously healed. Tell me that's not stem cells from fall-damaged tissue and/or bone at work! If it's all about controlling inflammation and fostering neurogenesis in CNS, then anything that produces that can tip the balance and eventually address pain levels and function. I know many folks who, like you, are getting to a good, stable place with protocols such those at arachnoiditishope.com/ I am so encouraged by your success, and grateful for your sharing in great detail. I know many will benefit greatly.

@dustyfeller 2 года назад

Brad, I hope you see this. Can you tell me what FB group you belong to, and what type of doctors you saw, such that you were able to do bone marrow and stem cells? Was the genesis of your condition a CSF leak, or did you “go” straight to AA after the LP? I could really use your help on this (I’m in the states) and I’m on year 4 of a 24/7/365 NDPH migraine, that started with an LP (an epidural steroid injection). I’m currently at the stage of getting additional patches, but it’s becoming likely that I have AA. Those bedridden videos of Becky give you an idea of what it’s been like for me for over 3 years. Any info would be appreciated.

@beckyhillblog 2 года назад

@@bradfranklin2191 Well I am very glad that your investment paid off and the stem cells seemed to help you so much. I really do hope that there is further research made available in the future on arachnoiditis/ AA and the various treatments. I remember Dr Tennant saying that he finds different things work for different people and sometimes it is a journey to find what works for your body. I am so grateful the IV steroids and ongoing protocol have helped me so significantly. I am by no means 'normal' but I can do far more 'normal things' than I could prior to the diagnosis and treatment plan. So for that I am truly grateful.

@HyperarchFasciaTraining 2 года назад

There is new therapy available now called Hyperarch Fascia Training which demonstrated positive result in arachnoiditis.

@49walker44 Год назад

Are you still active on this channel? Had AA since 1997 and need to find .......

@beckyhillblog Год назад

Yes I am still active on this channel.

@johnb4183 2 года назад

How did you contract arachnoiditis ? Thanks.........

@beckyhillblog 2 года назад

This is my 5 min case summary video: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-cKECz_fCnFw.html we believe the arachnoiditis started from a ladder fall in January 2015. The ladder fall caused a spinal CSF leak - possibly from a micro bone spur in my spine (I have many in thoractic spine esp pressing into dura/ spinal canal). One hypothesis is that the fall caused a bone spur to pierce the dura and maybe blood got in there from impact… or another dural weakness caused leak and same issues. In hindsight my MRI review shows mild clumping of the nerves from 3 months after my fall prior to my spinal procedures (epidural blood patches etc). Although my spinal procedures often flared it! But there are many unknowns on specifics. I also have tarlov cysts in my sacrum which can be linked. I had no MRIs ever prior to my fall so we cannot compare pre-fall. But I had no symptoms of a leak / headaches/ spinal and neck pain prior to fall. So all seems to have been triggered from that incident. But I am perhaps somewhat biologically susceptible to these things due to genetics.

@brianmcreavie3810 5 месяцев назад

We are the nhs dirty we secret