Thanks so much for making this video - I felt so accepted while watching! Crouching is tough for me. I do get thick knees + wateriness. This whole CSF / AA circle is bizarre indeed :) Was thinking of putting a treadmill below my High desk - but walking & working isn't feasible. Otherwise I struggle to concentrate all day. I could add - Word finding difficulties; - a high serotonin sensitivity towards pain level - Spasms in bladder & bowel - blurry vision at 4-5 pm on. Oh dear, I want to believe a csf leak is causing my AA and all this. But I'm also scared of an explorative surgery to fix it. So far, it's a daily battle and feels so good to see you describing vividly the veryday feeling. My beloved ones can acknowledge our new day project through your video.
I am glad you found it helpful. I think we gain a lot through ‘shared experience’ … we also do have to find our own ways to manage our symptoms according to our lifestyles and life demands. I find it extremely hard to concentrate on many activities such as writing, typing, reading, working on computers/ phones for more than about 30-40mins at a time before the pain and cloudiness is too bad. It all feels so frustrating when we focus on all we can’t do… but equally compared to my many worse months spent mostly in bed - I can achieve a lot. As long as I manage my time and energy very carefully & accept my many limitations. I hope you find the right way forward for you!
Always appreciate your videos Becky. I do fear that I have arachnoiditis as well as a spinal csf leak. The Chinese burn comment is exactly how I feel it. It’s a very specific part of my thoracic to the left. It feels like someone has rubbed my spine on a carpet but for me this gets worse the more active I have been and always as soon as I lie down in bed to sleep it flares. The weirdest head, visual and presyncope symptoms too. I relate to almost everything you say. Take care
Take care too… I hope it isn’t for your sake. But equally I hope you get the answers you need. It’s hard to know sometimes what is leak and what is arachnoiditis/ AA or general neuro inflammation or nerve damage from leak/ procedures. What a journey it is!
Wow… this makes so much sense. I had an accident 5 years ago. Fell down a flight of stairs, Torn shoulder, neck herniations, thoracic and lumbar herniations and degenerative disc disease all the way through. I also suffered a TBI, which I have lingering effects of that too. Nerve issues in feet and temperature changes in feet and all over. A nurse practitioner friend has suggested I might actually have this. After listening to your testimony I think she might be right. I have to lay down daily to relieve the head and neck pain. Head pressure specifically. Can’t sit for long unless in a recliner. And the clincher for me was your description of the trying to regulate emotions to not have what I call a neurological event that happens at the height of any emotion. Be a good bad, sad happy angry anything I can almost feel like a seizure at times I would love to connect and any information you have to give me in terms of Diagnostics and what not please feel free to send to me much appreciated. Thank you so much.
I am sorry to hear that you are so unwell with few answers but I am glad that my videos connected with you. Regarding further info - really answers to most questions are contained in my videos and my blog posts at: beckyhillblog.com/category/arachnoiditis/ I hope you find the right way forward for you! With empathy & love!
I get all of this. The bladder urgency is especially annoying. I had two weeks after patching where I could urinate like a normal person, with full bladder emptying and a feeling of satisfaction that I hadn't felt in years. It's definitely leak related and now I know that my body can function normally when sealed. Its all these niggling things that happen daily that add up and make this condition so hard to cope with. One day we will wee normally!
I am glad you got some relief for a bit. For me I think the residual damage is from the arachnoiditis as it tends to effect the bladder and has got worse over the years. But it’s a great thing if yours improved with a patch. That’s a good sign. Mine probably got worse with my last patch in sept 2017 unfortunately!! Take care and I hope you find more leak relief soon!
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
Becky I want to thank you for sharing your story, which in turn helped me discover that I have Adhesive Arachnoiditis after many years of severe back pain. Now I can focus on a plan to try manage the inflammation and improve my quality of life. A huge thank you
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.
Hi- It is nice to see you again. You look good. I admire you and you help keep me inspired. Thanks for sharing your experience with having to keep moving. I will share it to hopefully get some of my family to understand why I keep moving. I don't like that it can make them feel like I don't care or something else is more important. And thanks for the links. I always appreciate new information. I need to get on the steroids but I can't find a local doctor (LA California) who will prescribe them for me. You say rod down the back, I say like an old cast iron diving suit. I use Frequency Medicine which I feel helps keep it at bay, helps with pain and really helps me mentally. I'm happy to share my experience with you if you are interested. I am in my 20th or so year. Our symptoms are very similar. Blessings, Ken
Yes the constant moving can appear like you are distracted or not listening etc - it can sometimes seem rude. But if people do understand it’s just not possible to override that then it does help. Us and others understanding our symptoms can help a lot with acceptance and working through things. I hope you find the right doctor to help you move forward. I think it’s hard all over the world to access steroids.
Dear Becky I can relate to many of your symptoms, I used to carry my shopping the same way as you, close into me, unfortunately my spinal leak has become much worse so I am unable to carry anything now. I use the same sleeping technique with pillow between legs. I can only sleep on my left side, no other position which causes my hip to be quite painful. I cannot tolerate any car journeys the bumps and jolts make my symptoms so much worse but when I was able to travel I was terrified of the speed bumps!! I do not have arachnoiditus but have been very debilitated by the symptoms of the csf leak. Thank you for doing your videos, we need much more awareness of this horrible condition. Take care
I am so sorry to hear how poorly you are too. Thanks for taking the time to share your own experiences. It’s sometimes so hard to tell what exactly causes each things!! It’s also very hard when things get worse rather than better over time. I hope you find more better days in the future!
Great video. This is me almost to the tee. It’s so hard to describe these many symptoms to people. I am now having many issues with diamox. Not sure what my next step will be. Thanks for sharing!
I cannot stand more than 15 minutes without my back seizing up. No way could I walk 10K steps. I have to stop about 6 times in 1/8 of mile. I’m still working and it’s killing me.
I am so sorry to hear how bad things are for you. I haven’t always been able to walk that far - but the steroids etc have helped and I have always tried to maintain as much walking as able. Thankfully my case is currently mild. I would struggle to work though in an official capacity- all my work is voluntary or helping my husband with his business so completely flexible. I can’t think of many jobs that would work for me. So I feel for you having to try and maintain working. It must be unbearable. 😫
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
Those ‘me too’ moments can be very powerful right!! This blog post was my first after being diagnosed with arachnoiditis 5 years after my own ladder fall accident… beckyhillblog.com/2020/08/22/butterflies-in-the-dirt-a-new-diagnosis-arachnoditis-a-spinal-csf-leak/ I wrote it after a major flare I was treated in hospital for.
Becky thanx u for being so real , i also had accident , and they did a dicectomy , have had 2 epidurals for pain since , but your symptoms are exsactly what I have , how did you get it diagnosed as my doctor I don’t get much desire from her to help me solve my problem .. how did your doctor reach your diagnosis .. I live in South Africa .. much appreciated
I am so sorry to hear of your suffering. My case is quite complex as I was already diagnosed with a spinal CSF leak so I had been under two neurology teams. 5 years later arachnoiditis came to my attention over a period of time and it fitted with so many of my ongoing symptoms- so I presented the possibility to my doctors and around that time I happened to go into a MASSIVE flare anyway so ended up in hospital & ultimately they agreed to try steroids & they helped radically. I then went on to have arachnoiditis (lumbar nerve clumping) seen on MRI’s etc. To learn about the original diagnosis see:
Unfortunately it’s extremely hard to get a diagnosis in any country due to a serious lack of knowledge of these conditions. So it’s normally hard. All people can do is lots of research themselves then try and find an open minded doctor who has at least some experience if possible. Who might consider it. Also you need an experienced radiologist to read scans.
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!
Dear Becky. Thanks so much for your videos, they help so much. I have lumbar aa and my mean symptoms are in my legs. I was wondering if you also experience red swollen feet when waking and standing long periods. I also feel needles and burning on the back on my legs. I fell these symptoms are more related to csf pressure than to inflammation but it is difficult to know.
Thank you for your reply and yes it’s often very hard to know for sure what is causing which symptoms. I do get a lot of symptoms in my legs and feet. My feet & legs don’t particularly swell - but they can go tingly or numb sitting or standing in one position too long. I often feel ‘crawling pins and needles’ in my legs too but not just at the back. Also my feet have some slight impairment of sensation so I can’t really tolerate walking around inside or outside with no shoes/ hard soled slippers on anymore. I think it’s called neuropathy - impaired nerves.
No I was never diagnosed with CCI. My arachnoiditis diagnosis journey is a bit of a story this blog post is probably the best answer to that: beckyhillblog.com/2020/08/22/butterflies-in-the-dirt-a-new-diagnosis-arachnoditis-a-spinal-csf-leak/ I then went on to have arachnoiditis seen on MRI. It’s a very tough journey to diagnosis though as it’s seen as an extremely rare condition that there is little peer reviewed papers on currently. So it can be very hard to get a diagnosis in any country across the world sadly.
There is a doctor that will review your MRI plus tons of ideas and medical protocols to help AA on website I posted above. Also see CZcams channel doctor's, Dr Tennant and watch series on how to feel better with aa
Thank you for this update. What you are doing is marvelous and helps me anytime I have a flare I look for your latest! I just passed the 5 year mark on my stem cell therapy (bone marrow taken from hip, placed in IV) and I am still living in remission of sorts from the terrible pain - burning torso and spine, lightning in my legs and feet, pressure like a vise on my lumbar spine). I still walk on broken glass it seems at times, but the stem cells have reduced pain and limitations by 95%, with little risk (except losing $6K for nothing). I have no idea how such a simle procedure could make such a difference... google Dr. Sarah Davis for great video testimony - and news footage - of a credible doctor who also has arach and was able to REOPEN her practice after being disabled for many years. I suspect somehow the inflammation is suppressed in CNS. I know, you ask how can that be? All I know is I was on 900mg gabapentin for nearly 2 years (well, increasing levels of gabapentin up to 900mg at the end), now I'm not! I personally know (on FB) a dozen others who took the plunge and most of them were helped dramatically as well. Not all, but most. I can share the clinic I went to but I believe any competant physician can do this simple procedure... they just cannot MARKET it legally. Unfortunately many have taken advantage of the stem cell "wild west" to mislead and make $$$. I was fortunate to find good doctors. Also unfortunately, not enough money to be made by giving us our own stem cells to do the research to PROVE this clinically. But truth doesn't care what we know about it. It simply is. We must be willing to learn however we may. I share purely out of my gratitude for having excellent results to "treat" arachnoiditis from a lumbar puncture. I don't know where I would be without my stem cells having been given to me...
I am so glad stem cells have helped you so much! It’s great when you feel like you have ‘another chance at life’ with less disability! Long may it continue. I am glad the steroids work so well for me currently!
@@beckyhillblog Yes, methypred is the bomb... but very problematic for long term use... and some doctors don't get that. A friend with a different chronic pain condition was given 40 mg prednisone for years. She's been slowing lowering for a decade, but terrible side effects. I still use for occasional flares.
Dear Becky, The way you describe the symptoms are so spot on, i can relate with them for 100%.
Thanks for your encouragement- always appreciate that ‘me too’ connection!
Thanks so much for making this video - I felt so accepted while watching!
Crouching is tough for me. I do get thick knees + wateriness.
This whole CSF / AA circle is bizarre indeed :)
Was thinking of putting a treadmill below my High desk - but walking & working isn't feasible.
Otherwise I struggle to concentrate all day. I could add
- Word finding difficulties;
- a high serotonin sensitivity towards pain level
- Spasms in bladder & bowel
- blurry vision at 4-5 pm on.
Oh dear, I want to believe a csf leak is causing my AA and all this. But I'm also scared of an explorative surgery to fix it.
So far, it's a daily battle and feels so good to see you describing vividly the veryday feeling. My beloved ones can acknowledge our new day project through your video.
I am glad you found it helpful. I think we gain a lot through ‘shared experience’ … we also do have to find our own ways to manage our symptoms according to our lifestyles and life demands. I find it extremely hard to concentrate on many activities such as writing, typing, reading, working on computers/ phones for more than about 30-40mins at a time before the pain and cloudiness is too bad. It all feels so frustrating when we focus on all we can’t do… but equally compared to my many worse months spent mostly in bed - I can achieve a lot. As long as I manage my time and energy very carefully & accept my many limitations.
I hope you find the right way forward for you!
Always appreciate your videos Becky. I do fear that I have arachnoiditis as well as a spinal csf leak. The Chinese burn comment is exactly how I feel it. It’s a very specific part of my thoracic to the left. It feels like someone has rubbed my spine on a carpet but for me this gets worse the more active I have been and always as soon as I lie down in bed to sleep it flares. The weirdest head, visual and presyncope symptoms too. I relate to almost everything you say. Take care
Take care too… I hope it isn’t for your sake. But equally I hope you get the answers you need. It’s hard to know sometimes what is leak and what is arachnoiditis/ AA or general neuro inflammation or nerve damage from leak/ procedures. What a journey it is!
Wow… this makes so much sense.
I had an accident 5 years ago. Fell down a flight of stairs, Torn shoulder, neck herniations, thoracic and lumbar herniations and degenerative disc disease all the way through.
I also suffered a TBI, which I have lingering effects of that too.
Nerve issues in feet and temperature changes in feet and all over.
A nurse practitioner friend has suggested I might actually have this.
After listening to your testimony I think she might be right.
I have to lay down daily to relieve the head and neck pain. Head pressure specifically.
Can’t sit for long unless in a recliner. And the clincher for me was your description of the trying to regulate emotions to not have what I call a neurological event that happens at the height of any emotion. Be a good bad, sad happy angry anything
I can almost feel like a seizure at times
I would love to connect and any information you have to give me in terms of Diagnostics and what not please feel free to send to me much appreciated. Thank you so much.
I am sorry to hear that you are so unwell with few answers but I am glad that my videos connected with you. Regarding further info - really answers to most questions are contained in my videos and my blog posts at: beckyhillblog.com/category/arachnoiditis/ I hope you find the right way forward for you! With empathy & love!
I guarantee you have arachnoiditis
I get all of this. The bladder urgency is especially annoying. I had two weeks after patching where I could urinate like a normal person, with full bladder emptying and a feeling of satisfaction that I hadn't felt in years. It's definitely leak related and now I know that my body can function normally when sealed. Its all these niggling things that happen daily that add up and make this condition so hard to cope with. One day we will wee normally!
I am glad you got some relief for a bit. For me I think the residual damage is from the arachnoiditis as it tends to effect the bladder and has got worse over the years. But it’s a great thing if yours improved with a patch. That’s a good sign. Mine probably got worse with my last patch in sept 2017 unfortunately!! Take care and I hope you find more leak relief soon!
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
Becky I want to thank you for sharing your story, which in turn helped me discover that I have Adhesive Arachnoiditis after many years of severe back pain. Now I can focus on a plan to try manage the inflammation and improve my quality of life. A huge thank you
I am so glad it helped. I hope you do see some improvement soon.
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.
Hi- It is nice to see you again. You look good. I admire you and you help keep me inspired. Thanks for sharing your experience with having to keep moving. I will share it to hopefully get some of my family to understand why I keep moving. I don't like that it can make them feel like I don't care or something else is more important. And thanks for the links. I always appreciate new information. I need to get on the steroids but I can't find a local doctor (LA California) who will prescribe them for me. You say rod down the back, I say like an old cast iron diving suit. I use Frequency Medicine which I feel helps keep it at bay, helps with pain and really helps me mentally. I'm happy to share my experience with you if you are interested. I am in my 20th or so year. Our symptoms are very similar. Blessings, Ken
Yes the constant moving can appear like you are distracted or not listening etc - it can sometimes seem rude. But if people do understand it’s just not possible to override that then it does help. Us and others understanding our symptoms can help a lot with acceptance and working through things. I hope you find the right doctor to help you move forward. I think it’s hard all over the world to access steroids.
Dear Becky I can relate to many of your symptoms, I used to carry my shopping the same way as you, close into me, unfortunately my spinal leak has become much worse so I am unable to carry anything now. I use the same sleeping technique with pillow between legs. I can only sleep on my left side, no other position which causes my hip to be quite painful. I cannot tolerate any car journeys the bumps and jolts make my symptoms so much worse but when I was able to travel I was terrified of the speed bumps!!
I do not have arachnoiditus but have been very debilitated by the symptoms of the csf leak. Thank you for doing your videos, we need much more awareness of this horrible condition. Take care
I am so sorry to hear how poorly you are too. Thanks for taking the time to share your own experiences. It’s sometimes so hard to tell what exactly causes each things!! It’s also very hard when things get worse rather than better over time. I hope you find more better days in the future!
Video as always absolutely spot on. You look great xx
Thank you Aimee! Xx
Great video. This is me almost to the tee. It’s so hard to describe these many symptoms to people. I am now having many issues with diamox. Not sure what my next step will be. Thanks for sharing!
Thank you! I hope you find more relief soon.
I cannot stand more than 15 minutes without my back seizing up. No way could I walk 10K steps. I have to stop about 6 times in 1/8 of mile. I’m still working and it’s killing me.
I am so sorry to hear how bad things are for you. I haven’t always been able to walk that far - but the steroids etc have helped and I have always tried to maintain as much walking as able. Thankfully my case is currently mild. I would struggle to work though in an official capacity- all my work is voluntary or helping my husband with his business so completely flexible. I can’t think of many jobs that would work for me. So I feel for you having to try and maintain working. It must be unbearable. 😫
Im sorry I have arachnoiditis its awful....Im always having to move ...Gods Blessings and prayers
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. 😔
Oh my gosh! I just listened to the rest -- exact same with urinary too !!!
And the head pressure. Shopping… same same same
Those ‘me too’ moments can be very powerful right!! This blog post was my first after being diagnosed with arachnoiditis 5 years after my own ladder fall accident… beckyhillblog.com/2020/08/22/butterflies-in-the-dirt-a-new-diagnosis-arachnoditis-a-spinal-csf-leak/ I wrote it after a major flare I was treated in hospital for.
Becky thanx u for being so real , i also had accident , and they did a dicectomy , have had 2 epidurals for pain since , but your symptoms are exsactly what I have , how did you get it diagnosed as my doctor I don’t get much desire from her to help me solve my problem .. how did your doctor reach your diagnosis .. I live in South Africa .. much appreciated
I am so sorry to hear of your suffering. My case is quite complex as I was already diagnosed with a spinal CSF leak so I had been under two neurology teams. 5 years later arachnoiditis came to my attention over a period of time and it fitted with so many of my ongoing symptoms- so I presented the possibility to my doctors and around that time I happened to go into a MASSIVE flare anyway so ended up in hospital & ultimately they agreed to try steroids & they helped radically. I then went on to have arachnoiditis (lumbar nerve clumping) seen on MRI’s etc. To learn about the original diagnosis see:
beckyhillblog.com/2020/08/22/butterflies-in-the-dirt-a-new-diagnosis-arachnoditis-a-spinal-csf-leak/
Unfortunately it’s extremely hard to get a diagnosis in any country due to a serious lack of knowledge of these conditions. So it’s normally hard. All people can do is lots of research themselves then try and find an open minded doctor who has at least some experience if possible. Who might consider it. Also you need an experienced radiologist to read scans.
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!
@@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.
Dear Becky. Thanks so much for your videos, they help so much. I have lumbar aa and my mean symptoms are in my legs. I was wondering if you also experience red swollen feet when waking and standing long periods. I also feel needles and burning on the back on my legs. I fell these symptoms are more related to csf pressure than to inflammation but it is difficult to know.
Thank you for your reply and yes it’s often very hard to know for sure what is causing which symptoms. I do get a lot of symptoms in my legs and feet. My feet & legs don’t particularly swell - but they can go tingly or numb sitting or standing in one position too long. I often feel ‘crawling pins and needles’ in my legs too but not just at the back. Also my feet have some slight impairment of sensation so I can’t really tolerate walking around inside or outside with no shoes/ hard soled slippers on anymore. I think it’s called neuropathy - impaired nerves.
God bless you I also deal with this also .lost everyone had 18 yrs it is truly the devil s disease
I am so sorry you have been suffering as well for so long! 😔
Becky I read your article
Out of curiosity do you ever have issues with the glands in your neck ? Do they feel soar or inflamed ?
@@angiehorn9417 not particularly the glands in my neck. But definitely my neck itself is always stiff and painful.
Do you have tarlov cyst? Sounds like you may….
@@melwhelan2598 yes!
Becky I love your jumper where did you purchase from? X
H&M!
How diid you get diagnosed with Arachnoiditis? I have a lot of these weird symptoms. Were you ever diagnosed with craniocervical instability?
No I was never diagnosed with CCI. My arachnoiditis diagnosis journey is a bit of a story this blog post is probably the best answer to that: beckyhillblog.com/2020/08/22/butterflies-in-the-dirt-a-new-diagnosis-arachnoditis-a-spinal-csf-leak/ I then went on to have arachnoiditis seen on MRI. It’s a very tough journey to diagnosis though as it’s seen as an extremely rare condition that there is little peer reviewed papers on currently. So it can be very hard to get a diagnosis in any country across the world sadly.
There is a doctor that will review your MRI plus tons of ideas and medical protocols to help AA on website I posted above. Also see CZcams channel doctor's, Dr Tennant and watch series on how to feel better with aa
Thank you for this update. What you are doing is marvelous and helps me anytime I have a flare I look for your latest!
I just passed the 5 year mark on my stem cell therapy (bone marrow taken from hip, placed in IV) and I am still living in remission of sorts from the terrible pain - burning torso and spine, lightning in my legs and feet, pressure like a vise on my lumbar spine). I still walk on broken glass it seems at times, but the stem cells have reduced pain and limitations by 95%, with little risk (except losing $6K for nothing).
I have no idea how such a simle procedure could make such a difference... google Dr. Sarah Davis for great video testimony - and news footage - of a credible doctor who also has arach and was able to REOPEN her practice after being disabled for many years. I suspect somehow the inflammation is suppressed in CNS. I know, you ask how can that be? All I know is I was on 900mg gabapentin for nearly 2 years (well, increasing levels of gabapentin up to 900mg at the end), now I'm not! I personally know (on FB) a dozen others who took the plunge and most of them were helped dramatically as well. Not all, but most.
I can share the clinic I went to but I believe any competant physician can do this simple procedure... they just cannot MARKET it legally. Unfortunately many have taken advantage of the stem cell "wild west" to mislead and make $$$. I was fortunate to find good doctors.
Also unfortunately, not enough money to be made by giving us our own stem cells to do the research to PROVE this clinically. But truth doesn't care what we know about it. It simply is. We must be willing to learn however we may. I share purely out of my gratitude for having excellent results to "treat" arachnoiditis from a lumbar puncture. I don't know where I would be without my stem cells having been given to me...
I am so glad stem cells have helped you so much! It’s great when you feel like you have ‘another chance at life’ with less disability! Long may it continue. I am glad the steroids work so well for me currently!
@@beckyhillblog Yes, methypred is the bomb... but very problematic for long term use... and some doctors don't get that. A friend with a different chronic pain condition was given 40 mg prednisone for years. She's been slowing lowering for a decade, but terrible side effects.
I still use for occasional flares.
Dexamethasone crosses the BBB better than Prednisone.... Making you feel even better