Thank you for sharing…as a former nurse educator, I feel like videos like this one you just made and shared could be used in nurse education and are critically important for building empathic and compassionate nurses to care for people when they need it. I am sorry you have had this recent flare up, praying for you in the Northwest U.S.
Thank you so much for your kind words. I make my videos to educate and empower patients but also to educate and help doctors, nurses and other medical staff become more aware of particularly patients with rarer diseases. Compassion is so important and can be such a significant part of the healing journey. I have appreciated every member of medical staff who helped me kindly and compassionately over the past week so much!
Thank you for sharing your experiences with Arachnoiditis. I suffer as well but not to the degree that you do. I hate the icy hot feet and the feeling that someone is gripping my lower spine. Your experience is preparing me for what to expect in the year(s) to come.
Thank you for your comment, I am so sorry that you too have arachnoiditis. I really hope that you do not have to suffer the full extent of the explosive flares and find doctors who will help to support, treat and prevent further damage. Sending empathy & love!
I’m sorry you have gone through a flare. It’s horrible but thank God you got your IV steroids and back to your baseline. One recommendation as a person who received two times 5 days IV steroids and as well as several medrol packs, please monitor your blood sugar and adrenal function. And while on steroids please do a strict diet for salt and sugar, try to eat clean as possible. Ps. You are so strong. I wouldn’t even imagine videoing myself while going through a flare. Take care!
Thank you - I am very careful and cautious whilst on steroids and have great doctors who monitor and manage things well. This is my third IV in 2 years - so have some experience and also meds to help bones and strict instructions on how quickly to come down to alternate days to protect adrenal function. There are always risks but we are managing them as well as possible. Thank you for your advice - much appreciated by me and to help others!
Becky, my Heart goes out to you. I’ve lived with AA for many years. Know you are admired and Brave. Don’t give up, PM me if you would like support anytime. Only those who live this can understand. Sending strength, sincerely L ❤️🙏❤️
No it never goes away completely. I have many many baseline symptoms and pain all day every day. But it does reverse the acute flares & takes me back to my baseline very radically & quickly which I believes helps to stop it progressing too quickly. I was 5 years in when I first used IV steroids. I have only needed them 3 times in the past 3 years since diagnosis. They do not work for everyone though. It partly depends how bad the AA is. My AA seems comparatively mild hence my great response. Really steroids best work when the inflammation is becoming out of control - like in a flare. The rest of the time I take about 5mg prednisolone (oral steroid) every other day to try and stay on top of it and stop it escalating.
Yes I had a CTM in Sept 2017 and I was extremely poorly from it. I already had undiagnosed underlying arachnoiditis and was in a flare - the CTM caused a massive seizure and made me worse. At the time we thought it had made me leak more so an epidural blood patch was organised a week later - that too just added to my suffering for a long time. It took months to recover from it all. But we were all doing what seemed right for a spinal CSF leak. So I am not angry at anyone. It was a good investigation and treatment path for a spinal CSF leak (IF YOU DONT HAVE ARACHNOIDITIS TOO!!)
I have (or had) a leak from multiple lumbar punctures and have had 4 patches and surgery for the leak (glue, tachosil, suture). Basically I am ok and can be upright and work all day, but I also have frequent burning of feet, hands, neck pain, tinnitus, burning eyes and spotted hands. I wonder if I still have a leak or maybe arachnoiditis, however I have no spine pain. Do you still have a leak?
Yes my neurologist thinks I still have a small leak. It was seen on scans in Sept 2019 - when I last had full spinal CSF leak MRI’s. I also think I may sometimes seep spinal fluid from my lumbar spine where the Arachnoiditis clumped area is. That can be common too! But it’s very hard to know what is what & what causes what symptoms exactly sometimes. My Neuro thinks my hypersensitivity to ICP changes (amidst other things) indicates an ongoing small leak as well as my having arachnoiditis.
I’m back in low pressure, did you fluctuate much? I had high pressure symptoms for months with nerve pain all over and now I’m back in low pressure with terrible neck pain 😞 I’ve fluctuated around 5 times over the last year I’m forced to lie down atm
So sorry to hear that… tbh I find it impossible to tell what is high pressure, what is low and what are Neuro inflammatory headaches. So I find it very difficult to say. My pressure definitely is hypersensitive and fluctuates a lot. But I do now know what I thought were low pressure flares/ leaking more - are actually arachnoiditis flares that are turned around with steroids. So they were obviously mainly caused by Neuro inflammation - which could effect flow, mean more seepage from thin dura where clumping is or causing more leaking from my leak - but once Neuro inflammation is dealt with - I can be upright again and things eased a lot - although always there in background. So who really knows?
@@beckyhillblog that’s good to know I’m still trying to figure out if I have a leak and arachnoiditis so mine are like this: Low pressure symptoms are Sore neck/pulling feeling that’s really painful headaches and eye pain Relieved by: lying down, caffeine, high salt diet and I think electrolytes help High pressure symptoms are: Nerve pain burning arms, feet, hands and legs Occasional eye pain and occasional stabbing headaches and stabbing pains in legs etc Pain around ribs, and a burning spine mainly invetween my shoulder blades I need to stand and walk to relieve the symptoms and I find dandelion leaf tea and vitamin B1 help relieve the symptoms, lying on my spine or sitting and putting any pressure on my spine make it much much worse With both of these I get brain fog a popping left ear (used to be both ears) and my ears always ring but are worse when I lie down I hope that helps? does this sound similar?
@@beckyhillblog I have so much love, respect and adoration for you and your partner, my partner has been amazing through this… My channel has been dead ever since this happened, I find it amazing that even through all of this you’re selflessly telling your story to help others! You’re a brave woman and the very Essence of an arachnoiditis warrior Kia kaha
@@NatesEscape sorry I find it far to complicated to differentiate and these days it all kind of blurs into one messy dysfunctional intracranial pressure / nervous system. As I say I rarely even try to discern which is what! Sorry… all we can do is try and study and understand our own unique bodies and do what helps us… that can shift and change over time. Then new diagnosis and revelations can help further. But I find it too difficult to comment or compare with others.
Well I’ve been on this journey for almost a year now but the real battle started today, I sent my MRI off to an expert in America and it turns out I have early signs of arachnoiditis 😞 I’ll fight as long as I can and I just wanted to say thank you for fighting and being an inspiration for us ❤️🩹
I am so sorry to hear that Nate - but glad you are getting some answers. I hope you find a doctor who will help you moving forward and trial steroids/ anti-inflammatories that help. I generally follow Dr Tennants protocol. Thankfully I have doctors who were willing to try. Although we can’t get ketoralac in U.K. so have to use diclofenac. (Although these days I only use it for flares and recovery) Each and every time one of us is diagnosed it is helping to raise awareness. It’s a horrendous illness to have - but there is purpose in the fight when others are helped too. And there is a collective feeling of togetherness as we face our suffering alongside one another. I hope that you find more relief soon. And remember if you do have any more invasive procedures such as LPs/ CTM or EBP - tread cautiously and look for doctors who are willing to treat you with steroids or similar of you do flare. This can help stop progression.
@@beckyhillblog it was Dr Tennant that sent me back the report I’ll start following his protocol asap, I’ll try and get an appointment with my doctor to see if I can get the medication he says to take, I hope they’re available in Australia. I’m so scared but at the same time I’m glad I’m getting answers
@@NatesEscape yes it takes quite a while to get your head around it all. I hope you find doctors to help. It takes very open minded doctors to listen to Dr Tennant and consider the diagnosis and how to treat it. You are best to go armed with information and medical papers to support your case. Assume all your doctors will either not really have heard of arachnoiditis or have VERY limited understanding in thinking ‘it’s so rare you can’t have it’ so you need to be ready to respectfully fight your ground. Particularly if it’s early stages so lacking in clear scan evidence. At first arachnoiditis is often more a clinical diagnosis based on symptoms as scan evidence can be debated and very very subtle at first. So educate yourself - be mindful that doctors may well not accept Dr Tennants suggestions - despite his expertise. And if you fail - then push to find the right doctor who will listen and help you. It’s often best to ask other arachnoiditis sufferers in your country who they go to and whether they may be open to new patients. Dr T protocol is a very new concept for many doctors. In the U.K. you can access LDN privately if you have a spinal CSF leak or arachnoiditis diagnosis - but it can be very very hard for people to access the steroids. So try for what you can access asap and then look for more open minded doctors to hopefully help with the rest. The difficult thing is early stage arachnoiditis needs halting of progression with anti inflammatories that cross the blood brain barrier - methylprednisolone, prednisolone, dexamethasone, ketoralac, diclofenanc, LDN etc / combination. But doctors don’t like giving the drugs without ‘clear cut’ evidence. Which is tricky in early stages… hence we often have to fight to be heard. I pray you will have wisdom. I have some medical paper links on the bottom of my arachnoiditis blog posts which might help.
We also have to fight whilst going through our own journey of grieving and acceptance which is very very painful in itself. So be kind to yourself and give yourself time to process and strengthen for the inevitable battles moving forward.
This article of mine has info in the small print at the bottom about medical papers regarding steroid use in arachnoiditis - beckyhillblog.com/2022/07/12/arachnoiditis-flare-iv-methylprednisolone-treatment-july-2022-video-diaries/
thank you for sharing! I feel not alone and for you i send you all the best and pray you will get better!🙏
Thank you - I am thankful to be better than I used to be and to have not relapsed since then (1 year ago!) I pray the best for you also!
Thanks for doing this video!
Thank you for sharing…as a former nurse educator, I feel like videos like this one you just made and shared could be used in nurse education and are critically important for building empathic and compassionate nurses to care for people when they need it. I am sorry you have had this recent flare up, praying for you in the Northwest U.S.
Thank you so much for your kind words. I make my videos to educate and empower patients but also to educate and help doctors, nurses and other medical staff become more aware of particularly patients with rarer diseases. Compassion is so important and can be such a significant part of the healing journey. I have appreciated every member of medical staff who helped me kindly and compassionately over the past week so much!
keep safe always praying your fast recovery
Thank you!
Thank you for sharing your experiences with Arachnoiditis. I suffer as well but not to the degree that you do. I hate the icy hot feet and the feeling that someone is gripping my lower spine. Your experience is preparing me for what to expect in the year(s) to come.
Thank you for your comment, I am so sorry that you too have arachnoiditis. I really hope that you do not have to suffer the full extent of the explosive flares and find doctors who will help to support, treat and prevent further damage. Sending empathy & love!
I’m sorry you have gone through a flare. It’s horrible but thank God you got your IV steroids and back to your baseline. One recommendation as a person who received two times 5 days IV steroids and as well as several medrol packs, please monitor your blood sugar and adrenal function. And while on steroids please do a strict diet for salt and sugar, try to eat clean as possible.
Ps. You are so strong. I wouldn’t even imagine videoing myself while going through a flare. Take care!
Thank you - I am very careful and cautious whilst on steroids and have great doctors who monitor and manage things well. This is my third IV in 2 years - so have some experience and also meds to help bones and strict instructions on how quickly to come down to alternate days to protect adrenal function. There are always risks but we are managing them as well as possible. Thank you for your advice - much appreciated by me and to help others!
Becky, my Heart goes out to you. I’ve lived with AA for many years. Know you are admired and Brave. Don’t give up, PM me if you would like support anytime. Only those who live this can understand. Sending strength, sincerely L ❤️🙏❤️
Thank you for your kind words! We will all keep fighting this dreadful disease together!
Hi, are you still there? Ive finally find combination of diets and electricity release exercises which are really help. I dont use any meds anymore.
I am glad you have found things to help you!
Great video may god bless you
Thank you!
Hi! Did your arachnoiditis go away completely? Mine started 13 years ago. Is it too late to try this treatment out?
No it never goes away completely. I have many many baseline symptoms and pain all day every day. But it does reverse the acute flares & takes me back to my baseline very radically & quickly which I believes helps to stop it progressing too quickly. I was 5 years in when I first used IV steroids. I have only needed them 3 times in the past 3 years since diagnosis. They do not work for everyone though. It partly depends how bad the AA is. My AA seems comparatively mild hence my great response. Really steroids best work when the inflammation is becoming out of control - like in a flare. The rest of the time I take about 5mg prednisolone (oral steroid) every other day to try and stay on top of it and stop it escalating.
Have you had a ct myelogram?
This looks awful, hang in there and stay strong ❤️
I’ve found B1 and dandelion tea help when the pressure gets too much
Yes I had a CTM in Sept 2017 and I was extremely poorly from it. I already had undiagnosed underlying arachnoiditis and was in a flare - the CTM caused a massive seizure and made me worse. At the time we thought it had made me leak more so an epidural blood patch was organised a week later - that too just added to my suffering for a long time. It took months to recover from it all.
But we were all doing what seemed right for a spinal CSF leak. So I am not angry at anyone. It was a good investigation and treatment path for a spinal CSF leak (IF YOU DONT HAVE ARACHNOIDITIS TOO!!)
@@NatesEscape my neurologist wants me to try a little acetazolomide again at night to see if that helps probable higher pressure morning headaches.
@@beckyhillblog do your ears ring worse at while lying down? They’re checking my MRI for arachnoiditis this week
Yeah Im really nervous about my ct myelogram, I hope it won’t make me worse
Thanks for your video, I also use steroides for flare but only in tabs..im happy that this drugs works...
They do help a lot! I am glad you are helped by them!
I have (or had) a leak from multiple lumbar punctures and have had 4 patches and surgery for the leak (glue, tachosil, suture). Basically I am ok and can be upright and work all day, but I also have frequent burning of feet, hands, neck pain, tinnitus, burning eyes and spotted hands. I wonder if I still have a leak or maybe arachnoiditis, however I have no spine pain. Do you still have a leak?
Yes my neurologist thinks I still have a small leak. It was seen on scans in Sept 2019 - when I last had full spinal CSF leak MRI’s. I also think I may sometimes seep spinal fluid from my lumbar spine where the Arachnoiditis clumped area is. That can be common too!
But it’s very hard to know what is what & what causes what symptoms exactly sometimes.
My Neuro thinks my hypersensitivity to ICP changes (amidst other things) indicates an ongoing small leak as well as my having arachnoiditis.
I’m back in low pressure, did you fluctuate much? I had high pressure symptoms for months with nerve pain all over and now I’m back in low pressure with terrible neck pain 😞
I’ve fluctuated around 5 times over the last year
I’m forced to lie down atm
So sorry to hear that… tbh I find it impossible to tell what is high pressure, what is low and what are Neuro inflammatory headaches. So I find it very difficult to say. My pressure definitely is hypersensitive and fluctuates a lot.
But I do now know what I thought were low pressure flares/ leaking more - are actually arachnoiditis flares that are turned around with steroids. So they were obviously mainly caused by Neuro inflammation - which could effect flow, mean more seepage from thin dura where clumping is or causing more leaking from my leak - but once Neuro inflammation is dealt with - I can be upright again and things eased a lot - although always there in background.
So who really knows?
@@beckyhillblog that’s good to know I’m still trying to figure out if I have a leak and arachnoiditis so mine are like this:
Low pressure symptoms are
Sore neck/pulling feeling that’s really painful headaches and eye pain
Relieved by: lying down, caffeine, high salt diet and I think electrolytes help
High pressure symptoms are:
Nerve pain burning arms, feet, hands and legs
Occasional eye pain and occasional stabbing headaches and stabbing pains in legs etc
Pain around ribs, and a burning spine mainly invetween my shoulder blades I need to stand and walk to relieve the symptoms and I find dandelion leaf tea and vitamin B1 help relieve the symptoms, lying on my spine or sitting and putting any pressure on my spine make it much much worse
With both of these I get brain fog a popping left ear (used to be both ears) and my ears always ring but are worse when I lie down
I hope that helps? does this sound similar?
@@beckyhillblog I have so much love, respect and adoration for you and your partner, my partner has been amazing through this…
My channel has been dead ever since this happened, I find it amazing that even through all of this you’re selflessly telling your story to help others!
You’re a brave woman and the very Essence of an arachnoiditis warrior
Kia kaha
@@NatesEscape sorry I find it far to complicated to differentiate and these days it all kind of blurs into one messy dysfunctional intracranial pressure / nervous system. As I say I rarely even try to discern which is what! Sorry… all we can do is try and study and understand our own unique bodies and do what helps us… that can shift and change over time. Then new diagnosis and revelations can help further. But I find it too difficult to comment or compare with others.
Well I’ve been on this journey for almost a year now but the real battle started today, I sent my MRI off to an expert in America and it turns out I have early signs of arachnoiditis 😞
I’ll fight as long as I can and I just wanted to say thank you for fighting and being an inspiration for us ❤️🩹
I am so sorry to hear that Nate - but glad you are getting some answers. I hope you find a doctor who will help you moving forward and trial steroids/ anti-inflammatories that help.
I generally follow Dr Tennants protocol. Thankfully I have doctors who were willing to try. Although we can’t get ketoralac in U.K. so have to use diclofenac. (Although these days I only use it for flares and recovery)
Each and every time one of us is diagnosed it is helping to raise awareness. It’s a horrendous illness to have - but there is purpose in the fight when others are helped too. And there is a collective feeling of togetherness as we face our suffering alongside one another.
I hope that you find more relief soon. And remember if you do have any more invasive procedures such as LPs/ CTM or EBP - tread cautiously and look for doctors who are willing to treat you with steroids or similar of you do flare. This can help stop progression.
@@beckyhillblog it was Dr Tennant that sent me back the report I’ll start following his protocol asap, I’ll try and get an appointment with my doctor to see if I can get the medication he says to take, I hope they’re available in Australia. I’m so scared but at the same time I’m glad I’m getting answers
@@NatesEscape yes it takes quite a while to get your head around it all. I hope you find doctors to help. It takes very open minded doctors to listen to Dr Tennant and consider the diagnosis and how to treat it.
You are best to go armed with information and medical papers to support your case. Assume all your doctors will either not really have heard of arachnoiditis or have VERY limited understanding in thinking ‘it’s so rare you can’t have it’ so you need to be ready to respectfully fight your ground. Particularly if it’s early stages so lacking in clear scan evidence. At first arachnoiditis is often more a clinical diagnosis based on symptoms as scan evidence can be debated and very very subtle at first.
So educate yourself - be mindful that doctors may well not accept Dr Tennants suggestions - despite his expertise. And if you fail - then push to find the right doctor who will listen and help you. It’s often best to ask other arachnoiditis sufferers in your country who they go to and whether they may be open to new patients.
Dr T protocol is a very new concept for many doctors. In the U.K. you can access LDN privately if you have a spinal CSF leak or arachnoiditis diagnosis - but it can be very very hard for people to access the steroids. So try for what you can access asap and then look for more open minded doctors to hopefully help with the rest.
The difficult thing is early stage arachnoiditis needs halting of progression with anti inflammatories that cross the blood brain barrier - methylprednisolone, prednisolone, dexamethasone, ketoralac, diclofenanc, LDN etc / combination. But doctors don’t like giving the drugs without ‘clear cut’ evidence. Which is tricky in early stages… hence we often have to fight to be heard.
I pray you will have wisdom. I have some medical paper links on the bottom of my arachnoiditis blog posts which might help.
We also have to fight whilst going through our own journey of grieving and acceptance which is very very painful in itself. So be kind to yourself and give yourself time to process and strengthen for the inevitable battles moving forward.
This article of mine has info in the small print at the bottom about medical papers regarding steroid use in arachnoiditis - beckyhillblog.com/2022/07/12/arachnoiditis-flare-iv-methylprednisolone-treatment-july-2022-video-diaries/