1. < Spine Health

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

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Donald | @donfeld | Sep 24, 2019
In reply to @kimspr3 "I wonder if Dr. Tennant is the one reading the emails we send? At times I..." + (show)
@kimspr3

I wonder if Dr. Tennant is the one reading the emails we send? At times I don't think so??????

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Are you getting all the post that were there a few days ago regarding our condition a a? I don't see them anymore and it seems ever since I sent the tenants handbook to three doctors up there now it's all gone. Do you get the same results?

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Donald | @donfeld | Sep 24, 2019
In reply to @rachelarachgirl "Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012...." + (show)
@rachelarachgirl

Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012. An ABSOLUTE idiotic Dr was SUPPOSED to inject a combination of cortisone/dye into a herniated disc on my spine. Well, instead, he put both of the medications INTO my SPINAL CORD with NO WAY of removing it! Dye is poison to nerves, and I had an IMMEDIATE painful reaction so bad, my family removed me from North Memorial Hospital to Mayo Clinic IMMEDIATELY. Where they compared the MRI from North Memorial to the one they took after the procedure. And my ALL OF MY NERVES were ALREADY in a "sticky, hairball at the bottom of my spinal cord sac". That's how my specialist explains it in layman's terms.
He also says that if anyone asks how to describe the pain, he told me to tell them "it's worse than someone with stage 4 bone cancer".
I would just like to open a line of communication with ANYONE ELSE who understands what we're going through. I've felt so alone, depressed, misunderstood and have NEVER spoke to, let alone met ANYONE else with Arachnoiditis. PLEASE feel free to respond with your story, and forward mine to anyone else you think might understand me. And I'd love to talk to ANYONE who is the partner, so I can try and understand how THEY FEEL. I think that's JUST as important if you are in a relationship, (or want to be) and I REALLY want to hear it from their point of view. Then I can explain it to someone I might get serious with, so they'll know EXACTLY what to expect.
Thank you for reading my story. I look forward to hearing from you or anyone ELSE!
Rachel

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I am fairly new to this condition but I'm getting the runaround and all they want to do is meet Lee give me a stimulator which is not going to happen. I appreciate what you're going through when it's a shame that there's not something more happening for us as I sent the handbook of tenant to the Mayo to see if get some reaction but none yet. I'm not giving up and so should you. Look into pemf treatment as I think this can help us but I haven't found anybody who has used it for yet but I think this could be part of the solution.

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Donald | @donfeld | Sep 24, 2019
In reply to @JustinMcClanahan "Hello @rachelarachgirl, welcome to Connect. You have found a great place to meet others going through..." + (show)
@JustinMcClanahan

Hello @rachelarachgirl, welcome to Connect. You have found a great place to meet others going through similar situations as you are currently facing. While we wait for the other members already in this discussion, I would like to also invite @thelmalouise76, @ledgerwp, @jlfisher56, @lconroy, @annmaria, and @galady to this discussion to share their experiences with you on living with arachnoiditis.

@rachelarachgirl, if you are comfortable sharing more, you mentioned that your physician at Mayo Clinic helped with your diagnosis and recognized your pain, was there any recommendation on controlling your pain or what you can do moving forward?

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Has anybody out there tried pemf treatment? If so let me know because it sounds like something that might work cuz I have a neighbor that swears by it and has changed his life with pain and sleep. It increases the blood flow which is what helps the nerves and your pain as well as sleep. Before I purchase it I just want to see if anybody out there has any results or tried it. Thanks, Don

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Donald | @donfeld | Sep 24, 2019
In reply to @joanmahon "What part of Mayo did it go to and which of Clinics (name?). When I have..." + (show)
@joanmahon

What part of Mayo did it go to and which of Clinics (name?). When I have appt at Spine Center in JAX will see how they handle it. Chief in Neurology knows I will be asking for suggestions when I come in to Spine Center. Thank you.

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Joan, I haven't heard anything yet although I did check to see what was going on with me and these doctors and they said they are doing some conferences and discussions between the doctors to see what how they're going to treat me in what kind of come back they're going to do Derek. One of the doctors weren't even knowledge it and would not give me a decent answer and I'm really upsetting. I will keep you informed if I hear anything but I would think they would least look at it to see if there's anything there that's that's positive or something they can use or help us because we know that the handbook does help and at least it gives us some direction rather than nothing. No stimulator implant for me and which two doctors told me at the Mayo don't do it. Kind regards, Don

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joanmahon | @joanmahon | Sep 24, 2019
In reply to @kimspr3 "I wonder if Dr. Tennant is the one reading the emails we send? At times I..." + (show)
@kimspr3

I wonder if Dr. Tennant is the one reading the emails we send? At times I don't think so??????

Jump to this post

Please be patient. He has RETIRED but keeps a very small staff to help with his THREE websites and RESEARCH. In my long experience he eventually gets back to you. However I have been a patient of his office since 2017 and he has still been responding although it can take several weeks. This disease has thousands of distressed patients in the US and many more around the world. Please please read about the disease. The only treatment is for PAIN and we are in a very fragile situation in terms of pain meds.

I just came across a relatively new website from the NIH (National Institute of Health.) which lists Arachnoiditis as a Rare Disease and excellent info on symptoms and treatment. But we still suffer from a lack of medical personnel to atten to this. Let’s hope that medical schools finally teach more on “rare diseases” — of which there are hundreds

By the way, you might like to know ARC and AA HAs now been recognized by the SSA as a reason for Disability. I think this happened only this year.

I am still in Jacksonville and having tough time responding to all. Please forgive. I highly recommend the Mayo Pain Rehabilitation Center. The concept is to learn COPING STRATEGIES with intense exercise, occupational therapy and even biofeedback. ANYONE with conditions causing PAIN should consider this Mayo program. Am a total convert.
Soft hug to all, Joan

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3 replies
Donald | @donfeld | Sep 24, 2019
In reply to @joanmahon "Please be patient. He has RETIRED but keeps a very small staff to help with his..." + (show)
@joanmahon

Please be patient. He has RETIRED but keeps a very small staff to help with his THREE websites and RESEARCH. In my long experience he eventually gets back to you. However I have been a patient of his office since 2017 and he has still been responding although it can take several weeks. This disease has thousands of distressed patients in the US and many more around the world. Please please read about the disease. The only treatment is for PAIN and we are in a very fragile situation in terms of pain meds.

I just came across a relatively new website from the NIH (National Institute of Health.) which lists Arachnoiditis as a Rare Disease and excellent info on symptoms and treatment. But we still suffer from a lack of medical personnel to atten to this. Let’s hope that medical schools finally teach more on “rare diseases” — of which there are hundreds

By the way, you might like to know ARC and AA HAs now been recognized by the SSA as a reason for Disability. I think this happened only this year.

I am still in Jacksonville and having tough time responding to all. Please forgive. I highly recommend the Mayo Pain Rehabilitation Center. The concept is to learn COPING STRATEGIES with intense exercise, occupational therapy and even biofeedback. ANYONE with conditions causing PAIN should consider this Mayo program. Am a total convert.
Soft hug to all, Joan

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Joan, I did it once and it was helpful to a point that a year later my pain got lot worse a fact with three operations later I couldn't forget about the pain which is what they want me to do. I think the best part of it is learning to do the exercises in and keep exercising which really helps the body. Had problems with the doctor who runs it as he was very informative but had some other issues which I didn't care for. I'm not discouraging you from doing it it's just that when the pain gets to a point but you just can't forget about it which is the concept it doesn't work for me. Have severe radiation damage in my head and neck and shoulders as well as losing my teeth from radiation which is something you really can't forget about with the pain I'm going through there. I was taught by them to try and forget about it but it's getting worse and I feel going back to BRC is not going to help me at this point. As I mentioned I sent dr. Tenants handbook the doctors at Mayo maybe there's something that they can start working on if it helps so many people and I hope they keep an open mind. Kind regards.

REPLY
joanmahon | @joanmahon | Sep 24, 2019
In reply to @rachelarachgirl "Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012...." + (show)
@rachelarachgirl

Hi. My name is Rachel, and I was diagnosed with Adhesive Arachnoiditis in June of 2012. An ABSOLUTE idiotic Dr was SUPPOSED to inject a combination of cortisone/dye into a herniated disc on my spine. Well, instead, he put both of the medications INTO my SPINAL CORD with NO WAY of removing it! Dye is poison to nerves, and I had an IMMEDIATE painful reaction so bad, my family removed me from North Memorial Hospital to Mayo Clinic IMMEDIATELY. Where they compared the MRI from North Memorial to the one they took after the procedure. And my ALL OF MY NERVES were ALREADY in a "sticky, hairball at the bottom of my spinal cord sac". That's how my specialist explains it in layman's terms.
He also says that if anyone asks how to describe the pain, he told me to tell them "it's worse than someone with stage 4 bone cancer".
I would just like to open a line of communication with ANYONE ELSE who understands what we're going through. I've felt so alone, depressed, misunderstood and have NEVER spoke to, let alone met ANYONE else with Arachnoiditis. PLEASE feel free to respond with your story, and forward mine to anyone else you think might understand me. And I'd love to talk to ANYONE who is the partner, so I can try and understand how THEY FEEL. I think that's JUST as important if you are in a relationship, (or want to be) and I REALLY want to hear it from their point of view. Then I can explain it to someone I might get serious with, so they'll know EXACTLY what to expect.
Thank you for reading my story. I look forward to hearing from you or anyone ELSE!
Rachel

Jump to this post

Rachel. My story is similar. Started 30 years ago and FINALLY diagnosed by Dec 2012. By an eminence in ARACHNOIDITIS. Am currently at Mayo JAX for amazing program of Pain Rehabilitation. This program is also available in other Mayo locations. But it is very intense and am in my final week so have no more energy right now. We get a lot of homework in the way of Planning for how we will carry out the principles and tools learned once we get home.

Take care all. It’s a long learning process. Keep the faith.
Joan

REPLY
2 replies
Donald | @donfeld | Sep 24, 2019
In reply to @joanmahon "Please be patient. He has RETIRED but keeps a very small staff to help with his..." + (show)
@joanmahon

Please be patient. He has RETIRED but keeps a very small staff to help with his THREE websites and RESEARCH. In my long experience he eventually gets back to you. However I have been a patient of his office since 2017 and he has still been responding although it can take several weeks. This disease has thousands of distressed patients in the US and many more around the world. Please please read about the disease. The only treatment is for PAIN and we are in a very fragile situation in terms of pain meds.

I just came across a relatively new website from the NIH (National Institute of Health.) which lists Arachnoiditis as a Rare Disease and excellent info on symptoms and treatment. But we still suffer from a lack of medical personnel to atten to this. Let’s hope that medical schools finally teach more on “rare diseases” — of which there are hundreds

By the way, you might like to know ARC and AA HAs now been recognized by the SSA as a reason for Disability. I think this happened only this year.

I am still in Jacksonville and having tough time responding to all. Please forgive. I highly recommend the Mayo Pain Rehabilitation Center. The concept is to learn COPING STRATEGIES with intense exercise, occupational therapy and even biofeedback. ANYONE with conditions causing PAIN should consider this Mayo program. Am a total convert.
Soft hug to all, Joan

Jump to this post

Joan, I have looked real hard on PEMF therpy and you will find it real intetesting. Found some great websites and lot of documentation as well as people that I know who are using it and find it unbelievable regarding pain and sleeping as they increased blood flow which is crucial to what we need. I urge you to check it out as it's out of the box and that's why you'll never hear it from any doctor. Look up the Bemer and I found with a 45 day guranteed that you can't lose for only $900

REPLY
Donald | @donfeld | Sep 24, 2019
In reply to @joanmahon "Rachel. My story is similar. Started 30 years ago and FINALLY diagnosed by Dec 2012. By..." + (show)
@joanmahon

Rachel. My story is similar. Started 30 years ago and FINALLY diagnosed by Dec 2012. By an eminence in ARACHNOIDITIS. Am currently at Mayo JAX for amazing program of Pain Rehabilitation. This program is also available in other Mayo locations. But it is very intense and am in my final week so have no more energy right now. We get a lot of homework in the way of Planning for how we will carry out the principles and tools learned once we get home.

Take care all. It’s a long learning process. Keep the faith.
Joan

Jump to this post

PRC is great for getting off of opioids which they did that for me which I can bless them for. Today I am not on opioids any longer and I'm trying to find alternative options such as I mentioned to you. I wish you all the best with your classes but the hardest thing is after you leave trying to keep up with their formula which I found it extremely difficult in my way of life. I wish you all the best and let's keep in touch

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1 reply
Donald | @donfeld | Sep 24, 2019

Take a look at Dr Tennat hand book and try and follow as best you can. It's a start and go to his website. Forest Tennant in California. I am looking out of the box with PEMF therpy which NASA IS USING! I met a neighbor is using the mat and for the first time he sleeping all night and pain reduce 80%. King regards,

Shared files

AA-Basic-Handbook(1) (AA-Basic-Handbook1.pdf)

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