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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kimspr3 | @kimspr3 | Sep 16, 2019
In reply to @joanmahon "Hi! So much to respond to but am not in a GOOD position right now. Am..." + (show)
@joanmahon

Hi! So much to respond to but am not in a GOOD position right now. Am attending an excellent 3 week program on Pain Rehabilitation at Mayo Clinic Jacksonville and just finished week 1. Was so sad that you were left with bad impression about Dr Tennant. Wish I could explain. But he is no longer doing patient care only Education. Please go to his websites for more help. He is a wonderfully kind doc but is now in semi retirement since closing the Clinic in Nov 2017. DEA FORced it upon him totally unfairly. He is in his late 70’s and preferred to retire before dealing any more with crazy DEA. Have been an ARC patient for at least 15 years and finally diagnosed in 2012. So I totally understand how everyone gets the run-around with this disease listed in NORD (National Organization for Rare Disorders). This might be a good resource for you. Look please for Dr Tennant’s websites on Hope and others. There is an excellent manual for Caregivers of ARC patients. Print and refer to it daily! Big hug to all with much understanding. J

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Thank You so much Joan, I feel stupid, what is ARC? I just noticed your reply. NORD has been good. I have asked if they would have a Summit in NJ.
I will email again asking about my fax. I was diag. with AA at Johns Hopkins, my pain management dr. said I don't have it. I had a MRI at my request he ordered it and said I don't. I called he Director of Radiology he told me I do but it was not under comments. This is awful. I have so much nerve damage and scaring. My husband told me to let it go he's right but I can't. I wonder if anyone has AA and horrible sweating, Getting worse and worse. Today is a bad day. On the 9th I had surgery, Pelvic reconstruction the way you are positioned for it made spine worse. Something is wrong different and Don't know why. I didn't mean to go off track I can't sit

REPLY
1 reply
kimspr3 | @kimspr3 | Sep 16, 2019
In reply to @johnbishop "I've never tried to fax any information to Dr. Tennant but maybe it was not received..." + (show)
@johnbishop

I've never tried to fax any information to Dr. Tennant but maybe it was not received on their end or got lost in the shuffle of paperwork? Understandable to be upset and disappointed. You might try faxing it again.

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Thank You John, I'll see if he responds to my email. When I saw Dr. Tennant's reply I never expected to read about his new book and I hope you feel better. It doesn't seem it came from him? It was uncomfortable and un-important. I won't contact him anymore.

REPLY
1 reply
joanmahon | @joanmahon | Sep 16, 2019
In reply to @kimspr3 "Thank You so much Joan, I feel stupid, what is ARC? I just noticed your reply...." + (show)
@kimspr3

Thank You so much Joan, I feel stupid, what is ARC? I just noticed your reply. NORD has been good. I have asked if they would have a Summit in NJ.
I will email again asking about my fax. I was diag. with AA at Johns Hopkins, my pain management dr. said I don't have it. I had a MRI at my request he ordered it and said I don't. I called he Director of Radiology he told me I do but it was not under comments. This is awful. I have so much nerve damage and scaring. My husband told me to let it go he's right but I can't. I wonder if anyone has AA and horrible sweating, Getting worse and worse. Today is a bad day. On the 9th I had surgery, Pelvic reconstruction the way you are positioned for it made spine worse. Something is wrong different and Don't know why. I didn't mean to go off track I can't sit

Jump to this post

Please, please NEVER feel stupid. My mistake was in using the initials which refer to Arachnoiditis, and AA, as Adhesive Arachnoiditis.

The grim reality is that people with Arachnoiditis have been far too long ignored, some of this stemming from it being considered a "Rare Disorder." There are several causes for Arachnoiditis, and many years ago it came from the usage of Pantopaque, a chemical that helped docs diagnose where the spinal problem was...so many years ago, that MRI´s didn´t exist. That was my own cause for it. Once Pantopaque was taken off the market in the 70´s the medical profession thought that would be the end of ARC. And truly began to ignore it. Those affected often died of other causes before it truly evolved into the horrible chronic pain symptoms of scar tissue surrounding the nerves--and this takes sometimes up to 20 and 30 years. Hence docs really received little or no education in it. Although there are other factors involved in their ignorance. It is a very complicated story.

If you look for the Burton Report, you will see much more accurate information than what I can give you here. At this point there are practically no doctors left who have been trained or educated in it. Only the "old timer docs" KNOW, and remember, but are retired and no longer available. In my past I found Dr. Antonio Aldrete, who diagnosed me with a full Independent Examiner Report in 2010, provided so I could show my GP. You can google him....he has written extensively on the subject. But he is no longer in the United States, and when I saw him he was ready to retire.

The next doc I found in California was Dr. Tennant, and I only saw him ONCE before he RETIRED. He lives for the cause, is beloved in the ARC community, and has while he has now written that book he also dedicated his Foundation to Education, and much of it online to make it his research available and accesible to the world. He has a few staff members there who help him with the online educational bulletins. It is a shoestring operation, and his spouse helps out as much as she can. Because I´ve been there in 2017 I gained a huge appreciation for them. As I was leaving, I asked how much I owed. "Whatever you can," said the lady at the front desk.

You are right that we have been messed up terribly, thousands of us all over the world. There are videos and publications online that explain our situation....but not enough docs. Partly, I THINK, because as was explained to me at Yale Neurosurgery, there is ABSOLUTELY NOTHING that can be done. The risks involved in another operation to try to correct or clean out the scars on nerves are far too great. I was told several times by docs I trust (some friends), "DO NOT LET THEM GO IN AND OPERATE, OR YOU WILL BE LEFT IN A WHEELCHAIR." But Dr. Tennant´s online and published research is showing that there is a need to reduce neuroinflammation, for starters. He has an excellent Manual, and if you follow it step by step, you will gain insight into what he is doing now.

What I´m learning now at the Mayo Pain Rehabilitation Program blows my mind. After almost 10 years on narcotics, I am being tapered down, with little distress. Slowly but surely. I don´t know where you live, but this is another resource worth considering. It is a 3-week program that works on the basis of Physical and Occupational Therapy, Cognitive Behavioral Therapy and Medication Management. I´m in my 6th day and I am now walking without a walker or cane. WALKING! I had lost that possibility a year ago, so I´m amazed. And reading Dr. Tennant´s manual I see that a number of his recommendations are the same as this program´s. Stretching every day, for example. Walking as much as possible, and pushing yourself as much as you can.

Your best bet is to read all you can about ARC, the Spine, and Centralized Pain. And do look up the Tennant Foundation resources, really! He is retired now, and is doing the best he can...late 70´s, both he and his wife. And he´s done a huge lot to bring attention to this problem with other docs. But it´s been swimming against the tide, every wave at a time.

Keep the faith. I know it´s very, very hard. For the first time in many years I have HOPE. Take care,
Joan

REPLY
2 replies
joanmahon | @joanmahon | Sep 16, 2019
In reply to @kimspr3 "Thank You John, I'll see if he responds to my email. When I saw Dr. Tennant's..." + (show)
@kimspr3

Thank You John, I'll see if he responds to my email. When I saw Dr. Tennant's reply I never expected to read about his new book and I hope you feel better. It doesn't seem it came from him? It was uncomfortable and un-important. I won't contact him anymore.

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Here go the good websites....especially the first one I think.....good luck, and do continue writing.....
Websites:
http://www.arachnoiditishope.com
http://www.foresttennant.com
http://www.hormonesandpaincare.com

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 16, 2019
In reply to @joanmahon "Please, please NEVER feel stupid. My mistake was in using the initials which refer to Arachnoiditis,..." + (show)
@joanmahon

Please, please NEVER feel stupid. My mistake was in using the initials which refer to Arachnoiditis, and AA, as Adhesive Arachnoiditis.

The grim reality is that people with Arachnoiditis have been far too long ignored, some of this stemming from it being considered a "Rare Disorder." There are several causes for Arachnoiditis, and many years ago it came from the usage of Pantopaque, a chemical that helped docs diagnose where the spinal problem was...so many years ago, that MRI´s didn´t exist. That was my own cause for it. Once Pantopaque was taken off the market in the 70´s the medical profession thought that would be the end of ARC. And truly began to ignore it. Those affected often died of other causes before it truly evolved into the horrible chronic pain symptoms of scar tissue surrounding the nerves--and this takes sometimes up to 20 and 30 years. Hence docs really received little or no education in it. Although there are other factors involved in their ignorance. It is a very complicated story.

If you look for the Burton Report, you will see much more accurate information than what I can give you here. At this point there are practically no doctors left who have been trained or educated in it. Only the "old timer docs" KNOW, and remember, but are retired and no longer available. In my past I found Dr. Antonio Aldrete, who diagnosed me with a full Independent Examiner Report in 2010, provided so I could show my GP. You can google him....he has written extensively on the subject. But he is no longer in the United States, and when I saw him he was ready to retire.

The next doc I found in California was Dr. Tennant, and I only saw him ONCE before he RETIRED. He lives for the cause, is beloved in the ARC community, and has while he has now written that book he also dedicated his Foundation to Education, and much of it online to make it his research available and accesible to the world. He has a few staff members there who help him with the online educational bulletins. It is a shoestring operation, and his spouse helps out as much as she can. Because I´ve been there in 2017 I gained a huge appreciation for them. As I was leaving, I asked how much I owed. "Whatever you can," said the lady at the front desk.

You are right that we have been messed up terribly, thousands of us all over the world. There are videos and publications online that explain our situation....but not enough docs. Partly, I THINK, because as was explained to me at Yale Neurosurgery, there is ABSOLUTELY NOTHING that can be done. The risks involved in another operation to try to correct or clean out the scars on nerves are far too great. I was told several times by docs I trust (some friends), "DO NOT LET THEM GO IN AND OPERATE, OR YOU WILL BE LEFT IN A WHEELCHAIR." But Dr. Tennant´s online and published research is showing that there is a need to reduce neuroinflammation, for starters. He has an excellent Manual, and if you follow it step by step, you will gain insight into what he is doing now.

What I´m learning now at the Mayo Pain Rehabilitation Program blows my mind. After almost 10 years on narcotics, I am being tapered down, with little distress. Slowly but surely. I don´t know where you live, but this is another resource worth considering. It is a 3-week program that works on the basis of Physical and Occupational Therapy, Cognitive Behavioral Therapy and Medication Management. I´m in my 6th day and I am now walking without a walker or cane. WALKING! I had lost that possibility a year ago, so I´m amazed. And reading Dr. Tennant´s manual I see that a number of his recommendations are the same as this program´s. Stretching every day, for example. Walking as much as possible, and pushing yourself as much as you can.

Your best bet is to read all you can about ARC, the Spine, and Centralized Pain. And do look up the Tennant Foundation resources, really! He is retired now, and is doing the best he can...late 70´s, both he and his wife. And he´s done a huge lot to bring attention to this problem with other docs. But it´s been swimming against the tide, every wave at a time.

Keep the faith. I know it´s very, very hard. For the first time in many years I have HOPE. Take care,
Joan

Jump to this post

@joanmahon - I found a link to the Burton Report on The Anatomy of Adhesive Arachnoiditis and thought I would share it here: https://www.burtonreport.com/InfSpine/AdhesArachAnatomy.htm

The Burton report was included as a link on Arachnoiditis topic resource page on the Christopher and Dana Reeve Foundation website (https://www.christopherreeve.org/). The resource page has links to other sources of information for Arachnoiditis.
-- http://s3.amazonaws.com/reeve-assets-production/Arachnoiditis-1-19.pdf

REPLY
joanmahon | @joanmahon | Sep 16, 2019

Thanks so much John. I didn´t know about the Christopher and Dana Reeve Foundation Website.....Thanks! I have all my materials at home during this period at Mayo, so appreciate your passing it on. I hate to see folks suffering from this, and the utter unconcern or ignorance about this awful disorder, which is progressive and non-operable. I know I´m not out of the woods yet and it is truly scary. I came to Mayo because a neurologist where I live (a sophisticated medium-sized city in the Gulf Coast) wanted to do brain surgery, as if that was the real reason I couldn´t walk right now. Mayo´s physician categorically denied this was necessary. At all.... But he did recommend the PRP (Pain Rehabilitation Program). Three weeks of hotel living, but worth a try. I´m walking, so it was very much worth it. Two more weeks to go. Thank you again

REPLY
joanmahon | @joanmahon | Sep 16, 2019
In reply to @johnbishop "Is this the one? https://www.painnewsnetwork.org/stories/2019/6/7/16-key-findings-about-arachnoiditis" + (show)

Hi Again, John. No, it wasn´t that one, but a few new bulletins in his Hope website mentioned earlier. Pain News Network is an excellent newsletter that I THINK was started by one of his patients...not exactly sure. It´s worth getting on their free newsletter subscription too.....Nighty nite.....it´s been a productive ARC dialogue, I hope....

REPLY
kimspr3 | @kimspr3 | Sep 19, 2019
In reply to @joanmahon "Please, please NEVER feel stupid. My mistake was in using the initials which refer to Arachnoiditis,..." + (show)
@joanmahon

Please, please NEVER feel stupid. My mistake was in using the initials which refer to Arachnoiditis, and AA, as Adhesive Arachnoiditis.

The grim reality is that people with Arachnoiditis have been far too long ignored, some of this stemming from it being considered a "Rare Disorder." There are several causes for Arachnoiditis, and many years ago it came from the usage of Pantopaque, a chemical that helped docs diagnose where the spinal problem was...so many years ago, that MRI´s didn´t exist. That was my own cause for it. Once Pantopaque was taken off the market in the 70´s the medical profession thought that would be the end of ARC. And truly began to ignore it. Those affected often died of other causes before it truly evolved into the horrible chronic pain symptoms of scar tissue surrounding the nerves--and this takes sometimes up to 20 and 30 years. Hence docs really received little or no education in it. Although there are other factors involved in their ignorance. It is a very complicated story.

If you look for the Burton Report, you will see much more accurate information than what I can give you here. At this point there are practically no doctors left who have been trained or educated in it. Only the "old timer docs" KNOW, and remember, but are retired and no longer available. In my past I found Dr. Antonio Aldrete, who diagnosed me with a full Independent Examiner Report in 2010, provided so I could show my GP. You can google him....he has written extensively on the subject. But he is no longer in the United States, and when I saw him he was ready to retire.

The next doc I found in California was Dr. Tennant, and I only saw him ONCE before he RETIRED. He lives for the cause, is beloved in the ARC community, and has while he has now written that book he also dedicated his Foundation to Education, and much of it online to make it his research available and accesible to the world. He has a few staff members there who help him with the online educational bulletins. It is a shoestring operation, and his spouse helps out as much as she can. Because I´ve been there in 2017 I gained a huge appreciation for them. As I was leaving, I asked how much I owed. "Whatever you can," said the lady at the front desk.

You are right that we have been messed up terribly, thousands of us all over the world. There are videos and publications online that explain our situation....but not enough docs. Partly, I THINK, because as was explained to me at Yale Neurosurgery, there is ABSOLUTELY NOTHING that can be done. The risks involved in another operation to try to correct or clean out the scars on nerves are far too great. I was told several times by docs I trust (some friends), "DO NOT LET THEM GO IN AND OPERATE, OR YOU WILL BE LEFT IN A WHEELCHAIR." But Dr. Tennant´s online and published research is showing that there is a need to reduce neuroinflammation, for starters. He has an excellent Manual, and if you follow it step by step, you will gain insight into what he is doing now.

What I´m learning now at the Mayo Pain Rehabilitation Program blows my mind. After almost 10 years on narcotics, I am being tapered down, with little distress. Slowly but surely. I don´t know where you live, but this is another resource worth considering. It is a 3-week program that works on the basis of Physical and Occupational Therapy, Cognitive Behavioral Therapy and Medication Management. I´m in my 6th day and I am now walking without a walker or cane. WALKING! I had lost that possibility a year ago, so I´m amazed. And reading Dr. Tennant´s manual I see that a number of his recommendations are the same as this program´s. Stretching every day, for example. Walking as much as possible, and pushing yourself as much as you can.

Your best bet is to read all you can about ARC, the Spine, and Centralized Pain. And do look up the Tennant Foundation resources, really! He is retired now, and is doing the best he can...late 70´s, both he and his wife. And he´s done a huge lot to bring attention to this problem with other docs. But it´s been swimming against the tide, every wave at a time.

Keep the faith. I know it´s very, very hard. For the first time in many years I have HOPE. Take care,
Joan

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HI JOAN, I TRIED TO SEND YOU A REPLY YESTERDAY SAFARI POPS UP AND IT EAS DELETED?? SAME THING HAPPENED AGAIN WITH ANOTHER REPLY??? DON'T KNOW HOW TO STOP IT? I WILL TRY AGAIN. HAVE A GOOD EVENING!

REPLY
Donald | @donfeld | Sep 22, 2019
In reply to @toiolinger "I have symptoms of Arachnoiditis. I was diagnosed with Transverse in 2012. I read a lot..." + (show)
@toiolinger

I have symptoms of Arachnoiditis. I was diagnosed with Transverse in 2012. I read a lot about Dr. Tennant who treated people with this disease. Unfortunately he was forced to retire. I am going to see a doctor and get a confirmation that I have this disease. I have pain in my back, butts. Tingling, numbness, burning, spasms, and twitching. It’s unbearable some days. I take pain pills and have stemulators in my back. Thank you. Chantaburi.

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I have just been diagnosed with a a and the male wants to give me a stimulator and other doctors told me that I have too much scar tissues?. What have you found when they put in a stimulator and is it helping in any way.? Has anybody told you that the chances of it working are slim because of your adhesions or scar tissue?

REPLY
Donald | @donfeld | Sep 22, 2019
In reply to @mdmo "Pam, I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that..." + (show)
@mdmo

Pam,
I too have Adhesive Arachnoditis from way too many steroid injections and other procedures that punctured my dura space requiring spinal blood patches to stop the leaking spinal fluid.
In 2013. I had a Medtronic intrathecal morphine pain pump implanted. If you read about Arachnoditis/ Failed Back Syndrome/ Post Lamenectomy Syndrome the gold standard for treatment is a Intrathecal morphine pain pump. They can fill it with just morphine, or a combination of medications.
I'm currently detoxing from my pump after 5 years slowly 15% titration per week. Withdrawal symptoms are something j do not want. So slow goes the reduction.
You should read all you can get your hands on by a doctor, (Dr Forrest Tennant) He opened the eyes of many doctors about Arachnoditis and how to treat it. But.....due to the pressure of the DEA, (Drug Enforcement Agency)
He was forced to close his practice. He was an amazing doctor, he truly had mercy in his heart and soul for his patients
Hope this helps.

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I just been diagnosed with a a and I've been reading about dr. Tennant. I was not aware that he lost his license could you tell me more about that if you can and are you following some of his treatments. Have you tried the stimulator which is what the Mayo is suggesting right away as I am not in stage 3 I'm going to Stage 1. According to Tennant he says don't do stimulator until later as stage 3 if if that should occur which I'm trying to prevent. Getting a Little Help from the Mayo Clinic and I don't understand why there's more research or why this more ideas of what to do for preventive care to prevent those nerves to congeal? Is AAA covered under insurance as I'm getting the impression that there's a problem with providers at the Mayo with my condition? Does anybody out there know if I can play golf with this condition and will it get worse because of golf?

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