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Arachnoiditis: Trying to find a specialist

Posted by msaliceinpain @msaliceinpain, May 22, 2016

I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.

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Profile picture for danispiderspine
danispiderspine | @danispiderspine | Jan 23, 2020
In reply to @c_edward "Possible Clue........While researching myelograms I came across 'arachnoiditis' for the first time. Now a few years..." + (show)
Profile picture for C Edward @c_edward

Possible Clue........While researching myelograms I came across 'arachnoiditis' for the first time.

Now a few years back I had a series of (3) epidural steroid injections as treatment for pain caused by fused C4-5 vertebrates having "came loose". Very shortly afterward I began to live in constant pain like I never had experienced....never knowing why but thinking it was nerve damage. Two EMG's and both came back negative.

Today I read two articles, one on WebMD and the other on Spine Universe (this site does not allow me to post links - I may try again in a few days time). Each states "....there is a concern that preservatives found in epidural steroid injections may cause arachnoiditis." Arachnoiditis may in part, full, or not at all be my condition but the information in these articles so closely mirror my symptoms and struggles it's scary. So I'm on a journey now, to see IF it is probable the epidural steroid injections I received contained preservatives and the possibility this caused my condition.

I hope this information will be useful to you in some way and I hope you find significant relief. I will post any findings.

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c-edward; have you been diagnosed? If not, there is maybe a bit of hope to get diagnosed but your regular doc probably wont know enough to diagnose you. I had a doc diagnose me in 2003 but his clinic was closed so I had to start over...then it took me another 19 years for diagnosis. My doc can read your mri's

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danispiderspine | @danispiderspine | Jan 23, 2020
In reply to @Tbato622 "Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr...." + (show)
Profile picture for Tbato622 @Tbato622

Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.

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There are some great Arachnoiditis support groups on facebook. I belong to 3 of them and they are all great. Just put "arachnoiditis" in the fb people search bar

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larkfutch | @larkfutch | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
Profile picture for B foreman @bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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my daughter is in same place as you!!! did you find help? we live in north carolina

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larkfutch | @larkfutch | Jan 23, 2020
In reply to @Tbato622 "Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr...." + (show)
Profile picture for Tbato622 @Tbato622

Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.

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my daughter is in same place!! we live in north carolina. we have been told to go to Johns hopkins or cleveland clinic have you had any luck??

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020
In reply to @danispiderspine "There aren't many doctors that treat arach BUT There is a doctor in California that treats..." + (show)
Profile picture for danispiderspine @danispiderspine

There aren't many doctors that treat arach BUT There is a doctor in California that treats it. He is retirement age and is booked full BUT he has a AA handbook that has the treatment protocol in it that he made specifically for us to give our doctors for them to use. It takes some talking but usually if you sign a release to keep the doc covered in case of your death-so the family wont sue him for using drugs that help but are off label. Look up http://www.painandhormones.com for the protocol. I am on about half of them and only take percocet so it is working

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Hi @danispiderspine, The website you posted is no longer available. Did you post the correct URL?

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 23, 2020
In reply to @danispiderspine "There aren't many doctors that treat arach BUT There is a doctor in California that treats..." + (show)
Profile picture for danispiderspine @danispiderspine

There aren't many doctors that treat arach BUT There is a doctor in California that treats it. He is retirement age and is booked full BUT he has a AA handbook that has the treatment protocol in it that he made specifically for us to give our doctors for them to use. It takes some talking but usually if you sign a release to keep the doc covered in case of your death-so the family wont sue him for using drugs that help but are off label. Look up http://www.painandhormones.com for the protocol. I am on about half of them and only take percocet so it is working

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Hi @danispiderspine, is the the doctor you are referring to Dr. Tennant? I found an interesting article that may be the same doctor.

New Treatment Gives Hope to Arachnoiditis Patients (July 9, 2016)
-- https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients

John

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galady | @galady | Jan 23, 2020
In reply to @danispiderspine "There aren't many doctors that treat arach BUT There is a doctor in California that treats..." + (show)
Profile picture for danispiderspine @danispiderspine

There aren't many doctors that treat arach BUT There is a doctor in California that treats it. He is retirement age and is booked full BUT he has a AA handbook that has the treatment protocol in it that he made specifically for us to give our doctors for them to use. It takes some talking but usually if you sign a release to keep the doc covered in case of your death-so the family wont sue him for using drugs that help but are off label. Look up http://www.painandhormones.com for the protocol. I am on about half of them and only take percocet so it is working

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Dr. Tennant is retiring and cannot take patients. Having some trouble with DEA, somebody complained. Too bad, he was trying to help.

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galady | @galady | Jan 23, 2020
In reply to @annmaria "Hello. Everyone. I have adhesive arachnoiditis edit this picture of me shows it with me 20..." + (show)
Profile picture for annmaria @annmaria

Hello. Everyone. I have adhesive arachnoiditis edit this picture of me shows it with me 20 years ago before the pain you wouldn’t want to see me today I’ve been in pain for 20 years and 2016 I had a spinal cord surgery due to a system on my spinal cord it has left me with this horrible horrific disease I cannot handle the pain at all I need to know where I can go in my area that the doctors know more about this disease and she treated much better I’ve been on the same medication that I started doing 20 years ago I am extremely bad pain 24/7 my life is not a life anymore I just exist I love spending time with my daughter and grandchildren but I’m not able to anymore I live on the second floor apartment I’ve been trying to get to it first years now I need help I need help and 70 aspects of my life I cannot cook I cannot clean I can’t do the laundry can change my bed I am not the woman I used to be I am far from her in. Everyway of. My. Life. I need to know where I can go that they know about this disease I have and to treat it in a much better way where I can live my life whatever I have left of it if I don’t get help I have no life no I would never commit suicide because I do want to go th I need to know where I can go that they know about this disease I have and to treat it in a much better way where I can live my life whatever I have left of it if I don’t get help I have no life no I will never commit suicide because I do want to go to. Heaven. With. God/Jesus... so is bad is the pain does get that it’s not an option for. Me. Plus I could never do that my family especially my 90-year-old father If there’s any Dr. Pain Dr. in the Sicklerville Turnersville ...willliamstown. Swell. Area. That. Is. Not. Afraid to. Prescribe me the best pain medicine so I can live my life and be a human being again please contact me I’ll check on him from time to time if any doctor or institution once you get a hold of me I will give them my phone number or address we’re both I can’t live like this anymore the pain is horrific I just need pain relief NOW..I can’t wait another day I can’t sleep at night because the pain keeps me up I did finally fall sleep for an hour or two and I’m up because of the pain yes I’m sleepy and tired all the time just please someone help me I’m begging I want to be a productive person I want to be able to clean my place cause I can’t wait another day I can’t sleep at night because the pain keeps me up I did finally fall sleep for an hour or two and I’m up because of the pain yes I’m sleepy and tired all the time just please someone help me I’m begging I want to be a productive person I want to be able to clean my Pl., Cook. Food
Wash. Dishes change the damn sheets on my bed be able to take better care of my self to be there for others I have a very good friend who is dying from cancer God bless her and she is not in the pain that I man she has no pain how can that be not that I want to see her in pain why I got earth do I need to suffer like this for all these years please help me my Facebook name is Ann Maria. Perrone -Vesper. Please you can reach me on my Facebook page and I will privately send you my address phone number and any other information you need any doctor any pain management doctor that understands how. This. Disease does take your life away
And. I. Also. Have. My. MRI. Disc. &. Written. Report...Please. HELP. ME !! My. MRI Is. Current. Was. Done. On 12/26/17..

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I'm in same boat. Use a wheelchair. Pain is horrendous. I have same disabilities you mentioned. Nobody can get any help! It's unbelievable how Dr's won't help. The DEA is making us all suffer that have legitimate pain and made to feel like criminals or addicts.

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Profile picture for galady
galady | @galady | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
Profile picture for B foreman @bfsecurityguy

<p>I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can't find anyone who wants to help me..I'm so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.</p>

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Oh, boy, because of opiods problem, government going to limit pain meds. We with chronic, serious pain will be punished because of others. Having AA ànd cannot get much pain med, I can't imagine how bad this will be for us with horrendous chronic pain!!!

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galady | @galady | Jan 23, 2020
In reply to @ledgerwp "I've had arachnoiditis since 2012. It has been a tough fight and doctors that have any..." + (show)
Profile picture for Pam @ledgerwp

I've had arachnoiditis since 2012. It has been a tough fight and doctors that have any idea how to help are almost impossible to find. I finally found a doctor that wasn't just saying they knew what the disease was. He actually does. He implanted a pain stimulator which is helping quite a bit. He's in Tennessee so not real close to your location. Do not let a bad doctor implant a pain pump. They are only making money off of you and not trying to help That isn't for our disease. I hope that helps.

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What pain med does give us some relief? I'm in a wheelchair now, cannot walk because pain is so severe. What can relieve this pain?

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