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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@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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Hi, Theodora. New to group. We can commiserate with each other.

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@bfsecurityguy

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.

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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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@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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Do you also have positive ana and elevated crp? Do you take any lupus meds?

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@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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@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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@bfsecurityguy

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.

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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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@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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@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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@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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@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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