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B foreman
@bfsecurityguy

Posts: 1
Joined: Jun 22, 2014

I am desperate to find a dr who treats arachnoiditis.

Posted by @bfsecurityguy, Jun 22, 2014

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.

REPLY

Hi, @bfsecurityguy. Here is information on Mayo Clinic’s Neurology Department that you may find helpful: http://www.mayoclinic.org/departments-centers/neurology. Has anyone else experienced arachnoiditis?

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.

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.

Hi @Tbato622
Let me start by welcoming you to Connect. I agree that when dealing with a chronic condition, it is helpful to find a support group – people going through the same thing. Let’s hope that @bfsecurityguy and @c_edward will respond to this message when they get the email notification.

What kind of pain do you have and how are you managing it?

@colleenyoung

Hi @Tbato622
Let me start by welcoming you to Connect. I agree that when dealing with a chronic condition, it is helpful to find a support group – people going through the same thing. Let’s hope that @bfsecurityguy and @c_edward will respond to this message when they get the email notification.

What kind of pain do you have and how are you managing it?

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Hello. Thank u for ur email. I had an intramedullary spinal cord tumor. It was respected in 2009. It was at level C7-T3. I have severe neurological deficits n now also have arachnoiditis. I am a patient of Dr. Lubenow at Rush in Chicago. I have an intrathecal pump implanted w/morphine, bupivacaine, n clonidin. I have severe neuropathy everywhere except my hands arms n head. I live a miserable life. Any help, info, or support group would be appreciated Thank You very much!!

Hi Tbato,
I’m so glad you responded. Did you see that a new member joined Connect? @JeyLei posted a message here https://connect.mayoclinic.org/discussion/no-where-to-turn-for-answers-this-is-the-story-of-my/ Recent test results show that his wife has an arachnoid cyst.

I think he would appreciate having someone to talk to. Would you please consider clicking the link above and writing him a message?
Thanks
Colleen

Hi… I to suffer with Arachnoiditis. I have had it for close to 26 yrs now.. I run an Arachnoiditis group on FB if any of you would like to join for info and support.

Hi @d_corley43
Welcome to Connect. I’m sure @Tbato622 will be happy to share with someone who has been living with this condition. Have you had Arachnoiditis since you were a child?

@colleenyoung

Hi @d_corley43
Welcome to Connect. I’m sure @Tbato622 will be happy to share with someone who has been living with this condition. Have you had Arachnoiditis since you were a child?

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I have the same problem here in Mississippi, but there is an Arachnoiditis and pain specialist in California who is having some great results with his protocol plan. Just type in your browser,
Dr. Forest Tennant in California and it will pull up his info and practice. He is great at working with your own doctors as well.

@d_corley43

Hi… I to suffer with Arachnoiditis. I have had it for close to 26 yrs now.. I run an Arachnoiditis group on FB if any of you would like to join for info and support.

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Hello. My name is Theodora. I also suffer w/arachnoiditis. Any support or info would deeply be appreciated.

@colleenyoung

Hi @d_corley43
Welcome to Connect. I’m sure @Tbato622 will be happy to share with someone who has been living with this condition. Have you had Arachnoiditis since you were a child?

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Hi. My name is Theodora Batistatos. I suffer from arachnoiditis. Any support or info would help. Thank u

@colleenyoung

Hi @d_corley43
Welcome to Connect. I’m sure @Tbato622 will be happy to share with someone who has been living with this condition. Have you had Arachnoiditis since you were a child?

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Hi. My name is Theodora. I am a patient of Dr. Lubenow Rush Chcago, IL. I suffer from arachnoiditis and many more neurological deficits. Any support or info would be greatly appreciated. Thank u.

@d_corley43

Hi… I to suffer with Arachnoiditis. I have had it for close to 26 yrs now.. I run an Arachnoiditis group on FB if any of you would like to join for info and support.

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Hi. I’m Theodora. I would love to join the Facebook page.

Hi Theodore… If you type in Forest Tennant Arachnoiditis specialist in California then it will pull up all of his info. Are you on Facebook?

@d_corley43

Hi Theodore… If you type in Forest Tennant Arachnoiditis specialist in California then it will pull up all of his info. Are you on Facebook?

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Hi. Yes I am on Facebook as Theodora Fitusis Batistatos. I am a patient of Dr. Lubeow at Rush Chicago. He’s a GREAT doctor. I have an intrathecal pump implanted but ANY other recommendations would be appreciated.

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