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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.

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Posted by @Margaret_Marie, Jun 23, 2014

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?


C Edward
@c_edward

Posts: 1
Joined: Oct 01, 2014
Posted by @c_edward, Oct 1, 2014

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.


Tbato622
@Tbato622

Posts: 10
Joined: Nov 24, 2015
Posted by @Tbato622, Nov 24, 2015

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.


CharmYaChicago
@charmyachicago

Posts: 4
Joined: Feb 18, 2014
Posted by @charmyachicago, Jun 3, 2016

Livingwitharachnoiditis.com and facebook groups too. Arachnoiditis just search engine should pull them up and mr. Secret so you have to sometimes email people and let them know your condition before they’ll let you in but it’s no big deal but try to get in one they’re really great and then all else there’s paint National pain network.com or maybe International Pain network.com try both


needrelief
@marlenew

Posts: 2
Joined: Sep 07, 2016
Posted by @marlenew, Sep 7, 2016

Hi Theodora, I am excited to read you have a doctor in Chicago because I am in a suburb of Chicago, but then you say you are in pain all the time. Does Dr. Lubenow understand this disease we have Arachnoiditis and that we are truly in pain and would never want anyone sticking any injections in our spinal cord? I am in dire need of a pain management Doctor and miraculously I checked and Dr. Lubenow is on my insurance!!! Does he have problems giving pain meds because I know they are cracking down on these doctors giving narcotic pain meds because of the major drug addiction problem we have in this country. But “we” the ones who truly are in unbearable pain at times and some all of the time need meds just to be able to function somewhat. So I guess I’m asking if you recommend your doctor for another Arachnoiditis sufferer? I am on a Facebook support group Arachnoiditis Everyday that can be helpful with the emotional support and education on this disease, might be good for you to check it out. Any feedback would be much appreciated. Thanks and I wish you less painful days.


Colleen Young, Connect Director
@colleenyoung

Posts: 3174
Joined: Jul 23, 2014
Posted by @colleenyoung, Nov 25, 2015

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?


Tbato622
@Tbato622

Posts: 10
Joined: Nov 24, 2015
Posted by @Tbato622, Nov 30, 2015

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!!


Colleen Young, Connect Director
@colleenyoung

Posts: 3174
Joined: Jul 23, 2014
Posted by @colleenyoung, Dec 1, 2015

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


d_corley43
@d_corley43

Posts: 6
Joined: Dec 04, 2015
Posted by @d_corley43, Dec 3, 2015

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.


Tbato622
@Tbato622

Posts: 10
Joined: Nov 24, 2015
Posted by @Tbato622, Dec 6, 2015

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


Tbato622
@Tbato622

Posts: 10
Joined: Nov 24, 2015
Posted by @Tbato622, Dec 6, 2015

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


Colleen Young, Connect Director
@colleenyoung

Posts: 3174
Joined: Jul 23, 2014
Posted by @colleenyoung, Dec 4, 2015

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?


d_corley43
@d_corley43

Posts: 6
Joined: Dec 04, 2015
Posted by @d_corley43, Dec 4, 2015

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.


Tbato622
@Tbato622

Posts: 10
Joined: Nov 24, 2015
Posted by @Tbato622, Dec 6, 2015

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


Tbato622
@Tbato622

Posts: 10
Joined: Nov 24, 2015
Posted by @Tbato622, Dec 6, 2015

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.

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