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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Jen, Alumna Mentor | @sandytoes14 | May 17, 2017

In reply to @jenapower "I'm afraid I don't know what it is. Can you please explain?" + (show)

@jenapower I had to research what NMO stood for. There are so many acronyms for conditions I find it difficult to keep track of them!
In short,NMO --Neuromyelitis optica -- is a disorder which involves the eyes (optic) and the spinal cord (myelitis). Here is a link for the full review. http://mayocl.in/2qwCDRy

jenapower | @jenapower | May 17, 2017

In reply to @jenapower "I'm afraid I don't know what it is. Can you please explain?" + (show)

Thank you, I appreciate that

berrybesthill1 | @berrybesthill1 | May 20, 2019

My MRI showed “suggestive of mild Arachnoiditis” in February 6 weeks after a hard fall on my back. The orthopedic doctor I was going to never told me and I have not had any proper treatment. The symptoms have progressively gotten worse. I spoke with Dr. Tennant who says I need to get the Naloxone, steroids, and Ketoralac to stop it from causing paralysis. I’m taking his recommended self help products but need to find a doctor who can help me with the prescription medications. Even my PCP won’t help. I will drive any where in Florida to get non narcotic help. I live between Boca Raton and Fort Lauderdale, Florida. Please help, the pain is depressing and limiting.

patrick17 | @patrick17 | May 20, 2019

In reply to @berrybesthill1 "My MRI showed “suggestive of mild Arachnoiditis” in February 6 weeks after a hard fall on..." + (show)

I am sorry for your pain and medical issues. There is a pain management doctor in Fort Lauderdale named William Porter McRoberts. His website is internationalhouseofpain.com. Perhaps he can help you. I hope you find someone who can help.

C Edward | @c_edward | Jan 23, 2020

In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)

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 | Jan 23, 2020

In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)

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.

Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020

In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)

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 | Jan 23, 2020

In reply to @colleenyoung "Hi @Tbato622 Let me start by welcoming you to Connect. I agree that when dealing with..." + (show)

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!!<br />
<br />

Colleen Young, Connect Director | @colleenyoung | Jan 23, 2020

In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)

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 | Jan 23, 2020

In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)

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.