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.

@jackiekinney

Hi! I’ve been suffering for almost 5 years constant back pain with terrible muscle spasms. I can’t stay in one position for long because of the pain. This started right after I had my epidural for my last child. I had to have a c section for both my kids with no problem with the first. I’ve been seeing my general practitioner for 4 yrs and have had absolutely no relief and they can not tell me what’s causing this. I’m a physical therapist assistant so I’ve always been active and caution with my back but I can not even work. I have difficulty raising my kids because of the pain and barely sleep at night since it wakes me up in terrible pain. I’ve been searching for years to find out what’s wrong and came across arachnoiditis. I get occasional tingling and numbness in my legs but it’s inconsistent. Any suggestions?

Jump to this post

  Dr. Forest Tennant in California is the one who I correspond with. Here is his link.
practicalpainmanagment.com

REPLY
@jackiekinney

Hi! I’ve been suffering for almost 5 years constant back pain with terrible muscle spasms. I can’t stay in one position for long because of the pain. This started right after I had my epidural for my last child. I had to have a c section for both my kids with no problem with the first. I’ve been seeing my general practitioner for 4 yrs and have had absolutely no relief and they can not tell me what’s causing this. I’m a physical therapist assistant so I’ve always been active and caution with my back but I can not even work. I have difficulty raising my kids because of the pain and barely sleep at night since it wakes me up in terrible pain. I’ve been searching for years to find out what’s wrong and came across arachnoiditis. I get occasional tingling and numbness in my legs but it’s inconsistent. Any suggestions?

Jump to this post

Thank you for thinking of me. I went to see Dr. Tennant Feb 5th and I have another appointment March 28th

Liked by d_corley43

REPLY
@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.

Jump to this post

practicalpainmanagment.com

Dr. Forest Tennant in California is a Arachnoiditis Specialist and will view your MRI’S for free.

REPLY
@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.

Jump to this post

AWESOME!!

REPLY
@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.

Jump to this post

I too have Arachnoiditis and have had some pretty bad experiences with doctors not believing in the disease. I had a pain pump put in in 2014 with mistakes made and complications. I also have cauda equana which is even harder to get a doctor to believe. I’m in big trouble now since my doctor kicked a lot of us out so I have a pain pump which is close to the time for filling. If anyone knows of an Arachnoiditis doctor that cares enough to find solutions for me, please let me know. I stay so depressed and that’s not me. I live in Alabama but will travel anywhere just to get help. Thanks

REPLY
@ledgerwp

I too have Arachnoiditis and have had some pretty bad experiences with doctors not believing in the disease. I had a pain pump put in in 2014 with mistakes made and complications. I also have cauda equana which is even harder to get a doctor to believe. I’m in big trouble now since my doctor kicked a lot of us out so I have a pain pump which is close to the time for filling. If anyone knows of an Arachnoiditis doctor that cares enough to find solutions for me, please let me know. I stay so depressed and that’s not me. I live in Alabama but will travel anywhere just to get help. Thanks

Jump to this post

Welcome to Connect @ledgerwp.
You may also want to connect with @user_ch3fc240e who recently wrote about a brother with Cauda Equina Syndrome https://connect.mayoclinic.org/discussion/cauda-equina-syndrome/

How does a doctor “kick out” patients? Is there a pain clinic in your area?

REPLY
@ledgerwp

I too have Arachnoiditis and have had some pretty bad experiences with doctors not believing in the disease. I had a pain pump put in in 2014 with mistakes made and complications. I also have cauda equana which is even harder to get a doctor to believe. I’m in big trouble now since my doctor kicked a lot of us out so I have a pain pump which is close to the time for filling. If anyone knows of an Arachnoiditis doctor that cares enough to find solutions for me, please let me know. I stay so depressed and that’s not me. I live in Alabama but will travel anywhere just to get help. Thanks

Jump to this post

It was a pain clinic. I had been going to them for 15 years. Things changed after pain pump was implanted ad mistakes were made. Many things happened and the final thing was refusing another back injection which is probably what caused my disease Arachnoiditis. When I said I wouldn’t do it, they cut my meds in half, dropped my muscle relaxer and slowed the pump down to almost off so my pain flew up. It goes on and on. Its been a nightmare. I did find help with cauda equana from a urgent care clinic Med they gave me. It’s a miracle.

REPLY
@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.

Jump to this post

By reading quite a few blogs, sounds like I need to go to California. The doctor people are discussing sounds great. I ended up with Arachnoiditis after they found an infection in my spinal fluid. I used to get back injections as often as every 2 months.

REPLY
@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.

Jump to this post

Hi, I live in Arkansas and was recently diagnosed with Arachnoiditis. I have been referred to and am seeing a doc in the interventional pain clinic here. I was wondering if anyone might point me to a doc in the ‘area’ that might have had some experience with this disorder.

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

Welcome to Connect @charmyachicago.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I’ve read that it is difficult and it takes special tests.

REPLY
@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.

Jump to this post

Find an intractable pain doctor for palliative support

REPLY
@marilynmeadors

I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I’ve read that it is difficult and it takes special tests.

Jump to this post

Welcome to Connect @marilynmeadors
Here is a link to the American Medical Association’s doctor finder https://apps.ama-assn.org/doctorfinder/home.jsp. You can enter your zip code and find a physician or specialist in your area.

Have you considered traveling to one of our Mayo locations?

REPLY
Please login or register to post a reply.