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.

@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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im in desperate to find one in Texas.

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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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did you ever find a Dr and or relief

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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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I have Adhesive Arachnoiditis and have all symptoms of lupus. Taking pain medication over a long period of time seems to rob you of your happiness. I have found three wonderful female doctors that have started helping me with the chronic inflammation in my body. LDN (3 mg from Compound Pharmacy) works over time. Plaquenil 100 mg (Lupus medicine) in the morning and LDN at night. This has helped me more than any pain pill! My blood work has improved. Your hair will start to grow back. My legs don’t fell like lead pipes.

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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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I had a doctor tell me if you don’t get the inflammation down you will never have any relief. I started not absorbing my iron or minerals due to inflammation in my gut. You may be making iron and have no saturation! My AA now has all symptoms of Lupis. I don’t believe it’s Lupus. I believe it from the AA going untreated. I was on pain medicine for years. That was my only treatment. If I am not absorbing my iron…how can I be absorbing my pain medicine? I had enough and now I am on the LDN at night and Plaquenial in am. I told my new doctor I don’t want anymore pain medicine! I want to get rid of my inflammation. My inflammation markers were off the chart. C reactive protein was a 36.7 is suppose to be lest than 1. ESR was 70 suppose to be 20. Pain medicine was not helping my numbers. They were climbing every year. I had enough and went to see a Rheumatologist. Now My numbers have cut in half. Don’t wait too long to get treatment. It can cause organ damage, stroke or hear attack. Inflammation is a serious thing. If you are not getting treated for your inflammation…ask your doctor.

Liked by Jamie Olson, jimaem

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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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@caklady and @ginpain– Welcome!

@ginpain 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. or Have you considered traveling to one of our Mayo locations?

@caklady, great information! Thank you for sharing your thoughts and experience. Does your doctor think that your numbers will come down even more? What has your treatment consisted of?

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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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Thank you @jamienolson ! What does the mayo clinic do? Does someone know if the pain stimulator works. What are your experiences.
Thank you!

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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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I feel this way too! This is ridiculous pain.

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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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Hello @caklady — Thank you for the private message. I wasn't sure if you meant to post it or send it to me. It sounds like you have found something that helps with your pain that doesn't include pain medication? There was someone earlier that went to see a Dr. Tennant and was helped. I had posted a little information about him earlier.

I did a search and found the following article that mentions Dr. Forrest Tennant who talks about a new treatment for arachnoiditis:
New Treatment Gives Hope to Arachnoiditis Patients:
https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients

Then I did a further search on Google Scholar (https://scholar.google.com/) using "Dr. Forest Tennant arachnoiditis treatment" and came up with more articles. Here is the link for the search results:
https://scholar.google.com/scholar?hl=en&as_sdt=0,24&q=Dr.+Forest+Tennant+arachnoiditis+treatment

Please keep asking questions and advocating for yourself. You are not alone.

Hoping you get some relief for your pain soon.

John

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@johnbishop

Hello @caklady — Thank you for the private message. I wasn't sure if you meant to post it or send it to me. It sounds like you have found something that helps with your pain that doesn't include pain medication? There was someone earlier that went to see a Dr. Tennant and was helped. I had posted a little information about him earlier.

I did a search and found the following article that mentions Dr. Forrest Tennant who talks about a new treatment for arachnoiditis:
New Treatment Gives Hope to Arachnoiditis Patients:
https://www.painnewsnetwork.org/stories/2016/7/9/new-treatment-gives-hope-to-arachnoiditis-patients

Then I did a further search on Google Scholar (https://scholar.google.com/) using "Dr. Forest Tennant arachnoiditis treatment" and came up with more articles. Here is the link for the search results:
https://scholar.google.com/scholar?hl=en&as_sdt=0,24&q=Dr.+Forest+Tennant+arachnoiditis+treatment

Please keep asking questions and advocating for yourself. You are not alone.

Hoping you get some relief for your pain soon.

John

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Thank you! I am on a lot of Dr.Tennant plan. It wasn’t till they started treating me for Lupus that I got any relief. I truely believe that’s it caused all my inflammation. After all isn’t that what Arachnoiditis is? Inflammation of the arachnoid. By the time they found mine it was already Adhesive Arachnoiditis. Pain medication did not work for me. I started declining strong opioids. I felt like they had changed my brain chemistry and I no longer look forward to things or had any happiness. The medication I take for lupus has changed my life for the better. I think people Arachnoiditis can’t find doctors because of the scrutiny on writing prescriptions for opioids in the US. Steroids and lupus medication along with LDN has helped me more than any opioids. When I first was diagnosed with AA The only treatment was opioids. When I had to go to the emergency room due to excruciating pain from electrical shocks from just breathing they would give me a shot of steroids and anti-inflammatories and it was a miracle. I was on two different opioids during this time and they never touched the excruciating pain I had from uncontrollable electrical spasms from any movement in my body. When I went to see my rheumatologist that was the first thing I told her that medicine they gave me in the emergency room worked better than any opioids. When I told her I do not want any opioids she was so much more open to helping me with my plan to get relief. I guess I was lucky since I never got addicted to any of my pain medications. I guess I got sick and tired of being sick and tired and got off my behind and did something about it.

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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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Forest Tenant is a great man, sharing his knowledge with those of us who deal with horrific pain and a total lack of response/treatment by the medical establishment. I just copied his "Arachnoiditis Handbook For Survival" . And to think that in 1975, when I had my first spinal surgery, dr. Tenant was opening his clinic…about 40 miles away from me! How different my life would have been with proper care. So it goes.

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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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I realize this has been posted a long time ago but trying to find out if you found relief?

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@cj1010

I realize this has been posted a long time ago but trying to find out if you found relief?

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Hello @cj1010 — welcome to Connect. I'm tagging @caklady to see if she is able to share what has given her some relief.

John

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@cj1010

I realize this has been posted a long time ago but trying to find out if you found relief?

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Thank you so much!

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@cj1010

I realize this has been posted a long time ago but trying to find out if you found relief?

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Sharing IS Caring. Dr Ron Rubenzer. Your well-being is my commitment

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@meatmouth1

Anyone familiar with Arachnoiditis?

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Hello @meatmouth1, Welcome to Connect. I don't have arachnoiditis but there is an active discussion on Connect that you might want to post any questions you have so that you have more visibility:

Groups > Brain & Nervous System > I am desperate to find a dr who treats arachnoiditis.
https://connect.mayoclinic.org/discussion/i-am-desperate-to-find-a-dr-who-treats-arachnoiditis-i-live/

I'm tagging our moderator Kanaaz @kanaazpereira to see if she is able to move your post to the above discussion so members with arachnoiditis will see it.
@meatmouth1 are you able to share a little more about your symptoms and any treatments you've found that help?

John

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