I am desperate to find a dr who treats arachnoiditis.

Posted by B foreman @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.

@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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Dr. Tennant is retiring and cannot take patients. Having some trouble with DEA, somebody complained. Too bad, he was trying to help.

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@annmaria

Hello. Everyone. I have adhesive arachnoiditis edit this picture of me shows it with me 20 years ago before the pain you wouldn’t want to see me today I’ve been in pain for 20 years and 2016 I had a spinal cord surgery due to a system on my spinal cord it has left me with this horrible horrific disease I cannot handle the pain at all I need to know where I can go in my area that the doctors know more about this disease and she treated much better I’ve been on the same medication that I started doing 20 years ago I am extremely bad pain 24/7 my life is not a life anymore I just exist I love spending time with my daughter and grandchildren but I’m not able to anymore I live on the second floor apartment I’ve been trying to get to it first years now I need help I need help and 70 aspects of my life I cannot cook I cannot clean I can’t do the laundry can change my bed I am not the woman I used to be I am far from her in. Everyway of. My. Life. I need to know where I can go that they know about this disease I have and to treat it in a much better way where I can live my life whatever I have left of it if I don’t get help I have no life no I would never commit suicide because I do want to go th I need to know where I can go that they know about this disease I have and to treat it in a much better way where I can live my life whatever I have left of it if I don’t get help I have no life no I will never commit suicide because I do want to go to. Heaven. With. God/Jesus… so is bad is the pain does get that it’s not an option for. Me. Plus I could never do that my family especially my 90-year-old father If there’s any Dr. Pain Dr. in the Sicklerville Turnersville …willliamstown. Swell. Area. That. Is. Not. Afraid to. Prescribe me the best pain medicine so I can live my life and be a human being again please contact me I’ll check on him from time to time if any doctor or institution once you get a hold of me I will give them my phone number or address we’re both I can’t live like this anymore the pain is horrific I just need pain relief NOW..I can’t wait another day I can’t sleep at night because the pain keeps me up I did finally fall sleep for an hour or two and I’m up because of the pain yes I’m sleepy and tired all the time just please someone help me I’m begging I want to be a productive person I want to be able to clean my place cause I can’t wait another day I can’t sleep at night because the pain keeps me up I did finally fall sleep for an hour or two and I’m up because of the pain yes I’m sleepy and tired all the time just please someone help me I’m begging I want to be a productive person I want to be able to clean my Pl., Cook. Food
Wash. Dishes change the damn sheets on my bed be able to take better care of my self to be there for others I have a very good friend who is dying from cancer God bless her and she is not in the pain that I man she has no pain how can that be not that I want to see her in pain why I got earth do I need to suffer like this for all these years please help me my Facebook name is Ann Maria. Perrone -Vesper. Please you can reach me on my Facebook page and I will privately send you my address phone number and any other information you need any doctor any pain management doctor that understands how. This. Disease does take your life away
And. I. Also. Have. My. MRI. Disc. &. Written. Report…Please. HELP. ME !! My. MRI Is. Current. Was. Done. On 12/26/17..

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I'm in same boat. Use a wheelchair. Pain is horrendous. I have same disabilities you mentioned. Nobody can get any help! It's unbelievable how Dr's won't help. The DEA is making us all suffer that have legitimate pain and made to feel like criminals or addicts.

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Oh, boy, because of opiods problem, government going to limit pain meds. We with chronic, serious pain will be punished because of others. Having AA ànd cannot get much pain med, I can't imagine how bad this will be for us with horrendous chronic pain!!!

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@ledgerwp

I’ve had arachnoiditis since 2012. It has been a tough fight and doctors that have any idea how to help are almost impossible to find. I finally found a doctor that wasn’t just saying they knew what the disease was. He actually does. He implanted a pain stimulator which is helping quite a bit. He’s in Tennessee so not real close to your location. Do not let a bad doctor implant a pain pump. They are only making money off of you and not trying to help That isn’t for our disease. I hope that helps.

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What pain med does give us some relief? I'm in a wheelchair now, cannot walk because pain is so severe. What can relieve this pain?

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im in desperate to find one in Texas.

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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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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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@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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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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I feel this way too! This is ridiculous pain.

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

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