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Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Nov 30 4:16pm | Replies (326)

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@bfsecurityguy

<p>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.</p>

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Replies to "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..."

im in desperate to find one in Texas.

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!!!

my daughter is in same place as you!!! did you find help? we live in north carolina

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

Any help? I’m new, I’m looking, I’m in Washoe county, and I need help! I can’t imagine 3 years, I’m on 7 months, my surgeon is ignoring me as well!!

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..

I have it also. One doctor wanted to implant a pain pump or a stimulator. I declined. I have had enough scarring from other surgeries and was scared wires would become like that in my spine no matter what he stated. He siad it would help my back fusion (chronic lumbar pain) and the arachnoiditis. Perhaps it would help. I have had scarring at incision lines on total knee and hip replacements so it has made me reluctant already having the scar tissue in the spinal canal (arachnoiditis).

Hello all. I am sorry that AA pain makes us part of a group. I can only offer some information about possible AA and/or pain specialists about whom you may wish to do some research. My husband has Adhesive Arachnoiditis from an epidural steroid injection between his C4 and C5 vertebrae that was poorly done. Woke up that next morning sobbing and curled in a fetal position from which he could not move. That was 2003 (I got the years incorrect in another post here) and he was eventually diagnosed with AA. Our pain clinic is terrible and his current med regimen is insufficient for this type of Intractable Pain. Not Chronic Pain, Intractable Pain. A major difference.

Anyway...there is a pain specialist just outside of Washington DC, who operates an integrative pain clinic. His name is Dr. Gary Kaplan, and he has also written a book, entitled "Total Recovery." He uses some of the same protocol that Dr. Forrest Tennent does. No doubt, if you have searched for AA, you have come across Dr. Tennent's site. He has some good free downloads on surviving intractable pain and protocol for diagnosis and testing and treatment with which you can educate you pain doc if he or she is interested. Dr. Tennent is in California and still takes new patients.

We are awaiting a time when my husband finishes his last year on a particular job and then we are going to try something different. Kaplan Center or Dr. Tennent or both. FaceBook has a couple of great groups. I follow Arachnoiditis Everyday on there. Good information and great support and caring members. Most research I have done come to a dead-end, mostly because the pain management docs are looking to do surgery. My husband has had no surgery, which makes him even more rare of an AA victim. Probably also makes him in better condition than many and for that we are grateful. His current doc will not prescribe stronger dosage of Exalgo ER, nor a breakthrough med and neither will he recommend a stim implant while my husband still has his job.

In Maryland we now have medical marijuana pharmacies opening up, but the pain clinics in our locale will drop a patient if they secure a script for medical pot. I had thought that they would work with the pharmacy to help their CP and IP pain patients lessen their use of opioids and/or use it for breakthrough pain, but no. What is the point of the state licensing medical marijuana pharmacies if they cannot be used.

Best of luck to you all.

-Jeanne

Anyone familiar with Arachnoiditis?

Did you ever get any help??