Arachnoiditis: Trying to find a specialist

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

please look up information from Dr Forest Tennant. Many of your issues are probably caused by the arachnoiditis, His information has helped me greatly to find relief on my own( Kratom, DXM, oxytocin etc) because the doctors all blow me off and even pain management will not prescribe anything except lyrica and for a year after diagnosis still tried to give me more epidurals which is the worst thing you can do with arachnoiditis

I’m sorry you too live with this terrible disease. I have chased everything possible and spent most of my savings looking for a solution. After many doctors and crooks, they’ve come close to killing me which made me realize I need to be careful who I trusted. Do not go anywhere near Mayo Clinic and will leave it at that.. I finally found a doctor in Manchester, TN (Dr Newton) who implanted a pain stimulator. This is the only thing that will help stop most of the pain because it’s not dumping drugs into your system that won’t help damaged nerves. With a pain stimulator, you control vibrating pulses that stop the pain from going to your brain. You will still have to take lower doses of pain killers but nothing like you were on before. There is also a herbal alpha lipoid acid at 600 mg over the counter taken 3 times a day at 2 each time that is a miracle worker helping with pain. I wish you the best in your pursuit for a happier life. Please ask me any questions you would like.

Pam

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).

I have adhesive arachnoiditis.. I have been in horrible back for many years I’ve been on the same medication for 18 to 20 years I am now in so much severe pain after having a spinal cord surgery done in 2016 and left me with this disease I need to find a doctor that is not afraid to prescribe pain medication for people that are truly in severe pain why are we treated like junkies on the street we are not friends I am a 68-year-old mom and grandma I want to be able to enjoy my family right now I have no life I just exist in pain excruciating pain every day of my life I need help please anyone in the South Jersey area from Blackwood..Sewell Turnersville or Williamstown New Jersey please help me please thank you so much and God bless you.

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..

Go to the Facebook group, Adhesive Arachnoiditis We Fight. There is tons of info there, Illinois doctors are familiar with AA. Dr. JOSHI, HOFFMAN ESTATES, try him or try support group

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!!

I'm new here with this awful condition. Anxious to hear all assistance and opinions.

I don't know what caused mine, but I think you are correct. Have had 25 injections over the years. Every dr said he could hit the right nerve. Ha.