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.

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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 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

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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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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

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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’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

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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 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).

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@busterbrown

Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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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.

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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. 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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@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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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

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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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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!!

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

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@c_edward

Possible Clue……..While researching myelograms I came across ‘arachnoiditis’ for the first time.

Now a few years back I had a series of (3) epidural steroid injections as treatment for pain caused by fused C4-5 vertebrates having “came loose”. Very shortly afterward I began to live in constant pain like I never had experienced….never knowing why but thinking it was nerve damage. Two EMG’s and both came back negative.

Today I read two articles, one on WebMD and the other on Spine Universe (this site does not allow me to post links – I may try again in a few days time). Each states “….there is a concern that preservatives found in epidural steroid injections may cause arachnoiditis.” Arachnoiditis may in part, full, or not at all be my condition but the information in these articles so closely mirror my symptoms and struggles it’s scary. So I’m on a journey now, to see IF it is probable the epidural steroid injections I received contained preservatives and the possibility this caused my condition.

I hope this information will be useful to you in some way and I hope you find significant relief. I will post any findings.

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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.

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