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.

@jelizabeth

In 2016 one spine surgeon said I "probably" had arachnoiditis, but he sort of slid the comment in at the end of the office visit. I didn't know what questions to ask, but based on my previous appointments with him, he wouldn't have said very much, except to clarify that there was nothing he could do for me. Since then I have been told (after I asked if they could see it on the imaging) by three other neurosurgeons that I have arachnoiditis, and that I have cauda equina syndrome by one neurosurgeon, but they didn't mention this in the records, nor did the radiologist put it on the report. One radiologist said the diagnosis codes that the doctor put on the order would determine what information he would include in the impression. I took this to mean that unless the doctor gave the radiologist the O.K. nothing about certain things, such as iatrogenic conditions, would be on the report. The nurse practitioner ordered another sacral MRI, at my last pain management appointment, after we specifically discussed the fact that the previous imaging had severe artifacts from surgical hardware and a pain pump, and that no one had ever ordered imaging of the sacral nerve roots before. I explained that a neurosurgeon had told me, the previous week, that he could see arachnoiditis on the lumbar MRI that I took to the appointment. The nurse practitioner even asked the name of the doctor and typed it on his computer. I proceeded to tell him what the radiologist said and asked him to put arachnoiditis and cauda equina syndrome on the order. He indicated that he would do this, however, I was contacted by the person that was scheduling the MRI, who said he had put cauda equina syndrome, but not arachnoiditis, on the order. If I have the test and the radiologist doesn't see cauda equina syndrome, where will this leave me? I seriously doubt that he will say I have arachnoiditis, since none of the other ones have. Every radiologist in my area knows that surgery caused my problems. I could hear the nurses talking about this when I was lying in the MRI machine during the last test. I was approved for disability for a cervical spine problem, but I would like to find a pain management doctor that knows more about arachnoiditis. Did your doctor order MRI's for you, and if so did he put arachnoiditis on the order?

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@jelizabeth

I'm going to have to disagree with the radiologist that told you the diagnostic codes the Dr. put on the order would determine what he included in the report. I understand that they are supposed to do as ordered but there is no reason they can't include all incidental findings. You are paying for these very expensive tests and you should have a say in how they are done. I found Nicolas Argy's point of view on the matter. https://www.nicolasargy.com/blog-2/index.php/2016/07/02/not-reporting-incidental-findings-in-radiology-reports
Not sure if I can post stuff on here so if it's not allowed just Google Nicolas Argy dot com. Check out his blog titled "Not Reporting Incidental Findings In Radiology Reports". His credentials are very impressive. He knows his stuff! You could argue that the radiologist refusing to include the incidental findings is a violation of the Standard of Care. You have the right to know about everything that shows up. Here is a clip from this discussion…

The current standard of care is to report all findings present, including those thought to be incidental and benign ( all corners of the film). By not reporting incidental findings, radiologists are breaching the standard of care. Not reporting them suggests to most lay people that the radiologist either missed the findings or was too busy to report them. While rare, benign appearing findings do sometimes turn out to be significant and even benign lesions have the potential to malignantly degenerate. Aren't these rare events, with potential catastrophic damages, the exact genesis of lawsuits.

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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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Your input is very much appreciated! Everything started with the surgeon in my small town who did the first back surgery that ruined my spine. He said he would only order MR imaging at the hospital where the surgery had been done, which was because he knew he could tell the radiologist what to put, and not put, on the report. When I told the surgeon that I did not want it done there he informed me and my husband that we no longer had a doctor/patient relationship and dismissed me less than two months after the surgery had been done. This was the perfect way for him to get rid of me. No one wanted to become involved with my care, however. Primary care doctors were rude. Neurosurgeons didn't want to see me, and if they did they wouldn't tell me the truth. The look on their faces told the story, though, after they saw my imaging discs. It was so hard to keep researching what doctor to see next, and I didn't know anyone in the medical field to advise me. After travelling from TN to doctors in five other states I finally saw the websites about blacklisted patients and this 100% describes my experience. Going to doctor after doctor and dealing with the false things that were put in my records to cover up what the surgeon had done, while having debilitating pain, destroyed my self confidence.

Thank you for the information and the website. I need all the help I can get. I am going to ask some of the radiologists, who have read my reports, to give me a more detailed imaging report. In the future, when I have a new test I will ask them, beforehand, if they will provide me with all of the findings, but let me tell you this. The nurse practitioner I saw the last time in pain mgmt. said he would order a pelvic MRI. I asked him to put DX codes for cauda equina syndrome and arachnoiditis on the order and explained that the last neurosurgeon I saw, the week before, had said he could see arachnoiditis on the disc I took. (I had already given them records from a neurosurgeon stating that I have C.E.S.) He wanted to know the name of the neurosurgeon and typed it in on his computer. It was the first time I saw this man at a pain mgmt. appointment. I had previously seen a nicer woman. The man indicated that he would put the DX codes on the order, but when the scheduling clerk called she said he had put C.E.S., and not arachnoiditis. I also noticed on the prescription for my medication that he had listed four DX codes. They included C.E.S. and "meningitis", but not arachnoiditis. Meningitis is the result of infection around the spinal cord, whereas spinal adhesive arachnoiditis is typically caused by an iatrogenic injury, such as a spine surgery. There is nothing in my records about an infection, but none of the doctors will say I have arachnoiditis because they know it is caused from the first surgery I had. The surgery was done seven years ago!!

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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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When you go in to see a new doctor explain your entire situation including exactly what you've written above along with how it has affected you. Tell them that you are looking for a doctor that is willing to work with you because you are desperate for help. I have made appts. with several doctors at the same time (after my deductible was met) and told them I was going to see a few other doctors and was basically interviewing them. I explained that I no longer want to be strung along or looked down upon and then asked if they were willing to help me. I know it's hard to take on any more stress on top of just trying to survive the symptoms every day but remember, you are your best advocate. You will never get anywhere in the medical world unless you push.

I have never sued anyone in my life but I think you have a few really good lawsuits on your hands. You may want to talk to a malpractice lawyer. Also, if I were you I would also contact the Commissioner of Insurance in your state and file a few complaints against the doctors. I'm considering doing the same things. You may want to contact Nicolas Argy I mentioned in the last response. He is a radiologist and a medical malpractice lawyer. He has a few other titles under his belt at well. He may be able to steer you in the right direction or at least a little advice. Google patient advocate in your area as well. You have to pay them but they really dig into your records, make phone calls, and get things done for you.

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@qball2019

When you go in to see a new doctor explain your entire situation including exactly what you've written above along with how it has affected you. Tell them that you are looking for a doctor that is willing to work with you because you are desperate for help. I have made appts. with several doctors at the same time (after my deductible was met) and told them I was going to see a few other doctors and was basically interviewing them. I explained that I no longer want to be strung along or looked down upon and then asked if they were willing to help me. I know it's hard to take on any more stress on top of just trying to survive the symptoms every day but remember, you are your best advocate. You will never get anywhere in the medical world unless you push.

I have never sued anyone in my life but I think you have a few really good lawsuits on your hands. You may want to talk to a malpractice lawyer. Also, if I were you I would also contact the Commissioner of Insurance in your state and file a few complaints against the doctors. I'm considering doing the same things. You may want to contact Nicolas Argy I mentioned in the last response. He is a radiologist and a medical malpractice lawyer. He has a few other titles under his belt at well. He may be able to steer you in the right direction or at least a little advice. Google patient advocate in your area as well. You have to pay them but they really dig into your records, make phone calls, and get things done for you.

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Thanks for the information.

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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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Unfortunately, Dr. Tennant has retired.

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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 Theodore, I also suggest contacting Forest Tennant, Calif. He started the Arachnoiditis Foundation. I hear you!! I understand!! I have Adhesive Arachnoiditis. I live in NJ. Wish I could help you. Only my experience, majority of P.M. have never heard of it or pretend don't know about it. I have a Pain Pump with 3 medications in it. It helps. Try and get all you information together so if you call Tennant and he asks you for it you will have it ready. My dr. put me on LDN not an opiate. LDN is hard to explain so if you look it up will explain in detail. Good luck to you and please let us know how you are doing.

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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 lost touch with members who have this disease.

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@kimspr3

I lost touch with members who have this disease.

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Hi @kimspr, discussions about arachnoiditis can be found in the Spine Health group https://connect.mayoclinic.org/group/spine-health/

I moved your message to this existing discussion where you were connected with others already, like @jelizabeth, @qball2019 @carolinapearl53 @danispiderspine and more. You may also be interested in these discussions:
– Arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis/
– Arachnoid Cyst https://connect.mayoclinic.org/discussion/arachnoid-cyst/

I'd also like to welcome new member @kacie. Kacie, what is your experience with arachnoiditis?

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Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons used Pantopaque for diagnosis, at a time when MRI´s did not exist (1973). I needed surgery for laminectomy and fusion. I trust this diagnosis provided in 2010 because it came from Dr. Antonio Aldrete, who wrote several books and many articles about Arachnoiditis. He has since retired, however, and is no longer available for consult (I believe he has retired to Argentina). Have been fortunate to see Dr. Forest Tennant in 2017, but he closed his practice at the beginning of 2018. All I´ve ever wanted was to have is a way to "keep going," and have tried all sorts of land and water therapy, as well as various pain relief modalities, as instructed by Dr. Aldrete. Now am stuck on hydrocodone for the past several years…and feeling the effects. Now having trouble walking and driving, and can´t get to water therapy 20 miles from home. Feel as if I must start accepting an end. But not ready….until I manage to get to Mayo, Neurology in Jacksonville. Have appointment for mid August. This is a long reply, but one that may give some hope. I have lived with ARC and AA (adhesive arachnoiditis) since probably 1973, when it all began. Very important to get good diagnosis to be sure a person is dealing with this, and then try to read all you can about it. There is loads of information, especially the websites from Dr. Tennant. In my next note will give everyone those websites. Meantime, please do read up Practical Pain Management website, and search for "Arachnoiditis" once in. Search for Arachnoiditis everywhere you can, INCLUDING You-Tube. Knowledge is power. Especially at a time when most physicians know little about this condition listed in the National Organization of Rare Disorders (NORD). Self-education is the key now. Please forgive the length of this one!

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@danispiderspine

@ @christinasuit My paperwork ALL said arachnoiditis and the disability judge said he didn't believe that is what my problem was. Dr ForestTennant will help read MRI so you can show the findings to your GP which should helpifyou do have arach

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Please pursue the Disability issue. I am almost sure I saw something online about it now being approved for Disability. May need an attorney, and I´ve talked to a couple already. I am too late myself since I stopped working several years ago because of the pain, etc. Don´t give up on Disability. Online research is your best tool.

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@joanmahon

Hi Margaret, I am an arachnoiditis patient, diagnosed with proper MRI´s in 2010. Started when surgeons used Pantopaque for diagnosis, at a time when MRI´s did not exist (1973). I needed surgery for laminectomy and fusion. I trust this diagnosis provided in 2010 because it came from Dr. Antonio Aldrete, who wrote several books and many articles about Arachnoiditis. He has since retired, however, and is no longer available for consult (I believe he has retired to Argentina). Have been fortunate to see Dr. Forest Tennant in 2017, but he closed his practice at the beginning of 2018. All I´ve ever wanted was to have is a way to "keep going," and have tried all sorts of land and water therapy, as well as various pain relief modalities, as instructed by Dr. Aldrete. Now am stuck on hydrocodone for the past several years…and feeling the effects. Now having trouble walking and driving, and can´t get to water therapy 20 miles from home. Feel as if I must start accepting an end. But not ready….until I manage to get to Mayo, Neurology in Jacksonville. Have appointment for mid August. This is a long reply, but one that may give some hope. I have lived with ARC and AA (adhesive arachnoiditis) since probably 1973, when it all began. Very important to get good diagnosis to be sure a person is dealing with this, and then try to read all you can about it. There is loads of information, especially the websites from Dr. Tennant. In my next note will give everyone those websites. Meantime, please do read up Practical Pain Management website, and search for "Arachnoiditis" once in. Search for Arachnoiditis everywhere you can, INCLUDING You-Tube. Knowledge is power. Especially at a time when most physicians know little about this condition listed in the National Organization of Rare Disorders (NORD). Self-education is the key now. Please forgive the length of this one!

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You mention 2 great doctors, may I add, The Burton Report, There is another informative web site, Arachnoiditis a quiet web of suffering. find them also on Facebook. Within their pages we can offer information on Aracachnoiditis, Adhesive Arachnoiditis which is worse, do's and dont's when thinking about therapy, aqua therapy, exercise or miracle cures. PT, Aqua Therapy, Stretching, I did it all because dr's thought it would help but it caused more pain. They were not to familiar with AA.I trusted them. I have A.A./BJA: British Journal of Anesthesia, Chronic Adhesive Arachnoiditis. Very informative. Joan you are so right when you say research.

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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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Yes, indeed, the Burton Report (found online) is excellent…..There are several Facebook groups but I don´t deal with Facebook…takes too much time. There are also several blogs, but after a while I was getting a little depressed reading. Mayo Connect is different. I do believe totally in water therapy as the best way to keep leg muscles supple and working hard, but in a true Therapy Pool of around 94 degree water. The one I´ve used and loved is with Sarasota Memorial Hospital…can´t manage it right now because of the distance from home. PT can be risky, they don´t always know what to do about Arachnoiditis needs….most of the times they are amazed to hear about this condition…depending on their level of interest, I do bring them reading material to get started on learning about it. Did the same with my GP, and she now has included AA in my Patient Portal records, after several years of bringing her Dr. TEnnant´s materials. So am very grateful to her for being receptive to his protocols. While Dr. Tennant is officially retired (no more patients), his Foundation continues to update several websites for newest research protocols and if I email him he does reply and is very kind to do so. Latest protocol just came out a month ago. Has loads of practical information on line. Everyone should go online and look at his recommendations…. Most physicians who "see" ARC are actually radiologists or even anesthesiologists. Have a good weekend and week……my best! Joan

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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, Happy Aqua Therapy worked for you. For me he pressure walking against the water put too much pressure on my spine. I had PT after my fusion 2016 I was sent to Kessler Institute where Superman Steves Reeves was. They were so good. They are in West Orange and Chatham. NJ. I was there for 3 weeks. Dr. Tennant told me that no more can be done. He emailed information to give to my Pain Management Dr..medications I should be on. He is also an Anesthesiologist, It is depressing being told "nothing more can be done for me" Why was I not told of the 90% of the true meaning of Failed back Syndrome? When the Dr's told me my Diag. They closed the door. If I knew I would not have gone on and on and on trying to find Drs to find out what was wrong me and I was getting worse. No more surgeries, Ablations, nerve blocks and more. The trust I had in their decisions changed my life. I find it disparaging that no one is interested in the in AA and how to make patients aware than, make a decision. I think about that a lot,For me, I can't find any answers? Question, Patients with AA have they seen a change in brain activity. I do't know how to word it. Thank You Joan, my best to you also

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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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In reply to Bforman, I no longer see or look for Neurosurgeons, spine surgeons. The more is done chances of getting worse. There is a Dr. In Calif. Dr. Forrest Tennant. Interest includes AA, he started a Foundation. Some of us are in touch with him. If you live near the NJ areas I have a very Well know Pain Management/Anesthesiologist. Anesthesiologist is a big plus in care. His name is Doctor S. Datta, Pain Management, Hackensack NJ. His practice also includes CancerCare, MS and more. Easy to find him on the Internet. Also can find him, Dr. S, Datta Naltrexone. non-opiate pain medication. He put me on it starting on a very low liquid dose given in an eye dropper. I just started. I hope I can help at least a little for all of you in pain.

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@pinkslw

Are you a part of any of the support groups thru Facebook?
I know and understand what you are dealing with as I too have been dealing with this for just a little over a year. The feeling of despair tends to rule my day more than anything other than the pain. I understand and hope you look into the groups, I'm not much help right now because I don't know how I keep going to bed and waking up, but there's a ton of support. Arachnoiditis and Arachnoiditis Everyday are in the search on Facebook. I have been told there is no fixing, just learning to manage.

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Has anybody tried PEMF (Pulsed Electromagnetic Field Therpy? I have a neighbor that swears by it and it'll really help some relaxing sleeping definitely controls his pain but I wonder if anybody has it for AA?

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