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.

@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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@kimspr3

Hi don, I'm sorry it took me so long to respond! I hope I you waited on your procedure? May I suggest to wait until you hear from Tennant. I have learned the hard way jumping to have procedures done do to pain. What state are you in to look up Dr. Pawluck so I can look him up. I know you went to the dr. but did you have the procedure or waited?

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Hi Kim. I don't know what you mean by procedure as I am looking into this pemf and this doctor Pawluk who is a real Guru on these machines has a website and he talks about depending on your condition what's treatment would be better for you with this condition. He has never treated anybody with a a so there's no testimony but he feels strongly that his machine would cure the disease and you can rent them or you can buy them and if you're not satisfied you can get your money back according to him after 45 days. There's another company I'm talkin to called healthy wave mats dot-com and there mats are a lot less cost and they claim they can really help and so I am debating which one to try I am either going to rent one or I'm going to buy one a try for 45 days and I will let everybody know whether this works for my our condition or not, however it does it could be a real help to us. I asked my doctor at the Mayo about this mechanism War Machine electronic Matt and he felt that it can hurt and if it helps it would be great but it's not covered under insurance. So they're not this claiming it at all and so look it up go to the website look up pemf there's a number machines out there and it's a multi tier system so Summit crossing over six $7,000 but there's a lot of cuts and commission on those type of products. The healthy wave mat is a direct buying it and there's no Uplink cost and it sounds like a good deal special you can buy it it only cost about $800 and if you don't like it at the 45 days or full refund

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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 don't know where Lake County is but here is my doctor's contact info. She has people fly in from all over the U.S.

Linda Bluestein, MD
WI Integrative Pain Specialists
4203 Schofield Avenue, Suite 2
Weston, WI 54476
Phone: (715) 600-1722
https://www.wisconsinintegrativepainspecialists.org/

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