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.

@lisalucier

Hi, @toiolinger – Mayo Clinic does not host any facebook groups on arachnoiditis, but others may know of some. However, I'd really hope you'd stay here on Mayo Clinic Connect to talk with some of the many members posting about arachnoiditis, like @JeyLei @lconroy @ginpain @meatmouth1 @cj1010 @galady @caklady @geezappeal1 @annmaria @tepping8382 and others here in this discussion in the Connect Brain & Nervous System group who've talked about arachnoiditis, or in this discussion in the Connect Chronic Pain group, https://connect.mayoclinic.org/discussion/arachnoiditis/.

I noted you mentioned you will be going to see a doctor about symptoms similar to arachnoiditis to get a confirmation of your diagnosis. When will you be going? How is your pain today?

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Has anybody tried Pursed electromagnetic field therapy? PEMF. Male wants me to do a stimulator and some doctors I saw said don't do it. Has anybody had any success?

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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 A.A. curious what is PEMF?

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@kimspr3

I have A.A. curious what is PEMF?

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Kim, I am scared and frustrated like you and I am having a conference call tomorrow with Dr. Pawluck who says he can help with our condition. I have a neighbor who's been suffering with back problems and disc problems for some time and he tried this apparatus and he can't believe how much better he's feeling with 80% less pain and sleeping at night. Increase blood circulation which promotes healing an inflammation reduction. Google his name and you might get some more information and pemf stands for Pulsed Electro Magnectic Field and been around for years as well as NASA USES it for astronauts who have been weightless for a long time and cannot stand the gravity coming back to Earth. Is all kinds of good stories about it and course we're desperate so will try anything especially if we can rent the machine to start off with and some manufacturers say though you can try it for 45 days and it doesn't work you can return it with no obligation. I have that information to. Very frustrating from the Mayo as I sent Dr tenants information to doctors with no response. No research no formula all they want to do is give me a stimulator in my spine which is not recommended at least not now. If you're at the beginning stages now is the time to act. Hope this helps. Don

Liked by danispiderspine

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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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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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@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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@donfeld

Kim, I am scared and frustrated like you and I am having a conference call tomorrow with Dr. Pawluck who says he can help with our condition. I have a neighbor who's been suffering with back problems and disc problems for some time and he tried this apparatus and he can't believe how much better he's feeling with 80% less pain and sleeping at night. Increase blood circulation which promotes healing an inflammation reduction. Google his name and you might get some more information and pemf stands for Pulsed Electro Magnectic Field and been around for years as well as NASA USES it for astronauts who have been weightless for a long time and cannot stand the gravity coming back to Earth. Is all kinds of good stories about it and course we're desperate so will try anything especially if we can rent the machine to start off with and some manufacturers say though you can try it for 45 days and it doesn't work you can return it with no obligation. I have that information to. Very frustrating from the Mayo as I sent Dr tenants information to doctors with no response. No research no formula all they want to do is give me a stimulator in my spine which is not recommended at least not now. If you're at the beginning stages now is the time to act. Hope this helps. Don

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Hi again, I just researched PEMF. It sounds great. I would even like to try it!! My question, are there truly no side effects? Does it help nerve damage, scaring around the nerves? Why has this not been recommended by P.M. drs or others? I don't understand it?

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@joanmahon

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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I can not find a doctor who will read any of Doctor Tennant Medical information especially the Harmone information for pain.

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@kimspr3

Hi again, I just researched PEMF. It sounds great. I would even like to try it!! My question, are there truly no side effects? Does it help nerve damage, scaring around the nerves? Why has this not been recommended by P.M. drs or others? I don't understand it?

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First place even the top pain doctor at the mail says it can't hurt you or does it harm you and it may work. It's been around for years Nasa uses it for the pilots coming back from space after a year to get their body back in shape I should does increase blood flow which reduces inflammation and reduces pain. I've spoken to this doctor who promotes some of his machines and he claims that he can cure it and he'll give you a 45-day trial. If you don't like it get your money back. I am going to do it cuz I have nothing to lose and so do you. Look into it. Healthy wave mat I think it's called is rated High and the prices like eight hundred bucks. 45 day free trial. I'm ordering it tomorrow and after 45 days I'll know if it's worth it. We must try things out of the box as long as it's not dangerous. It's far better than surgery or pills or injections. If you have trouble looking up I'll get you some more detail of where to go. If you look up pemf you'll go to a number of different sites and comparison reports. Don

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@kimspr3

Hi again, I just researched PEMF. It sounds great. I would even like to try it!! My question, are there truly no side effects? Does it help nerve damage, scaring around the nerves? Why has this not been recommended by P.M. drs or others? I don't understand it?

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I was told the doctors don't recommend it because it's not covered under Health Care or any insurance. Magnets I've been curing and helping people with pain for years cuz I have a friend that sleeps with a magnet blanket. My next door neighbor who's a straight guy and is really conservative as well as an electrical engineer was so skeptical over this mat and now he swears by it. I don't know if it's going to be good for a AA but it can help pain hopefully and that's what it's all about. I'm just letting you know what I'm going to do and I would encourage anybody else to try to see if we can get some kind of consensus if this thing is any kind of help. Even. Tennant is offering a machine and I don't know what it is.

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@donfeld

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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I'm sorry, I called it a procedure. Did you mean he has never treated anyone with AA? If thats right can you wait for Dr. Tennant to email you or there are phone numbers to call him. There is no such thing as "curing the disease" other wise people with AA there will be a line at the door. If he said "cure" may I suggest "run". Please, listen to your dr. at Mayo, PLEASE. All this stuff is just making people rich or trying to. It's only a suggestion. It's up to you.

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@kimspr3

I'm sorry, I called it a procedure. Did you mean he has never treated anyone with AA? If thats right can you wait for Dr. Tennant to email you or there are phone numbers to call him. There is no such thing as "curing the disease" other wise people with AA there will be a line at the door. If he said "cure" may I suggest "run". Please, listen to your dr. at Mayo, PLEASE. All this stuff is just making people rich or trying to. It's only a suggestion. It's up to you.

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I know all about the fact that you cannot cure it at this point but to prevent the pain from getting worse without entering my body through surgery or injections it's something I have to look into. They are using things and other Mayo Clinic such as the scrambler or tens and so I'm thinking out of the box and I am taking some of the medical ingredients that he's recommending such as vitamins and other stuff that is making me feel a lot better plus of course exercising. Mayo I think seriously caused by disease with a severe spinal leak that I had last year but what disappoints me is that they never try to diagnose me and even when we finally found out when I have there was nobody who said that would mean explain your condition except only one thing. Stimulator. If you listen to doctor tenant you said you not do the stimulator unless you're in later category which I am not. I'm going to try to prevent that category I hopefully what I'm doing and maybe this mat will help. Thanks for thinking of me as I think of you.

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@donfeld

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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I am in the worst pain I have ever felt before, need connect to keep busy. Nothing is working.

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@qball2019

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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May I ask how she is treating you for A.A.?

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@donfeld

I know all about the fact that you cannot cure it at this point but to prevent the pain from getting worse without entering my body through surgery or injections it's something I have to look into. They are using things and other Mayo Clinic such as the scrambler or tens and so I'm thinking out of the box and I am taking some of the medical ingredients that he's recommending such as vitamins and other stuff that is making me feel a lot better plus of course exercising. Mayo I think seriously caused by disease with a severe spinal leak that I had last year but what disappoints me is that they never try to diagnose me and even when we finally found out when I have there was nobody who said that would mean explain your condition except only one thing. Stimulator. If you listen to doctor tenant you said you not do the stimulator unless you're in later category which I am not. I'm going to try to prevent that category I hopefully what I'm doing and maybe this mat will help. Thanks for thinking of me as I think of you.

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Hi, I remember using Tens, out-patient. It felt good, soothing. My experience and yours, getting a dr. to admit to Arachnoiditis would be a miracle. I had spinal fluid leak also. I had emergency surgery to remove a pain pump than caught, in the hospital, Serratia Bacterial Infection, in-patient for 2 wks on the step down ICU. If you can stand it try not to have any procedures unless an emergency. I do think of you too.

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