1. < Spine Health

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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Donald | @donfeld | Jan 23, 2020
In reply to @kimspr3 "Hi, I remember using Tens, out-patient. It felt good, soothing. My experience and yours, getting a..." + (show)
@kimspr3

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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Kim, go to @gball2019 who has a doctor for AA.
DR.Rozen at Mayo has helped me more than anybody as he is a top in the country as a neurologiis. He treats me for my pain in my head and my neck as well as my shoulders from radiation damage. However he is going to get an MRI with contrast on that part of my body to see if AA contact that connection patient were talking about is in there.

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kimspr3 | @kimspr3 | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>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.</p>

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I would eagerly see him but I can't sit long at all. I live in NJ. Which Mayo? I had a MRI few months ago, I was so surprised that the radiologist never mentioned in "comments" my pain pump, cyst near my spine, left kidney is rotated. Those things have always been mentioned in the past except in this MRI???? I have NEVER been treated for AA, now I believe it's too late? It started 2008, never new.

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1 reply
kimspr3 | @kimspr3 | Jan 23, 2020
In reply to @donfeld "That is why PEMF therpy is going to help!!! I have a good feeling about this..." + (show)
@donfeld

That is why PEMF therpy is going to help!!! I have a good feeling about this and Dr. Pawluck says he knows that it will along with is know of Dr. Tennant.

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don. You heard from Dr. Tennant about PEMF? Please let us know when you receive it. Good Luck!

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1 reply
Donald | @donfeld | Jan 23, 2020
In reply to @kimspr3 "don. You heard from Dr. Tennant about PEMF? Please let us know when you receive it...." + (show)
@kimspr3

don. You heard from Dr. Tennant about PEMF? Please let us know when you receive it. Good Luck!

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Can you tell me what he said. I'm really interested cuz I can't get a good response about this and yet I get positive responses but not from him yet.

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1 reply
Donald | @donfeld | Jan 23, 2020
In reply to @kimspr3 "I would eagerly see him but I can't sit long at all. I live in NJ...." + (show)
@kimspr3

I would eagerly see him but I can't sit long at all. I live in NJ. Which Mayo? I had a MRI few months ago, I was so surprised that the radiologist never mentioned in "comments" my pain pump, cyst near my spine, left kidney is rotated. Those things have always been mentioned in the past except in this MRI???? I have NEVER been treated for AA, now I believe it's too late? It started 2008, never new.

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I just got a letter from a doctor at the Mayo told me never to do a stimulator because it would make things worse especially with all the scar tissues and entry is always a dangerous thing at this point. I am from New Jersey and where are you from in New Jersey as I am from Springfield New Jersey originally. Love New Jersey my heart is in New Jersey and with you

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kimspr3 | @kimspr3 | Jan 23, 2020
In reply to @donfeld "Can you tell me what he said. I'm really interested cuz I can't get a good..." + (show)
@donfeld

Can you tell me what he said. I'm really interested cuz I can't get a good response about this and yet I get positive responses but not from him yet.

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I'm sorry, I thought Tennant contacted you? I read your post wrong.I apologize.

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ken82 | @ken82 | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>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.</p>

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Pain Dr in CA..I read an article that Tennet had retired... DEA and such were after him.. and he was in his 70s... K

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kimspr3 | @kimspr3 | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>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.</p>

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DEA, was awhile ago, maybe you can email him, ask him if he could recommend a Doctor for you.

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1 reply
Donald | @donfeld | Jan 23, 2020
In reply to @kimspr3 "DEA, was awhile ago, maybe you can email him, ask him if he could recommend a..." + (show)
@kimspr3

DEA, was awhile ago, maybe you can email him, ask him if he could recommend a Doctor for you.

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Kim, I am doing some of the things that he recommends and just got my PEMF mat. Tried for a hour at a low dose and my pain was actually reduced by 80%. My neurologist is the only one that understands my situation and I'll be seeing him in a week and a half for some other treatment not related to that but he's there for me I know that.

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kimspr3 | @kimspr3 | Jan 23, 2020
In reply to @bfsecurityguy "I am desperate to find a dr who treats arachnoiditis. I live in lake county and..." + (show)
@bfsecurityguy

<p>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.</p>

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Wow, I'm so happy for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Wonder if it would be good for me at my advanced AA.? I hope others on connect will read this. How long does it last after you use it? What does it feel like?

Name od Dr. Tennant's Book, Adhesive Arachnoiditis, An Old Disease Re-Emerges In Modern Day Times

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