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.

@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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@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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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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@kimspr3

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

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She is currently treating me for Tarlov cysts (perineural cysts) and I'm in the process of being diagnosed with arachnoiditis. She specializes in various connective tissue disorders and many other conditions. As I said before, she has people from all over the U.S. to see her so that alone must mean something. Please go to her website that I included in the last message and check it out. It does a better job of explaining everything better than I can. If you call they would be happy to answer your questions. I can tell you that she takes wonderful care of her patients and thinks out of the box unlike so many other doctors. I'm sure you have had to jump from doctor to doctor because nobody wants to acknowledge arachnoiditis. She is the doctor that gets stuff done. She gets right on the phone with the radiologists, other doctors if needed, etc. There is no wasting your time going to a ton of appointments that do nothing for you and spending thousands of dollars for nothing. Trust me, I've done it for many years. I'm having the best pain relief I've had in 16 years. She switched me from the fentanyl patches to Oxytocin and Ketamine troches. They work together and dissolve under your tongue. I was afraid to get rid of the fentanyl patches because that had always been my best pain relief. I can say the new medication combo provides more pain relief and is an alternative to the opioids.

Liked by rwinney

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

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@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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@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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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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@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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Do you know if mat is compatible with SCS?

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@d_corley43

Hi… I to suffer with Arachnoiditis. I have had it for close to 26 yrs now.. I run an Arachnoiditis group on FB if any of you would like to join for info and support.

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Hi we recently have been diagnosed with arachnoid cyst one on the right is large one on the left is smaller please how can we join or find support group
Thank you for any help

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