1. < Spine Health

Arachnoiditis: Looking to talk with others

Posted by arannek72 @arannek72, Jul 3, 2018

I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.

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arannek72 | @arannek72 | Sep 22, 2019
In reply to @donfeld "Thank you so much as I know that answer but I just want some reassurance because..." + (show)
@donfeld

Thank you so much as I know that answer but I just want some reassurance because all they want to do is give me a stimulator at the Mayo Clinic and no other thoughts or ideas. I just sent the tenant handbook to four doctors asked him to review and let's talk about it and see at least this is helping some people and with some kind of guidelines which the Mayo is not providing

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My pain doctor at NorthShore University Health System tried to convince me that I did not have arachnoiditis even though I had multiple MRI's that tell a different story.
Now he lists a a as one of his specialties. What a joke.
I will tell you, what has helped me is medical cannibis. (I went to an independent dent doctor for this.

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2 replies
Donald | @donfeld | Sep 22, 2019
In reply to @arannek72 "My pain doctor at NorthShore University Health System tried to convince me that I did not..." + (show)
@arannek72

My pain doctor at NorthShore University Health System tried to convince me that I did not have arachnoiditis even though I had multiple MRI's that tell a different story.
Now he lists a a as one of his specialties. What a joke.
I will tell you, what has helped me is medical cannibis. (I went to an independent dent doctor for this.

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Based on tenants handbook I wonder if they even have it as some of the questions I answered no but I have symptoms that relate to it in my lower back and hips which keeps me up for 3 years and the spinal leak that I had after surgery was dramatic as I had took three surgeries to correct. The Cannabis I've been taking for some time and I've been smoking marijuana since 1961. Thank God. Thanks for the input and I'll let you know how I made out with the handbook with these doctors at the Mayo. I just don't understand a hospital like this got their head in the sand. My last surgery operate on me all they want to do when he found out we have this is give me a stimulator and how does nurse call me insisting why I should habit and need it. That's the last resort as we all know and we don't need any more operations or insertions in our body especially with all the scar tissues and spider webs nerves were dealing with thanks. Dawn

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2 replies
Donald | @donfeld | Sep 22, 2019
In reply to @arannek72 "My pain doctor at NorthShore University Health System tried to convince me that I did not..." + (show)
@arannek72

My pain doctor at NorthShore University Health System tried to convince me that I did not have arachnoiditis even though I had multiple MRI's that tell a different story.
Now he lists a a as one of his specialties. What a joke.
I will tell you, what has helped me is medical cannibis. (I went to an independent dent doctor for this.

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Have you ever heard of pemf mats? My neighbor recently got it about 2 months ago and it's like you sleeping all night and no pain and just can't believe how well it has worked. It increases blood flow and reduces inflammation. Look it up. I'm trying to find somebody who has use this for or tried it for AA

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arannek72 | @arannek72 | Sep 22, 2019
In reply to @donfeld "Based on tenants handbook I wonder if they even have it as some of the questions..." + (show)
@donfeld

Based on tenants handbook I wonder if they even have it as some of the questions I answered no but I have symptoms that relate to it in my lower back and hips which keeps me up for 3 years and the spinal leak that I had after surgery was dramatic as I had took three surgeries to correct. The Cannabis I've been taking for some time and I've been smoking marijuana since 1961. Thank God. Thanks for the input and I'll let you know how I made out with the handbook with these doctors at the Mayo. I just don't understand a hospital like this got their head in the sand. My last surgery operate on me all they want to do when he found out we have this is give me a stimulator and how does nurse call me insisting why I should habit and need it. That's the last resort as we all know and we don't need any more operations or insertions in our body especially with all the scar tissues and spider webs nerves were dealing with thanks. Dawn

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Dawn,
Have you tried the 1:1 cannibis oil. It doesn't take all of the pain away but it helps me to function as normally as possible. I have heard from more than one source that the neuro spinal stimulator can make the a a worse.
I feel like we are on our own, taking care of ourselves.
I have tug o read Dr. Tennant's book.
Good luck!
Amy

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gerisues | @gerisues | Sep 23, 2019
In reply to @donfeld "Is that what you use at the Mayo? Thanks, Don" + (show)
@donfeld

Is that what you use at the Mayo? Thanks, Don

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Not just Mayo's. In the 30 years since I have been diagnosed, I have used that same code with every test and doctor and fortunately it has always been accepted with my insurance. I am just hoping that it does the same for anyone else who suffers with this.

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joanmahon | @joanmahon | Sep 23, 2019
In reply to @donfeld "Joan, I just sent tenants hand book to for doctors at the Mayo Clinic ask him..." + (show)
@donfeld

Joan, I just sent tenants hand book to for doctors at the Mayo Clinic ask him to please read it for what least we have some guidelines for our patients are online connect. I'm curious of what they're going to say or do about it but at least they got it now. Let me know what you think and I wish you the best as well as thank you for all your help. Dawn

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What part of Mayo did it go to and which of Clinics (name?). When I have appt at Spine Center in JAX will see how they handle it. Chief in Neurology knows I will be asking for suggestions when I come in to Spine Center. Thank you.

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1 reply
Donald | @donfeld | Sep 23, 2019

I sent it to a spine specialist the top pain specialist and the top physical therapist specialist. Who is the Chief neurologist that you're talkin about.? I also send it to my neurologist there who's the best one I was told in the country

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haggyrae | @haggyrae | Sep 23, 2019
In reply to @donfeld "Based on tenants handbook I wonder if they even have it as some of the questions..." + (show)
@donfeld

Based on tenants handbook I wonder if they even have it as some of the questions I answered no but I have symptoms that relate to it in my lower back and hips which keeps me up for 3 years and the spinal leak that I had after surgery was dramatic as I had took three surgeries to correct. The Cannabis I've been taking for some time and I've been smoking marijuana since 1961. Thank God. Thanks for the input and I'll let you know how I made out with the handbook with these doctors at the Mayo. I just don't understand a hospital like this got their head in the sand. My last surgery operate on me all they want to do when he found out we have this is give me a stimulator and how does nurse call me insisting why I should habit and need it. That's the last resort as we all know and we don't need any more operations or insertions in our body especially with all the scar tissues and spider webs nerves were dealing with thanks. Dawn

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Is hip pain a AA symptom. Knew low back was. My low back and legs hurt.

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2 replies
Donald | @donfeld | Sep 23, 2019
In reply to @haggyrae "Is hip pain a AA symptom. Knew low back was. My low back and legs hurt." + (show)
@haggyrae

Is hip pain a AA symptom. Knew low back was. My low back and legs hurt.

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That sound like the symptoms. Go get an MRI on your pelvic area with contrast that should show at what you need to know

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kimspr3 | @kimspr3 | Sep 24, 2019
In reply to @donfeld "I just been diagnosed with a a and I've been reading about dr. Tennant. I was..." + (show)
@donfeld

I just been diagnosed with a a and I've been reading about dr. Tennant. I was not aware that he lost his license could you tell me more about that if you can and are you following some of his treatments. Have you tried the stimulator which is what the Mayo is suggesting right away as I am not in stage 3 I'm going to Stage 1. According to Tennant he says don't do stimulator until later as stage 3 if if that should occur which I'm trying to prevent. Getting a Little Help from the Mayo Clinic and I don't understand why there's more research or why this more ideas of what to do for preventive care to prevent those nerves to congeal? Is AAA covered under insurance as I'm getting the impression that there's a problem with providers at the Mayo with my condition? Does anybody out there know if I can play golf with this condition and will it get worse because of golf?

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I wonder if Dr. Tennant is the one reading the emails we send? At times I don't think so??????

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