Practical Pain Management Community Advice

Anyone with Arachnoiditis

From: Theresano66 - 5 years 28 weeks ago

I am desparatly looking for anyone that has been diagnosed with Arachnoiditis. If you have this please reply or contact me at theresano66@hotmail.com
I was diagnosed with this 7 years ago and have yet to find any that has it. I really just want to compare notes one what works and doesn't work for you.
Thanks

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Hi Theresa,
my name is derek and I too have Arachnoiditis, {Chemically Induced Adhesive Arachnoiditis) I live in Australia and I am one of 186, 000 with it here, furthermore, I have completed 15 years of worldwide research into its cause and affect, see Youtube Arachnoiditis.
Hope to hear from you, 'you are no longer alone'.
Derek
Aussie Redback

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I suffer with Arachnoiditis, as you do, and have done so since the year 2006. I was in an automobile accident in July of 2003, and because of it, have been through 2 cervical disk surgeries, 1 lumbar disc surgery, a myelogram, and many, many, more than I can remember, epidural, steroid injections, in addition to other various spine and nerve tests and x-rays. One, or more than one, of the above things, injured my arachnoid layer and caused my Arachnoiditis diagnosis by Dr. Antonio Aldrete, one of the leading experts in the field. My husband and I, along with the results, films, and/or disk of every test, x-ray, or other procedure done, and every doctor's visit with its notes, met with Dr. Aldrete from 9:00 a.m. until 5:30 p.m. that particular day, with only a 15 minute break during that time. He went over every detail, no matter how small, of every note, every x-ray, and any other information I, and he, had obtained, discussing whether or not I had Arachnoiditis and why I did or did not.

A few weeks later, I received a 40 page report about my condition, how I needed to handle it, things that I could do to help or hinder it, or in other words, anything that would help me in talking to my doctor's that I would see, dealing with it on a daily basis myself, and how I could deal with the condition throughout the coming years. I also received a book he has written, "Arachnoiditis: The Silent Epidemic" . It is a little deep and sometimes hard to understand, but when I came to those parts, I would type that particular phrase into my search engine, and it would help me understand more about what I was reading. His website ishttp://www.arachnoiditis.com/ I am not sure if he is still practicing, as he is advanced in years, but he is very, very knowledgeable about this disease and at one time, would willingly answer any questions you might send to him about your condition.

If you have any questions for me, I would be more than happy to try and answer them although I am by far, no expert in this field. I do have to deal with the pain and other symptoms associated with it, and totally get how nice it is to talk to someone who understands what you go through and cares about the fact that you do. My email address is bargainmom10@live.com. Feel free to contact me any time you need a friend or shoulder to lean on when it comes to this horrible diagnosis and disease.

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Hi I was reading your post I was just diagnosis with Archnoiditis by Dr. Aldrete from what I have been told he is a well known Dr.that knows what is going on. I'm about to email u for us to talk more it's good to have a person knows what you are going thru.

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Hi Theresa, I have arachnoiditis also. Not much fun is it. Unfortunately I also have a gene in my liver that processes out narcotics before they can help much. If you live in the Sacramento area of California you can contact the UC Davis pain management group to see if they can help you. Also, there is a Stephens Pain Management group that I go to and they are very aggressive in treating conditions like ours. I wish you the best of luck in finding help. It's out there if you can find a compassionate doctor who hasn't been put out of business by the DEA. Regards, painguy10.

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Hello all.

I just joined after finding this website, which never showed up in all the years I had searched…odd, that. Anyway, I was wondering if any are still here who have AA? It is my husband who has had it for years, after an injection that was sloppy.

With the new regulations and fear-mongering concerning opiods, he and others have been shifted over to a pain management group, wherein began the difficult process of moving him off the meds that worked for seven years to ones that don't do so well.

The process continues and the pain management group wants to "improve" his condition by moving him over to Cymbalta and Tramadol and weening him off the Exalgo with occasional Horizant (both Extended Release) thus getting all their patients off morphines. He cannot take Oxycontin because it significantly increases his blood pressure.

The pain management group, which is associated with our major hospital actually had to research AA to find out what it entails and is now researching treatments for it that do not employ opiods. When he first transferred there, they offered him some general-type pain killer that would have been like urinating on a wildfire. He told them no….and there began our most recent journey and battle to get proper pain control from the politicized medical world.

So…has anyone here had experience with Cymbalta? And were you able to discontinue your opiods?

As an aside, my husband is in otherwise good health, no surgery, and he drives a school bus, works a 400 acre farm and we raise broiler chickens for Tyson Farms…plus he is currently restoring the complete sub-floor, including joists in his parent's older rancher. This is his life and he is not looking to alter it….just regain control of his pain.

Thanks for any help and gentle hugs to you all.

"The Ox is slow, but the Earth is patient."

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Hi JLocke, Yes I too have Adhesive Arachnoiditis. Also from a 'bad stick'. There's actually quite a number of us. I know there's some groups of FB. I work with Dr. Forest Tennant long distance. He's the only practicing expert on Arachnoiditis in the US. He's the editor for PPM (this publication), wonderful doctor, and a real human being. I'm just starting his protocol. You're welcome to look me up on FB, or we can communicate this way. Not sure how private this is. I'll also send you an email. Wishing you all the best. Your husband sounds like he's doing very very well actually! :)

Wanted to add a note that yes Dr. Aldrete is a fabulous doctor for Arachnoiditis as I understand it, but he has retired.

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I posted a response just now, but thought you had posted an email as well. Sorry, I was wrong. My apologies.

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I was diagnosed with AA 28 yrs ago, following double lamemectomy in 1989. Er morphine, which I reduced by 2/3 and held there by using exercise, nutrition, lifestyle changes. A year ago, I was refused any more opioids on moral , not medical, grounds so I went home over the holidays at almost 68 and withdrew. That was the easy part. I still cannot find, after 4 pain management clinics in MN, any specialist willing to incorporate er pain med-, in conjunction with PT, Psych, etc. I continue suffering 24/7; a year of this and I've just about had it. "Pseudo_addict"

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Dear Theresano66,
We recently published a letter to the editor and a response in our November journal. You may find it here on page 2: Letters to the Editor: An opportunity to learn what is on the minds of your colleagues and patients .
Sincerely,
The PPM Editorial Team

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