Book Review?: Arachnoiditis

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Book Review?: Arachnoiditis

Postby phyrehawke » Sat Jul 17, 2010 3:06 pm

Has anybody (specifically w/ SM) read the book "Arachnoiditis: The Silent Epidemic" by Dr. Antonio Aldrete?
Do you have an opinion on it?
Several years back Melana Myers gave me some very good advice about what to avoid with the nerve blocks, and why. I happened upon this doctor's website recently and found to my amazement that SM is considered a form of arachnoiditis (ARC), and the "flares" I get are ARC in it's acute phase. Geeze, and all this time I thought ARC was what I was trying to *avoid* getting! lol I guess it's just the adhesive progression that I was warned to avoid. But so far nobody has told me that SM *is* a form of ARC...does anybody know if this is a true fact? Or is that just this doctor's opinion?

My NL has been extremely helpful in preventing the acute pain from becoming chronic, but it's like walking a tightrope all the time trying to live life in such a way that prevents flares. The reviews of the book sound like it might have some great helps for those of us who live with this and for those who treat us too?
Anyway, I'm thinking about buying a copy, reading it, and passing it on to my NL. I thought I'd ask if anybody else read it.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Book Review?: Arachnoiditis

Postby sheryl » Sun Jul 18, 2010 11:28 am

After reading your post I googled arachnoiditis and arachnoiditis with syringomyelia. I found a few interesting articles. Sounds like the two can be interchangeable at times and maybe a 'medical answer' for those experiencing severe ongoing pain.
Thanks for bringing it up.
Sheryl :)
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Re: Book Review?: Arachnoiditis

Postby chrisw » Sun Jul 18, 2010 5:01 pm

I'm going to order this book, if for no other reason, another reference material.

We, as a forum, tend to describe our pain as "nerve" pain. we don't call it "sm" pain or "cm" pain. This is just like someone with a broken arm doesn't say he has broken arm pain, just pain in it's "usual" presentation. I'm interested in why arachnoiditis is a certain type of pain, to me this is akin to describing pain from a broken arm as a different type of pain than say a broken leg.

Arachnoid usually refers to the skin surrounding the brain and spinal column. Sub-Arachnoid space is by definition where all syrinx's develop. I'm interested in his explanation, it could be that he is describing everything contained within the arachnoid space as a unique type of pain, i.e. "nerve pain". Our "nerve pain" is likely the same as someone who has a piece of metal in the spinal cord, or other various presentations of "nerve pain" and he may have combined all the science into one place with his educated opinion on how to best address our pain.
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: Book Review?: Arachnoiditis

Postby phyrehawke » Mon Jul 19, 2010 10:39 pm

Thanks guys! I'm gonna go ahead and order it too. Maybe I'll learn something really useful?
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Book Review?: Arachnoiditis

Postby blackberrybunny » Sat Nov 13, 2010 5:18 pm

OMG! WHERE are you guys ordering it from? At Amazon.com it's nearly $700!!!

Arachnoiditis: the Silent Epidemic (Unknown Binding - 2000)
2 new from $679.50

HOLY COW!!!
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Re: Book Review?: Arachnoiditis

Postby jswack » Wed Nov 17, 2010 3:13 pm

This is evidently a book that is long out of print.
I'm usually a bit skeptical of books with titles like this. But if you are very curious, a library might have it.
I just searched it in our university library system and nothing came up.
Jeanne in Madison
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Re: Book Review?: Arachnoiditis

Postby Graybo » Thu Nov 18, 2010 10:39 am

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Last edited by Graybo on Thu Nov 18, 2010 10:40 am, edited 1 time in total.
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Re: Book Review?: Arachnoiditis

Postby Graybo » Thu Nov 18, 2010 10:39 am

I did a search and found this page about the book if you are interested. It's $25 plus $4.50 shipping for anyone with arachnoiditis

http://www.arachnoiditis.com/book.asp
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Re: Book Review?: Arachnoiditis

Postby tattoodlb1 » Fri Nov 19, 2010 8:38 am

You're awesome, how's things? My disability came through! It didn't take the pain away (crap) but I'm still here. I sleep ALOT, up to 15 hours a day.... oh well..... it is what it is I guess...... I'm going to get that book, too.
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Book Review?: Arachnoiditis

Postby tlserenity » Thu Feb 10, 2011 7:16 pm

Hi Rozanne -

Long time no talk - since November when my NL looked at my MRI's and Diagnosed me w Stage III- I have learned alot about Adhesive Arachnoiditis. The pain I have with AA is different from Chiari. This pain is different because it is originating from our spinal cord nerves instead of from bones or muscles or an organ - those pains you can pinpoint! This just breaks out all over! It is no FAIR!!! :evil:
I have articles that talk about SM and AA together. Written by the top doctors. I would be glad to share them.
Dr Aldrete is in Birmingham AL. I know about him.

dana! Glad to 'see' you! long time no talk. text me. :)
Terry Lynne
*I am not my pain. I am not my past. I am that which has emerged.*
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Re: Book Review?: Arachnoiditis

Postby phyrehawke » Sun Feb 13, 2011 2:19 pm

Oh yes Terri, please share!!
I still haven't gotten this book, lol...I keep forgetting! I had everything together to mail order it this past summer, and then we had to move, then the holidays, and I seem to be just now getting enough time to get caught up on a lot of things I've had on hold for the past 6 months. So, part of this week's plan is to order that book!

Yeah, and it is good to see Dana back!
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Book Review?: Arachnoiditis

Postby tlserenity » Sun Feb 13, 2011 11:44 pm

Hi Rozanne -

I couldn't decide if I should send you the link on here or not - But here it is http://www.cofwa.org/AASYNDROME.htm
It is quite long - and medical.
This link simply shows the Anatomy of Adhesive Arachnoiditis. Not sure if it will help much - other than if someone wanted to see...
http://www.burtonreport.com/InfSpine/AdhesArachAnatomy.htm

Hope that all helps!
Terry Lynne
*I am not my pain. I am not my past. I am that which has emerged.*
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Re: Book Review?: Arachnoiditis

Postby phyrehawke » Mon Feb 14, 2011 11:31 am

Yeah that helps!! Terri that second website you posted with the anatomy of Arachnoiditis is the best most concise description I've ever seen!
I did not realize that this was so similar to (or could cause) nerve entrapment syndromes, but that makes perfect sense.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Book Review?: Arachnoiditis

Postby phyrehawke » Fri Feb 25, 2011 10:20 am

Hey Terry...that link you posted to the AASYNDROME.htm site is awesome! I downloaded the book and I'm almost done with it. I would actually recommend it for anybody with syringomyelia, but especially PTSM or SM with complications (and let's face it, most of us seem to have them). It's got all kinds of information on the best treatments for neuropathic pain, and what surgeries and procedures to avoid and why. It starts out very technical in the first chapter but once you wade through that the rest is written so that patients are more likely to understand it. It would help many of us with Syringomyelia make better medical decisions over the long run. So while this is a digital book, and a somewhat long one, it is well worth the read to gain a better understanding of arachnoiditis, or just syringomyelia. The second half of the book could've easily been written just for SM sufferers!
So, I highly recommend this for a read!
http://www.cofwa.org/Arachnoiditis.htm

Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: Book Review?: Arachnoiditis

Postby tlserenity » Fri Feb 25, 2011 1:44 pm

Hi Rozanne -

I was taken aback by the length and started out not to read the whole thing...but I kept doing searches in the book on certain terms and soon I just had to go ahead and read it. Yes ~ I was amazed too at how indepth it is. I am glad I was able to help ~ Especially after all the times you have helped me!
I know a lady who knows Dr Sarah Smith (Author)- she might be able to get any questions answered for you - she's arranged it for others on the AA support group (AA = Adhesive Arachnoiditis!). If you're interested - let me know - I will talk to her and give you her email.
Terry Lynne
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