Robbysmom5 arachnoiditis stuff

[LauraL840]

Doing a little more digging this morning on intrathecal depo-medrol injection and arachnoiditis/meningitis and came across some things you might want to review (if you haven't already found them and done so :) )

The following link details Q&A between two people about A.A. and medical/legal repercussions. The Q&A contains a ton of links to other sites that might be helpful. I think it's going to be vital to separate out Robby's symptoms to determine which are leak symptoms and which could possibly be A.A. related. I'm certain some of the symptoms 'cross over'. I recall A.A. coming up on this board a long while back, if you search under this forum for arachnoiditis you'll probably come up with it. Not sure if that was the title of the thread or if discussion came up through another topic.

The link to Q&A: Q: Depo Medrol and arachnoiditis (http://answers.google.com/answers/threadview?id=352270)

This very short abstract gives the authors email address. I wouldn't hesitate to email authors if you think they can help you get the answers you're looking for! Intraspinal steroids: history, efficacy, accidentality, and controversy with review of United States Food and Drug Administration reports (http://jnnp.bmj.com/cgi/content/extract/70/4/433)

From FDA site:http://www.fda.gov/ohrms/dockets/dockets/06n0525/06n-0525-c000001-04-Drug@FDA-vol1.pdf

Yahoo Group 'Circle of Friends with Arachnoiditis (http://www.cofwa.org/)

THE INFLAMMATORY NATURE OF ADHESIVE ARACHNOIDITIS (http://www.arachnoiditis.info/content/the_adhesive_arachnoiditis_syndrome/the_adhesive_arachnoiditis_syndrome_5.html)

[Robbysmom5]

Hi Laura - I can't even describe how touched I feel by your post -spending your own time helping us on something that is not directly related to leaks. I really appreciate it.
I have come across many of these links before but not all; and I spent a good month pretty much glued to the internet trying to find out if there was a way to stop arachnoiditis from advancing since Robby has been exposed to risks and did have an acute inflamatory response. The only answer I found came from a doctor that used diluted DepoMedrol epidiral steroid injections - "no thanks".
With many family members thinking I am too obsessed with internet research, or others having difficulty relating to the concept that "his doctors do not know", I have really gotten so much support from this forum. Thank you.
Laura - I did look back a while ago (I finally saw the search button) - and see that you brought awareness to arachnoiditis when you heard symptoms of crawling sensations. In reading more threads, it turned out you were right and some members do have arachnoiditis.
I have found the ARAC forum to be the most active and they have been very helpful. I do listen very carefully to all of Rob's pain symptoms so I can differentiate the leak ones from something else. (This forum has been so very valuable in this respect too.) As you say, there is a lot of cross-over. I will also carefully watch his lumbar MRI results. The following link has a good example of what to look for: (in case anybody else was interested)
http://groups.msn.com/ARAC/mriandarachnoiditis.msnw?Page=1

Thanks again Laura.