Arachnoiditis

Topic Suggestion

1. What is the decision or change you are facing or struggling with where a summary of the evidence would be helpful?

We are interested in whether the FDA has approved Steroid drugs for epidural injections of the spine? If no, why?

2. Why are you struggling with this issue?

Because my Neuroradiologist at John's Hopkins University told me that Epidural lipomatosis was caused from steroid overexposure. I feel that the Adhesive Arachnoiditis is caused from the benzyl alchohol and polyethylene glycol stabilizers used. These substances destroy neural tissues in animals and humans.

3. What do you want to see changed? How will you know that your issue is improving or has been addressed?

I want doctors to understand what Arachnoiditis is, what the causes are, acute and chronic cases, treatment Guidelines, long term management, self care techniques, and to learn if it is safe for a person diagnosed with Arachnoiditis to continue to obtain epidural steroid injections?

4. When do you need the evidence report?

Sun, 02/23/2020

5. What will you do with the evidence report?

This report will be used in connection with my meetings on 2/25 with Senator [name redacted] and 2/26 with Senator [name redacted]. Congressman [name redacted] is assisting me with any agency communications related issues.

Supporting Document

Title or short description: Arachnoiditis: what to do and not to do? A review  

Comments or notes about this file: There is some new material used and it's called "The Way Forward" by Tennant Foundation. Additional written request to be followed.

(Optional) About You

What is your role or perspective?

Patient

If you are you making a suggestion on behalf of an organization, please state the name of the organization:

Living with Arachnoiditis

May we contact you if we have questions about your nomination?

Yes