Hi Sherry, I am so sorry that you are dealing with Arachnoiditis/Adhesive Arachnoiditis. I hope that you don't mind my asking a couple of questions... I will also share some similar information with you about my journey. If you're not comfortable with sharing the answers to my questions, I totally understand. Sherry, what type of Arachnoiditis have you been diagnosed with? What type of doctor(s) have given you that diagnosis? How did the doctor(s) determine their diagnosis (ie: what tests were performed and/or surgery(s) performed that showed evidence of this diagnosis?) What type of evidence did they discover that pointed to your diagnosis? How long ago were you diagnosed? I'm asking these questions as I know from my own health journey that some doctors are more thorough then others in gathering evidence to help them accurately reach a diagnosis. In my own long standing health /spine struggles, there are doctors who were/are excellent and who leave no stone unturned in gathering information, that clearly points to a specific diagnosis or various "hand in glove" linked diagnoses. I have had a total of 9 spine surgeries throughout my Lumbar, Thoracic and Cervical spine. In addition, over the span of several years, I have had a total of 28 injections into various levels of my spine, by various types of doctors, - in hopes of alleviating the progressing degree of my pain, from my advancing Adhesive Arachnoiditis, in all three levels of my spine, and the resulting effects on all of my extremities. At first, the various types of injections I received in various areas of my spine, with various pain medications and/or anti-inflammatory medications - helped a "little" bit. Even though initially, some of the injections provided a "little" bit of help, any level of relief that I experienced, was of short duration. Yet, as the various doctors talked with each other to discuss my test results/findings and my 9 various spine surgeries, and numerous injections, numerous therapies , acupuncture sessions, etc , it became obvious that I needed to try a different way to try to deal with my worsening Adhesive Arachnoiditis condition and the resulting 24/7 terrible pain and the effects on my arms, hands, legs, feet, and toes. My choice was to either give into my intense - all over my body 24/7 pain, etc , or I could not let my very heavy pain dictate my life - day in and day out. Is it all consuming? Yes, at times it is all consuming. However, with the help of various very skilled counselors, an excellent Psychologist, and by joining/participating in a couple 12 step - pain management support groups, I have changed my outlook and how I let an "attitude of gratitude" start and end each of my days eith lookong at my life and actually acknowledging, each and every day, all of the wonderful people and wondeful things in my life each day. I practice "Creative Visualization" controlled breathing, and allow my sense of humor to come out in various ways. I have a strong faith thankfully that nourishes my mind, body and spirit. Is there alot of physical issues I have 24/7 - yes, definately. But I am more then my physical limitations. I have become inventive in finding new ways to try to accomplish physical needs, that I never gave a second thought to before my Adhesive Arachnoiditis. If my former "plan A" no longer works for me, and no longer helps me accomplish things in my life - then I try a "plan B" or "plan C" or a "plan Q, R, S..." Sherry what I'm trying to say is that Yes, Arachnoiditis/Adhesive Arachnoiditis is very rare not only in the U.S. but also throughout the World. Is there research being explored ? Not that I have been able to find. No focus groups, no controlled supply groups, no medication studies for our condition(s) and no known treatments. But our life is not just about our Arachnoiditis condition. We are so much more then that. We have a purpose in our life to be present to family and friends and casual acquaintances, and even how we can maybe be a source of encouragement to others we may encounter randomly. I refuse to allow my Arachnoiditis and/or lack of treatment/ and various other health issues to fill all of my time - 24/7 and I hope that yiu will be able to find yiur way to do the same Sherry. You can contact me anytime through this wonderful Mayo Clinic means of communication. May our living Gid wrap His loving and gentle embrace around you and hold you securely and gently, each and every day.
With peace-filled wishes,
mata