Hi Chris, thanks for your sweet answer and comments. Yes, indeed, we had laminectomy around the same time, though mine was due to a bad fall which ruined my spine several years before, and was misdiagnosed at first as "kidney problems." Well, I was living in South America at the time....not much help there. When I finally got to a US hospital it was the era when there were no MRI´s yet, and all that was used was a chemical (produced by Eastman Kodak) called Pantopaque, which was sent into the spinal cord to determine where the problem was. I actually could see it as it went down to the obstruction or fractured vertebra. That chemical was taken off the market right around the same time, but it continued to actually be used for several years...in spite of an FDA Whistleblower complaint.

In the UK and Australia it was called Myodil. Same stuff though, and the "chemical insult" caused arachnoiditis, which is now at the adhesive stage, and perhaps the next stage (ossificans). Patients all over the world acknowledge it, but in this country it is NOT. Because of its iatrogenic nature. In fact, in 2010 there was a worldwide conference in France about Arachnoiditis....that´s where I got the name of the ONLY US speaker: Dr. Antonio Aldrete. The older doc who gave me a 5 hour appointment in the Florida Panhandle, with all my films for diagnosis. And confirmed the dreaded ARC.

I´m actually coming to Mayo not for ARC, but for Normal Pressure Hydrocephalus. The reason I mentioned being scared is because the spinal tap for NPH is a No-No for Arachnoiditis....and I worry about how Mayo will get around that aspect of diagnosing NPH, symptoms which are increasing day by day. However, my evaluation is scheduled to be with a true expert in NPH, hence I do have hope. Apparently a diagnosis cannot be confirmed unless the spinal tap can help determine the pressure of CSF traversing the spinal cord through the arachnoid villi. And whether brain surgery to implant a shunt will be feasible. This is the longest I´ve written about my condition, and today I seem to have let loose. But I wanted to explain that maybe it was an exaggeration to say I was "scared to death." I know coming to Mayo is the best I can do,.. and I do have faith.

I wonder if in the future I should write on a "private" basis. Don´t mean to bore anyone, yet, maybe there are some worthwhile kernels for somewhere else. I do reiterate: read all you can, and keep reading. There is now so much out there....which didn´t use to be the case. I´ve been reading, copying, highlighting, and making 3-ring binders for at least 9 years now. And it does help. Ultimately this falls within Central Nervous System, Pain and Arachnoiditis interest groups....so I do hope not to bore anyone or sound repetitive..... We have to be aggressively pro-active about it all!

Have a good week Everyone!