Adhesive Arachnoiditis & the Effects on Walking. Anyone else?

Hi guys, I am also in an arachnoiditis group on Facebook that is quite informative and a great support group. They are also hooked up with Dr. tenant which is an arachnoiditis doctor. He sends out bulletins every week on new stuff if this is of any interest to you. I am Cindy Small on Facebook.

I'm looking for a support group not on FB but on zoom or Skype any info?

Hi hun in that arachnoiditis group the administrators hold weekly live meetings. They keep all the information on things that work and things that don’t. I really believe you can connect to someone on there. maybe we can talk and I can find out info for you from my fb arachnoiditis group. My name is Cindy Small. Hope this helps. It won’t let me send you my email . I am sorry. But you can get me on Facebook then we can talk privately though messenger

Hi Cindy, thanks for reaching out. First I do have a FB account but I don't know that much about it and I do have messenger too, I will try and look you up... I've had AA for 15 years now, I was seen by Dr Tennant a while back, things are getting worse now,I'm on a walker,we will talk more on something else.

I was diagnosed with AA in the early 70s after a laminectomy. I haven’t been totally pain-free since then, though I have had extended periods of time where I didn’t require medication. I was unaware that AA could have been affecting my back problems through all these years. I thought my bladder issues, where I had to be catheterized every few days, was the major symptom of AA and when that subsided the AA was healed.
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My AA reared its ugly head a few weeks ago and I’m still feeling the effects of it. I have had a Medtronic pain pump for about two years now and that has done wonders, but it didn’t help the severe muscle spasms I had a few weeks ago. That’s when they gave me the diagnosis of AA again. My pain management doctor is going to add baclofen to my next pump refill which should be next week.
I have had spinal issues since I was 10 years old, but nothing scared me like my AA flare just did!

@JustinMcClanahan...I was diagnosed with phase 3 Adhesive Arachnoiditis May 2009. This was due to Failed bloody Lumbar Puncture on December 10, 2008 resulting in Chemical Meningitis. I was hospitalized for 2 weeks in isolation ward. Balance, gait has progressively gotten worse. I cannot drive and use 4-wheel/rollator walker and occasionally a cane to get around. Falling is a normal occurrence (I joke about "falling over air"). Bladder and bowel issues. My life as I knew it, stopped when my spine was punctured during the failed bloody lumber puncture. SCS implanted August 2009 and helps with about 50% of pain. Didn't want intrathecal pain pump.

@sophie46 I just found out that if leads cannot be place for a trial, at least with Medicare, it is considered a structural issue and will still allow a final stimulator. My doctor is putting a paddle in on the final which does not migrate like the leads and gives better coverage. I am using the Boston Scientific WaveWriter, the most comprehensive coverage available without the tingling.

@top1sgt Did you do the trial of the pain pump? It is often done with an injection of hydromorphone or Morphine. I had a successful trial but the permanent implant has not helped.

@tintagel If the leads could not be placed for the trial, what makes them think that a paddle lead can be placed effectively.

From AI basically. Trial leads come in the cauda equina area at the base of the spinal column. Permeant paddles are placed higher entering from the back at least in my case. Paddles cover more area and are place higher to utilize that ability. I am in process of a trial. I am getting a paddle not only for coverage but because the paddle is better for AA patients. Leads migrate. Paddles are put in by a neurosurgeon, and they take some bone out, place the paddle on the bone, and over six weeks the bone will adhere to the paddle. The paddle will then not migrate like a lead which is one of the most common complaints of all patients, including AA. One other thing, the paddle is better at keeping power (electricity?) from irritating nerves, at least the one I am using. This is off the top of my head from research done in the last couple of days, but I think it accurately tells what I learned from AI.