Arachnoiditis...anyone familiar with this diagnosis?

Discussion in 'The Watercooler' started by ksm, Oct 6, 2017.

  1. ksm

    ksm Well-Known Member

    my son is 43 and has had two spinal fusions over the last 17 years. And because of tests and treatments has had quite a few epidural steroid injections and dye injections for radiology exams. He has had two spinal fluid leaks requiring blood patches. The last one was 6 months ago. Within two weeks he was unable to continue working. He used his 6 month disability policy, which has now expired, along with his job and health insurance.

    This week, I got him in with a doctor I trust. Not an ortho or neuro surgeon...just a general practice doctor. We found on the CT myleogram that he has arachnoiditis. It is a chronic, debilitating spinal condition where the spinal nerves clump together and adheres to the spinal canal.

    I found some info on line from a pain management doctor in CA who has a list of supplements and vitamins to take to keep inflammation under control. One item was anyone familiar with it? I would probably need to order online, as I don't trust the quality from local smoke shops. And what is the best way to take it...and how much and how often. I have heard that there are different Kratom blends...what is best type for back and nerve pain?

    I also want to order Boswellia capsules...anyone familiar with those?

    My son is just starting the SS disability case scenario...6 to 12 months.

    No income, no insurance. His girlfriend lives with him and will be paying most expenses for day to day. I am trying to cover medical expenses.

  2. GoingNorth

    GoingNorth Crazy Cat Lady

    Kratom is illegal in some states and well on its way to becoming illegal nationally. It is as addictive as the opioids people use it to replace, and not particularly known for its efficacy against nerve pain.

    You might want to try CBD, which is a non-THC extract of hemp (cannabis). It is legal in all 50 states and is effective for many against nerve pain (and anxiety). Lyrica and gabapentin are also effective for many, as are tricyclic antidepressants.

    Please talk to his neuro about those before considering kratom.
  3. Crayola13

    Crayola13 Active Member

    The DEA is trying to ban it nation wide. It already is illegal is various states. I've read the side effects can be nasty.

    At Walmart you can get a boswiella blend tablet that includes tumeric and some other herbs for $18. I take another blend available at our local herb shop for the pinched nerve in my hip. It's not exactly the same thing, but similar.
  4. ksm

    ksm Well-Known Member

    Unfortunately, he has no insurance, and when he did he saw a neurosurgeon who had nothing to offer since surgery is not an option. $400 for nothing. Even with insurance, it didn't pay anything.

    At least the new doctor is trying Cymbalta...and if that didn't work, will probably try Lyrica next. But she had samples of Cymbalta...

    I have downloaded info from an arachnoiditis specialist and Kratom was listed for pain. On an arachnoiditis forum, many patients are getting pain relief from it and lowering or eliminating opioids pain medications.

    There really is no curing this...just trying to keep flares up from happening.
  5. ctmom05

    ctmom05 Member

    as your son beings the disability determining process, he be as ultra clear as he can with the details, but not overly wordy, & fill out the paperwork neatly .. .. .. this all helps, even tho it may sound inconsequential
  6. GoingNorth

    GoingNorth Crazy Cat Lady

    One thing my attorney had me do, was fill out a very detailed report on exactly how my disabilities were affecting not only my work life, but my day-to-day life. As I was filling out the report, I was astounded at the true impact my disabilities were having on me. to put this? Describe your worst days, not your good days.

    Of course, this was for SSDI, where we were going for a percentage of my earning in the workplace over a period of time, as opposed to SSI. I am not sure whether one does or can use an attorney for an SSI filing.

    Best of luck, either way.