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Arachnoiditis

Just diagnosed with adhesive arachnoiditis. After having 6 spine surgeries over the past two years and with the pain getting worse I decided to change doctors and get another opinion. Unfortunately recent MRIs didn't show the problem so a myelogram was done. ( Not the best thing to do with this condition) The test showed the dreaded nerve clumping and the reason for the unrelenting and worsening pain. Two years ago I was happily retired and able to do anything, in good health. Now, I have lost a good 10 pounds due to no appetite and the never ending pain from my neck down to my feet. They don't have a pain management appointment until mid August and I have to rely on my PCP for pain meds which of course come with their own issues. 

Has anyone out there researched or know of someone who tried the stem cell therapy that is available.

I have read about a clinic in Arizona that has treated this disease with some success, including a doctor who for many years was in a wheelchair. This treatment is not yet FDA approved so insurance will not cover it, but although it is expensive it seems to offer hope for remission of the inflammation that causes the nerves to bind together. Any other treatments or meds that you have had success with I would greatly appreciate hearing about. I am trying to gather all of the information I can before my appointment.

Thanks

Bruce

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Comments

  • memerainboltmemerainbolt IndianaPosts: 5,916

    Vi2009

    I am so sorry you are having to go through this. Especially at the time of your life, when you retired. I had finally quit working and I was hit with scoliosis and other spine issues. So I know how you feel. 
    But six back surgeries is a lot and I am so sorry.

    A few people have come here looking for answers to stem cell therapy. But we never hear from them again. If you go to the search box at the top right of the page and key in "stem cell therapy", scroll down past the ads and you will find older discussions on this topic for reading only.

    Take care and please keep us posted.

     

  • Hello Bruce,

    I am suffering with Arachnoiditis as well. I am not aware of any documented outcome for SCT with our illness. Wondering how you allow getting cut 7x without seeking 2nd opinion for whatever you were suffering from. You may have been advised against even considering mylogram under your circumstances. 

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  • Vi2009VVi2009 Posts: 2
    edited 06/16/2019 - 12:52 PM

    Hello stickeone,

    Unfortunately the first surgeons fusions failed, then he left town! I was assigned a new surgeon (at the large SW Virginia hospital where I was being treated) and it took two revision surgeries 9 months apart ( one ACDF and one Lumbar to refuse the failed segments. I had also had two lumbar decompression surgeries, both ineffective, along with a four level cervical fusion.  So, I actually had a second opinion, but I never started to feel better and the second surgeon wanted to operate again, so I decided to go to a doctor at UVA here in Virginia. My current doctor is not a cut first type and after viewing the contrast MRI of my lumbar spine (that had been done this past September) he needed a more definitive test so the myelogram was done. The previous MRI had shown no signs of arachnoiditis but the myelogram done 7 months later in April showed the disease. I do wonder if the dye from the myelogram agrivated the arachnoiditis as things got worse a couple of weeks after the test but with the MRI from September not showing any signs of the disease my UVA doctor had no way of knowing it was there. As my case was considered complicated the CT myelogram is considered the most definitive test for spinal column problems. If I had known the arachnoiditis was present I would not have had the myelogram, but don't we all wish we could go back to correct the future.. "They" claim that the current myelogram dye doesn't affect arachnoiditis, I am not sure on that.  

    The SCT I refer to was done at a clinic in Arizona. A doctor Bomar had suffered from arachnoiditis for years was in a wheelchair and not able to work. She had the therapy and after lots of PT and hard work was able to walk again and go back to her practice. She is in Nashville and her recovery made news on the TV in that area. You can Google it. Now it seems to help some people not everyone who has tried it, is not covered by insurance and is expensive. I was told that this clinic is doing a phase one trial with FDA awareness. 

    There is also the protocols developed by the Tennant Foundation which can be looked up. You can email them for help and they will provide your doctor with the treatment regiment. They have researched this disease more than anyone else except for a doctor in England. As I await my first PM appointment, they had a three month backup,  I have been using some of the OTC meds recommended by the Tennant Foundation to combat the neuroinflammation, as they say to not wait on treatment. The trouble is not many doctors know what this is and how to treat it and as you know there is no cure. 

    Well, that is where I am at this point, and at least my PM appointment got moved ahead a month for mid July! The bottom line is that had I known, I never would have had that first decompression surgery for sciatica in January of 2017!! I tell anyone Surgery is the LAST resort.

    Bruce

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