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Patient with Adhesive Arachnoiditis in need of help
Hi! I broke my back in 5 places in an accident in 2010, with my L4 being the worst... A compression burst fracture that a nurse said "it looks like someone took a hammer to a cookie." After my first surgery I ended up with MRSA which turned into sepsis and resulted in 3 more back surgeries. After that I had roughly 10 epidural steroid injections but the last one caused extreme pain and I told my husband that night "something is wrong with my body." I refused anymore injections after that and a year after the last injection I was admitted into the hospital because my legs had gone completely numb, my reflexes were gone, and I was falling multiple times a day. That day I was diagnosed by 3 surgeons (and was later confirmed by my neurosurgeon) that I have Adhesive Arachnoiditis and there was nothing they could do.
A few months later my birth control failed and I found out I was pregnant and my pain specialist dropped me. About two years later I ended up traveling across the country to see a doctor in California (we live in Alabama) and her protocol helped tremendously but covid hit and she didn't take insurance. After a year of "visits" (phone appointments) that cost $400 a visit, I just couldn't afford to see her anymore and ended up going back to my old pain specialist. For some reason despite seeing it in multiple MRI reports and having a total of 5 doctors confirming that I have AA, he still refuses to acknowledge it and the diagnosis of Elhers Danlos that the doctor in California gave me. I'm currently not on anything to control the AA except for the occasional medrol dose pack, Celebrex, muscle relaxers, and pain medication which doesn't seem to be helping at all at this point. My days are spent switching between sitting up and laying down every few minutes and screaming when the pain becomes unbearable. Walking has become excruciating and we are looking into getting me a wheelchair. I'm unsure as to what to do at this point... But I can't continue on like this. I was hoping that y'all could point me in the direction of a doctor that may be willing to help. We are willing to travel for treatment. I'm just so desperate at this point for relief that I'm at my wits end... I just want and need some resemblance of my life back.
Thank you,
Stephanie
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I have Arachnoiditis and I am seen by a Neurologist. I have peripheral neuropathy in both legs that is very painful. I am on Baclofen and it helps me. I have back pain to and I take Flexeril and Melxoicam. Hope this helps you.
Stephanie,
I too have had a had a pain specialist not acknowledge my Arachnoiditis even after my spine doctor sent him a letter stating that I did have it with 5 levels of scar tissue in my spinal canal. I too live in Alabama (North) and have had this just a year or so longer than you. My wife has had to endure me with the same pain as you deal with.
I do not know if you have heard of Dr. Forest Tennant in California but his web page gives a lot of directions for living with this disease. It is called Arachnoiditis Hope. Read every section from the home page about causes, symptoms and how to deal with the disease. I had some things going on with my body that I did not know was caused by this disease like ringing of my ears, blurred vision, joints all over my body hurting from head to toe, scar tissue growing in my hands and other places and memory loss. The arachnoid membrane goes from tailbone to your brain and when inflamed it affects a lot. I was talking to a local man a few weeks ago that has a surgery (10 years ago )that fixed his but said the surgery was no longer available because of risk and complications to some patients. He said the surgery completely fixed his and he is doing well. (Laser Spine Institute in Tampa Florida)
It may be available in Canada or Mexico because of regulations and law suites in the USA. That is the first and only time I have heard of anyone having surgery to fix this problem.
I was told in 2009 that I had so much scar tissue in my lower back that I would have a 50/50 chance of coming off of the operation table. So much scar tissue would be covering blood vessels it would be hard not to hit one and bleed to death. Hope this helps. I am just an old man with the same problem. I just trust Jesus to get me through.
Stephen
Hi Stephanie,
You have gone through a lot and it’s not over. I’ve had AA since 1978, so I’ve been around the medical block a few times. THERE IS NO CURE. Read that a couple of times and take it to heart. Our focus needs to be on managing symptoms to recover quality of life. I’m happy to respond to specific questions about any treatment I may have had in 40+ years of dealing with AA, but a real help has come from intrathecal pain pumps (Medtronic or Flowonix) that deliver concentrated medication precisely to affected nerve roots. My first was installed In 2009 and I haven’t taken oral opioids since.
Please keep faith, and keep a journal if you’re not. Try to team with your Doctors to work the process of getting to the best solution you can have. Am I pain free? No. Will I ever be the man I was? No. Can I love my grandchildren? Yes. One foot in front of the other is how we AA FOLKS MAKE PROGRESS— I’m with you and understand what changes and challenges you are facing. Best, Archie2