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Fri, Jan 11 10:49am · I am desperate to find a dr who treats arachnoiditis. in Spine Health

I was so naive, but am learning that some docs are just not in it for the patient’s best interest. I was “diagnosed” in July 2018 after my husband demanded that the nurse practitioner (for the back surgeon) give us more/better/different answers to what I was experiencing. She looked back at an MRI from October 2017 and said "when did you have the MRI with contrast?" I explained that I had never had an MRI with contrast – that I wasn't told to or scheduled for one. She told me that the radiologist saw indications of arachnoiditis on the MRI, but wanted to confirm. A week later, it was confirmed and the back surgeon told me that he could do surgery on my spondylolothesis, but not the arachnoiditis. I had looked it up after the first mention, so I declined surgery since I've read that it makes the AA progress faster. No doctors here know ANYTHING about AA – all they want to do is inject me or cut on me. I'm desperate to see a doctor who understands what it is and how much it hurts (and affects my LIFE!). I just requested all of my records from the spinal surgeon’s office because my primary doc said there’s no me too. Of arachnoiditis in the reports he received from them. They are al making me feel like I’m crazy! I didn’t self-diagnose this – I had never even HEARD of it. Having said that, I does explain the horrible electric pains I’ve been describing for the past year-and-a-half. I use a TENS unit almost 24/7. It helps me sleep a bit longer, but sometimes the sticky pads come off at night and that wakes me up. I’m on gabepentin (1200-1500mg/day), diclifemac and Lorzone. I’ve repeatedly declined narcotics because my husband was out of town and I had to be able to drive my daughter to/from school and activities. She is now 16, though, so I’m contemplating asking for them. Since I previously declined them for the past year and a half, Doctors seem to not believe the pain I’m in. I have an extremely high threshold for pain. Having said that, I’m trying to ween back into my normal (pre-AA) active life… Which puts me in even more pain. I wish there was a way of allowing a doctor to experience this feeling.

Wed, Jan 2 10:34pm · Arachnoiditis in Chronic Pain

@racelarachgirl – which doctor did you see at Mayo? I was diagnosed in July 2018 after my husband demanded that the nurse practitioner (for the back surgeon) give us more/better/different answers to what I was experiencing. She looked back at an MRI from October 2017 and said "when did you have the MRI with contrast?" I explained that I had never had an MRI with contrast – that I wasn't told to or scheduled for one. She told me that the radiologist saw indications of arachnoiditis on the MRI, but wanted to confirm. A week later, it was confirmed and the back surgeon told me that he could do surgery on my spondylolothesis, but not the arachnoiditis. I had looked it up after the first mention, so I declined surgery since I've read that it makes the AA progress faster. No doctors here know ANYTHING about AA – all they want to do is inject me or cut on me. I'm desperate to see a doctor who understands what it is and how much it hurts (and affects my LIFE!). Thank you in advance!