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DiscussionArachnoiditis: Trying to find a specialist
Spine Health | Last Active: Nov 30 4:16pm | Replies (326)Comment receiving replies
Replies to "I live in Central Florida and have been looking for a Dr/neuroradiologist as well. I actually..."
So sorry to hear this but for sum reason it is hard to get someone to actually write up that you have Arachnoiditis. I have had it for a long time and just found out that a mylagram test with dye will show the Arachnoiditis and you can have your primary order it. It is a 20 minute test, I have a pain pump wich they put the dye in but my pain doctor was able to see everything.
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.
My neurologist is Dr. Ronald Aung-din in Sarasota, FL. He has prescribed Pramipexol 0.5 mg. to me for years. It reduces the number of cramps I have per day in the arches of my feet from ARACHNOIDITIS. His phone number is 941-342-9477. If anyone lives in the Sarasota area, perhaps he can help you. If you call him, please mention that I referred you.
@chrisinasuit Chris, since you live in Central FL, I’m sure the Mayo Clinic in Jax must also have excellent neurologists. I have seen two of them in the past.
Dr. Aung-din is also one of the State’s leading authorities on medical cannabis and was one of three physicians in FL approved to prescribe it prior to the amendment being passed to legalize it in October 2016. He prescribed it for me. I haven’t used it in a year but am considering requesting it again.