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Arachnoiditis: Trying to find a specialist
Spine Health | Last Active: Nov 30 4:16pm | Replies (326)Comment receiving replies
I live in Central Florida and have been looking for a Dr/neuroradiologist as well. I actually posted for a recommendation yesterday on one of the Arachnoiditis fb groups that I am in. I saw a pain doctor in March 2015 who, very matter of factly, scheduled a series of spinal epidural injections for me without any prior testing done. After the first injection I had numbness that lasted longer than it should have but was assured that happens sometimes. Before the second injection I was asked my pain level which was a 6/7. As soon as I woke from anesthesia I said something was very wrong. My pain was a 9/10 and I could tell there was something different. When it didn’t get better after steroids I insisted on an mri which was done at the local imaging center. The results listed “no Arachnoiditis found” which I found odd since I had never heard that word before. I had posted my experience on fb and a friend said I probably did have Arc from the injection and the imaging center was probably owned by the same doctors as the pain center. She suggested I send my disc to Dr Aldrete in North Florida. I sent my disc to him as well as a neurologist, Dr Sauborm, in California. Both doctors responded with detailed reports showing specific images with evidence of the early stages of Adhesive Arachnoiditis. The mri was just weeks after the second injection. I took both reports to my primary doctor who was friends with the local radiologist. He called him while I was there and went over the reports explaining everything the specialists found. The local radiologist refused to change his report. Shortly after I received a certified letter from the pain doctor saying that I was no longer welcome as a patient. That was almost 5 years ago now and my health has been steadily declining as my pain levels have been increasing. I am still fighting for disability because of the local radiologist’s reports of no Arachnoiditis and the fact that I “paid for outside reviews”. I am now fighting at the federal, and final level for disability. I have learned a lot in the past few years about the disorder, especially that I need to have a follow up mri to see how far the disorder has advanced but if I go to another doctor or another radiologist that is not familiar with Arc and does not know how to diagnose it and ends up misreading a new mri, no matter how evident the Arachnoiditis may be, he/she can destroy my chance of getting effective treatment in the future. I continually hear that I don’t qualify for this or can’t receive that because “I do not have a definitive diagnosis that would warrant it”. I use aids in my everyday use (cane, walker and wheelchair) my husband has to help me shower/dress and so many days I can’t get out of bed at all. Finding the right doctor with the knowledge of diagnosing and treating is such an important step. One I have been praying for and working so hard to find for almost 5 years now so if anyone knows of one please share!
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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.
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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.