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missroz
@missroz

Posts: 2
Joined: Nov 10, 2017

Doctor vs my Dx

Posted by @missroz, Dec 29, 2017

I visited my doctor today and proceeded to tell him I did research on Arachnoiditis which is the cause of most of my complaints. He argued with me and told me I did not have arachnoiditis . I showed him reports that showed other issues in my spine . He asked how did I know I had this disease. Even when I said it was Surgically confirmed, after three years of plates, instability etc. the goes on
I have been his patient for 20yrs. Why doesn’t he know!

REPLY

@missroz

I know that some doctors have a God complex, and can’t believe that a patient might know more than they. I’m learning how important it is to speak up and advocate for ourselves. We can’t be intimidated by them or be afraid to speak up. It’s our health that’s at stake.

There have been times when I wasn’t able to absorb or remember what doctors said, and I was careful to schedule appointments when my wife could be there with me. I’m in a better place now, and don’t need my wife to go with me every time, though if I’m seeing a new doctor, it’s helpful to have her with me.

Have you talked with other doctors about the arachnoiditis? Someone else might have a fresh perspective. Don’t give up. I’d like to know how things progress, so keep us posted if you can.

Jim

Liked by Parus

Does anyone know what causes these type of nerve issues??

@parus

Does anyone know what causes these type of nerve issues??

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Hello @parus. Here is what I was able to find out about arachnoiditis, which is still in the process of being researched.

Arachnoiditis is a pain disorder caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the spinal cord. Severe stinging, a “burning” pain, and neurological problems characterize the condition. The arachnoid can become inflamed from any of the following: Direct injury to the spine, Chemicals, Infection from bacteria or viruses (viral and fungal meningitis or tuberculosis), Chronic compression of spinal nerves, and Complications from spinal surgery or other invasive spinal procedures.

Arachnoiditis can be diagnosed using a CAT scan, MRI, and a few others.

@missroz, your experience sounds rather frustrating. You mentioned that it was diagnosed during a procedure, was that documented in your records? @jimhd is right, sometimes patients have to be his or her own best advocate. Mayo Clinic released posted a story earlier this year about the benefits of second opinions, https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/. @missroz, have you thought about getting a second opinion?

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