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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: Aug 16 4:15pm | Replies (388)

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@colleenyoung

Hi @dkhouri, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing and active discussion about arachnoiditis. I did this so you can connect with other members like @arannek72 @donfeld @dubis @carolinapearl53 @kimspr3 @jelizabeth and more.

I see you are looking for a specialists in Massachusetts and that you have also posted to this discussion

Arachnoiditis: Trying to find a specialist
https://connect.mayoclinic.org/discussion/i-am-looking-for-a-doctor-in-nc-that-treats-patients-arachnoiditis/

Have you looked into finding a specialist at MGH? Or considered traveling to Mayo Clinic?

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Replies to "Hi @dkhouri, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this..."

Hi Colleen, thank you so much for your response! I have considered travelling for sure, and my life is truly on the line as this has progressed to be eating my body alive. Yet, is very difficult for me to be in the sitting position, so I would need to get a medical flight to Mayo. I would be willing to spend the money to do this for sure, I just need to find a doctor at Mayo and be sure I can be helped prior. Is there ways to do that. Also, as far as Boston, I am having a very very difficult time finding a doctor experienced with this disease. It is very rare so I am not surprised, but I have been bounced around for rover a year, without a management or treatment plan --- while the disease is progressing. I'm beginning to feel hopeless and forgotten. I'm sure many with this disease feel a similar way. What I am hoping to do is find a doctor who has seen and cared for patients with this disease before; that is my main issue locally over the past year. I am not overly willing to risk surgery for a spinal cord stim (unless I can find a doctor who truly has seen patients with AA before) since surgery and scarring is highly risky, and the cause for most people with arachnoiditis.