Arachnoiditis: Trying to find a specialist

Posted by msaliceinpain @msaliceinpain, May 22, 2016

I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.

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@sashadeltop

Looking for a doc in Phoenix or Scottsdale az

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@sashadeltop Welcome to Connect. I found this list of neurosurgeons at Mayo in Phoenix, and it continues to a second webpage. Here is the link: https://www.mayoclinic.org/departments-centers/neurosurgery/sections/doctors/drc-20117103?locations=Phoenix%2c%20AZ#9f586ff3a6124d46a257480316484847

In order to get more specifics on any of these surgeons or to seek an appointment, please contact Mayo Clinic with this link that can be used for any of the campuses. http://mayocl.in/1mtmR63

Have you been seen by a neurosurgeon before?

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@sashadeltop

Looking for a doc in Phoenix or Scottsdale az

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Yea I need to find one that deals with arachnoid cyct or arachnoiditis

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I’m looking for a doc to diagnose me I have all the symptoms of aa I love in Phoenix az

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@sashadeltop

Yea I need to find one that deals with arachnoid cyct or arachnoiditis

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@sashadeltop I had also pulled up this search for surgeons listed who treat arachnoid cysts, and there are some at Mayo Rochester. There could be some in Phoenix, so it may be worth asking. Here is the list I found for Rochester:
https://www.mayoclinic.org/search/search-results?q=arachnoid%20cysts

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@jenniferhunter

@sashadeltop I had also pulled up this search for surgeons listed who treat arachnoid cysts, and there are some at Mayo Rochester. There could be some in Phoenix, so it may be worth asking. Here is the list I found for Rochester:
https://www.mayoclinic.org/search/search-results?q=arachnoid%20cysts

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Thanks so much

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Hello. Hope all are well. I've been suffering with pain for 7 yrs after having a transforaminal epidural injection.. recently diagnosed with arachnoiditis. Having a difficult time finding a Dr that is willing to treat me. Hoping to find a doctor in the Massachusetts/ new England state area. And recommendations would be greatly appreciated. Many blessings to all

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I know this is an older post but I have a lot of the symptoms of adhesive arachnoiditis .. it’s pretty much the severe stage of symptoms.. I cannot find a dr in Colorado to test me but wondering where I could go or contact.. thank you ..

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If you’re doctor won’t test you, go to you’re family doctor and ask for MRI. That’s how I was diagnosed with adhesive arachnoiditis. There are several types of drugs you can take to help. I have a pain management doctor and he is the best!Of course, I live in South Carolina.
You can find someone to help, do not give up!

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If you had an MRI, that’s the only way to know if you have this rare disease. Lots of reasons for you to have this terrible problem. I am currently on Fentanyl patch, Marinol, hydro cod one as needed. I didn’t want a pain pump..there are doctors that can help. Usually they are anesthesiologist and have a pain clinic also.
Good luck!

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