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msaliceinpain (@msaliceinpain)

Arachnoiditis: Trying to find a specialist

Spine Health | Last Active: Oct 7 7:27am | Replies (266)

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Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis which I have had for decades, I live in Fond du Lac Wisconsin. I do not know why it is hard to find excellent help for it. I had a head on collision on Easter Sunday which I believe has been the cause of my Arachnoiditis to go into over drive and no one seems to know how to help me. No one can really understand how horrible this disease is; I can not sit down without extreme pain. Any one who knows a physician outside of the Agnesian Health Care system please let me know.

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Replies to "Hi, I too am looking for a specialist who understands and is very knowledgeable about Arachnoiditis..."

Hi Busterbrown,
Welcome to Connect. I’m also tagging @jlfisher56 on this discussion.
It is difficult to find a good pain specialist who is taking on new patients. While we wait for members to join this discussion with recommendations, I thought you might appreciate this article about Arachnoiditis from NORD (National Organization of Rare Diseases), which includes information about investigational therapies.

How are you managing your pain at the moment?

@busterbrown Here is the link that Colleen referred to from NORD, https://rarediseases.org/rare-diseases/arachnoiditis/ Best wishes you as manage your pain. Teresa

Oops I forgot the link. Thanks Teresa.

Hi I also have Arachnoiditis and live in Wisconsin I would suggest Dr Stauss in Madison at Advanced Pain Management he has put in my pain pump.

I have adhesive arachnoiditis.. I have been in horrible back for many years I’ve been on the same medication for 18 to 20 years I am now in so much severe pain after having a spinal cord surgery done in 2016 and left me with this disease I need to find a doctor that is not afraid to prescribe pain medication for people that are truly in severe pain why are we treated like junkies on the street we are not friends I am a 68-year-old mom and grandma I want to be able to enjoy my family right now I have no life I just exist in pain excruciating pain every day of my life I need help please anyone in the South Jersey area from Blackwood..Sewell Turnersville or Williamstown New Jersey please help me please thank you so much and God bless you.