I am desperate to find a dr who treats arachnoiditis.

Posted by B foreman @bfsecurityguy, Jun 22, 2014

I am desperate to find a dr who treats arachnoiditis. I live in lake county and no one around here can help me. I have been in pain management for almost 3 years. I want out!!!! I want my life back but can’t find anyone who wants to help me..I’m so tired of being in pain, feeling like a failure to my family and feeling alone. Any help much appreciated.

@marilynmeadors

I just need to find a neurologist in Arkansas, preferably in Fayetteville, who can diagnose this ailment. I’ve read that it is difficult and it takes special tests.

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Welcome to Connect @marilynmeadors
Here is a link to the American Medical Association’s doctor finder https://apps.ama-assn.org/doctorfinder/home.jsp. You can enter your zip code and find a physician or specialist in your area.

Have you considered traveling to one of our Mayo locations?

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@bfsecurityguy, I’m just wondering if you’ve found a Dr. In your area to treat you. I believe I may have arachnoiditis also, and need someone who can treat this.

Liked by kimkjc2, annmaria

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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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@busterbrown

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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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?

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@busterbrown

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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@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

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@busterbrown

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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Oops I forgot the link. Thanks Teresa.

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@colleenyoung Hi Ms. Young! I was searching for a dr./specialist in my area that specializes in Arachnoiditis and just saw your replies above. Can you please help me find someone near Hickory, NC? Thanks so much!!

Liked by kimkjc2

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@charmyachicago

Find an intractable pain doctor for palliative support

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@charmyachicago
Hi! How do I find this kind of dr in my area? I’m in western NC. Thanks!!

Liked by kimkjc2, annmaria

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I’ve had arachnoiditis since 2012. It has been a tough fight and doctors that have any idea how to help are almost impossible to find. I finally found a doctor that wasn’t just saying they knew what the disease was. He actually does. He implanted a pain stimulator which is helping quite a bit. He’s in Tennessee so not real close to your location. Do not let a bad doctor implant a pain pump. They are only making money off of you and not trying to help That isn’t for our disease. I hope that helps.

IMG_0391

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Hi Buster brown I am Joan. I started with arachnoiditis in (probably 1994), but was diagnosed with a discogram in 1999 after a failed back fusion. I had gone to Hershey Medical Center and was told it was one of the most painful conditions there is and when my husband was alive, he was tested at Thomas Jefferson in Phila, PA (he didn’t have it thank goodness) and was told the same.There is no cure. The spinal nerves are full of scar tissue and you can not “mess” around with them.
More info is on the internet of causes, such as epidurals, spinal taps, viral infections, myelograms with certain dyes, FAILED back surgeries, certain medications placed in the spine, i,e. It is a very painful condition. Usually a “big”, medical center that trains physicians with an “acute” and “chronic” pain center knows all about this. Best of luck. I will have NO ONE mess with my spine where arachnoiditis is. No SPINAL TAPS, NO MEDICINE PUMPS there (one dr stated he wanted to place one where the scarring was…no way!),
Sometime pain patches on the skin work well besides oral medications. Even some medications you can rub on like Voltaren gel as an adjunct. There is no cure sadly but since I first was diagnosed, they have been many more discoveries of causes and trials in treatments. Pray you find relief!

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@ledgerwp

I’ve had arachnoiditis since 2012. It has been a tough fight and doctors that have any idea how to help are almost impossible to find. I finally found a doctor that wasn’t just saying they knew what the disease was. He actually does. He implanted a pain stimulator which is helping quite a bit. He’s in Tennessee so not real close to your location. Do not let a bad doctor implant a pain pump. They are only making money off of you and not trying to help That isn’t for our disease. I hope that helps.

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Hi Pam,
thanks for adding your picture to this post. Might I suggest uploading the picture as your profile image. Here’s how:
1. Click your @username @ledgerwp. This will take you to your profile page.
2. Click Edit.
3. Click Change Photo.
4. Choose your photo file.
5. Save Picture.
6. Close X the pop-up.

PS: Great info about the pain pump. I’m glad it is working for you.

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@Tbato622

Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.

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Hi I was just diagnosed with Arachnoiditis. I’m heartbroken. I’ve lived in pain since I’ve been 34(49 now). I had surgery a few months, lost a lot of blood, had a brain aneurysm and was also diagnosed w/ cancer. My back pain was getting worse, I was getting so bad I was having a hard time just getting up on the table for my cancer treatments. Now I just have spasms that are crazy. The MRI showed Arachnoiditis and a 3×7.8cm seroma. Who can I go to? My surgeon is blowing me off. My pain doctor said a pain pump will give me releif. Should I go to mayo. Do they treat this? Thanks everyone. Sorry you all suffer too.

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@Tbato622

Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.

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Hello @lconroy

I am sorry to hear of your multiple diagnoses. It sounds like you have a lot of concerns and your back pain seems to be adding to your stress. It appears as if this is your first post on Mayo Connect, so let me welcome you!

We are glad that you posted about this rare condition of Arachnoiditis. I “googled” the term and came up with the following information from the Rare Dieseases website, https://rarediseases.org/rare-diseases/arachnoiditis/. I also have a rare disease, neuroendocrine tumors (rare form of malignancy) and I know that the lack of information can be frustrating indeed.

Mayo Clinic Connect also has a discussion of others with arachnoid cysts, here is the link to that conversation, https://connect.mayoclinic.org/discussion/arachnoid-cyst/?pg=1#comment-70720. I would also like to direct you to a Mayo Connect group that discusses chronic pain, https://connect.mayoclinic.org/discussion/welcome-please-introduce-yourself-welcome-to-the-new-chronic-pain-group-im/?pg=96#comment-68337. Many of the people who have posted in these discussions have developed some coping strategies, perhaps it will help you to find a way to cope as well.

We have a number of very supportive people who deal with chronic pain on a regular basis. I would like to invite @jimhd and @johnbishop into this conversation as well. They are both volunteer mentors with Mayo Connect and I know they have had severe problems with chronic pain as well.

From reading about Arachnoiditis it sounds as if there is no surgical cure, but that physical therapy is helpful for many people. Have you had any PT so far? What have your doctors recommended to help you deal with the pain?

Teresa

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This isn’t going to be much help, I’m afraid. I don’t have arachnoiditis, but I do have Primary Systemic AL Amyloidosis. Finding a doctor within a thousand miles who treats it, and wants to treat it, is nearly impossible. Actually, at my age, 77, having a diagnosis is really only a more realistic life-span prognosis, even with the new meds and procedures. But getting a Medicare-accepted diagnosis is almost impossible. The Bindings sFLC assay,which is said to be 100% sensitive and accurate, is good only if one can find a doctor to work with Mayo, get Mayo to work with that doctor, and get Medicare to accept that procedure. And about pain. All the local docs want to do about pain is get you hooked on MM. I think they grow the stuff in their desk-top greenhouses.

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@Tbato622

Hi. My name is Theodora. I too suffer from arachnoiditis. I am a patient of Dr. Lubenow Rush Chicago. Yes epidurals,mylogram, etc do cause arachnoiditis. I live in severe pain every waking moment!! I also have an intrathecal pump implanted in my abdomen. Plz respond. Any recommendations would help. Need support group.

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Hello @lconroy, I also would like to welcome you to Connect. Teresa (@hopeful33250) has given you some good information and links to get you started until others join the discussion. One of the best things you can do for yourself is to learn as much as you can about your health condition/diagnosis. You really have to be your own advocate and you can do that by educating yourself on every aspect of your condition. It will help you ask the doctor better questions and hopefully help them help you.

I’m sorry you are in so much pain and it’s getting worse. My lower back pain doesn’t sound as bad as yours and I wished I had a better answer for you. I have lower back pain/stiffness caused by degenerative disc disease and I also am in my second occurrence of polymyalgia rheumatica which I’m tapering off of prednisone for the pain in my shoulders, arms and hands. There are days that it’s really bad and then just days that it’s just there. I find that I try not to focus on the pain but get my mind thinking about something else and taking one day at a time helps get me by the tough times.

John

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