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.

@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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@bfsecurityguy

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.

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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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@bfsecurityguy

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.

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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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@bfsecurityguy

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.

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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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@bfsecurityguy

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.

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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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@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, @lconroy

I’m sorry that so many people live with intense chronic pain, and that you’re one of them. I have lower back pain, but not constantly, from falling 12′ and landing in a sitting position, with my back against a concrete wall. The chronic pain that I struggle with is in my feet – peripheral neuropathy. I recently had a spinal cord stimulator implant, and many days the pain is 80% better than before. I think the stimulator is largely used for back pain. I wonder if it might be an option for you. I’ve cut the dosage of morphine sulfate in half, and take only a third of what I was taking of Cymbalta. I hope that in your research you’ll find some answers.

Jim

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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 Jim,
I’m so sorry you walk(no pun) the path of chronic pain also. I’m just having a real hard time, physically and emotionally with it all. I’ve been fighting it since I was 34(2003), and they kept telling me I was going to get better.. each painful surgery. This last one I knew I shouldn’t have gotten my hopes up, it sealed the deal… permanent damage and I’m in more pain than I think my brain can accept most days. Thanks for reading this. I really appreciate you hearing me out, I’m sure I’ll get better, mentally, it’s just kinda new, this big sucker punch. I’m also glad to hear the SCS helps you. How long have you had it? my pain is mainly very low(sacral), pelvic area, back of my thighs and down to my feet.. Does it help with that? They are offering a pain pump now. Do you think one over the other is more beneficial? Pros vs cons.
Again, I’m sorry you’re in this position. Thank you for sharing your knowledge. Take care.

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@colleenyoung

Hi @Tbato622
Let me start by welcoming you to Connect. I agree that when dealing with a chronic condition, it is helpful to find a support group – people going through the same thing. Let’s hope that @bfsecurityguy and @c_edward will respond to this message when they get the email notification.

What kind of pain do you have and how are you managing it?

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Hi Colleen,
Thank you so much for writing and welcoming me. It’s most appreciated. I’ve been in pain for 10+ years. Long story but I hurt my back and my one surgery caused way worse damage to it. Along the way I was told, “this time you’ll be fine. You’ll wish you had this surgery before etc.”. Anyway, in April I couldn’t take things much more, MRI didn’t look good. Two days before I was to go in I was diagnosed w/ cancer. My surgeon is the top trauma and reconstructive spine surgeon around. I had to wait 7 months to get a surgical apt. He called and said, “look we can get you through cancer and I’ll do your surgery anytime, day/night/wknd, you won’t have to wait”. I appreciated his offer but I honestly didn’t care, I was putting cancer off, my back was my priority. If the pain didn’t stop I thought let cancer take me. I can’t keep living like this. Wow little did I know what I was in for. He went in and I was leaking CSF/hemorrhaged and my dura was burned away. Due to it all I had a brain aneurysm. I leave the rest out but after surgery I started having pain that was beyond what I could take. I had diagnostics which showed a large pocked of fluid(can be spinal fluid again or infection or seroma) they’re going in Wed. It also showed A.arachnoiditis. My nerves are damaged for life. So much for my better life. I’m sorry this is so long. I appreciate you, if you did, reading this. I want to just quit my cancer treatments and do what. They offered me a pain pump and said, “it happens”. My surgeon that I valued and adored… he hasn’t talked to me once. His PA’s or partners will only talk to me now. They tell me it’s just what happens when someone’s be damaged so bad like me. Anyway, how are you and how do I cope when I was so hopeful and brave for years. I never complained I still remained me.. now I don’t know who I am? I feel like I’m floating in a dream. Thanks again. I know people have it worse than me but I just don’t know what to do.

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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 John,
I’m so sorry you’re in pain too. Whether yours is or isn’t as bad as mine doesn’t matter, to you it’s affecting your life and causing pain, so that’s the issue. I’m so sorry. People tend to forget that. I was in unbearable pain the other day and was on the way to my cancer treatment, I was literally think I could jump out the car door on the X-way and it would be all over. Don’t worry, is never cause others that kind of trauma, it’s just sometimes you can’t handle that kind of pain, and sitting in the car for an hour was more than I could bear. As we pulled in the hospital a worker passed by with a limp, my relative said to me, “see look how bad that poor person has it, they’re limping and they work. You just never know how much worse you could get”. I held in my tears thinking, maybe they are not in any pain at all? We just don’t know anyone’s story. I’m very stoic, had to be growing up(can tell by that comment). I just am getting to my ropes end.
I do know about polymyalgia, my friends spouse has it. I’m sorry. So many people suffer from so many diseases people know very little about. They were very blessed to have at least found a surrogate to carry their child.

My worst thing is no one cares enough to think all back issues are not the same. I’ve been damaged severely. My CSF was leaking out. My dura in that area was actually burned away, they had to create a new one w/ fat/fascia/stem cells and sew it on. The spinal headaches for 2 weeks were so horrid I couldn’t move. Now to know there’s blockage in my spine that won’t allow the CSF to flow freely is mine blowing. Arachnoiditis..on top of it all? I’ve haven’t accepted this yet. All they can to is offer drugs(yuk) or a pain pump. I suppose I’m so tired of meds the pain pump will be a relief.
Thanks for listening. I’m still in shock over it all. Bless you and please keep in touch lconroy826. I pray for us all. I hope someone listens.

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