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.

@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY
@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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

Hi Teresa,
I’m so incredibly sorry you have pain that stems from a rare disease/disorder. It seems people can relate to a cold better than empathizing with chronic rare disorders. I have some that have stuck around but most either bail, or make comments like, “oh God will heal you if you believe enough”, or “ive just never heard of that, you seem to have these weird problems, maybe you’re just looking for diseases”. I’m not sure somedays what’s more painful?
I’ve been stuck in this horrid rollercoaster now for 12-13 years. Each specialist promised a new cure and with that came a new painful surgery. This last one got me a brain aneurysm, 2 weeks in the ICU and a permanent severe condition called Arachnoiditis. The pain from my waist down is just hard to breath. My spinal fluid no longer can flow freely. My daughter bailed, it was too much for her and me, I just am broken, physically and spiritually. I was hoping MC had something new, cutting edge to help. I guess not:(
I do wish you well, and the best. Contact me anytime. Hugs

REPLY
@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.

Jump to this post

Hi @lconroy

I don’t have any experience with a pain pump, but the scs has been a great help to me. I’m pretty sure it’s only intended to treat nerve pain, which can be in just about any part of the body.

I’ve been treated for major depression and other mental health issues for almost 15 years now, and I’ve learned that pain and depression tend to make each other worse. More pain, deeper depression. More pain, more anxiety. More pain, more suicidal thoughts. Mix all those things together, and they seem to rise together, like a ball of bread dough.

That’s just my own experience.

Jim

REPLY
@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.

Jump to this post

Hello @lconroy

Yes, I’ve had friends who pontificate about the fact that sometimes people are looking for attention when they talk about their health problems. It is for that reason that I started a support group in my church called, Living & Thriving. We have lots of members whose kids, spouses, etc. are tired of hearing them talk about their health problems – but our group is very supportive and we are there for each other. I hope that you are able to find some support for yourself here at Mayo Connect as well as one-on-one support in your community.

Have you called your local hospital to see if they have support groups for people who deal with chronic pain?

Teresa

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

Makes sense. I actually never talk to my friends about my health… which is a problem. They never understand why I cancel all the time. I’m sure they know I have issues and just went through cancer, but to tell them everything… heck I’d glaze over. Thanks for the idea of going local. I appreciate it! Be well, as you can and keep fighting the good fight.

REPLY
@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.

Jump to this post

Hi Jim, well I guess it doesn’t matter. Pain pumps are made in Puerto Rico, and we all know what just happened to that poor island. So there’s a temp ban on all implantations. I really am trying to hold on tight now. My pain levels are insane. Thanks Jim.

REPLY
@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.

Jump to this post

@lconroy
Here is an article that you might find interesting, we shared it at our Living & Thriving Support Group.

REPLY

Hello all. I am sorry that AA pain makes us part of a group. I can only offer some information about possible AA and/or pain specialists about whom you may wish to do some research. My husband has Adhesive Arachnoiditis from an epidural steroid injection between his C4 and C5 vertebrae that was poorly done. Woke up that next morning sobbing and curled in a fetal position from which he could not move. That was 2003 (I got the years incorrect in another post here) and he was eventually diagnosed with AA. Our pain clinic is terrible and his current med regimen is insufficient for this type of Intractable Pain. Not Chronic Pain, Intractable Pain. A major difference.

Anyway…there is a pain specialist just outside of Washington DC, who operates an integrative pain clinic. His name is Dr. Gary Kaplan, and he has also written a book, entitled “Total Recovery.” He uses some of the same protocol that Dr. Forrest Tennent does. No doubt, if you have searched for AA, you have come across Dr. Tennent’s site. He has some good free downloads on surviving intractable pain and protocol for diagnosis and testing and treatment with which you can educate you pain doc if he or she is interested. Dr. Tennent is in California and still takes new patients.

We are awaiting a time when my husband finishes his last year on a particular job and then we are going to try something different. Kaplan Center or Dr. Tennent or both. FaceBook has a couple of great groups. I follow Arachnoiditis Everyday on there. Good information and great support and caring members. Most research I have done come to a dead-end, mostly because the pain management docs are looking to do surgery. My husband has had no surgery, which makes him even more rare of an AA victim. Probably also makes him in better condition than many and for that we are grateful. His current doc will not prescribe stronger dosage of Exalgo ER, nor a breakthrough med and neither will he recommend a stim implant while my husband still has his job.

In Maryland we now have medical marijuana pharmacies opening up, but the pain clinics in our locale will drop a patient if they secure a script for medical pot. I had thought that they would work with the pharmacy to help their CP and IP pain patients lessen their use of opioids and/or use it for breakthrough pain, but no. What is the point of the state licensing medical marijuana pharmacies if they cannot be used.

Best of luck to you all.

-Jeanne

REPLY
@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.

Jump to this post

please look up information from Dr Forest Tennant. Many of your issues are probably caused by the arachnoiditis, His information has helped me greatly to find relief on my own( Kratom, DXM, oxytocin etc) because the doctors all blow me off and even pain management will not prescribe anything except lyrica and for a year after diagnosis still tried to give me more epidurals which is the worst thing you can do with arachnoiditis

REPLY

I’m sorry you too live with this terrible disease. I have chased everything possible and spent most of my savings looking for a solution. After many doctors and crooks, they’ve come close to killing me which made me realize I need to be careful who I trusted. Do not go anywhere near Mayo Clinic and will leave it at that.. I finally found a doctor in Manchester, TN (Dr Newton) who implanted a pain stimulator. This is the only thing that will help stop most of the pain because it’s not dumping drugs into your system that won’t help damaged nerves. With a pain stimulator, you control vibrating pulses that stop the pain from going to your brain. You will still have to take lower doses of pain killers but nothing like you were on before. There is also a herbal alpha lipoid acid at 600 mg over the counter taken 3 times a day at 2 each time that is a miracle worker helping with pain. I wish you the best in your pursuit for a happier life. Please ask me any questions you would like.

Pam

REPLY

I have it also. One doctor wanted to implant a pain pump or a stimulator. I declined. I have had enough scarring from other surgeries and was scared wires would become like that in my spine no matter what he stated. He siad it would help my back fusion (chronic lumbar pain) and the arachnoiditis. Perhaps it would help. I have had scarring at incision lines on total knee and hip replacements so it has made me reluctant already having the scar tissue in the spinal canal (arachnoiditis).

REPLY
Please login or register to post a reply.