Arachnoiditis: Trying to find a specialist

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.

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.

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.

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

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

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

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.

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.

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.

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