@rachelarachgirl Im so sorry for what your going through because of that Dr. You have a good case to sue if you need money for your life now.

Hello @rachelarachgirl, welcome to Connect. You have found a great place to meet others going through similar situations as you are currently facing. While we wait for the other members already in this discussion, I would like to also invite @thelmalouise76, @ledgerwp, @jlfisher56, @lconroy, @annmaria, and @galady to this discussion to share their experiences with you on living with arachnoiditis.

@rachelarachgirl, if you are comfortable sharing more, you mentioned that your physician at Mayo Clinic helped with your diagnosis and recognized your pain, was there any recommendation on controlling your pain or what you can do moving forward?

Hi Rachel. I was diagnosed with arachnoidiitis 28 years ago and was single at the time. I also did not know anyone who had it at the time of my diagnosis. 12 years ago I met and married a very special man.He was widowed and spent several years taking care of his late wife. I told him up front about my condition and that I really had no idea if I wanted to be in a relationship with what I dealt with from the arach every day. He was dead set on us being together, so within a few months we were married. I asked him his point of view and he said "I get pretty frustrated with the lack of interest in the condition in the medical field and that my wife suffers so much. I have never had to do hands on care for her, but I am always trying to find ways for her to get the help she needs. I feel like "we" have arachnoiditis because it affects us both when it comes to our relationship. I watch her suffer so much and I would do anything to take this pain and suffering from her if I could. She is such a cheerful and upbuilding person, she makes me feel loved and cared about despite her pain and I could not imagine being without her. If you truly care for someone it is not about what their health is, it is about making the time you have together worthwhile and adapting to each other's needs. I know she would feel the same for me if I was the one who had the health issue. She does not know one minute to the next what she is going to be able to do so we plan activities with that in mind. She has to use a scooter when we go places that require alot of walking so we research ahead of time if they are handicapped friendly. I learned to do therapeutic massage and bought a massage table so that I could ease some of her muscle cramping using these techniques. Bottom line, if you both truly love and care about someone, you are going to adapt around their needs just as they are going to do for you. You both have to be willing to change how you do things so as to help each other. Is it difficult watching someone you love suffer, YES. Do I worry about her, YES. You have to be strong enough to handle that. You cannot just selfishly leave them behind while you go off and do your own thing. I saw that happen in my own family growing up and I was determined not to make that same mistake. It needs to be a family affair with activities that include my wife, done in a way that she can do it. If others are not willing to work around that then we have no use for them. She has made so many changes to accommodate me as well. I don't know if this helps or not but these are my thoughts." Well I hope his thoughts are useful to you. If you have any questions, I will ask him and he can be more specific. I am sorry for what you are going through, it is not an easy condition to live with.

@racelarachgirl - which doctor did you see at Mayo? I was diagnosed in July 2018 after my husband demanded that the nurse practitioner (for the back surgeon) give us more/better/different answers to what I was experiencing. She looked back at an MRI from October 2017 and said "when did you have the MRI with contrast?" I explained that I had never had an MRI with contrast - that I wasn't told to or scheduled for one. She told me that the radiologist saw indications of arachnoiditis on the MRI, but wanted to confirm. A week later, it was confirmed and the back surgeon told me that he could do surgery on my spondylolothesis, but not the arachnoiditis. I had looked it up after the first mention, so I declined surgery since I've read that it makes the AA progress faster. No doctors here know ANYTHING about AA - all they want to do is inject me or cut on me. I'm desperate to see a doctor who understands what it is and how much it hurts (and affects my LIFE!). Thank you in advance!

Hi I was told in July of 2017 I have Arachnoiditis in 2015 I had back fusion it failed and now have 8 levels of fusion. I could not find out why I was having so much pain even after the bones fused, one doctor fused my Sacroiliac joint on my left side now I walk with a cane and at 50 I feel like 80 I am in stage 3 hith Adhesive and scarring it has taken away all the things in life I loved that and the pain has been the hardest part. I am married with 3 boys and it is effecting my mind I feel it is winning and I don't have much time so trying to enjoy what I can wish you the best Ralph.

I am fairly new to this condition but I'm getting the runaround and all they want to do is meet Lee give me a stimulator which is not going to happen. I appreciate what you're going through when it's a shame that there's not something more happening for us as I sent the handbook of tenant to the Mayo to see if get some reaction but none yet. I'm not giving up and so should you. Look into pemf treatment as I think this can help us but I haven't found anybody who has used it for yet but I think this could be part of the solution.

Rachel. My story is similar. Started 30 years ago and FINALLY diagnosed by Dec 2012. By an eminence in ARACHNOIDITIS. Am currently at Mayo JAX for amazing program of Pain Rehabilitation. This program is also available in other Mayo locations. But it is very intense and am in my final week so have no more energy right now. We get a lot of homework in the way of Planning for how we will carry out the principles and tools learned once we get home.

Take care all. It’s a long learning process. Keep the faith.
Joan

Hi rachelarachgirl. I'm terribly sorry for what you are going through. I was diagnosed in 2012. Not something I would want anyone to experience. I too, have way too many shots in my back, trying to relieve my pain. Of course, the shots ever proved to help me. It's very difficult to explain just what the pain is like, so here we go with the pills. We, that have A A, have no recourse. I could have a pump installed to shock the nerve into submission. Not going to happen in my case. If you should feel the need to talk, please do t hesitate to contact me!

Hi Rachel. So sorry for your AA and all your associated "unbelievable" pain that, I, too, have! No one understands this pain except another AA sufferer! I have been suffering with it for almost 3 years, and it is now escalating to a new, frightening level. Yes, I believe it is comparable to stage 4 cancer. My husband's former wife died from ovarian cancer, and he agrees that my pain was/is very similar. He is also a great help to me and massages my legs/feet daily, sometimes 3-4 x daily to help me with the pain, since no meds work. My husband is also a researcher and found out that in Portugal, Russia, & China, AA adhesions/ cysts can be successfully removed with special micro-surgical tools, with great results in followups! No one seems to be able to do it here in the US which is very disappointing. We are considering going to one of these countries for help. It is very difficult living with such a monster inside of our bodies with no hope of relief, so I am excited about the possibility of a recovery and relief! You may or may not respond to this reply being that is is a year later! But do so if you can. Thanks, Anna .

My mom was just diagnosed with this after having back surgery, once in September and again in December. She’s still in rehab trying to do therapy but she can’t do it most days because the pain in her butt and leg are too unbearable. What, if any, things have you found to ease off the pain? I can empathize with everyone on here and with my mom because I a severe form of Neuropathy and suffer with most of the same symptoms and it’s a living hell to endure this much pain. I’m doing research to try to help her get back as much quality of life for her.... Thanks for any suggestions or help!