Arachnoiditis: Looking to talk with others

I found out 3 weeks ago after 8+ years of pain , falling , not being taken seriously, different injections into places I had no muscle tissue , I had T2-T10 surgery for tumor growing inside my spine in 1986. I feel like I'm going thru those same symptoms but extremely worse , I've had so many Dr's I can't count , if you know of any specialist in this field please share with me because I do not know what type, I do know I went years with walking again at 17 and having a son at 27 now I'm using a walker and barely able to walk with no bladder control I've have extreme pain in my legs , I can't sit long , I can't lay down long , I can't walk far , I live alone when my bf of 12 years couldn't deal with my issues and his self being diabetic , so I've been alone a while relying on my family whom are realizing how serious my condition is. I had feeling of water running down my legs , tingling stinging , thinking I had gout in my toe , I thought how can no Dr find what is happening to me and why. I no longer drive I couldn't feel the clutch , I got an automatic vehicle unless I was looking at my foot on brake I was scared I'd hit the back of a car bc I had weakness pushing pedal , if you know of Dr's in this field of arachnoiditis can you please share. I have traveled several places to different Dr's and will go anywhere I know there is a specialist in this diseases. I want and need help , I even am trying for in home care . If there is anything you wish to ask please do. 276-298-8483

Hi @gldburg92jeep ,
I am so sorry that you are experiencing so much pain and daily movement limitations and challenges. I sincerely wish that there was a doctor or medical facility that I could recommend to you - but like you, I have searched all over ( and still do) to various neurosurgeons, neurologists, pain management doctors, orthopedic surgeons, Orthopedic physicians, well known medical facilities throughout the United States, alternative medical treatment, various well known rehab facilities, etc. My experience, for the most part is that everyone tries to help, but since Arachnoiditis / Adhesive Arachnoiditis cases are not numerous throughout the U.S. nor throughout the World- there is little research done my the medical field, and/or the pharmaceutical field in the treatment of Arachnoiditis/Adhesive Arachnoiditis. The only suggestions that I can make, is what I also do for myself. Namely, keep reaching out to various medical facilities to see "IF' there is any new research being explored, and any helpful suggestions they may have. They no doubt will need to see you, to evaluate you particular situation and have access to your medical records to see diagnosed issues. and tests that were done to support those diagnosed, issues. Also your medical records re: operations you've received for these issues - if any... What I feel is within my control
( since so much is not in my control) is how I try to approach and embrace each day. I try to keep a frame of mind and spirit of gratitude for all of the blessings in my life. People, nature, a safe home to live on, food to nourish me, distractions that I enjoy such as talking with family, friends, neighbors, and even a brief /passing interaction with a relative stranger. I am thankful for music that I enjoy listening to, TV programs I like, reading, some game shows on TV that keep my mind engaged, my spiritual faith, and so much in nature that I can see from my living room window. There is so much more in any given day that I am also thankful for. I just have to have eyes to see, listening ears and a listening and grateful heart. Sometimes doing this is a challenge, but I give my acknowledgment to the difficulties, in so many areas of my life - but I try to move past them in my spirit and my mind and not let those very hard areas of my life be all consuming. Not always easy to do... but I try and often succeed thankfully. I hope that you can also find the place in your mind, body and spirit that will allow you to have the same ability to find so much to be grateful for. You are in my prayers.
With peace-filled wishes,
mata

The allopathic docs: neurosurgeons, neurologists, orthopods, radiologists, pain clinic docs and the rest say there is nothing they can do because they can’t burn cut or poison the problem away. There is no cure but that doesn’t mean it can’t be put into at least partial remission.

But you will have to go to alternative medicine and you will have to work at it long and hard.

For the best modern options for pharmaceuticals, supplements and some kinds of alternative treatments, Dr. Forrest Tennant’s book “Living Well with Arachnoiditis” is a good place to start. You can get on Amazon, including a free option on Kindle Unlimited.

I got my own initial catastrophic case from 1991 into remission using a combination of, ChiGong and TaiChi (Bruce Kumar Frantzis’ “Southern Wu Style is particularly good but other short stance styles may work too), acupuncture, cranio-sacral work, trigger point massage and injections, dealing with my celiac disease (strictly no gluten), Alexander technique, and a program of walking. It took about 15 years and lots of trial and error to get back to a semi normal life and is still a work in progress. When I started I fully expected that I would not live to see the current millennium.

Definitely worth trying and there is so much more known and available now.

Best of luck to you.

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.

Hi Folks- Archie here— I’m glad to see the detailed communications and responses. I have seen about 10 of us now who have Arachnoiditis—what a treasure-trove of experience and information!! I’ve had AA since the 1970‘s (before it was fashionable), and until this Mayo blog, I have never talked with another person with the condition. What a gift to find you ALL! Please let’s keep the conversation going. We’re in this together—loneliness doesn’t have to be an option. Thanks to all for contributing! Archie

Thank you so very much. I am in the same situation. Neurologist , nureosurgeons , pain management, psychiatrist phycologist, I'm not asking for a cure but a better quality of life. I live in VA and the cold is extreme right now. I woke up warm from my bed only to stand up in severe pain , I'm not good with walker but I have refused the wheelchair so far. I have tried to make my home safe for me to walk thru and also take care of my little dog. She's alot of comfort when she's not barking. Lol. I enjoy looking outside to see deer and other wildlife. Where are you located ?
If you don't mind me asking.

I believe the last spinal tap after a car accident which was a hit from behind type went really bad even though I was having symptoms before then. But Dr who was doing the spinal tap said the contrast is pooling in one spot and will not go any further I'm afraid if I inject anymore it will blow out . I came home needless to say that the contrast did not leave my body thru my kidneys liver etc it accessed and came out thru my skin.

I've just continued to get worse.
I pray God gives me the patience to recieve some relief and answers.

I want to enjoy my life , have a little better quality of life , be able to socialize w my family who are mainly all I have. When this started I haven't drank in over 11 years and I'm no socialite .... I use to love to get out and drive in the woods and enjoy my life.

If you don't mind , we can talk , sometimes it hard for me to share , but my dog barks also , I'd like to know or hear of your surgeries etc. I had cancer my senior year of high school and had radiation treatments after from my thoracic spine , then I had to learn to walk again.
I guess I've typed enough for now. Thank you for reaching out. I'm praying for you also.

Have found that this condition has constant new, symptoms, some quite bizarre. Afraid to tell any doctor, because fear they will think i'm crazy. But i have taken so much prednisone, over the years, & i know this drug does bad things to skin & all connective tissue, below. But it's very disconcerting, & most doctor's would find highly, unusual?

Thank you so very much. I am in the same situation. Neurologist , nureosurgeons , pain management, psychiatrist phycologist, I'm not asking for a cure but a better quality of life. I live in VA and the cold is extreme right now. I woke up warm from my bed only to stand up in severe pain , I'm not good with walker but I have refused the wheelchair so far. I have tried to make my home safe for me to walk thru and also take care of my little dog. She's alot of comfort when she's not barking. Lol. I enjoy looking outside to see deer and other wildlife. Where are you located ?
If you don't mind me asking.

I believe the last spinal tap after a car accident which was a hit from behind type went really bad even though I was having symptoms before then. But Dr who was doing the spinal tap said the contrast is pooling in one spot and will not go any further I'm afraid if I inject anymore it will blow out . I came home needless to say that the contrast did not leave my body thru my kidneys liver etc it accessed and came out thru my skin.

I've just continued to get worse.
I pray God gives me the patience to recieve some relief and answers.

I want to enjoy my life , have a little better quality of life , be able to socialize w my family who are mainly all I have. When this started I haven't drank in over 11 years and I'm no socialite .... I use to love to get out and drive in the woods and enjoy my life.

If you don't mind , we can talk , sometimes it hard for me to share , but my dog barks also , I'd like to know or hear of your surgeries etc. I had cancer my senior year of high school and had radiation treatments after from my thoracic spine , then I had to learn to walk again.
I guess I've typed enough for now. Thank you for reaching out. I'm praying for you also.