Arachnoiditis: Looking to talk with others

Hi— don’t worry, all AA stories seem to be long I was Dx‘d in 1978. Truth is, AA is caused by trauma from surgery to the spinal cord, blood in the surgery wound, detritus from imaging fluid and aging. It can change, mutate and get worse. I find that the pump helps a lot of back pain from nerve damage, but not so much with AA. Thus the use of SCS as adjunct modality of treatment. I have Dilaudid in my pump _ has worked well for 18 years. States that limit the range of analgesics and want you to subsist on methadone and cognitive approach’s to pain control mean well, but don’t understand AA— they need to bring the best meds because AA is the worst.
Please keep in contact— hard to hurt my feelings or surprise me after 50 years of AA. Don’t give up! You have a good grasp on the disease— educate your local Pain Mgt physician— I’ve done it. Done give up, get active and become your own best advocate.

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.

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?

forgot to say Medical Marijuana helps me a lot. I eat gummies. However, it's very expensive & of course, not covered by Medicare. My pain doc, told me to use it! Guess, now that's it's legal, both Medical & recreational, they can't do anything. Hope your state has it!

Yes. It's legal in VA . But needing to get a medical card just in case bc you can walk into any stores here to purchase it but I don't trust I'm not going to end up getting fentyal and die . I'd rather have what a Dr would prescribe to be on safe side. I have tried gummies and yes they help . I live in VA but went to Dr which TN and VA are just on opposite sides of streets ( no joke. Walk on one side it's VA cross the street it's TN) I went to pain management on TN side and test w slight amount of thc on my screen , Dr was so interested in that , he didn't look at MRI ( in April 24 ) to see radiologist had flagged it and didn't tell me of arachnoiditis. I went to my primary and told her I was seeking home help and needed a diagnosis so she seen the arachnoiditis and this was last month. Nov, and asked why the Dr who ordered mri wasn't upfront about this serious condition needless to say she was furious I had suffered so long wo knowing , I haven't used gummies marj etc since the Dr said it's legal in VA but not TN so I quit to get help , I went back knowing in 7 months there should have no trace of thc in my system . Well guess what? Got to return again ..... it's a drain your insurance racket .
She also said the meds I'm on is too much and if ( big if ) she changed it then she would put me on slow release ( acting) meds .... been there. It doesn't work. I have used morphine , fenyal patches, oxycoton , etc only w so much vomiting I wasn't able to care for my preteen son
I had to go back to lower meds just to be able to get him to school back from school to after school activities etc wo killing someone so I suffers til I returned home at night to get my meds and start all over next day .

Today I used my first cath to finish draining my bladder. I was so proud of myself , I know it may sound small but I hadn't been taught but I learned having taken nursing classes in my past , I was happy I was able to do this .

As far as bowel issues I have had gastro Dr tell me I have hardly any spincter muscles left but I still try my best to try to go , only it comes out as gas , after usually 3- 4 days I will take a laxative 2 if it goes over 5 days but yes it's humiliating not to make it to bathroom and wear a mess. I cry but I know atleast it's out and I can relax for another few days. I try not to eat certain things bc it does build gas and I try to eat healthy but when you can't stand for long it's hard to cook 3 course meals.

I miss my gummies but if when I return to pain management if they refuse to help I'm done w them and will stay w my primary care who seems to know about this disease and is willing to help me.

I actually was so proud of using that cath I walked from my bathroom to my living room wo my walker wo thinking. I started to get up and asked my cleaner where my walker was , needless to say I was shocked and happy I had done this.

I pray for you all. Try to be happy even w the smallest things you gave to be grateful for. The Lird blesses me each day to still get up out of bed , I have a bed , a roof over my head , and running water , I'm just praying I'm approved of this young lady helping me w cleaning and daily things , if not I suppose I will have to pay her out of pocket for few days a week.

I hope this long winded message helps someone but I am also fearing total loss of my bowels.
Thank you for understanding
Sherry.

large support groups for arachnoiditis, on Facebook. I've been locked out of my account for suspicious activity (sure it was me) But have not been able to upload a new ID, with numerous attempts. But go to Facebook. Sure u will get more support...hundreds with this condition

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.