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Arachnoiditis: Looking to talk with others
Spine Health | Last Active: 9 hours ago | Replies (441)Comment receiving replies
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.
Replies to "Hi Rachel. I was diagnosed with arachnoidiitis 28 years ago and was single at the time...."
How lovely & thoughtful are you! Your very sincere and such a genuine kind hearted, caring person! Wow! If only there were more people like you, this world would be a much better place, bless you
Do U have a twin?? I haven't been able to even find a date. When a guy see's my walker, it's an automatic no. U must be that one in a million who really cares & be genuine & deeply understanding. Tried dating for 2 years with no results. But then, i can hardly get out of bed, most days,,, The lack of just some one to talk to, or maybe get a lunch, dinner. Even though live in a retirement community, i feel so alone & lonely. My participation in activities, has gone from a lot, to nothing. I keep signing up for stuff, but can't get up, due to severe pain, numbness etc.
U sound like a wonderful, caring, special guy. I have had Arachnoiditis for 25 years? it didn't get really bad until my spine surgeon put all my hardware in. I'm fused from C3 thru my sacrum. I never know what i can do, until i wake up every morning. Can't plan on anything, i'm single & have no life. I was in a wheelchair for 6 years & my biggest fear is ending up, back in a chair. I was paralyzed from neck down with MRSA. spent 15 months in the hospital, rehab & then cervical fusion. Hate to be bearer of bad news, but really no treatment except steroids. I always hear, that i look so nice...couldn't have anything wrong with me. I work out with 5 lb weights & do squats, to strengthen my glutes & quads. Have worked out & been active my whole life. During flare, i couldn't do anything. Hospital situation in Maricopa county, sucks, big time I was an RN for 40 years, & got a master's in Health care admin. Had to quit work after my paralysis. I live in cheapest retirement community in all Phoenix area. however, they are raising rent 8 % a year. I am on section 8, but i will be running out of money in 3 or 4 more years. I get most of my meals here & i know i couldn't function in a regular setting. There is next to no housing for disabled here. I called the housing authority & asked what do i do, when i can no longer pay the rent? Basically, was told, that i'm not alone. & nowhere to go. When the pain gets unmanageable, i end up in ER, begging for Dilaudid. It often takes 6 months, to get an appointment with a specialist & snowbirds make it that much worse. I haven't found any practioner willing to read Dr Tennant's information. They just dismiss it all. This is a terrible condition. bad enough to suffer, but the ignorance, is inexcusable. I was asked to evaluate my last hospitalization.... told them it sucked!! My spinal nerves are a mess. I already have a permanent suprapubic catheter, from my paralysis, now i am having bowel incontinence ( some of the time). I have severe brain fog & severe insomnia. The DEA, prevents pain docs from being able to prescribe decent meds, for pain control. Has anyone gotten an intrathecal pain pump for Arachnoiditis? If so, did it help? My spinal cord is tethered at C6 & sacrum This makes me have pain, down both arms, as well as lower body. Don't know if they can help, since i need pain control from my cervical region, down... it's very hard to be positive, I have told a couple of ER docs that they suck! Wanted to say a lot more...so tired of begging for enough Dilaudid.... Now my current neurologist no longer prescribing controlled substances. I need diazepam &some decent help for sleeping. I am only able to sleep 3 to 4 hours a night & my cognitive skills have gone down by 50 %?? Anyone else having sleep issues. I am feeling sorry for myself, but at this point, have no energy to fight the system here in Phoenix area. No university or research hospitals around here Sorry for the bitching. I held high level jobs in the past, but now, i am reduced to begging for help If u want to email, laurenseavertson@q.com
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Loved your note to Rachel, Gerisues... and your husband´s words. I too have an amazing husband, who married me right after my original laminectomy and fusion in 1973, so he has gone through it all. I had three kids at the time, all of whom he adopted and carry his name, and love him dearly. So we were both very fortunate to meet up with an Angel along the way. Still, it doesn´t always stop my bad moods caused by pain and frustration....yet reading your note made me stop-and-think about all he has done and continues to do to help me. We have a five hour trip up to Mayo coming up soon....hoping against hope for more help. Have been diagnosed locally with Normal Pressure Hydrocephalus (mostly an older person´s diagnosis) but to confirm they require a Spinal Tap. Yet, this is a No-No for us Arachniacs....so am scared to death. Have insisted on a "second opinion" at Mayo to see if I can be a candidate for brain shunt treatment....no guarantees I will be. So as time has gone by, seems complications come up. My gut feel is that NPH is a sort of "progression" of ARC, but this is just my gut feel after reading and reading and reading about both conditions. Hydrocephalus (or "water" on the brain) is actually excessive Cerebral Spinal Fluid on the brain. But why? Because there is an obstruction in the spinal cord so that Cerebral Spinal Fluid is not "flowing" to the brain as it should. However, this is just my layman´s assessment of a form of ARC progression.
I close now, saying, "I´m scared to death, but once on this horse, no way to get off." Am old enough now (76) that realistically I don´t have too many choices. If you are young, please keep reading and learning about self-help modalities. Not all doctors can help, you´re mostly on your own--although am sure hoping Mayo can help. I´ve had some very good years and am very grateful.... May be getting closer to the time to sign-off. But am grateful.
Keep plugging ahead! And do it one-day-at-a-time, with hope and self-awareness.