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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: Aug 16 4:15pm | Replies (388)

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@joanmahon

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.

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Replies to "Loved your note to Rachel, Gerisues... and your husband´s words. I too have an amazing husband,..."

@joanmahon, Good afternoon. I have now read your post 3 times. Each time I get closer to what I call a very touching statement of the situation as it is right now. According to my mindfulness guru, Patsy, that is what we should do...be present in" the right now" and not fearful about "the what if?????"

I am 77 and had my first back surgery, a laminectomy, when I was 27, so about the same time as yours. My presenting issue was that my feet were cold and my legs were painful. Little did I know that the culprit was my spine. That was the era when they kept you in the hospital for 10 days and you took baby steps every day in the PT department. So......my issues were not resolved and I had another back surgery 10 years later. Come to find out my surgeon was not as capable as I might have wanted. He was disbarred or "dislicensed."

That is when I knew that we must be our own patient advocate, responsible for doing research, evaluating options, giving genuine feedback, following recommendations and protocols, and essentially becoming partners with our providers in our own care.

You are a great resource for yourself....and my only suggestion is to stay in the present......so the "being scared to death" cannot help only hinder. May you be free of suffering today.....Chris

Mayo can not help as I finally gave up trying to get help. All they want to do is put in a stimulator and no research into such a terrible disease cause by their surgeon's.