← Return to Any Adhesive Arachnoiditis members here?

Discussion

Any Adhesive Arachnoiditis members here?

Spine Health | Last Active: Jan 18 12:45pm | Replies (114)

Comment receiving replies
@lisalucier

Hi, @joanmahon - I'm hearing your feelings of desperation and especially cognitive losses. I'd feel that way, too.

What I'd suggest is that you contact the Mayo appointment experts, online or by phone, at this link http://mayocl.in/1mtmR63, and they can tell you how to best proceed.

A couple of threads you might want to check out are these on normal pressure hydrocephalus (NPH). You might share with the patients there some of what your doctor mentioned about NPH and see if they have thoughts for you.

- https://connect.mayoclinic.org/discussion/brain-injury-white-matter-encephalopathy-and-encephalitis
- https://connect.mayoclinic.org/discussion/nph-and-dealing-with-work/

I'd also like you to meet, if you've not already, @jenniferhunter and also @hopeful33250, who may have some input for you.

In the meantime, how are you managing your day-to-day life with the diminished cognitive functions you mentioned? In what ways are you seeing these show up?

Jump to this post


Replies to "Hi, @joanmahon - I'm hearing your feelings of desperation and especially cognitive losses. I'd feel that..."

Dear Lisa, I´m not sure if I let you know that I followed your advice and checked with Mayo Neurology in Jacksonville again and was given an Appointment for August 14. Am awaiting the packet of information. So hopefully am on my way--anyway. I worry because of the two conditions (Adhesive Arachnoiditis diagnosed in 2012) and Normal Pressure Hydrocephalus, tentatively diagnosed in May. Only a Lumbar Puncture can confirm NPH, but this is "counter-indicated" with AA. So can only hope and pray Mayo will steer me in the right path. I will do anything they suggest. I live in Sarasota, a 4 hour drive from Mayo Jacksonville, and have two little dogs to leave behind, which breaks our hearts.

Jennifer Hunter, you were amazing, and I am so grateful to your encouragement. I think I owe you a longer thank you, though. My fears stem not so much from surgery but from the "counterindication" of both conditions, and I don´t worry about a shunt if that´s all that can be done. I just worry a little about leaving my husband, who is already dealing with my idiosyncratic behaviors and am sure wishes this entire thing was resolved.

John, as for diminished cognitive functions, it is very, very rough. I barely have two or three hours max in which I am functioning--can´t follow recipes, can´t do much cooking, can´t plan for the day from the moment I drag myself out of bed. The worst is not being able to make lists, or even write, although I must say I can type better than write by hand. My train of thought disappears on me when on the phone, word-finding is a hoot, and everyone has to just tap their fingers waiting for me to come up with the right descriptive word. I´ve been a relatively high-functioning geriatric social worker for many years, with a huge bilingual caseload. I had to retire in 2013 because I feared messing my clients´ lives up. And I miss this part of my life terribly. So, John, I don´t do well with the loss of cognitive functions. I don´t read the newspaper anymore, or read anything at all. I watch the news and stew and get angry at our nation´s situation. So that´s not so good, either.

Don´t want to bother you anymore with this, but since you asked 🙂 :)......It´s just not a life. Even if I have the shunt put in I don´t have high hopes because of the AA....but I do want to be able to WALK outside again! And it appears that certain symptoms will be helped and others not.

Hey, you all, have a good Sunday. And Lisa and John, thank you so much for your support these past few days. You´ve certainly given me hope. Now if I could just figure out how exactly Mayo Connect works so that I can get replies to all who have written. Big hug to all,
Joan