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Any Adhesive Arachnoiditis members here?
Spine Health | Last Active: Dec 4 6:51pm | Replies (117)Comment receiving replies
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
Replies to "Dear Lisa, I´m not sure if I let you know that I followed your advice and..."
Hello, I just came across your message. I also have AA. Very hard to accept because of the reason I and all of us a-quired it. Did you get the information and care you needed? I sincerely hope so. I wish the was research on AA to help that pain, walking, bending, standing and so more. Hope you had good luck!
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@joanmahon Hi Joan. I looked up some Jacksonville Hotels and there are several within 6 miles of Mayo that are pet friendly. Maybe you could take the puppies and your husband with you. That might help you get through everything and he'll be there to take notes and remember the details. https://hotelguides.com/hospitals/florida/mayo-clinic-jacksonville-hotels.html
Patients really do have some power in their recovery and believing you can do it can make it happen. You might enjoy watching the inspirational Ken Burns documentary about Mayo. Back at the beginning of my spine issues when I was really afraid and having panic attacks, I thought about why and I realized that I had all the tools myself in my own life experience to overcome the fear. It took work, and I did a lot of things including watching Ted Talks about fear. I turned to art and music to help me cope before I came to Mayo. I had 2 years of looking and not finding medical help and knowing what was wrong even as all the doctors were missing the complete diagnosis and wouldn't help me because they didn't understand why I had the symptoms I had. Those were the hardest years of my life, and I was taking care of both my elderly parents who were disabled and in wheelchairs because of disease and injuries. During that time, my dad passed away. It was right afterwards that I was given my appointment to come to Mayo and a surgeon changed my life. I brought my best effort and I had a great physical therapist doing myofascial release work who helped my surgery be successful by loosening my neck muscles which made it easier for the surgeon to do his job, Mayo is thorough in evaluating, so don't worry. Stress will make you forgetful and is bad for your health. Do what you can to reduce the stress in your life.
We have a discussion about Art and Healing and how doing anything creative will help you overcome the stress and have better health. Here is the discussion.
https://connect.mayoclinic.org/discussion/art-for-healing/
Pets help with healing too.
https://connect.mayoclinic.org/discussion/what-pets-can-do-health-and-healing/
Gratitude will help you focus on sharing the good things no matter how small.
https://connect.mayoclinic.org/discussion/gratitude-discussion-group/
You might want to turn off the news and watch something calming on PBS. Don't place expectations on yourself, just do whatever will help you feel happy and valued. It sounds like you've been the one who always takes care of everyone else, but it's your turn now to have someone take care of you. I'm so happy for you to have an appointment at Mayo. I had to drive 5 hours to Rochester for mine, and it was worth every mile. I know you can do this, and I'm sure you have made a lot of people's lives better in your career. It's hard sometimes to surrender and be the patient when you think you need to be the caregiver. We're here for you and I hope you will share your experience after you get to Jacksonville.
Joan, thanks for your message. I'm seeing it because I participated in this discussion. You can also tag someone, so they will get the message by typing a "@" and their user name. Those show up in blue on Connect when someone does that and I tagged you by typing @joanmahon at the beginning of this message. You can send private messages too if you click the envelope at the top, and you will need to type the same thing to tag someone to send them the message. Hugs and hopeful that Mayo can help. You'll be in good hands.