Any Adhesive Arachnoiditis members here?

@joanmahon Hi Joan. I think you are doing just fine in advocating for yourself, and I think you will be able to navigate and make good decisions. Sometimes that is difficult when you get conflicting opinions. I think you are correct to not put a lot of faith in a doctor who discredits your condition. That being said, they can easily miss a diagnosis. I am a spine surgery patient and 5 of the surgeons who saw me got it wrong. One suggested a spinal tap because he couldn't explain why the spinal cord compression I had in my neck was causing pain all over my body, and he was trying to suggest a differential diagnosis of something inflammatory like MS. He didn't listen to me when I described how if I turned my head, I could change where I felt pain in my body. I had bone spurs growing into the spinal cord and it changed where the pressure was applied when I turned my head. I knew I didn't have MS, and a neurologist who reviewed my MRIs with me said she didn't see any evidence of MS on my images which should show something if I had it. I didn't have a spinal tap. I had already done a diagnostic epidural injection for this doctor and he ignored the results because he didn't understand why I had relief of all of my pain temporarily (the body and leg pain too). He thought I should just have arm pain. I agree that you need a multidisciplinary approach like Mayo. My experience at Mayo is at Rochester where I had spine surgery that resolved all the pain I was having. When you get evaluated at Mayo, they consider everything and reconfirm the diagnoses that you have, and they look for other possible causes for the problems. You shouldn't diagnose yourself and start believing that you will have cognitive losses because of what you are thinking now based on one doctor's opinion that isn't completely acceptable.

I also went through something like that when a surgeon said I had significant spinal cord compression and needed surgery, and he wasn't willing to take time to answer my questions. When he heard that I was having balance problems and pain in my legs and body, he told me to go to a rehab doctor and fix these issues, then I could come back for spine surgery on my neck. I couldn't fix these issues because they were caused by the spinal cord compression. He caused a lot of fear by being arrogant and unavailable and because he was the first to say that I needed surgery. Even though you expect to hear that, it becomes a real situation when you do hear it. What he and the others missed is that spinal cord compression can cause pain anywhere in the body below the level of involvement. I found medical literature with cases like mine because I looked up a surgeon at Mayo and read his papers and I looked up a term that described "funicular pain" and that led me to find case studies like mine where patients had unusual and unexpected pain... like leg pain that was caused by a cervical spine issue and that was later resolved by neck surgery. I sent a copy of that study with my request for an appointment to this surgeon at Mayo and he took me as a patient and changed my life.

This is a very stressful time for you to have symptoms getting worse and seeking help which will affect your thinking. Stress can make you very forgetful and make it hard to figure things out and solve problems. The best thing you can do right now would be to do whatever will help you get through this time of waiting and worry. Music can help you relax and get your mind off the troubles. If they determine that you will need a shunt to relieve pressure on the brain, I wanted to share a bit about that. A elderly family member went through that and it was an easy recovery. I hope that can put your mind at ease if that is something in your future.

Your doctors need to determine if your new symptoms are caused by the AA or something else. If you don't have current imaging of your complete spine, you may want to request that to look for or rule out other spine issues. You may want to consult a functional medicine doctor about causes of inflammation in your body. Sometimes you can improve things by making simple changes. Body wide inflammation will cause specific inflamed areas to become worse. Things like food allergies, gluten intolerance, seasonal allergies, hormone imbalances and infections (like those caused by dental infections such as a bad root canal) and toxicity can all increase body wide inflammation and contribute to autoimmune disease. I just had this conversation with my doctor yesterday. That is why it is so important to try to prevent problems rather than treat symptoms. I think if you do get appointments in Jacksonville, that would be a fine place to start. They certainly can consult any of the other specialists at other Mayo campuses. You may want to ask about which are the accepted insurances or Medicare since that can be different at different campuses before you start. I started with a specialist that I selected based on his area of interest and how closely it matched my needs and Rochester was closer for the drive. You can do that too, and you may want to ask your primary doctor to help you choose, or you can call a department and ask who would be be a good fit.

Joan, I think that from the clarity of your post that you have the ability to empower your decisions, so believe that you can. I went through some difficult days too when I worried if I would become paralyzed by my spine problem when for 2 years, every surgeon I saw refused to help me. I also had huge disabling fears of surgery and was working through those fears. Even through I was afraid, I learned to advocate for myself. Every appointment was a new test for me to gauge how well I was handing my fears. I had worked out a lot of things that I could do to understand and confront my fears, and distractions that involved art and music.

You might enjoy this. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Hi Hon (Is your name Kim?). Thanks so much for your kind words. Amazing how often we find similarities in our cases. Sometimes distance complicates things terribly, so it´s why having Connect and the hope of getting to be seen by not one, but a team of docs at Mayo, gives one hope. We all have delicate nuances in our conditions. Unfortunately the day I was able to see Dr. Tennant in 2018 was a very harried day for him for many serious reasons. But he did everything he could to give me advice and a medical protocol to bring back to my GP. And it took me over two years to get an appointment with him--but it was so WORTH IT. The problem is that not all GP´s want to follow instructions/recommendations from an out-of-state specialist.. While mine did for a long while, she has slowly been withdrawing. I live in Florida, so really cannot see Dr. Tennant regularly. Although I have to admit: HE ANSWERS MY EMAILS with specific questions and concerns. And has now expressed strong reservations about my doing a spinal tap....just as I thought would happen. So am left between a rock and a hard place. With two conditions listed in the National Association of Rare Disorders (NORD). Mayo is my only hope I think, but I´m still awaiting response to my online request for an appointment. I have followed up once over the phone, plus my GP already sent them my records. But all of this is about my case--never mind-- I just wanted to say thank you for writing, and yes, we all learn from each other just a bit more. GOOD LUCK KIM, will be keeping you in mind.

Hello, Wish I could have seen Doctor Tennant! He did guide me, mentioned the Hormones. Well, my Endocrinologist was rude when I TRIED to show her that information. Not even Neurosurgeons are interested when they caused this painful Disease. Dura cut. I belong to NORD but this is not considered a Rare Disorder. I mentioned this to another post about Doctor Tennant. I emailed him about scar tissue removal. He said, do not do it. In other words, no more surgeries, procedures. I had asked my Pain Management Doctor who I respect, about it. It went on and off for a few months and I was getting worse, desperate. So, I did it. Doctor Tennant was right of course. I'm worse than before. There is another informative site, Practical Pain Management, PPM. I have the site on my phone so if I try to explain to a doctor what I have I "TRY" to have them read just the 1st paragraph, they look, hand phone back to me. I have searched and searched US, other countries where patients with AA there are sites to join the cause of AA but thats it! PPM goes into detail. Is this how it ends? Many many dr's who are responsible and yet they go on to the next case and sleep well. Thank You

May I ask how your husband is doing?

Kim, is that question for me? So much going on, and so many posts that I have a hard time making sure I´m answering the right person. Especially because my husband was the person who was ill in our family for over 16 years and all questions were always for him--now it´s my turn. He is much better right now thanks to a clinical trial at Sloan Kettering...our saving hospital for him. He´s had two very bad bouts of cancer, one of them metastatic, and we continue the fight. But right now he´s doing pretty well..... If this wasn´t for me about him, let me know, and please forgive. I have some positive Mayo news for myself but will wait for a bit. At least I finally have an appointment for August. This is progress, great progress for me. And I am ever grateful to the Goddess above....How is everyone else?

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

Well said! My best wishes to you. Sending healing and positive thoughts.

@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.

Fabulous reply, Jennifer. Very helpful tips on the How To´s of communication with Mayo Connect. Really appreciate the links also. Nighttime is when I can do a better job of responding, but didn´t want to miss a quick thank you. I suppose there are times replies should be private, not to fill everyone´s boxes. Will do better with time. Thank you again, J

@joanmahon Thanks, Joan, and you're welcome. No worries. If people want to un-follow a discussion, they can, but there are probably a lot of others learning something that might relate to their lives and would welcome the discussion so the public post lets them participate. I'm glad you checked in.