Arachnoiditis: Looking to talk with others

Good morning, John. Thank you so much for replying to my concerns re public vs. private. I do try to ensure postings might be useful to others, and try to tease out too much personal "chaff" so I thank you for your approval. Do feel free to reign me back if I make a mistake!

Coincidentally, I had read (and printed) the article about "puzzling diagnosis" and even found another one along the way. I´m signed up on the Brain and Nervous System Group for NPH, and also for other relevant groups about Arachnoiditis, Pain Management, the Spine, etc. I learn so much from them ALL. The weekly review that comes out as a Digest is an amazingly easy way to keep up to date....I can´t begin to say how much I "love" Connect....forgive the number of raves, though.....am just so grateful to Mayo and all the Moderators and Mentor Volunteers out there monitoring and giving suggestions...like YOU, right now! Will be headed to Mayo JAX mid August, so appreciate all the reading resources. Found articles and research done by the MD who will evaluate my case, so feel as if I already know him a little.

Thank you again, and have a great week to all, Joan

Thanks @joanmahon! - If you haven't been to the Mayo Clinic Jacksonville Campus you might find these videos helpful.

Florida Videos - Mayo Clinic Patient Video Guides
https://videotours.mayoclinic.org/florida-videos/

Oh, John, thanks again. Of all the resources you indicated, I had not yet gotten into the NPH Discussion group...what gold therein! Somehow I had missed it. Thanks again, I´m in heaven!

Hi Chris, after a full day I finally realized I didn´t get to reply to your kind note about the spinal tap....I managed to reply to John but not to you, so my apologies please!

I have to admit I had been giving a lot of thought to whether I could be contacting Mayo about this particular aspect of my August "evaluation appointment" and, until you mentioned it, I wasn´t sure it was even possible to do this. What I did do (when attempting to make an appointment online) was I brought both subjects into the topics I was hoping to address (spinal tap to determine if NPH is a correct diagnosis, and the counter-indication of a spinal tap when have already been diagnosed with Arachnoiditis years ago). Am planning to see tomorrow if there is somewhere in the Patient Portal that I could send a message explaining this particular concern. I am sure the docs are full of messages from their current patients...don´t want to be too annoying. But thank you so much for quickly capturing that piece of anxiety. Life has gotten so full of anxiety since the symptoms started adding up....so thank you again for writing and taking so much worry off, with your suggestion. Nighty-nite to you both!

Please be very very careful what you do next. I have Adhesive Arachnoiditis, scar tissue stuck to nerves, pain can be unbearable. More done spine worse it can become. May I suggest reading, Practical Pain Management, PPM. Doctor Forest Tennant, Arachnoiditis Foundation. There are many sites to research. The Burton Report, Arachnoiditis. May I also suggest researching as much as you finding a Pain Management/Anesthesiologist. Good luck to you

Yes, thank you so much. I have for years followed Practical Pain Management, and I am indeed a long-distance patient of Dr. Tennant´s, who responds by email whenever I have concerns. I think he took me on when he realized the ARC diagnosis came from Dr. Antonio Aldrete, whom he knew well, and saw the many locations of ARC in and around my nerves. At the time it was next to impossible to get an appointment. I met Dr. Tennant in 2017 and was an amazing doctor. Days afterwards he closed his clinic, but told me he would still be available over internet from his Foundation.

Thank you so much for your additional reminders. This is precisely what causes me a sense of anxiety. I have a response from Dr. Tennant about it, that I will add to my consultation at Mayo next week, when this will be the first theme of my consultation. Have been assigned an excellent doctor there.

Over the years I have printed everything I ever could about ARC, including Burton Report and information from the doctor in the UK who was a first guide in this process. Thank you so much Kim. You are Spot On...necessary to research everything about one´s case. We are our best advocates. Sometimes our ONLY Advocates! Joan

Thank You so much Joan, I am desperate. I am in-touch with Tennant also. I really thought my Dr. would follow his Protocol. My called today left message about the Clindone reaction. May I ask you the Dr's name you will be seeing at Mayo, State? If not it's OK. We are our best Advocates, have to be. I think the Dr. you mentioned in UK last name I think, Smith? I wish I had know about Dr. Antonio Aldrete. I read about him, found out he retired also. Tennant is so kind. I am very disappointed in my Dr.! I realize he not that familiar with AA. I wish good luck and if you feel comfortable letting me know how Mayo appt. went. I'm trying to get Patients together, Advocates to go to the Legislature to bring this Disease to the Public. To the the Doctor's know their surgeries are in question. Why do they keep saying, I can help when it only gets worse! Thank You for listening Joan.

I also have A.A., so happy you declined surgery.
Failed Laminectomy 2008, 5 levels Lamina removed no fusion. I was diagnosed many years later. I have learned, hearing "failed Laminectomy" "failed back surgery" are words that must be, researched because they could be used in the place of "A" or "A.A. that surgeons run away from. My experience only, radiologists I have met have never heard of our diagnosis. Yesterday, MRI, asked if they heard of it, YES, YEA! I brought my information about it, they copied it and put it in my files. Pointed out all my concerns, fears. I did have with and with-out.
Maybe I could have been helped if diagnosed early? To far gone. 2016, fusion. I was told by surgeon fusion would help, high percentage. No one I new I had AA at this point. Had the surgery. Rehab. fractured vertebrae, HOW? few days latter another surgery. Surgeon must have seen the nerves and scar stuck!!! After, I called him, complained of more pain. Never returned call.

Nerve blocks, Ablations, ETC. How I wish Patients dealing with so much pain, desperate for help as I was not the least bit aware of my diagnosis. Only the pain. Take a step, pause, Call Dr Forest Tennant, Read the Dr. Burton report on AA.. Contact NORD, Arachnoiditis Foundation, Dr. Forrest Tennant's Foundation, Dr. Sarah Smith, Arachnoiditis, UK.. I hope this may help. Wishing you a good day!

Hello, Dr. Tennant, NORD has helped. When I email him, ask questions he or staff always responds. I have not met 1 Dr. who claims they know about A.A. or they don't want to know because they caused it.

I have a pain pump, happy with it. BUT, I have been taking Hydromorphone since about 2015. My body has become immured to the pills and liquid. I told my P.M./Anesthesiologist he doesn't seem to hear me. I asked for a different kind. I am his 1st A.A. patient. I asked him if he gave up on me, he was insulted. Not getting positive feeling from him?????? Pain is taking a terrible toll on me, husband also. I'm having pelvic reconstruction surgery which is very needed but I am terrified of the pain I will have from that and the pain I have everyday??? Has anyone experienced hair loss, urine, bowel retention? After extensive reading those could be one of the side effects? Dr. Tennant and other Researchers in AA have also agreed that a certain hormones do help with pain, I can't find a dr. to read the information he sent me.

I have Adhesive Arachnoiditis, Sadly you may be right. Please do not have anymore procedures. Surgeries, Epidurals, nerve blocks caused mine. It may be difficult to find a Dr. who is familiar with this. If you can research Arachnoiditis Foundation Doctor Forrest Tennent, Dr. Burton retired from Jones Hopkins, NORD, National Organization Rare Diseases. DR. Sarah Smith from UK. May I suggest you to learn as much as you can about Arachnoiditis. My situation became worse as I was never told anything about the disease and I trusted the Doctors. I learned 16 yrs later. Sometimes the words they use is "Failed Laminectomies". "Failed Back Surgery" This can be found in many of the Arachnoiditis Literature.