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Any Adhesive Arachnoiditis members here?
Hi. My husband has AA. I searched for physicians who specialize in AA and got an old post from 2014. Any updates? We are seeking a specialist somewhere near Maryland and are currently in a Pain Management Clinic, in a dead-end insufficient treatment protocol that will not operate beyond their narrow parameters, which are not working well. He got transferred when his PCP retired, along with 67 other Chronic Pain patients. He is the only one with Intractable Pain and it appears that no amount of educating the NP and MD is going to make a difference. Anyway, I am trying again to find answers after nearly 12 years of his doing very well and having several pain free hours a day on the regimen that various PCPs had him on. Thank you for any help or advice or links or news.
I wish pain-free days and restful nights for each of you. Gentle hugs.
-Jeanne
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I am a 70 year woman that has been trying, for the last 24 years, to deal with ever progressing, severe Adhesive Arachnoiditis. I am in 24/7 severe pain that is so bad that I frequently pass out, several times a day from terrible spikes in my pain. I have sought help from just about every type of doctor in a 50 mile radius, to no avail. Each doctor I have sought help from has mostly turned away telling me that they don't have anything to try to help me as I have tried almost everything. Then they leave the exam room. I need help so badly I dont know what to do. I can't travel anymore to try to find a doctor in another state or even in my ohelp, wn state if it's far away. I need help. I'm despirate. Does anyone have a doctor, or medication or treatment that has helped you or someone you know that has advanced Ahesive Arachnoiditis ? Thank you for your time
MKM
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1 ReactionHello @mmata. I am sorry to hear of your progressing Adhesive Arachnoiditis and subsequent pain. I wanted to connect you with others who may be able to share more with you as you look for answers, so you will notice I have moved your post here:
- Any Adhesive Arachnoiditis members here?: https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/
Members such as @bad2thebone @ldb @loveusa @kgrainger and @the4curtins may be able to share their experiences with you.
Have you considered telehealth-type appointments whereby you meet virtually with a doctor outside of your travel area?
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2 ReactionsI am newly diagnosed my journey has just begun! I am sorry your in so much pain. There is a Facebook group if your on FB that has a lot of good advice. It’s called Arachnoiditis we fight together. And google Tennant Foundation. Sorry I don’t have anything else to share.
Greetings Jeanne
My name is LarryB and I truly feel your pain. May God bless your journeys.
I experienced a spinal cord injury injury at the hands of a doctor in Feb of 2006. By 2010, was on disability and was dying. The doctors had me on 300mg of morphine and 100 mcg of fentanyl a day. That is called a terminal dose. I attended the Mayo PRC that spring, and I came off all the narcotics. It was rough, but I got my life back. Oh, the pain is still here, but Mayo equips us to handle it differently. It was also in 2110, that they diagnosed me with AA. I have 3 nerve bundles around L4-L5. Then in 2017, Mayo began to talk to me about CSS (Centralized Sensisitation Syndrome). It's basically a sensory nerve disorder. Wow.
It's hard to understand why these things happen. I am lucky to be 73 yo. Hard to imagine another 20 years of this, but it's been 18 years since this started. So, what have i learned?
The Mayo PRC saved my life by tapering me off the narcotics.
I know that there will be good days, and there will be bad.
I know that I will be sick with nausha, and with pain always.
When I can, I cook, Church, craft, work my timber property. We weather the bad days.
Take it one day at a time.
Look for little things that help improve your life. I have a medical marajuana card, and it works well for me. We have changed our diets drastically which is helping our overall health.
Consider the PRC experience. It saved my life and then changed my life.
God bless your journey
LarryB
Thank you
mmata
amandajro
Thank you for connecting me with a different site. Could you please clarify for me the name of the correct site I should visit to post anything in the future? I am not sure. Sorry... but thank you for your help.
mmata
Dear kgranger
Thank you for your response to my posting and your suggestion about reaching out to Dr. Tennant and his foundation. I know of Dr. Tennant and his wonderful foundation and have tried to set up a telemedicine appt with him, but he/or his staff responded that initial appts needed to be in person. Since his office/foundation is in Calif. that is an impossible trip for me to make because of my severe pain. But, who knows, tomorrow is another day that may bring some light. Thank you so much for your suggestion. I will hold you in prayer.
mmata
Many prayers to you!
Im praying for all my AA warriors today and everyday. You all have a wonderful 4th of July. Cheers!!
long history of several medical issues but finally have dx of adhesive arachnoiditis, confirmed by MRI.
Looking for any information regarding this.