Any Adhesive Arachnoiditis members here?

I always wondered if all the chronic fatigue joint pain brain fog dry eyes ys mouth was related to the Arachnoiditis. I begged my PCP to do a blood work up for Autoimmune disease and wala! Sjogrens Syndrome popped up as an “8”!!!!! I actually felt relief that all this time it was not in my head. Now I can get the “right” meds to treat these symptoms apart from AA.

In 2012, I had my second spinal surgery which was a 3 level fusion-L3-S1. A few years ago, I was in so much pain, I sought out help. I limped into multiple Dr's with a cane, who then told me my pain was psychosomatic, or I was pill seeking. (I'm not sure if it's because I'm a woman, my age, or tattoos. Yeah, my flower and froggy tattoo make me a drug addict. smh)
In 2020, I was finally shown the arachnoiditis on my MRI, by a Dr who took the time to treat me like a human. He then referred me to his colleague, who implanted the Medtronic spinal stimulator.
It was great, at first. The last 6 months, the pain has creeped back. I'm thinking the leads may have migrated. I don't know how. I'm super careful with what I do, but something happened.
I contacted Mayo, to find a Dr. who could help. The woman who makes appointments called me yesterday and told me Mayo's neurology department doesn't, 'Do,' arachnoiditis. I then told her I haven't been formally diagnosed with Ehlers Danlos Syndrome, but I was diagnosed by a Dr during surgery. (I have been told by a few Dr's that I don't have EDS, because a geneticist hasn't diagnosed me. Wouldn't that be nice, if that's how medicine worked? You don't' have a disease, because you haven't been formally diagnosed. )
The department that works with/diagnoses EDS has such a backlog, they aren't even making appointments. I have read some theories that EDS can/does make arachnoiditis worse.
I'm wondering how many have both EDS and arachnoiditis?
I also have a lot of SI joint pain and have had about 7-10 injections, before I knew injections destroy joints in EDS patients. Also, throw in a little piriformis syndrome just for fun.
Anyone else have the trifecta of SI pain, piriformis pain and arachnoiditis?
How did you find a Dr to treat you?

While I can't relate to EDS I was just diagnosed with Sjogrens which has some similar areas of irritation. My joints are all filled with burning acid and every movement is painful. I have trouble opening jars, playing with dog and lifting toilet seat. My body apparently likes to attack itself due to Sjogrens as well as dry eyes and mouth and skin and a bunch of other issues. I also just got back my MRI from my Back since my last one 4 years ago. Looks like my Adhesive Arachnoiditis is now in the catastrophic stage 4 arena and my time is about up. My dura looks like a jigsaw puzzle piece Due to all the gapping holes my surgeon left me with after his disaster fusion attempt on L4-S1. Im leaking so much Spinal Fluid I have more in the bag than in my head. My head aches are are insanity, my thinking is way off and I feel Im a ticking time bomb. I don't even have a Neurologist presently. I am self treating using Dr. tenants protocol. My PCP ordered the MRI and I get meds from Pain management, that's it. That is my team two PCP's and 0 Dr.!!!!! We are the throw away patients from failed operations where no one wants to touch you. I can also relate to the stares from the doctors and pharmacist when filling prescriptions. We don't fill those quantities here or your filling this too early or you need to go to a 24 hour pharmacy or some other lie. I wish they could live one day in my body or yours to see what it is like to live like this. It is not fair. I feel your pain You are not alone and I wish you peace.

Sorry for the vent

Frank

Greetings all

I was diagnosed with Adhesive Arachnoiditis in 2010. There was also Lymphodemia, peripherial
Neuropathy, carple tunnel both wrists and plexitis. Sorry that life has to be harsh for some of you.

I spent almost 5 weeks at the PRC coming off of 300 mg of morphine and 100 mcg of fentanyl. I was dying and I knew it. The PRC has worked for me. I was SCARED TO DEATH... but I did it. I have an Iowa Medical Marijuana card now, and have no need for narcotics. I had hernia surgery 8 weeks ago and got by with Advil for pain management.

In 2019, I formally diagnosed with Central Sensisitation Syndrome which is a result of the original spinal cord injury. The past 24 months, I have lost over 90#'s due to the pain associated with swallowing food now. Crazy stuff. After 14 visits to Rochester since August, I have learned this. It's all on me as to how I deal with this. I have to adjust to live with these new sensations or I will fall. So, I will press on. Do what you can with each day that you are given. I am sick and in pain all the time. I sleep 30 to 60 minutes a day due to Thalamus damage.I can't change that, but doing things and keeping our brains off of pain works.

There is no 1 answer to chronic pain. There are better days, and there are worse. I have to keep moving, or I'll be stuck in my wheelchair until the end. There is strength in the people who visit this site. Lean on the strong and live a good life.

Larry Bricker

Did the Tennent method help? I am curious because I just got my results back from him and was diagnosed with AA .

Dr Tennants protocol has been more beneficial than all other treatments combined squared to the 10th power. If your not following Dr. Ts protocol and have AA you will suffer needlessly. Start today. You have to be your best advocate. Most Dr’s wont or do not know how to treat you. Get busy making your life better. It is up to YOU!

I am researching it and thank you

My 47-year-old son, Luke has stage 4 adhesive arachnoiditis caused by his cervical spinal cord injury nearly 5 years ago. Pain specialists have done multiple injections and multiple surgeries. He is paralyzed below his armpits and tormented by this horrendous disease for almost 3 years. The stress isolation and depression caused by this pain has begun to affect his heart. He was just released from the hospital where he spent a week with bradycardia. No one at the hospital including neurosurgeons, neurologist, pain medicine, cardiologist, have ever heard of this disease and have no clue how to treat it. We are desperate to find a doctor in Phoenix Arizona that can help.

Greetings all

So sorry to hear that you are dealing with this. Some days are hard.... aren't they!

I experienced a spinal cord injury at the hands of a doctor, in Feb of 2006. By October, I had to leave work and go on forced disability. By 2009, I was taking 300mg of morphine and 100mcg of fentanyl. I was dying and I knew it. I attended the Mayo clinic PRC and I was blessed to get a lot of my life back. The original injury then caused Adhesive Arachnoiditis. In 2017, I was diagnosed with Central Sensisitation Syndrome CSS with cause. I did ok until the last 2 years. Nothing prepared me for what was about to happen to me. Sick, nausha, vomiting, new pain epicenters in body, loss of ability to sleep, cramps, diarea, and now pain swollowing food. I now weigh 128#'s which is less than what I weighed in high-school. I was obese in 2010 and weighed 260 pounds. 5'10" tall. My specific CSS is a malfunction of my sensory nervious system. This effects and affects every body function i have.

My advise is this. Be strong and do the best with each day you are given. I am sick and in pain all the time. I sleep maybe 30 to 60 minutes per day. But, I keep going. It's hard....I know. We have to keep our brains busy so we better ignore pain. I do so much better when I can accomplish small things everyday. So, I love to cook and everyone in the family loves that I love to cook. LOL.

Walking is horribly painful but loosing 130+ pounds sure helps mobility. I was told that i would lose use of my legs in 2013. I can't walk far, but I still walk around the house unaided. When we are out, I use a manual wheelchair. I can move around again with much less pain.

I saw a WONDERFUL doctor at Mayo last month. He said that he's sorry this is happening and that's its going to get worse. Nothing can be done. So, he said "you have a forest of problems in front of you. So, you need to attack each tree one at a time." Hopefully, little things here and there will help you too. It was good for me to be there that day. There was a Vietnam veteran there in a wheelchair. He was missing his hips and legs. They had modified a wheelchair so he could lay on his stomach and he wheeled himself around with no help. His wife was there, just like mine. It takes moments like that to remind me how blessed I am.

I pray that you can find some answers and relief, as you move down your life's path. God bless your journey.

LarryB

I just want to make a general statement about Adhesive Arachnoiditis. I have been dealing with it for about 13 years and have not found any doctor in my area that really knows anything about how to deal with this disease. I believe AA and EBV are connected for people with extreme back problems. There are probably a lot more people that have AA than the medical community wants to admit. I have had multiple MRI’s and CT scans and never in any report has a radiologist ever noted that I have AA. I had an older doctor who is now deceased diagnosed me with AA in his office in about 2014 and he told me at that time he did not know of any doctor who was still practicing medicine that specializes in AA. My present Dr. says I have 5 levels of AA looking at the same MRI done in 2020 that the radiologist did not acknowledge I had AA. The info from Dr. Forest Tennant makes more since than anything I have heard yet about dealing with AA. The surgery that caused my problems was in 2009 when an artificial disc that was put in my back in 2005 got loose and started breaking off bone fragments (according to the Dr that installed it) so it had to be fused and locked down. Shortly afterward I started having thyroid problems and high blood pressure. Then came 2 carpel tunnel surgeries, cataract surgery on both eyes (because of so much medicine settling in my eyes according to the eye Dr) and became diabetic. I had a spine stimulator put in and taken out 7 years after put in and after about 15-16 blocks of steroids to which I have had no relief. During that time I started having scar tissue growing on the ligaments of my right hand and other places on my body. For a long time all that I could do is manage pain. In Dec. 2020 I got Covid and in Jan 2021 I started having pain in both hands in the joints. I went to a Rheumatologist but I had no Rheumatology issues and got no relief. The only thing I found out was that I had EBV recently and several years down the road I still get the blood work results that I still have just had EBV. I think there is something to the idea that AA and EBV on people who have had major back surgery are connected. Several people have had some of the same things going wrong with them that I have going wrong with me. I think inflammation from AA overloads the Autoimmune System causing multiple things to happen. Over the last 6 years I have been loosing the ability to walk very far. I am down to about 100yds and then I am done. All of my joints hurt when I move that part of my body. The more I do the worse it gets. The last year I have lost the most. At the rate of the last year I will be in a wheel chair in less than 2 years. About 5 years ago I started have problems turning my head. If I lay down very long my vision gets blurry. If I try to work on my old truck laying down and looking up I get sick at my stomach and my ears start ringing. There are a lot of things I did not realize were connected until I listened to others. Inflammation in the spine affects the brain and all we do. Brain fog started about the time everything went crazy. Right now it is just managing the pain and keeping lower back activity to a minimal. Physical therapy and pain management are 2 important that keep me going. The mental part is what wears on you along with the pain. The mental is what will get you through it all. You all have the right to find your choice of help to get you through it all. I am a Christian and there is where my strength comes from. You may believe in someone or something else but find out what or who is real to you. This AA is not going away and you need the mental and physical strength to help you live through this horrible disease. Be sure to tell your Dr’s all of the things that are happening to you regardless if you think it pertains to you back or not. They may be connected and the more info we give the more they will learn in diagnosing AA. Maybe one day there will be a cure.