Arachnoiditis: Looking to talk with others

Same here I have it as well I will say this injections make it worse . It’s a given that injections cause scar tissue and with Arachnoiditis that’s a no !! no !! stay away from all needles and knives cutting and sticking you period the best thing now is treat the pain . I thought about a pain pump myself but after the spinal cord stimulator didn’t help and needed emergency surgery to take it out no more foreign objects will be implanted in me ever again . With implants to many hoops to jump around once in place hard to get MRI’s certain institutions only have certain MRI’s then you have to go somewhere else and so on and if it’s an definite emergency situation the hoops is not a place I want to be at If I need the care right now . I found a good pain management clinic to help deal with the pain that never shuts off a awesome neurologist and my PCP our all on board and know exactly what to do and what medications to give and not give for this diagnosis.. all of this is a must for proper care for you again shots isn’t your friend with spinal Arachnoiditis you have to stay on top of this no one else will

Hello,

I am a 34 year old male living in the Seattle, WA area. Looking for some help to see if this is AA, a potential doctor you would recommend in Seattle.

For my symptoms, here is my history
- I've had 2 L5/S1 laminectomy/Discectomy. Apri 2021 and December 2021.
- After my surgery on December 2021, I've continued to have pain. All on the left side of the leg. Mainly upper left hip, left calf muscle twitch, and some pins and needles in my foot from time to time. Pain was about a 2-3 out of 10. Could be managed with Physical Therapy and over counter medication when needed
- Since December 2022. When I was working out and did a overhead shoulder press. My left hamstring felt a strain. Since then I've had the following symptoms. Bilateral Paresthesia, mainly in both calves. A constant left muscle twitch, feeling of some weakness in the calves at times, burning sensation in my quads at times, feeling of a drip down my leg, and headaches on occasion.

I believe based on my symptoms I may have Adhesive Arachnoiditis. I would like an expert who has diagnosed this to review my symptoms, imaging, and provide next steps. I had my neurosurgeon review my results and he did not believe i had that disease.

Please email Dr. Forest Tennant. He will review your mri and you will get a wealth of information if you google Arachnoiditishope.com.

Good luck.

Hi. 64 yo female here. I have dealt with adhesive arachnoiditis for 13 very long months. Many steroid shots to the spine, 14 back surgeries, two myelograms, and and then POW..... intense pain beyond anything I have ever felt. Walking and/or even standing is impossible.

I just received the same diagnosis after the surgeon knicked my dura during surgery causing spinal fluid leakage creating arachnoiditis immediately post op. Extreme numbness and tingling in my feet, right leg weakness over my s1 dermatone. Bad low back pain with flares. They want me to try a spinal cord neurostimulator. I'm 4 months post op, they say after a year with PT is where you find out what nerves are really dead and not coming back. I'm scared, depressed and constantly tired. I hear you and feel you.

Arachnoiditis and prednisone...
Has anyone taken or now takes a corticosteroid for the pain of arachnoiditis? If corticosteroids relieve inflammation and arachnoiditis pain is attributed to inflammation, why isn't it used? 😢

May I ask what arachnoiditis feels like. I imagine it is very painful. My reason for asking is an MRI looking at my lumbar spine reported, "can not rule out anachnoiditis." I have no idea whether or not I actually had arachnoiditis.

The report actually said, "Thickening-caudal nerve roots: cannot exclude history of arachnoiditis"

I took prednisone for other things and it relieved all kinds of inflammatory pain. I was always told that one reason doctors don't like people to take prednisone is because it relieves the pain but doesn't prevent the damage.

Another reason is that serious things can happen and people present in a way that doesn't reflect how serious the situation is. I once showed up in the emergency room because someone called an ambulance. I didn't want to go to the emergency room.

I wasn't outwardly displaying any distress except for being somewhat short of breath. A heart monitored was placed on me and I was taken for a CT-scan on a cart. When the CT was done, I was asked if I wanted to walk back to my room which I did. That was when all the alarms went crazy and doctors and nurses raced by me looking for the patient who was causing the alarms to go off.

It took some time for them to find who it was but they came back to me. They asked me if I wanted to lay down and they put me in a wheelchair to take me back to my room.

A doctor came in shortly afterwards to tell me what the CT-scan showed. He said I had a massive, multiple, extensive and bilateral pulmonary embolism. He said I should be having some chest pain but I denied having any pain at all. I was thinking I could go home and be seen by my PCP later. The emergency room doctor said I had a bed in the intensive care unit.

The doctors in the intensive care unit seemed to focus on how much prednisone I was taking. Then they started to suggest that prednisone might have contributed to my lack of symptoms. Prednisone might have even caused the pulmonary embolism.

Too much prednizone caused my liver to release to much glucose and turned me into a diabetic. Further, it weakens your immune system

Thanks. I'm still weighing the risk vs relief of this 24/7 horrendous/unbearable pain.

Hello @lanieg. You will notice I have moved your post into an existing discussion on arachnoiditis, which you can find here:
- Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/

I did this so you may continue your discussion with @dadcue and @bannisterkl while also connecting with other members such as @lynetteh1 @skeeter79 @escobedoch23 and @milesdaviskindofblue who have shared previously.