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Arachnoiditis: Trying to find a specialist
I am from North Carolina. And out of the 15 doctors I have seen since 2015 have said that arachnoiditis is rare and you do not have it. But no one is listening to my symptoms. Received a shot in my L5. But the doctor missed and hit the nerves while injecting Since that date I went from being able to walk to not at all. I am now in a wheel chair. Pain is in both legs to toes. None of the pain meds that my pain management has prescribed touches the pain. I have jerks in both of my legs. Weakness. Tingling and numbness in feet. My right eye has lost vision. I sweat on the top of my head for no reason. And out of the 3 MRIs I have had none have been done on the lumbar wth contrast. The pain gets worse week by week and no luck on finding a doctor. We are willing to travel if necessary. Please help.
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Do you know if mat is compatible with SCS?
Hi we recently have been diagnosed with arachnoid cyst one on the right is large one on the left is smaller please how can we join or find support group
Thank you for any help
Hello @titan26. By posting to this discussion, you have joined your support group. Mayo Clinic Connect is an online community where members share their experiences, frustrations, successes, and even failures along their health journey. Here is another discussion focusing specifically on arachnoiditis you may find worth your time to read through and participate in where you feel comfortable, https://connect.mayoclinic.org/discussion/arachnoiditis/.
@titan26, how are you doing with your diagnosis? Are you experiencing any symptoms or undergoing any treatments?
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1 ReactionIt has been an emotional roller coaster that I would love to get off anytime soon. Symptoms include dizziness headache constant throb and pressure in head vision problems speech problems memory tingling in hands
There is no support for mentally what this all does that is frustrating and that it keeps being blamed as depression
I've have AA n have been to the pain clinic. My legs go into uncontrollable muscle spasms. Pain clinic would like to put a HF10 spinal stimulation device in me. Has anyone had success with this? There is only "hope" that it will control spasms. I've had several gun shot wound (vietnam) and 7 back n neck surgeries, so why should I allow them to cut me again which they say caused the AA to begin with? Any suggestions beside pain pills?
I too have many of the same debilitating side effects that were brought on after epidural that was supposed to help relieve pain. I am at my wits and the pain is constant 24/7. Is there any help that can be had? I am certainly willing to do just about anything but I will not do cervical spine surgery that will be more debilitating. Because I am already a quadriplegic and all I have is above the shoulders. Please recommend help Help! Anyone!! Pain in my head, neck, and shoulder, fatigue, vision impairment, memory problems, mood swings, depression, etc...
@davelt1033 @jarhead
I had a Burst DR spinal cord stimulator implant two years ago for sfn burning pain in my feet and numbness and tingling up to my knees. It initially gave me 80% pain relief. After 18 months it gradually decreased its effectiveness, and now it's still helping with the pain at night time but it's doing very little during the day. Morphine, Klonopin, Imipramine, Meloxicam and Tylenol do most of the work. It would be really nice if the stimulator would maintain its efficacy for a longer time. Now I'm pursuing the option to switch to a dorsal root ganglion stimulator implant. Trouble is it's kind of the last resort treatment. The DRG specialist wants me to hold off as long as possible, and she's working with the man who makes the adjustments to the SCS. Meanwhile, the pain continues to mount. Frustrating, isn't it?
Jim
Thanks for sharing Jim, unfortunately my symptoms are getting increasingly more serious and difficult for me to maintain any kind of normal daily life. My head hurts from sun up to sun down every day I have pain in my neck & shoulder also as well as vision problems, memory loss, concentration problem, mood swings, irritability x10, etc... and I have unfortunately been medicated to the max n the past so much the narcs stopped working, so I quit ALL pain meds, :(now i wis I was a junkie again) the pain is getting to be out of control!! Sometimes has to be done!!
I have a friend that it did not work on and I am on a facebook arachnoiditis page and from what I see, for those that it DOES work on it is only their leg pain. I read too much negative stuff so I am to scared to get one afraid it will be worse. I would take the pills if they offered them.
I found kratom works well. Look up dr forest tennant . He has good pain relief info on ARACHNOIDITISHOPE.COM I tried acetazalomide and it helps with the pressure of the spinal fluid that is blocked by arach. It helps me more than pain pills.