Arachnoiditis: Looking to talk with others

Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial period. If the trial is successful, I will be getting one surgically implanted. Has anyone else tried a spinal stimulator? If so, please let me know if it was successful or not. Thank you!

Hi, I was just diagnosed with Arachnoiditis & will be going thru a spinal stimulator trial period. If the trial is successful, I will be getting one surgically implanted. Has anyone else tried a spinal stimulator? If so, please let me know if it was successful or not. Thank you!

Hi,

If anyone is still on this message board, I need advice please. I am in my 20s and started having lumbar and sacral back pain about 6 months ago. At first it was mild. In addition to the pain, I have had a strange crawling sensation in the same area too. The pain has waxed and waned since then but now is almost always there. Most of the time it feels like I have a tight band around my back, pelvis and low abdomen. About 2 months ago, I began having spasms and feeling like I needed to pee all the time. About 2 weeks ago, I started spasming really badly in all my pelvic muscles while still having the back pain and now am barely able to have a bowel movement because my muscles won't relax. I also have terrible vibrating/tingling in my sacral/pelvic area every time I sit down. I had an MRI of my entire spine that was normal about a month ago. I've also had numerous normal labs. Believe me, I've had almost everything checked. Acute phase reactants have been normal 3 times. I don't know what to do at this point. Does anything know what this could possibly be? Does it sound like arachnoiditis? I have no obvious known triggers like any spinal surgeries. I did have myself tested for HSV-2 and tested borderline positive for antibodies but have never had any obvious outbreaks that I've ever noticed.

I had a horse riding accident and crushed L1. Since then I have had three back surgeries. During the last surgery my dura was cut and I had a spinal fluid leak. From this I developed Adhesive Arachnoiditis and Tarlov Cysts. I tried a Spinal Cord Stimulator, but unfortunately they were only able to insert one wire instead of two. For the first year my pain was less and I was able to walk a long way. Then suddenly, I lost the ability to walk and the pain returned. I tried different programs, but could not find one that worked well for me. The doctor refuses to remove the battery.

Hi! Is this board still active?

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.

Hello I have AA Probably for over 20 years. I am currently fused from C3 thru my sacrum. T 1 thru T3, are not fused. I had MRSA meningitis about 17 years ago. Was paralyzed, and on a ventilator for many months. I eventually recovered ( somewhat) Have a permanent supra pubic catheter, from paralysis. Spent 16 months in the hospital, including, extensive rehab. I now can walk, with a walker, have bad bowel issues, and of course, lot's of pain. My spine surgeon, who got me out of my wheelchair after six years, did another CT myleogram and said...you just have Adhesive Arachnoiditis. He DX me with a tethered spinal cord at C6 and sacrum. He was very nice, but kind of blew me off and said go to pain MGT. Pain Mgt is a farce, when it comes to this diagnosis. nothing really helps & the DEA. prevents me from getting any decent drugs. I grew tired of everything & i
, currently on Medicare & Medicaid in AZ. I've lost all my money, get no support & seem to be getting more symptomatic. I still lift 5 lb weights, & do squats to strengthen my legs & glutes. I have th AA in entire spine, including now cervical. Entire spine is very rigid, which u might expect with all my hardware. My ability to sit up and hold my head up is very limited. mostly lay in special bed & mattresses that medicaid provides. I get free medical care., never have to pay a dime. But no one in this valley really treats my condition. get a PT referral (PT has never dealt with my disability& all the hardware) Given up on PT and i can't drive, so my life is very boring, painful & lonely. Can't really socialize much, since i can't sit up for long. I am contemplating a pain pump, since docs can't really help. I really don't have much area to put in pump, with hardware & DRG stimulator. Lately, i'm getting worse, my spine feels like it's stuck together & i can feel the nerve clumping & worsening SX. Since i can't afford Mayo, or much of any thing Do U feel i might get some relief with a pump?? Only drug that works, is Fentanyl. Worried surgery might make me worse? I try to stay positive, but it's so hard & depression takes over. My mobility is getting worse. Anyone recommend the pump? Situation & isolation makes me question living I'm single & very attractive, but no one will go out with me & hard to make friends, with my situation. guess i would like supportive friends? I'm so worried that i might end up back in a wheelchair. Sorry for the long text, i am a retired RN with a master's in healthcare. My education & experience, really don't help. Severe shortage of doctors here, in Maricopa county. Have read DR Tennant's work, but can't do most recommendations, since i'm so fused Only option, go to good ER & beg for Fentnyl. Any advice? I feel totally helpless Thanks