This is the only post I have found on the entire internet that describes a life after arachnoiditis.
Yep, buzzing is par for the course. Buzzing, twitching, spasms are all signs that your nerves are being interfered with. I used to get this feeling that I had dropped a spot of hot gravy on my leg, but when I looked, there was nothing there! I got arachnoiditis from being given two myelograms in the early 70s, even though I was known to be allergic to iodine - iodine is in all x-ray dyes that don't have barium. I spent a few years being really mad about that, and very depressed, but gradually I learned to cope. I started studying with the Open University - something I would never have done if I hadn't had to spend most of my life sitting or lying down - and discovered that I was actually pretty good at it! I got my degree, and then a Master's, and then got back into work, so there is life after arachnoiditis.
Sorry it took so long for me to get back to you. We've been playing musical computers here and I finally got mine back.
My Arachnoiditis was diagnosed in 1996. I'm not sure when it actually started. I want to say sometime between 1990 and 1994'ish is when I started having real problems with my back. Had several of the treatments that they are now saying cause this condition. Right now, while I'm searching for a competent doctor that I don't have to educate...scary...my Family Doc is helping me manage my pain issues and he's managing all of my meds. I'm allergic to good pain killers so at the mercy of Advil and muscle relaxers. When it's really bad I'll go get a shot...usually demerol or morphine...I don't want to take those regularly because I don't want to build up resistance to them. Save that for much later. I have new MRI films taken about 2 months ago and I have buldging discs in my neck now. I do NOT want my neck fused. How hard would it be to drive with a stiff neck?? I did find out that my 2 carpal tunnel surgeries weren't needed as the problems in my arms and hands aren't a carpal tunnel issue but it's being caused by the discs in my neck. I swear if I would have had my pet's vet do the testing and diagnosis I would have never had the carpal tunnel surgeries.
Now...I'm officially rated at 70% paralized from waist down but can still walk without using cane or walker. I can't run or jog which is a challenge when my toddler, grandbaby, is here. She can out run me..lolol....little stinker. She keeps me young!! I have good days and bad ones. Pretty much depends on what I've done the day before or when a low pressure weather system comes in I'm like a human berometer and those days are very painful. The cold doesn't bother me so much as the low pressure does. We've been HOT here and there's a low pressure system coming through here and I can still feel it regardless of air temp.
I had Lumbar Fusion, Anterior & Posterior, in 1996 from L4 through S1. They went in from front first and then turned me over and went in through the back. Took me a couple of months to get walking well enough to not use a cane or walker. After my surgery...way after....I had a couple of pretty serious horse accidents that didn't help matters much. I would get back on a horse in a heartbeat but my family freaks so for now I'll just live vicariously through a few of my friends.
There's a website...COFWA....you can just type that in browser and it will list the site...usually at top of page. Lots of great info on there and great people. Some of us are on Facebook and keep in touch with each other that way. They also have a Yahoo Group but my Yahoo account got hacked so I'm not on there anymore. If you have facebook my user name is Susan Rosenquist-Peterson. There is another Susan Rosenquist that is OLD and she's also my Step-mother....my profile pic is my Punkin Princess Grandbaby...she's sitting in a little pool with little hybiscus flowers in her two piggy tails. It was her birthday and it was all about luau with Nemo and Little Mermaid. Soooo...if you have Facebook look me up and send me an add. Send a private message too so I know it's you. There's lots of us out there....You're not alone!! Talk Soon!!
Wow... I can relate soooo much! The invisible bugs on my legs bother me the most when I am driving and think there is something crawling up my legs!! And the lips??!! Holy cow, it's hard to know what is from the Arachnoiditis and what is from some other problem... but I suffer from the buzzing in my lips, too! Almost feels like I have just been to the dentist and the novicane is wearing off...
What have your doctors told you? I was just diagnosed in June but the symptoms started after my last surgery over 2 years ago. None of my doctors address the Arachnoiditis and try to tell me my pain is because I need 2 fusions (lumbar and cervical).
How did yours begin and how bad is it now?
Thnks so much for posting! It's unreal to speak with someone who also suffers the same symptoms....
YES!!! And it's so random too. Legs, feet, arms, face....name it. I've been living with this since 1996 and it has progressively gotten worse over the years. Sometimes feels like I'm being bitten by fire ants, get random twitching....eyes are the most annoying and lips too...and I HATE when it feels like ants are crawling on me or some other bugs...ick. I look and nothing's there but just that feeling of ICK!! Don't know how to make it all stop and not sure we even can. Wish we could...wish some doctor somewhere would do something to help us. Take Care...You're not alone!!