Arachnoiditis

[Quiltergirl]

Has anyone else been diagnosed with Arachnoiditis? It was found on an MRI to rule out osteomyelitis due to bacterial meningitis. From what I've read it is chronic and progressive, with no treatment available. The disease that keeps on giving!

[IRHONDA]

wow theres a lot on the internet about this you need to follow your specialist instructions seems to have medications to help you but google it please

[Quiltergirl in reply to IRHONDA]

I have Google arachnoiditis , it is quite frightening . Survive bacterial meningitis only to live in severe chronic nervr pain . Only worst case senarios mentionef. My doctor is calling Wednesday afternoon with "a phone visit " to explain further.

[IRHONDA]

so sorry god to have meningitis plus that its so not fair .... god love you , oh ok I thought it said you need to get onto it with medication ... look do what the doctor says also google natural remedys I always do that and combine both, let us know how you go good luck ok ... take care but please don't stress no matter what don't stress as the meningitis feeds on stress .... I will pray for you if you don't mind <3

[Quiltergirl in reply to IRHONDA]

Prayer is why I survived meningitis , thankyou for praying ! I'll let you know what my doctor says.

[IRHONDA in reply to Quiltergirl]

yes I do believe this too, I do hope you get well stay strong and I will include you in my prayers ...god bless you x if you need a good book Becky Dvorack ""The Healing Creed"" is a really eye opening book very inspirational and with having to live with vm and your extra burden with the Arth, we need as much insp. as we can get . x

[maemoore]

I have alot of zinging down my left leg and weakness. MRI has not been conclusive of any damages to the nerve. It has sure caused alot of problems. I took gabapentin for several years but it no longer seems to do the trick. Tramadol has helped more recently. I had bacterial spinal miningitis in 1976 from a car accident. I am deaf in my left ear and my right is slowly deteriorating as well. I had Orbital blowout on my left side requiring reconstruction over 2 years.

[Quiltergirl in reply to maemoore]

According to my MRI report" new shadowing indicates arachnoiditis " I've had weakness in my left leg, now tingling and occasional painful zing in my left foot is coming back, as well as saddle anesthesia numbness. I will find out more tomorrow. I understand arachnoiditis can be difficult to diagnose. I keep hearing that about every thing lately. I'm sorry you have dealt with so much for so long. I am thinking I could still have increasing problems with my hearing and sight.

[Blue2703 in reply to Quiltergirl]

Hi quiltergirl,

Just wondering how you're going?

Just yesterday I felt like I had water soak through my pants to my left inner thigh but when I went to feel I was dry. Now I'm getting the same sensation constantly. Conducted a few Google search and here I am.

[Blue2703 in reply to Quiltergirl]

Sorry to add, do you remember what first symptoms you had?

[Quiltergirl in reply to Blue2703]

My first symptom was tingling nerve pain in my left foot. I have occasionally felt like I had water dripping down my left leg. It is one off the symptoms, probably better than pain. I'm on gabapentin and cymbalta for the nerve pain. It helps a little.

[maemoore]

It is such a relief to find an answer. What are they giving you for it?

[Quiltergirl]

Update - My physical medicine rehabilitation doctor called my 2 days ago. He showed my MRI to all the spine clinic neurosurgeons and a neurologists he is part of. "No treatment or surgery indicated at this time." I have an EMG scheduled in a month for my neck and upper extremities , he has added the lower extremities, then reevaluate . Yes my whole spine is a mess. He told me to walk, use treadmill or exercise bike, keep moving. He will just treat symptoms , if the pain gets too bad "we could look at a spinal cord simulator ". My physical therapist told me to continue to do gentle stretching. I am at the 3 month mark where the damaged arachnoiditis nerves can clump and adhere. That is what will cause more pain. My blood work has been good, no indication of inflammation. It is possible I won't get any worse , but also equally possible it could get much worse. Like bacterial meningitis , no one really knows ! God does, and I know he hears our prayers.

[jimbrophy]

I have it 40 years pain not bad until 2/3 years now in a mobile wheelchair

had 7 back ops they want to op again can't make my mind up to go or not

on a heavy dose of morphine it helps a bit

[Quiltergirl in reply to jimbrophy]

Oh my, 7 back surgeries! I've had 3 now and really don't want anymore due to bacterial meningitis from the 2nd one. My arachnoiditis is from the meningitis. The MRI that found it was to rule out osteomyelitis, now I think I would rather have that! I have tolerable low back and left foot pain so far. It sounds like your pain was tolerable for 37 years? We're you also able to walk until 3 years ago? I don't know how old you are, I'm 58. I hope you get all the right and correct information you need regarding more surgery. The things I've looked up about arachnoiditis are terrifying. Praying for you .

[jimbrophy in reply to Quiltergirl]

Hi

I am 76 I have it 40 years up to 3 years was able to manage with crutches drive meds helped.now in the mobile wheelchair on a lot more morphine helps a bit

know no cure soi don't google or rehearse it Pain dr wants to op again but i think after 7 i have to think .sorry in a lot of pain so i hope you can understand

[jimbrophy]

don't google it you will get you down i have lived with it over 40 years it doesn't get any better

[Blue2703]

What were your early signs on it?

I just started getting this sensation of cold water inside the inner thigh but when I went to check I was dry

[obriants]

My daughter, in her 40’s, has spinal arachnoiditis. She was in two very bad accidents as a teenager and they are back to haunt her. She has debilitating pain down one leg to the foot. She is now on a 12 week medical leave of absence. They are going to do the trial for a spinal cord stimulator within the next two weeks. Please pray for her. She is suffering a lot.