Sunday, February 7, 2010

Please welcome Jen

Please welcome Jennifer Singleton of Canada. Jennifer's email address is and she welcomes your email.

Jen says:

"Hi My name is Jennifer and I have had Arachnoiditis for 2 years maybe more. I was in a dramatic water skiing accident 12 years ago that resulted in a burst fracture of my L2,3,4 (I think) I know I have a multi level fusion, my hardware was taken out as it annoyed me and I broke it (I don't really sit still). I was 10 years doing fairly well I knew when I had to rest etc and I looked after myself I have a great support group and family. Gradually the pain became more intense in my lower spine and legs so my GP put me on a waiting list so I could see my surgeon (I live in Canada and the wait lists are long at least 6 months or more) during that time i was in another water skiing accident where i hyper extended my back at 35mph and all i heard was a large crunch, I was scared and sick. I went to hospital and they said my xray is so messed up they could not read it and to go back to see my surgeon as I had nothing unstable..So when I finally got in to see my surgeon I!
had so many things wrong I think i confused him and myself!..he did an MRI and said that I had advanced Osteoarthritis and he could do Facet joint injections to diagnose what worked. I worked with him for a year doing injections 3 times, when my pain became worse and i was crying and losing control. He said he had never seen me like that and so he believed me and he researched further finding i had a badly misaligned vertabrae on top of my fusion that he would need to fuse and he put me on the wait list for surgery (he moved me up to 3 months..that's fast for here he felt bad he missed this and it is more likely from my second accident) forward to month later.i am in emergency with severe leg and lower back pain that i cannot get under control...he comes in I tell him my leg pain is intense he shrugs his shoulders tells me my MRI is fine and he does not know what to do for me..he was very cold and kind of jumpy..he also told me that the vertabrae above my !
fusion was not a badly misaligned as he thought and he is rethinking t
he fusion (that made me laugh because in his office he was jumping around and could not believe it when he saw it and he gave me no other option but to fuse it) he was truly acting strange..but i know he is he said you have Arachnoiditis, I have known for 2 years (he had to tell me because at that point other ortho staff were looking at my MRI and attending to me because emerg thought i was a true spine emergency as i had bladder retention and leakage and my BP had spiked), I saw it on your first MRI..i said what??is that arachnophobia..what?? I was laughing..cause that's just me.. but he was not! not this time..he said it so fast and he would answer no questions just that it was inflamed and he would not operate or do anything for me and said..i am sending a neurologist down to see you..and that's when i was told..the neuro guy was great! he was kind and helpful and he gave me his card to come in any time and see him with any question I may have...and now that i have!
e been on researching i have lots! and I want my MRI..

I am disappointed in my doc (surgeon) he should have told me when he knew, it is my body, and he should have known that i would never have blamed him..the water skiing accidents are all on me! my fault 100%..he saved my life..anyone that looks at my pre surgery accident jumps up and down and says you should be in a chair..with a diaper..i looked up to him..and then this..I am left confused.

Thank you for allowing me this opportunity to tell my story! I sure appreciate i am new to all this..and i am a feisty little thing so..we will see what happens..I do not know what stage or level i am at..Thank you again Jen"

Friday, February 5, 2010

Joan of California

Please welcome Joan Dagostino of California. Joan has a diagnosis of spinal arachnoiditis and she welcomes your email. Her email address is

Joan says:

"I have spinal arachnoiditis diagnosed in 1986. On Jan. 16, 2010 and it was the most painful procedure I have ever had (mind you I have had several epidural blocks) The reason for this block was severe pain in legs and lower back. I have fallen 3 times last week. I am losing the strength in my legs to where I am now using a walker. I have no balance whatsoever. My legs are so very weak and I have began to notice about 2 months ago, and it seemed every week they were getting weaker and weaker. Just a few months ago I could do so much and now I cannot. WHAT IS GOING ON? And the pain is so severe, that I get no relief at all until I can take my meds. But, let me tell you I am so so scared because of legs have changed. Also my ankles were so swollen that my Dr. put me on Lasix and the swelling has gone down. But I don't know why all of a sudden I have such terrible changes with terrible pain."

Welcome Kay of UK

Please welcome Kay of the UK. Her email address is and she welcomes your email. Kay's mother has arachnoiditis and multipe sclerosis.

Kay says:

"My mother is a powerhouse - despite the pain, refuses to take any painkillers unless really bad! We always say (behind her back!) that by rights she should be at least wheelchair bound by now but her stubborness is keeping her going! Utterly respect how she tackles her conditions but I want to be able to offer more support as we get older and be able to provide feasible suggestions for things to try in treating it (given the NHS here in the UK couldn't care less). Would like to know more about developments in treatment and also tips from other people who have both these conditions on how they cope!

Also, when I spoke to my physio about her condition he immediately said he would never be able to do work that involved her spine directly as the MS made it too risky and would have to concentrate on keeping strength in her legs etc - she herself has been turned away by 2 different physios who refused to treat her because of the MS, let alone the arachnoiditis! Is this what other people have experienced? And can anyone recommend proactive physiotherapists in the UK who have experience in working with these conditions?

Many thanks for your time!"

Please welcome Michael

Please Michael Nees of Minnesota. Michael welcomes your email to

Michael has Failed Back Surgery Syndrome and possible Arachnoiditis.

Welcome Tokunbo

Please wecome Tokunbo Adeniji of Maryland. Tokunbo's email address is and your email is welcome.

Wecome Donald Heaney

Please wecome Donald Heaney of Ireland. Donald's email address is and he welcomes your email.

Donald says:

Surgery history:
1997 Microdiscectomy at L5/S1
2001 Spinal tumour (ependymoma) resection
2003 Further tumour resection
2004 Scar tissue and tumour removal
2009 Spinal decompression at L4/L5 and L5/S1

Most of my pain is neuropathic (burning, stinging) in the legs, presumably from arachnoiditis, epidural fibrosis. I would be interested in any innovative/experimental treatments.

Monday, February 1, 2010

Please email Paula of California

Please welcome Paula Ptacek of California. Paula's email address is and she would like to hear from you.

Paula says:

"wow! i hope someone can help me. had back surg (and myeogram) 15 yrs ago, laminectomy l2/3. long recovery but mostly ok until diagnosis of Multiple sclerosis 4 years ago. doing ok with betaseron treatment after initial blindness and semi-parqalysis. have had a lot of MRI's with contrast over the last 4 years for diagnosis, research and recurrent back problems, including 3 months of lower back pain radiating to right leg.. had an mri which demonstrated the spine of an 80 year old, sort of out of the blue compared to others==ie, severe spinal stenosis in 3 discs, bone spurs impinging on spinal column, and.... get ready for it..... arachnoiditis! i'm wondering how one 57 year old got so damn lucky! did i mention that I was a picu and nicu nurse for 30 years as well as a nursing instructor at UCLA and i don't know anything about most of this?
anyway, found an orthopod who knew he couldn't treat the ms or arachnoiditis, but felt he could remedy the rest of my back issues and provide me with some spinal stability. had surgery 6 weeks ago and all ok, except!!!! bursts of spasms/pain in one spot in my lower back when i least expect it, causing shouting out in pain and total body spasm. also, now have the appearance of a rash on my right buttock, which doesn't go away. now i don't know who to go to, what to do. ms doc says arach is not her thing, oorthopod is followwing the pain wondering about surgical issues. can anyone help? does any of this sound familiar?"

Donna asks you to email her please!

Please welcome Donna Cole of Missouri. Donna has Adhesive Arachnoiditis and would welcome your email at

Donna says:

"I currently have AA and suffer also from permenant nerve damage in my left leg, 2 bulging discs and I have a spinal fusion in the L5 S1 area. I have a spinal cord stimulator, but I don't use it because the vibration makes the pain more intense. I became addicted to prescription Methadone (pain meds), so in 05/09 I went into rehab and have been drug free and in pain ever since. Now I depend on God and sleep to get me through each day. It would be nice to communicate with someone who knows what it is like to walk in my shoes each day.

Thank you,

Donna Cole"

Welcome Leah in Georgia

Please welcome Leah Wright. Leah's email address is She welcomes your email.

Leah would like to suggest a provider in Georgia: Shepherd Spinal Center - Pain Institute.