Please welcome Kay of the UK. Her email address is teambiscuit@hotmail.com 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!"
Friday, February 5, 2010
Please welcome Michael
Please Michael Nees of Minnesota. Michael welcomes your email to michael_nees@yahoo.com
Michael has Failed Back Surgery Syndrome and possible Arachnoiditis.
Michael has Failed Back Surgery Syndrome and possible Arachnoiditis.
Welcome Tokunbo
Please wecome Tokunbo Adeniji of Maryland. Tokunbo's email address is ozeyi@aol.com and your email is welcome.
Wecome Donald Heaney
Please wecome Donald Heaney of Ireland. Donald's email address is donalheaney@yahoo.co.uk 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.
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 tpizoopaula@mac.com 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?"
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 dlcole2828@aol.com.
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"
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 paininzeeback@att.net. She welcomes your email.
Leah would like to suggest a provider in Georgia: Shepherd Spinal Center - Pain Institute.
Leah would like to suggest a provider in Georgia: Shepherd Spinal Center - Pain Institute.
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