----- Original Message -----

From: rickwhoo

To: Arachnoiditis@yahoogroups.com

Sent: Saturday, February 14, 2009 2:42 PM

Subject: [Arachnoiditis] What do you take

I live in PA and I suffer with arachnoiditis. I have to go to another
state to get my meds. Anyone know of a doctor in northeast PA that
understands this disease?

----- Original Message -----

From: Brianna Passmore

To: Arachnoiditis@yahoogroups.com

Sent: Saturday, January 10, 2009 11:28 AM

Subject: Re: [Arachnoiditis] I wanna talk with ppl with arachnoiditis

Hi Melissa, Thanks for your e-mail. My husband has had Arachnoiditis for 4 years, back problems for 6 years. I am finding now that I HAVE to stay home to look after him, the kids and the house, I was working but the company I worked for went bankrupt, which was good cause it was the middle of summer and our boys were running wild and Daddy can't chase them, go out to play with them, tolerate sun long enough to take them anywhere plus he was having a hard time staying awake. I would get txt messages saying "I just woke up dunno where kids are" ..... not good !! We live in Canada, little town along lake huron right in the middle of south-western Ontario. Mike (husband) and I were high school sweet hearts, bought a house, got pregnant, got married all in less then a year lol after our second son was a year old Mike was home from work cause his back was in such pain and cyatic nerve was pinched so bad walking was very difficult. We were advised by a top surgeon in Owen Sound, to have surgery on the herniated disc in Mikes lower spine, being 22 and him 24 (years old)at the time, we trusted the doc. Aug. 29th 2003 was the first surgery, Feb 5th 2004 was the second surgery cause the pain didn't go away it just got worse, and with another MRI showing another herniated disc, the same surgeon told us surgery was our only hope to Mike going back to work to support his young family. We later found out after the second surgery that, that MRI did NOT show another herniated disc it was only scar tissue and should have been left alone!! When Mike was waking up from the second surgery he was in terrible pain, pain that he has never experienced before (and he has had his thumb crunched by a wood splitter, minor surgery on his hand with no freezing trying to find a small piece of steel that chipped off the hammer he was using, he WAS a hard working man) He had such a bad migraine, stomache upset from it, terribly moody, screaming and crying in pain!! The surgeon would not come see him till the next day, we asked what happend? why was he STILL in so much pain?, we were told thats what happens after you have back surgery ..... when we got all reports and records of the surgery it showed that the doc had "knicked" the dura tube and meninges, thats why Mike had a drainage tube next to the incission, pouring out spinal fluids soaking the bed many times in a very short amount of time. A day or two after leaving the hospital, after the second surgery, Mikes incission began looking very red and puffy, the very next day is incission had blown wide open with infection, he spent the next 3 months making daily trips to the hospital to have it cleaned and re-packed, it had to heel from the inside out!! Also, another strike against us, Mike had menengitis twice before he was 8 months old which means countless spinal taps (the evil surgeon was told about the spinal taps) To find the Arachnoiditis, Mike had an MRI where they inject that dye (can't remember name) but its the one they believe may cause arach. Our kids are now 8 and 6, our youngest only knows daddy as he is now but, our oldest knew daddy before he was hurt and has had a hard time dealing with it, very defensive, aggressive, and basically just moody!! We are involved with the childrens aid society to get help for both the boys in dealing with OUR life. We thought at one time that Mike had MS, its still not ruled out, mike does have 6 leissions in his brain, plus 2 on his lower spine that were found at the same time as the arach. Mike also has degenerative disc disease, at the time of finding the arach only 2 discs in his lower spine were deteriated but now there are 4 plus 4 in his neck and his bottom 4 tail bones are deteriated and I believe he has 2 leissions in his neck as well. Mike has lost most of the feeling, motor skills on his right side of his body, meaning for example Mike has many tattoos, tattooing on his left side hurts like hell, but tattooing on the right side he barely feels. Also if you ask him to lift his toes off the ground on his right foot, 3 out of 5 times he can't do it but the left side is no problem. Hand-eye cordination is off on his right side, drops things on the floor he thought was on the table. Poor circulation, numbness, tingling sensations, "water running down his legs", uncontrolable twitches, vibrations, muscle spasms, "charlie horse" almost breaking bones, eye pains (stabbing, sand paper, vision fades, blackouts, "worp tunnel") problems with bladder (always feel like going, gotta go but nothin happens) problems with bowels, diareah, constipation(meds. possibly) liver pains, kidney pains, stomache pains, upset, vomiting, nausea, sometimes can't eat sometimes can't stop, troubles with speach, forgetting words, mumbles, slurs, drools. The worst for him is the skin leissions, fluid filled, red, puffy, sore, pipple like leissions, could be in-grown hairs, but Mike has a hard time fighting infections and takes forever to heal. The nasty looking things appear on the top of his head, back of his neck, on his face, belly, pelvis, back, legs, butt .... wherever there is hair really. We have had so many docs tell us "I don't know" "can't help you" "its all in your head" "your doing this to your self (skin leissions)" his own family doc tried to say he was faking it cause he was addicted to the meds or he was selling them!! Finally we are getting some help, docs are taking us seriously, trying to help yay!! Mike will be 30 in Jan, I'll be 28 in Mar, also celebrating 13 years together that month and 9 years marriage the next month, still as strong as ever or stubborn ... which ever lol we started a little hobby together to keep our minds off 'things' we sell snakes and lizards and stuff out of our home, bunnies, guinea pigs, rats and mice for food or pet, crickets and worms and anything else anyone wants or needs. Great learning experience for the kids (of course they are totally involved) we are having fun, smiling once again :) Anyway thats basically all about us and our fun little adventures with the shitty hand of every deal .... lol we may not get too far with the cards life has dealt to us but were playing them just the same, were still in it to win it!! Best of Luck to you and your family!! Mike&Brianna --- On Thu, 11/20/08, MELISSA HARNER <melly0@...> wrote: From: MELISSA HARNER <melly0@...> Subject: Re: [Arachnoiditis] I wanna talk with ppl with arachnoiditis To: Arachnoiditis@yahoogroups.com Received: Thursday, November 20, 2008, 2:47 PM Hi Brianna,   I have been diagnosed witharachoiditis for 8 years, yes life is difficult.  I have had 4 surgeries, from the initial lower lumbar surgery in 2001 laminectomy, fusion, spinal cord stimulator in 2005 and a revision of the that stimulator in 2006.  I have also had the epidural injections, without any luck to trying to burn the nerves in 2007, without any relief.  I know it is difficult to function and people do not understand your life unless they have experienced it personally.  Well, I am at the point of just going to pain management every month with a host of medications I take daily to help function, but this is about as good as it gets.  Feel free to email me.   You are not alone.  Where are you and your husband located?  Melissa ----- Original Message ----- From: Brianna To: Arachnoiditis@ yahoogroups. com Sent: Monday, November 03, 2008 3:02 PM Subject: [Arachnoiditis] I wanna talk with ppl with arachnoiditis Hi, My name is Brianna, my husband has had arachnoiditis for 4 years. I want to talk with other ppl with this disease to see what life is like for others. Life sucks for us and we feel totally alone, no one around our area knows anything about this disease. thx Brianna

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