Hi Everyone. I’m new to this wonderful site. Received an email from Vitali and have been encouraged and comforted to meet more folks and their loved ones trying to make a life IN SPITE of chronic pain.

I read Jana’s entries about her husbands experiences with Myelograms. I had my first AND LAST… in Oct.’03. It was terribly painful. I begged the doctor for even a little versed and he wouldn’t budge. WHY?!! The worst part was that the test only confirmed what we already knew WITHOUT the test!

Allow me to bore you for a moment, with a bit of MY STORY:
I was born with Spina Bifida which is a neuro-tube birth defect. But I was quite fortunate as a child and experienced much less complications than most children born with this. I walked, ran, attended school and was involved in everything from horseback riding to dirtbikes! I met the love of my life at the tender age of 16 and we were married. ANd then when I was 19, I defied the doctor’s predictions and had the first of our 3 daughters.

Unfortunately it was when I reached 30 that all “hell broke loose” I began having increasing pain in both legs from top to bottom. I went from Dr. to Dr. and received diagnosis such as “depressed housewife”…. “just wanting drugs”….”minor arthritis”..etc. I’m gonna do my best to keep this really short, so I’ll skip ahead a few years now. AFter more than 3 yrs. of increasing pain with nothing more than Tylenol, Motrin, or if the doc was feeling REALLY generous… “Tylenol 3″ (Yes, Jana… “bandaid on a heart attack”!)… finally through some miracle I met Dr. Molnar… the first Dr. to actually LISTEN to me! He NEVER treated me like a drug addict or a depressed housewife.He said “the first thing we have to do is to get you comfortable. THere’s no sense in you living another moment in pain with all of the potential treatments out there”. Back then we started with a low dose of Neurontin and some Oxycontin. ANd for the first time in years, I had some relief!! My family couldn’t belive the difference in my moods and attitudes. No more thoughts of suicide! I actually saw HOPE of actually “LIVING” life rather than just coasting along beside it! Next, Dr. M ordered a whole series of MRI’s and exrays and blood work.

Over the course of the next few years a lot would happen. In ’93 my left leg was amputated after more than 20 unsuccessful surgeries to scrape out a severe infection in the ankle bone (a.k.a.”osteomylitis”)… which the docs felt was a large source of my pain. The day after that surgery, the pathologist found that there was also a high level of Melanoma within the ankle. CANCER had been in there for God knows how long… and no one checked until Dr. M! A long stretch of rehab and treatments followed that and for a time, the pain level did improve. Bbut gradually it returned… and with a real vengeance! The Neurontin and Oxy. were like candy. So the Neurontin was increased tremendously and we added MS Contin, Baclofen, Wellbutrin and some M.S.I.R. (morphine sulphate immediate release). THe pain became bearable as long as I did not overdo it in any way. ANY slight change to my days can cause a terrible PAIN ATTACK which means 2-3 days in bed. A new series of MRI’s and exrays diagnosed more problems in ’99. As a result of the Spina Bifida, scar tissue formed around my spinal chord. This is called “Tethered Chord Syndrome”. Another common complication of Spina Bifida in adults is “Syringomyelia” which means that there are cysts…known as “Syrinx”… that form within the chord and fill with fluid. As they expand, they damage any nerves in their path…which then affects various body parts and functions. In Jan.’99 I had 2 surgeries on my lower back to attempt to decompress or release the tethered chord and to drain the cysts. The surgery was a disaster, infection almost killed me, and I spent 6 months in a rehab. facility. I did regain my ability to walk short distances there.

Now, it’s 2004. My spinal chord has “re-tethered” itself even worse than the first time. It is pulling my chord down much further into the spinal canal than it should be. I also have all new cysts within the chord as well as serious damage to the spine itself. 2 places in my neck and several in my lower spine are collapsing and crushing the chord. My pain level is barely managed with HIGH doses of 2 kinds of morphine as well as several other drugs. If my daily activities consist of anything more strenous than washing a few dishes or folding some laundry, then I have uncontrollable pain. Doctor’s in my hometown of Cincinnati told me there was NO ONE there that could offer me anything else. THey referred me to Cleveland Clinic and those docs there said they didn’t feel surgery was an option…wasn’t a high chance of success, but HIGH for complications, plus my risk of infection, etc. THey felt my only HOPE is intense rehab. to retain what mobility I have left for as long as I can. We recently moved to Phoenix where the Barrow Neurological Institute is located. I’m told that they are “The Best” there and so I have an upcoming appointment with them.

Depression is a constant battle these days. My life has changed SO drastically in the past few years! I’ve lost both my parents at the early age of 55, my health has declined, I lost a wonderful job because of it, I’m loosing my ability to walk, some of the use of my arms/hands, I have difficulty swallowing, I have CONSTANT urinary tract infections that make me very sick, AND my husband and I are both suffering from “Empty Nest Syndrome”!! So I believe that so much change can cause depression issues.

I can’t begin to tell you how much help it is to know there are others out there who “Get This”. I think you have to be a Chronic Pain Suffered OR love someone who is, in order to really grasp how all-consuming life with pain can be.

Sometimes for me, when the pain is really bad… it’s as if PAIN is all I can feel, hear, see, smell or taste. It’s like a very loud, constant SCREAM throughout my body. I know that my PAIN has had a negative impact on my ability to be a good mother, wife, daughter, sister and friend. THe PAIN rules your life. The PAIN makes the decisions of whether or not you go to the family picnic or the grocery store. The PAIN decides whether or not you take your kids to the amusement park or go to their softball game. The PAIN decides if you will sleep tonight or not… and for me, my pain even affects my appetite and ability to eat.

I AM TRYING to learn to rise above the pain… to take back the control in my life. I don’t like depending on pain meds. to keep me mobile… but if that’s what it takes to keep from just giving up and being in bed all the time, then I’ll do it. I’ve recently been thinking about the fact that PAIN “stold” a large portion of my life from me. Now, I have the chance for a whole new start… a new city, my girls have families of their own and live in 3 states, and for the first time in 23 yrs. my husband and I are ‘on our own” again. We should enjoy this time in our lives. My husband DESERVES to enjoy this time in his life!

So I’m trying some things I’ve never done before…some things I’ve wanted to do for years but didn’t have the courage. I’m going to be getting involved in a rehab. program that involves some real dedication and exercise in order to rebuild some of my muscles that have become so weak. I’m getting involved in some community projects. AND…something just FOR ME… I have (finally) found the nerve to enroll in some writing and literature courses. I’ve been writing since I was a child, I’ve always loved writing AND reading! I’ve been working on a few manuscripts for a few years and I have several other projects in mind. I’m even going to be taking an Art class!

All of these things are ALL NEW for me.Pain has tried lately to convince me that I’m fooling myself if I think I can “pull this off”… I’m not “able” to do these things. But that makes me more determined to PROVE PAIN WRONG!!

Thanks SO much to those of you who have “stuck it out” and actually read this thing to the end! ;o) It has been a bit of “therapy” for me to share this with you.

Thanks to all of you who contribute to make this site a “safe haven” to pain sufferers everywhere.
Blessings,

Denice