Zen's Aviary...
Home of the Parrot-Loving, Slightly Neurotic,

Jewelry Designing, Enigmatic Pagan Chick!

all medical, all the time!

this entry will be a medical history update: for those of you squeeved out by medical issues you may want to skip this one!

i developed anorexia when i was 14. for three years i starved, puked, exercised my body so that i remained at a steady 85 pounds (i was 5'3")....my senior year of high school my weight dropped to 72 pounds and i was hospitalized and put on hyperalimentation (a catheter is placed in the large vein going into the heart where you receive tpn)...i got a staph infection and a collapsed lung from the hyperal so they had to take me off of it. i spent 9 months in-patient getting treatment for my anorexia.

when i was 19 i went on birth control pills. within two months i was in the hospital with massive deep vein thrombosis (dvt's)...they were in my leg veins, femoral veins, all thru my abdominal section....it was horrifying and frightening!! they couldn't get the clots to get better even on blood thinners. so i had to have surgery: they plicated my vena cava so that the clots couldn't go to my heart or lungs. i was discharged on massive doses on blood thinners but with no knowledge of how or why i had gotten these blood clots.

i also didn't realize this was only the beginning of my journey of a life long battle with pain. i was in and out of the hospital many times with more clots, phlebitis etc. the valves in my leg veins were completely destroyed hence my blood does not circulate properly which causes pain. all of the clots also caused nerve damage. so began my fight with chronic venous insufficiency and perihperal neuropathy.

in 1997, i was diagnosed with polycystic ovarian syndrome and endometriosis. i had hemmoraghic cysts the size of grapefruits on my ovaries and it was determined that both ovaries and my uterus would have to be removed. when they learned of my history of blood clots i was sent to a hemotologist to see if they could find out WHY i kept getting clots. it was then i was diagnosed as having Factor V Leiden which is a mutation of the factor V gene which causes a protein c deficiency and causes the body to clot too much...basically i had a hypercoaguability diseaes.

as i got older i started having more problems with my back and hips. three years ago i was diagnosed with degenerative disc disease, osteoarthritis and osteopenia. they believe these are directly related to the years of my eating disorder.

this began my search for a doctor who could "fix me"...i started with the vascular surgeons who basically told me the chronic venous insuffiecy (CVI) and peripheral neuropathy (PN) were chronic conditions that couldn't be fixed and would probably continue to get worse. he gave me support stockings that were supposed to help the circulation but basically the PN caused by severe nerve damage couldn't be fixed...i was given neurontin which was supposed to help with the knife stabbing pains i had in my legs. it really didn't help.

i went to a rheumatologist and an orthopedic guy for help with the degenerative disc disease (DDD) and the osteoarthritis and osteopenia. i was told that my body was falling apart due to many years of starvation and bulimia. i went to physical therapy for awhile but it didn't seem to help the pain.

they finally ended up sending me to a pain clinic that worked solely in anesthesia for pain control.

so began a year of receiving injections in my back...started with getting nerve blocks several times a week...they would work for approximately 24 hours then i'd be back at square one. by this time i was walking with aid of a cane. and i didn't sleep much. i wasn't working and i'd just lie on the couch and cry from the pain. the next step was radiofrequency injections which were supposed to deaden the nerves that were causing the PN...these did not work at all. we then moved on to alcohol ablation blocks that were also supposed to deaden the nerves. this worked for a couple of days but often on people these blocks last a year or more! so it was decided that these blocks were not having the intended relief.

it was back to my regular doctor who put me on oxycontin...i was on 80 mg 3xday. and this made a huge difference in my life! oh my gosh it was amazing how much of my life i began to get back. i was so excited and even went out and interviewed for a job which i got! the problem with oxycontin is that it is very strictly regulated and i had to pick up the script in person every 30 days. which i didn't have a problem with until...

my oxycontin script was due to run out on a sunday and i was supposed to pick up the new script first thing monday morning. i was to begin my new job that monday morning so wouldn't have been able to pick up the new script until monday evening. which would mean a full day of having no meds and starting a new job that day! i knew there was no way i could start a new job and not have the meds...i couldn't hardly move without the meds. but when i did have them i was functioning well.

anyway i called my doctor and explained the situation to her and asked if i could pick up the script on friday evening so i could make sure to have meds to start my new job. she got so angry at me for asking to fill the script early! i know that oxycontin is extremely closely regulated but by this time i had been on it for quite a long time and had never asked to pick up a script early....i couldn't believe she wouldn't work with me. i got upset with her and started crying...she got angry and dropped me as a patient!!

what a nightmare...she cut me off bascially with no meds at that point...and withdrawing from oxycontin is HELL ON EARTH! i ended up in the emergency room several times during the withdrawl process. i thought/wished i would die! at this point i decided even tho oxycontin worked well for me, i never wanted to take it again because i was terrified of the withdrawl process. needless to say i lost the job.

during this time i could barely move from the couch. i finally got the name from my insurance company of another pain clinic that had a lot more options that the first one i went to. by this time i was back using the cane again and barely functioning. the first thing they did was put me on morphine - not as strong as oxycontin (which i refused to take again) but it did give me some relief.

once i could function a bit better they researched other options with me based on what would be best for my lifestyle and age and health problems to get me the best pain relief. we decided that i would get a spinal cord neurostimulation system implanted.

a neurosurgeons performs a laminectomy where two holes are drilled into your spine and electrodes are implanted. leads go from the electrodes to a stimulator/battery pack which is implanted in your hip or abdominal area.

what happens is it provides neuralstimulation so that the nerves send a different signal to the brain. the stimulator provides this massaging tingling feeling in my back, hips, legs and abdominal area....and my brain now reads the signals as tingling instead of pain. i can also change the settings with a remote control device i hold over top the battery pack. it's AMAZING! six weeks after i had this implanted i was back at work full time!

but...somehow one of my leads has broken and is now hanging down inside my back which causes pressure and pain...and also now the stim isn't working correctly so i'm not getting pain relief from it. the surgery i am so anxiously awaiting is to get the lead replaced and fixed!!! i'm so frustrated by how long it's taking.

well, i hope this answers anyone's question regarding the spinal cord stim. stephanie, does this answer the questions you were wanting to know? if not just bop me an email and i will reply. i had several people asking to explain the stim system so thought i'd just do one entry here.

~zen (you didn't realize i was a bionic bird didya?) 0 little birdies chirped

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