I am new to this forum...so hi guys. I am a 38 year old mother of 3 teenagers, married and live in Australia. I wasn't sure where to post this thread, so here it is.
To make my story shortish...I injured my back at work in Jan 2004. For 2 years I was shoved around from doctor to specialist to another specialist etc. I have heard it all...go home and go to the gym and it will resolve itself...you need a fusion or disc replacement to get pain relief...epidural cortisone injections will cure you etc etc.
I had epidural cortisone injections, discograms (with contrast), myelograms (with Isovue contrast) and eventually a double Laminectomy at L4/L5 and L5/S1 in Feb 2006. I had started having bladder problems with extreme urgency...getting horrible UTI's and simply running to the toilet all day and night and that was the reason for the surgery (that is what my Orthopaedic surgeon said).
So...I had my surgery. I woke up from the anaesthetics and needed to urinate preety bad. I got myself to the toilet, but couldn't initiate urination. They had to put a catheter in (which I told them to take out the day after). I started being able to (with great difficulty) to urinate, but it was trickling out. It would take ages to initiate urination and when it finally came out...I could feel I was doing it. I also had no control of my bowel movements and would be standing in the shower with it running out (sorry for the graphic mental picture here).
I went home and still had problems with urination. I couldn't feel my right buttocks, my genital area and top of my right thigh. I was suffering terribly from myoclonic jerks in all of my body (they settled down a bit but I still have them to this day). The surgeon said the numbness was normal, so I continued trying to get better. 3 months post surgery I went for a follow-up with the Orthopaedic surgeon. I told her about the terrible vibration/shaking sensation I was getting in my legs and feet...that it would feel like I had wasps stinging me and my back, legs, feet and buttocks felt like they were on fire. She ordered a new MRI and told me everything looked good (yeah right!).
I had to move to a different town and that meant getting new doctors. I saw a new Neurologist (medico-legal called in by workers comp insurance company) and his exact words were "It is impossible for you to have the CES symptoms with an L4-S1 injury"...he was also so kind to tell me it was all in my head and my bladder/bowel/sexual dysfunction problems were just normal woman problems (he at this point viewed the MRI taken 3 months post surgery). I saw other specialists (some were medico-legal doctor). Eventually I saw my current Pain Management doctor. He is by profession an Anaesthetist and have been a pain management doctor for a long time and deal with a lot of people with pain like mine and see a lot of MRI's every day from people with pain like mine. I told him my story and he asked to see the MRI taken 3 months post surgery (that was the one my surgeon told me looked good and the one the Neurologist had looked at but couldn't find anything wrong with me). He looked at it for about 30 seconds...turned to me and said the dreaded words "You have Arachnoiditis. The nerve damage is evident from about L2/L3 and down. You have typical "empty thecal sac" syndrome and from what I can see...you are pretty much stuffed". Needless to say...I was devastated, because I knew exactly what Arachnoiditis was. I...of course...broke down, because even though he had said the dreaded A word to me...I think I knew all along I had it, but nobody wanted to listen to me and furthermore...refused to put the A word in my files (because in my case it is medically acquired). Somewhere along the line I have acquired this condition. It could be the cortisone that was injected into my spinal column...the contrast used during the discogram...the Isovue contrast used during the Myelogram...from the surgery or a combanition of all of them. My nerves from L2/L3 and down are sticking together like they were glued and are encased with scar tissue and inflamed. On the MRI it is quite clear (even my 13 year old would have been able to see it if he knew what to look for) that my spinal nerves are stuck to the the edge of my spinal column and that is why it is called "empty thecal sac" syndrome. It is extremely painful and will more than likely get worse. My nerves are damaged beyond repair and at this point in my life I am dealing with:
My anger comes from the fact that NOBODY told me about the risks of getting Arachnoiditis when having cortisone and contrast injected into my spine. My surgeon didn't tell me either about the risks before my surgery, so I at least could have made an informed decision based on facts. My Pain Management doctor says I will more than likely end up with a Spinal Cord Stimulator...an intrathecal morphine pump and maybe even wheelchair
- weakness in my legs and feet
- numbness in saddle area
- constant massive pain in my back, legs, feet, genital area, buttocks
- I have no reflex in my right ankle and diminished reflex in left ankle
- bladder problems
- bowel problems
- sexual dysfunction
- vibrating/shaking of my legs
- sleep problems
- sensation of walking on glass
- myoclonic jerks
- and heaps more
Will there ever be a cure for Cauda Equina Syndrome? Will there ever be a way where the spinal nerves can be repaired when you have Arachnoiditis or Adhesive Arachnoiditis? Will the medical profession ever fess up to the fact that they are giving this condition to people? Will there ever be more research into Cauda Equina Syndrome and Arachnoiditis?
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