The Life of Cauda Equina.....

OK.......I have decided to start a Blog....my very first one...ta daaaaaaaaaaaaaaaa...I have been handed a test in my life and I need information, support, an outlet...you call it what you want ....I need to discuss this and say what is on my mind about it.....Welcome to the world of Cauda Equina Syndrome.

Lets start this adventure with my name and my story....I am Lynn ....I live in a very very rural town in West Virginia...27 students in the graduating class last year...I kid you not....I live a quiet life with my husband, my dogs, and my grandchildren and their father at the end of my lane. We live in a small cedar home on a lake in the woods....Life has been very good to me. I am 55 years old, married for 39 years to a coal miner, my soul mate and best friend. I have one son, a coal miner who is presently going thru a divorce (I only add this because I feel that stress has a bearing on this wonderful syndrome) and is the father of two boys, 10 and 12.

I am the proud half of a Therapy Dog Team...I have two Rottweilers. Sativa my girl is a licensed therapy dog and until three years ago we visited nursing homes on a regular basis and were also active members of Hospice of Garrett County Maryland. Then I have my "little boy dog" Walker...he was / is my dream dog. I had plans to show him then I fell and broke my left leg in three places and snapped my ankle off....so we wasted two years learning to walk again....now this.. Cauda Equina Syndrome....but life goes on and so do we!

My life with this syndrome began on January 24, 2010. I woke up and could not walk. I was in horrible pain...the worse pain I have ever endured. I was sure I had slept wrong when I woke up and could not move...my husband helped me out of bed and my foot was not there....it was numb and dragging....numb but hurting at the same time, kind of like it was asleep and I could not lift it...I had never heard of drop foot. Well truth is I am not the type of person that runs to the doctors at the drop of a hat...it is not on my list of fun things to do! I babied my back as I had back pain with ice for a few days with ice and ate any kind of pain pill I had available to me for a day or two. I finally had to admit that something was wrong and called my doctor. The next day I went to the Doctors and he took one look at me and said something is really wrong with you huh? Well yeahhhhhhhhh....he did a few muscle tone test and ordered a MRI never mentioning the name Cauda Equina Syndrome but thinking something was going on with the disc and we needed to find out immediately. Well that was Friday, on Monday I had the MRI, Tuesday he called me and told me that I needed to see a Neurologist ASAP and he recommended a Doctor at John Hopkins University Hospital in Baltimore Maryland. Wednesday Dr. Nair office called me and scheduled an appointment for me on Friday. I can remember thinking "wow..that's fast...maybe he can fix me up and my legs won't hurt anymore".

Friday Feb 5, 2010 was a history making day in my opinion and also to those on the East Coast...we were in the beginning of a history making blizzard..Baltimore and surrounding area was brought to a stop.....I remember we called the Dr on the way down to make sure he would still be in his office and they were going to wait for us because we were driving so far. Well we were at the office at 1:30 pm and after looking at my MRI and ordering some more xrays...and testing this and questioning that....I was on the operating table about 6-7 hours later. Dr. Nair wasted no time. I have never been treated so well by a doctor..except mine here at home. I feel very blessed to have what I feel is good medical care, the problem is no one knows much about this syndrome because it is so rare and the answers they do have leave you wanting more information and guarantees...and with this there is no certainties.

So I have my surgery and am in the hospital for 4 days...my cousin Roxy got snowed in with me but that is a whole different story and again I am blessed by having a wonderful family, she never left my side! I then went to my other cousins house (Roxys sisters house) and took over her bedroom....I could not get home...the snow was too deep and I had 17 staples in my back. I was walking with a walker and I was getting up to go to the bathroom by myself but other than that I was pretty well taken care of by Vanna and her family. I remember sitting there looking out of her bedroom window thinking that I could not wait until this was over and I was home with my dogs and doing my thing...taking care of my family and cooking and cleaning ....my life. I never dreamed that I would be dealing with issues for what looks like could be forever!

Finally I was transported by my other cousin, Nathan and his wife...(...lol...this is really beginning to sound like a West Virginia thing here....Honestly my family is from Maryland...I moved here by choice!) to my mothers house...I still could not get back on the mountain to my husband and my family...I was stuck in the snow literally!

While I was at my Mothers I noticed that I was having problems with numbness still and I seemed to be peeing myself even more than usual. I had been having incontinence problems for awhile and had a cystoscope this past October. My complaints were incontinence and frequent bladder infections. I also could not pee...if that makes sense...I did not get the urge to pee but when I did I better be there or an accident was going to happen.....(bless you depends!).


The results of the cystoscope was that I have a under active bladder...not sure why....take this (macrodantin Sp?) as a maintenance antibiotic and that should keep the infections under control....ok...ummmmmmmmm why is my bladder under active?....why does it not empty all the way? These questions were like a million dollar question...you never really get the answer...it just is. As I look back now I think why didn't my urologist connect this with nerve damage...has he never seen an under active bladder before and questioning WHY or does he just hand out maintenance antibiotics? I remember filling out the papers for my medical history...I do not have copies of them but I can guarantee you that if it asked about leg pain or arthritis I would have checked yes...Hmmmmmmmmmmm that's 2 red flags of Cauda Equina....I just have a hard time understanding why someone did not start to put the signs together.

My life has changed in so many ways that it is not funny. I am now taking medicine all the time, I have pain continuously, I don't sleep at night, I walk with a cane and the list goes on.

I wonder how many people are out there with this going on...I have a zillion questions...it is just craziness.

I am hoping with this blog to learn from others and share my story or journey as I like to think of it....I know I will come thru this being a better person...and I know I can always look around and see someone in worse shape than I am in....this is what keeps me going...that and my family and my belief in God. I am thankful for what I have....scared of what might be...and learning to accept....this my friends is a indeed a journey.

More tomorrow....peace to you all.