It has been two years and three months since I had surgery for Cauda Equina Syndrome. I’m about as good as I’m going to get, and it really doesn’t seem like I’ve come that far, but I have. I learned to walk again, and still struggle to do so every day. I mourned the loss of my body, which I learned everyone does; not only is Cauda Equina Syndrome a physically debilitating syndrome, it is mentally challenging as well.
My husband and I fought in the beginning, as the stress levels were through the roof. We are also having financial difficulties, as I cannot hold down any kind of job as of yet. I also don’t qualify for any kind of aid. I cannot afford pain management because my insurance did not cover any of the Dr.’s, and we are struggling as it is. I cannot afford to pay $250.00 a month, and sadly this is the only Dr I am left with to see. Nobody else can do anything for me, and quite frankly there is nothing more they can do.
Every single day is a struggle, from the time I open my eyes, until the time I go to bed and I really do nothing at all, but sit and look pretty. Only other’s with Cauda Equina Syndrome would understand how sarcastic I’m being about the looking pretty part….
For the most part, my recovery has been on my own. It has been quite an accomplishment and I have come a long way, it’s a shame that the medical community wasn’t a big contribution in this feat, but the Dr.'s that I have encountered seem to be afraid of the unknown.
I can say that my first primary Dr was amazing and I was very lucky to have him when I needed help the most. I appreciated his honesty. He told me he knew what Cauda Equina Syndrome is, but didn’t know what to really do for me. I saw him a lot, which was right after my surgery. So that was a good thing. Although he didn’t know what to do, he certainly pointed me in the right direction, and I at least felt secure because I seemed to have had a Dr that had interest in my well being.
I also went to physical therapy and swung from the ceiling, while I learned exercises to stretch and strengthen my muscles. I now realize I was very lucky to have a good team in the beginning, because my aftercare has been less than desirable. The physical therapy was good as well, but then the insurance no longer covered them or my Dr, and my second year of recovery was on my own.
The next primary Dr that I found could careless. She did not know what Cauda Equina Syndrome was, nor did she care. She told me it was some kind of “bad lumbar.” She refilled my blood pressure medicine, and that was all she was good for. I never went back to her again. It’s a shame too, because I was beginning to go into a depression. I had asked about seeing someone to talk with, but nobody ever followed through, and I let it go, because I was getting used to nobody knowing what to do.
Well, if you have Cauda Equina Syndrome, don’t do that. If you are feeling depressed or suicidal, call 911 or emergency services in your area. You can also contact the suicide hotline at 1-800-273-8255. Get help, it will get better. You may be mourning the loss of your body as you once knew it, this is a natural process. I lost my first husband, and oddly enough, as I was lying in my bed feeling sorry for myself, I connected the dots, and realized what I was doing.
I knew I was feeling sorry for myself, and lashing out at all those around me. I knew what was going on, but I could not control it. The thoughts of “what and how am I going to live like this” became overwhelming. I attempted suicide. I chose to take the easy way out, luckily my husband found me. I'm here today to show you there is hope and it does get better.
I know it was a selfish act, and there are people worse off than I. I also contribute this to the quality of care that I’ve had, if you can even call it that. I have since taken my life back, I am now in control of my destiny with Cauda Equina Syndrome. I feel as though now I am a force to be reckoned with. I have decided that if Dr.'s don't know about what I have, then they'll just have to learn about it, and that's what my main goal in life is now.
I feel like the Dr.’s have just shoved me off since the surgery. I’m all alone in this big world that will swallow you up and spit you out if it could. My friend’s are gone, and it’s not like I’m running out anywhere to make new one’s. Half the time I dread just having to get up and getting myself a glass of water.
I recall when my feet went on fire the second month after my surgery. Oh my God!! I had absolutely no idea that your body could even turn on you like that!! I went and saw my surgeon, and they put me on Gabapentin. I also started describing all of the weird feelings that I was having, and he laughed and told me that I was going to have a lot of strange feelings. Well, those feelings are nothing to laugh about.
If you would like to know some of what I feel, just go sit on your toilet until your legs go numb. Then stand up and try to walk. When I walk, the muscles in my legs feel like rubber bands that just want to snap. I’m constantly stretching them when I’m sitting down or laying in bed, they feel like they need that. It is also very tiring. I feel like I’m never at rest.
My right thigh is still very numb and still has a big patch of swelling that nobody knows how to get rid of or even what it is. I just happened to wake up from surgery with swelling that nobody can get rid of. My body slowly expels it. I throw up every so often. I figure it’s poison from the swelling leaving my body.
In fact, since the surgery I don’t have an appetite anymore. I force feed myself. I’ve been eating healthy, fruits and vegetables. Actually, I eat whatever I want and just take advantage of the times I get hungry. Through speaking with a professional in a Cauda Equina Syndrome group, I learned (what I long suspected) that the stomach muscles can get paralyzed and when you have constipation, your stomach feels full, because that’s what I have been fighting and feeling for the last two years since the surgery.
Both of my feet are numb. My right foot has foot drop and flops around if I don’t walk with a brace. I always feel like I have a “wedgie,” and am constantly trying to pull something out, that isn’t in. Sometimes my feet and legs itch, but when I scratch it the itch is deeper. It isn’t on the surface of my skin. I feel like there are bugs crawling on my feet, but it’s just the nerve damage. I have pins and needles, and sometimes I feel it in my vagina. Sometimes sex is great, and sometimes it just isn’t going to happen. Taking a shower isn’t relaxing and refreshing anymore. It is a task. I have to work my way up to it, and it’s tiring. I cannot sit for long periods or my spine starts throbbing and swelling up around my tail bone, I lay down a lot. I also seem to need to take a nap every day. I appear lazy and I feel lazy, but there is nothing that I can do about it.
I have an amazing husband. I’m lucky he is still around.
Cauda Equina Syndrome doesn’t just affect the person suffering, it effects the whole family. We fight. When I say fight, I mean yelling. It’s stressful, we only have each other. This is our way of dealing with it. It may not seem normal to others, but again, what is normal? I thought normal was going to a Dr and getting treated, but that hasn’t happened yet. I have had no help. Every day I struggle as soon as I open my eyes and start the day. I am suffering, yet I look pretty.
My husband always tells me that I look beautiful. That’s nice to know, because I sure don’t feel it. It’s been raining out for the last couple of days, compile all of the feelings up top, and now add in the swelling in my ankles, and the feeling of a vice squeezing your ankles till they feel like they’re just going to pop. I’ve had this feeling all week. My feet have felt like rubber all week as well. I can’t wait till it clears up, but I continue to smile. Look’s are very deceiving.
I have become proactive in my care. I joined the Cauda Equina Foundation, started by Amanda Proctor, and I volunteer. This is what keeps me sane. If you have been diagnosed with Cauda Equina Syndrome, I implore you to join a group. The #CEFCommunity is where I have received the most support and knowledge about my condition, it is what keeps me going.
You too can volunteer, we can always use more help! I'm having fun wearing my CES swag!! Get your groove on and check out our different shirt designs. When I say designs, I mean shirt styles. Here are the tank tops. The prints are different, and are only available at certain times. Join our CEFCommunity and sign up for our newsletter, you can find the link to our apparel. All proceeds go to the foundation towards research and education.
This is now my mission too. I believe in the goals of the foundation, which is to help educate the Dr.’s to improve the quality of life and care for myself and other’s that have and are being diagnosed with Cauda Equina Syndrome. If we need to educate the Dr.’s and hospitals on what the red flag symptoms of Cauda Equina Syndrome are, then that’s what I intend to do. I will not give up, I gave up for way too long.
If you are feeling depressed or suicidal, call 911 or emergency services in your area, you can also contact the suicide hotline at 1-800-273-8255 or by web at https://suicidepreventionlifeline.org
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