Just a note ahead of time: Its going to be a long one, since I am going to try and go back and recap how I have gotten here.
In 2008, I was told I had a Tarlov Cyst on my spinal cord according to an MRI. I had no idea what that was, and the neurosurgeon I went to told me that it was nothing to be concerned with, he thought it was more likely a disk problem somewhere. I had been having sciatic type pain going down one leg. Well since I am always curious, I decided to go home and search on the internet and see what a tarlov cyst could be.
I came across a forum called tarlovtalk, and signed up for an account on this forum. I read all of these horrible stories of people who thought that their pain was being caused by this supposed Tarlov cyst. There was a list of doctors that were recommended there, and since one was in my area I decided to go see him, just to see what he had to say. He recommended some tests, such as an EMG and a Myleogram, because he said with these tests he could determine if this was causing a problem.
So I went ahead with the tests, and when he gave me the results I was devestated. He told me this was indeed my problem, and that I needed to have surgery on my spinal cord. I was told that if I did not do this surgery, I would get worse and I could end up in a wheel chair. So after considering this horrible news, I decided to consent to the surgery in the beginning of 2009. I trusted him and believed him when he told me the test results. All I can say is anytime you have a test done, don't go on blind trust, ask to see the results yourself. I wish I had.
I went into surgery and it lasted about 5 or so hours. When I woke up I could not believe what was going on, and no one, not my surgeon or anyone from his office would address the concerns I had. You see I woke up with no feeling from the surgical site, which was the sacral area of my back all the way down in my whole right buttock, my whole saddle area (the complete area where you would touch sitting on a saddle, including the vaginal and anal area) and down the whole inside of my thigh, plus problems with my toes on that side working. I felt devestated. I had not been warned of anything like this. He did say I could end up with a little temporary numbness right where the incision was, which was a small 3 to 4 inch area (that made sense since he was cutting there), but I never had any idea that any of my bodily functions were controlled from this area. I guess I never really thought about it, but I thought all of that was controlled somewhere up in your body higher up, the same as your heart, lungs and such. I had lost all bladder function as well as all bowel function, and could not even feel my husbands touch anymore.
It was like being in a nightmare I could not wake up from. I was in the hospital for almost two weeks, and every day I complained and questioned to no avail. No one was willing to tell me what had happened or what they were going to do about it. My surgeon never even came to see me in almost 2 weeks. I seen him once when I was barely waking from the surgery, and then once again when I was being discharged. I was told there was no test to do, because it was just being caused by swelling. He totally ignored my complaints and did nothing about them other then to prescribe me medications, for pain, muscle spasms and steroids.
So I was sent home with no answers, no feeling and no bodily functions. I was so depressed I did not know what to do. Why did he not tell me this could happen? Had he told me of these risks I would have lived with the sciatic pain, which was no where near the level of pain I was in now from nerves and muscles that did not work anymore. It has taken me this long to start telling of the pain and suffering I go through on a daily basis. I have had to learn to live a new life, and one I am not happy with most of the time.
Through this blog, I will go through what my life is like, which has gotten worse not better. This surgery has destroyed who I was, and has taken the core of who I am.
When I first came home from the hospital, I was to have home physical therapy. Well this would have been nice if the therapist could contact my surgeon and find out what needed to be done, but just like me she was ignored, so we finally gave up on that idea, other than walking around the block. That was the physical therapy I received. I tried for about 3 weeks to call my doctor to no avail. Finally in desperation and fear I called the on call neurosurgeon at the hospital I had the surgery. He finally ordered an MRI and got a hold of my surgeons office. I still had not talked to the surgeon himself. His assistant or someone there, just prescribed me more steroids. I had the MRI and nothing showed, as it was nerves that were damaged and that could not be seen there.
I finally seen my surgeon over a month after being released from the hospital, and still he did nothing. No tests or anything, yet I was in so much pain, and I was so afraid, but nothing was done. I felt like I did not exist to him. I seen him two more times, the last one over 5 months after surgery and still he did nothing and ignored the damage that was done to me. I still to this day have no idea what he did to me, but I will never be the same.
I am thankful that there was one doctor at the hospital that treated me for pneumonia while I was there in the hospital, that told me no matter what you do, when you leave here go straight to a urologist. I took his advice and had tests done right away, and they showed there were no nerve signals going to my bladder. It was paralyzed. From the moment I woke up from surgery I have not been able to urinate, and I have to use straight catheters, which before I had surgery I had no idea such a thing even existed, as I had never ever had any type of urinary or bowel problems, other then occasional constipation from pain medication. I also have to use rubber gloves and my fingers to empty my bowels, and I have no function there as well. The good days are when I can empty my bowels that way, the bad days are when they just lose control all together and I am covered in feces. It is humiliating and disgusting, and on those days I feel like it would have been easier to just die.
Will continue tomorrow, as I am tiring for now.
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