Lately I have been having an extreme amount of pain in my feet, to where they seem to "Claw Up". It feels like the middle of my foot is tightening up and pulling my front part of my foot in, like a bird clawing on to a branch to sit. It is extremely painful.
Well last night I started having really bad pain at the bottom of my spinal cord, shooting down my leg, so I figured maybe if I got up and tried to stretch out it would go away. When I went to stand, it was like I did not even have a right leg, other then the pain that was surging down it. I could not stand and my right leg was totally unresponsive. I tried to go a few feet from the couch but was stuck, I was leaning against the wall screaming in pain, because I could not move. I could not stand on my leg and the pain was immense
Thankfully my husband woke and heard me yelling, and he came to see what was going on. He had to help me to the bathroom, where I could take a bath and hope to calm what ever it was that was going on with my leg. We both looked at my feet and noticed my right foot was red and purple, while my left foot looked totally normal. So while I waited for the bath to fill I took my pain meds and a muscle relaxer. I just sat on the toilet seat and waited hoping the pain would go away.
I finally took a bath, and sat in the hot water for half an hour and thankfully it started to subside. To say the least I need to make an appt. with the neurologist today to see what the heck is going on. I was only a bit worried about the pain in my feet since it was not getting worse, but it seems now it is going past that point. I am wondering if it has to due with more scar tissue forming on the nerves from my surgery. I am very scared at this point, and think I may be getting worse. It seems the damage never stops, it just keeps progressing. It makes me wonder how long will I be mobile before this just completely takes over me. I hate that this surgery has done this to me, and I hate having to live like this.
Thursday, May 27, 2010
Sunday, May 23, 2010
Continued from Yesterdays post
Once I was home and had seen my surgeon on several occasions, I was constantly being told that it would get better, I just had to be patient as nerves take time to heal. I could only hear these things so many times, where I finally came to the conclusion I was not getting any better. I would need to learn to live a new life.
Not only did I need to learn to live a new life, but so did my family. They had lost the Mother, Grandmother, Wife, Daughter and Sister I had been. I was gone and what was left was this damaged body that I could not learn to live with. I cannot tell you how many times I contemplated just ending it. Thinking that it would be so much easier to just end it for me and my family. I know that is the cowards way out, but it is so hard at times, and only living it would you understand.
I am very lucky I have a wonderful husband that is there for me. He is the one person that sees it all. He sees when I am curled up in pain and cannot sleep for days on end because it feels like I am being hit with a taser gun over and over. He has walked behind me when my bowels lose control, when myself and the floor, and everything around me is covered in feces. He silently and lovingly just cleans it up and tries to calm my tears and hysterics. I can honestly say that he has seen all of the worst things you can imagine, yet he is still here and for that I am thankful. Even though we have no intimate relationship anymore due to my having no feeling plus the fear of infections, yet he's still here, as he has stuck to his vows like no man I have ever seen. He really meant the part in sickness and in health.
The two people it is most difficult for are my Daughter and my Grand Daughter. Before this surgery I had watched my grand daughter 3 to 4 days a week from around 9 to 5 each one of those days. My daughter sees me and I walk and she does not understand that most of the damage I have suffered is invisible to the naked eye. If you see me, you will look at me and think "Well she looks fine to me" and I think its very hard for my daughter to get past that visual. She does not see me having to stick a straight catheter in my urethra each time to empty my bladder. Or putting on rubber gloves to pull out the feces. She does not see me when my bowels lose control and I am covered in feces, she does not see when I am in so much pain I want to die, she does not see I can only walk so far before I am in severe pain, as I avoid her on these days. These are the things I hide from her. I don't want to burden her with this, because I know how hard it is to live with.
I know it is also hard for my grand daughter She notices that her "Nana" is not around as much, that she does not climb on the jungle gym and go down the slides, she notices I don't run and chase her, she knows all the things I don't do anymore, but shes 3. Shes 3 and most likely she will never remember the Nana that I swore I would be before she was born, the one that took her somewhere special on most days I had her, so she would know the love I have for her. What she sees now is this other Nana, the one that cannot go to the park and run, the one that cannot pick her up for hugs and kisses because of the pain, the one she is lucky to see once every week or two and never by myself, because god forbid if something happens, she would be alone with me. This is who she will know and remember, not the woman who vowed to show her the love and playfulness that she deserved from a 45 year old Nana. She will never know that young woman.
Not only did I need to learn to live a new life, but so did my family. They had lost the Mother, Grandmother, Wife, Daughter and Sister I had been. I was gone and what was left was this damaged body that I could not learn to live with. I cannot tell you how many times I contemplated just ending it. Thinking that it would be so much easier to just end it for me and my family. I know that is the cowards way out, but it is so hard at times, and only living it would you understand.
I am very lucky I have a wonderful husband that is there for me. He is the one person that sees it all. He sees when I am curled up in pain and cannot sleep for days on end because it feels like I am being hit with a taser gun over and over. He has walked behind me when my bowels lose control, when myself and the floor, and everything around me is covered in feces. He silently and lovingly just cleans it up and tries to calm my tears and hysterics. I can honestly say that he has seen all of the worst things you can imagine, yet he is still here and for that I am thankful. Even though we have no intimate relationship anymore due to my having no feeling plus the fear of infections, yet he's still here, as he has stuck to his vows like no man I have ever seen. He really meant the part in sickness and in health.
The two people it is most difficult for are my Daughter and my Grand Daughter. Before this surgery I had watched my grand daughter 3 to 4 days a week from around 9 to 5 each one of those days. My daughter sees me and I walk and she does not understand that most of the damage I have suffered is invisible to the naked eye. If you see me, you will look at me and think "Well she looks fine to me" and I think its very hard for my daughter to get past that visual. She does not see me having to stick a straight catheter in my urethra each time to empty my bladder. Or putting on rubber gloves to pull out the feces. She does not see me when my bowels lose control and I am covered in feces, she does not see when I am in so much pain I want to die, she does not see I can only walk so far before I am in severe pain, as I avoid her on these days. These are the things I hide from her. I don't want to burden her with this, because I know how hard it is to live with.
I know it is also hard for my grand daughter She notices that her "Nana" is not around as much, that she does not climb on the jungle gym and go down the slides, she notices I don't run and chase her, she knows all the things I don't do anymore, but shes 3. Shes 3 and most likely she will never remember the Nana that I swore I would be before she was born, the one that took her somewhere special on most days I had her, so she would know the love I have for her. What she sees now is this other Nana, the one that cannot go to the park and run, the one that cannot pick her up for hugs and kisses because of the pain, the one she is lucky to see once every week or two and never by myself, because god forbid if something happens, she would be alone with me. This is who she will know and remember, not the woman who vowed to show her the love and playfulness that she deserved from a 45 year old Nana. She will never know that young woman.
Friday, May 21, 2010
Its Tough being Tough
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.
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.
Thursday, May 20, 2010
Trying to live with CES ( Cauda Equina Syndrome)
I want to warn, that this blog will be very open and honest. At times there will be information that is very graphic and not pleasant, but its real and its my life. Its what I live with on a day to day basis. There are ups and downs but more downs then ups.
Cauda Equina Syndrome is an invisble thing most times, and most people will look at you and think you are normal, they dont see the paralysis inside you, how your bodily functions are gone, how the core of you is gone, and how much you cannot feel. I am going to be as forthcoming as I can so you can understand.
You may walk by me and I look normal to you. I am not. My body is not normal, therefore neither is my mind. Its a hard balance trying to keep them both working properly just so you can survive. It has taken me along time to start this blog, because of the humiliation, the pain, and the loss I have had to come to grips with.
In the following posts I will get more into what has happened to me, and why it is so hard to live with, but for now I took the big step in starting this blog, and hopefully a start in the healing of my mind, since I have no control over healing within my body, but that is likely to never happen. You see I have been permanently changed forever, with the cut of a scalpel.
Cauda Equina Syndrome is an invisble thing most times, and most people will look at you and think you are normal, they dont see the paralysis inside you, how your bodily functions are gone, how the core of you is gone, and how much you cannot feel. I am going to be as forthcoming as I can so you can understand.
You may walk by me and I look normal to you. I am not. My body is not normal, therefore neither is my mind. Its a hard balance trying to keep them both working properly just so you can survive. It has taken me along time to start this blog, because of the humiliation, the pain, and the loss I have had to come to grips with.
In the following posts I will get more into what has happened to me, and why it is so hard to live with, but for now I took the big step in starting this blog, and hopefully a start in the healing of my mind, since I have no control over healing within my body, but that is likely to never happen. You see I have been permanently changed forever, with the cut of a scalpel.
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