Tag: chronic pain

answers about Cauda Equina Syndrome

by Midnight Demon, posted in cauda equina syndrome, CES, chronic physical pain

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***Material on this Website is provided for informational purposes only. It is not a substitute for medical care, rehabilitation, educational consultation, or legal consultation. This Website contains general information which may or may not apply to individuals. This Website can not and does not address each individual’s situation and needs. I encourage all persons with chronic illness, their family members and concerned parties to seek professional advice for any specific questions and concerns. I have made every effort to insure that content is accurate, correct and current and am not liable for any unintentional errors. Links to other Websites and contacts have been carefully chosen, but do not imply endorsement and I am not responsible or liable for their information and contents. Under no circumstances, shall the authors and publishers be liable under any theory of recovery for any damages arising out of or in any manner connected with the use of information, services, or documents from the site.***

The information in midnightdemon is not intended to substitute for medical professional advice but is to be used only as an aid in understanding this condition. This site is not maintained by physicians. No medical decision should be made based on information in this site. A physician should always be consulted for any health problem or medical condition. This site is a compilation of CES patients’ thoughts, ideas and discussions, which we hope you will find useful, but it is not medical advice.

My doctor is an idiot at times, especially when it comes to treating CES. He thinks that because I have no back pain, I should be ok. What he doesn’t realize is the damage is in my foot/ankle and that is what is causing me the most pain.

WHAT IS CES?

The syndrome arises through nerve damage to the cauda equina, the horse’s tail of nerves that come after the spinal cord.

There is a specific pattern:
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Severe pain in radicular (nerve root) pattern: back, buttocks, perineum(saddle area), genitalia, thighs, legs.

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Loss of sensation: often tingling or numbness in the saddle area.

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Weakness: in legs, often asymmetric (one side)

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Bladder/bowel/sexual dysfunction: incontinence / retention of urine; incontinence of feces; impotence/loss of ejaculation or orgasm

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Loss of reflexes: knee/ankle reflexes may be diminished, as may anal and bulbocavernosus. (a muscle of the perineum, the area between the anus and the genitals)

Any of these symptoms arising suddenly is a medical emergency and should be treated as such. These are the red flags of CES. You do not need ALL of these symptoms to have a case of CES. Any compression of the Cauda Equina nerves (shown through an MRI) IS CES!

I have had CES, Cauda Equina Syndrome, for the past 12.5 years. In the first few months it was difficult. I didn’t have supportive people in my life I could go to because there was no one I could find that knew what CES was. Recovery was slow. Painfully slow. It took almost a week till I was able to move the toes on my foot after surgery. It took almost three months to learn to walk with just a cane. Luckily the first go round did not affect my bowels or bladder. I had some retention of the bladder but this was thought to stem from my use of opioid medication. My surgery was at the L4/L5 level on the left side.

My second surgery (yes you can get CES twice) was at the L2/L3 level and it really caused me to become disabled five years later. At first my left leg was affected and still is. I still get nerve pain in my thigh at times, especially if I sit too long. My ankle/foot is another matter.

When I first got CES, I fell and sprained my left ankle while it was numb. Because I had no sensation in my foot/ankle I didn’t realize the extent of the damage until feeling came back, weeks later. Then I resprained my ankle in 2010 and again in 2011. This invariably lead to a condition known as CRPS (complex regional pain syndrome).

I have what I term CES-Lite. I didn’t have the textbook case of CES, where you lose function of your bowels and bladder, sexual function, weakness in one leg or both, loss of sensation in the saddle area, etc. I just had leg and back pain. My CES was caught within the 24-48 hour window. Anything greater than that risks permanent nerve damage.

It is possible to recover from CES. You just have to give yourself a LOT of time and perseverance. What one goes through is not going to be the same for another, even if they have had the same surgery at the same level. It is possible to walk again but you need to work hard at it. Going to a physical therapist that has had nerve damage experience is very helpful. Typical recovery time is anywhere from 9 months to two years or longer. It all depends on the circumstances the individual has faced and if the surgery itself didn’t cause more damage. This is all my opinion and I am not a medical professional. I am just writing this to inform those that come to my site looking for answers to these questions.

See my page about CES 101 to help with nerve pain and other complications from CES.

Maybe If…

by Midnight Demon, posted in blogging, chronic physical pain, depression

Stages of grief:
Denial and isolation, Anger, Bargaining, Depression, Acceptance

I’m wondering if going through the stages of grief will help my mental state at all? I have been in denial for so long I don’t know if I can really go through it. But I know it will be an interesting topic for my therapist, if I ever show her my writings, and she actually reads them.

I’m reading Noonday Demon and it is reminding me that depression is a passing illness. What you feel today, you won’t feel tomorrow. I find this true and had forgotten it. Some can also be said of the suicidal mind.

I have been trying to make the reaction to suicide paper onger but it is difficult. I think I got to just rearrange the paragraphs so that it will be easier to write.

Maybe by starting out saying I am a multi-attempter who does feel like I am not glad to be alive yet I’m still here. Yet according to research, I should be dead. I wonder why I am stil here after so many failed attempts. I think most likely it is because I have lost confidence in my ability to end my life. It’s almost like a “why bother” reaction. I still don’t have the energy to go ahead with my plans and even though I thought it would be “easy” to hang myself off my porch, I have found that the stairs would be in the way. Another reason I’m still around. I should have done this months ago but I was too afraid of getting caught. And usually I wanted to kill myself after work on a Saturday night, where I know I most likely will not be found till Monday at some point. I had the perfect place picked out that was very secluded.

I guess I am a coward for not going ahead with the plans. And it sucks now that I have to live with this. I can’t die and I am not living. How to keep going, that is the problem and it makes me so sad.

I saw my PCP yesterday and to him I appeared cheerful. How I deceive people. I am so used to hiding what I feel to people, I guess I still have the knack of deception. The day before I was in the throws of horrendous pain and yesterday I am cheerful. Funny, I didn’t feel cheerful. My head was filled with suicidal thoughts so how can I be cheerful? I guess the most depressed is the most well hidden. I have always been able to hide my pain. Even as he was poking around my injured foot. I don’t know if he realizes the struggle I go through every day I am still here. No one does. Maybe I should look into other methods of self-destruction but I doubt I can go through with it so what is the point of thinking of another plan?

I often wonder what would happen in the aftermath of my death. Would I be missed? I often write a suicide note saying no one is to blame. The only person to really blame is myself. IF I had only done things differently-what I am not sure- Maybe I wouldn’t want to end my life. I just know that writing about it is the only escape I have left to me. Now wanted to hear about how suicidal I am anymore. I am sure my therapist would rejoice if I never mentioned suicide again in my sessions. Maybe if I don’t be so ope with them they will go away. This is something I have contemplated for a while now. But the fricken nitwit assesses my psychache most sessions so I cannot lie or betray her confidence in me that I will tell her my thoughts about killing myself. If I say no I have no thoughts I doubt she will believe me anyways. Every day for the past several years I’ve thought about ending my life. Some days I think about it more than others. Sometimes pain dictates the severity of killing myself and the need to escape from it. That is all I desire -> an escape from conscious or in a sleep state. Escape is the biggest reason for suicide. Escae from intolerable feelings of distress one constantly feels. In my case, I want to escape from the pain of living, emotionally and physically. It’s gotten to the point I can no longer distinguish between the two when taking a psychological pain scale assessment. I just wish the pain would stop. No one can find a way to relieve it. Icing/elevating/resting for the past year has not helped. It is very debilitating to be in pain yet it not be relieved but ordinary measures. And the worst part is being flip-flopped to other doctors. It’s the merry-go-round of health care. This doctor says it’s this, that doctor refers you to another doctor who refers you to yet another doctor and the answers are the same. Nothing is wrong with you that they can fix so it has to be coming from the back but even the neurosurgeon says there is nothing wrong. So why bother going to all these doctors anymore. While visiting my primary, he wanted me to go back to my physiatrist (doctor that specializes in muscles and joints). I am DONE seeing specialists. And besides this doctor moved her office to another site that I can’t get to. I don’t believe there is public transportation to her new office. I really liked this doctor too. She has been the most straight forward of all the other numbskulls I have seen. And besides, I know she is just going to say I have tendonitis. A tendonitis that flares up unexpectedly at times when I am at rest. Makes no sense. But then she’ll go back to the diagnosis of CRPS and I’ll be sent off back to my primary for pain management. And so the flip-flop goes.

Yesterday, I had some weird symptoms that I believe are from the anti-psychotic that I take to control my voices. It was liking I was having Parkinson’s symptoms. When I came home last night it wasn’t so bad, I didn’t take my regular dose and took some Ativan to calm me down as it was making me anxious. I emailed my pdoc to let her know and I still have not heard back from her. I see her on Friday anyways and other than me skipping and lowering my dose, there is nothing more that she can do. The only thing that sucks after this is that my hands feel fatigued.

I had a good night last night as I went out to dinner with some friends. Again the FB status that I posted came back to haunt me. That really pissed me off. I don’t understand why people take things so seriously and then can’t let it go. Isn’t it obvious I was having a bad night and couldn’t you just say you were sorry I having a rough time? But no…the part about me saying that no one cares is the foremost thing that should be talked about. This is what I posted “Everyone turn a blind eye to the pain I experience every day. So be it. When they ask for something I will just tell them no I can’t do it because of pain. Maybe then they will get the message. I am too tired of fighting all my thoughts are dark and no one cares or gives a shit” I don’t think I offended anyone or singled out any one person but apparently, I was not supposed to feel this way and post this. FUCK YOU, I will post what I want to post. Just like I will post whatever I feel with my blogs. The sad part is that a couple of close friends reacted to the status. Not one family member did. Shows you that you don’t have to be a blood relative to care.

You know you’re having a bad day when

by Midnight Demon, posted in cauda equina syndrome, CES, chronic physical pain, depression, mood disorders, physical pain, suicide

You know you’re having a bad day when…

You know you’re having a bad day when you wake up and a half hour later you are in severe pain. I just can’t believe my foot acted up. But then, this has been happening for the last few weeks. I can’t stand it anymore. I lose sleep because I am in pain and then when I do wake up, I am in pain again? It’s not fair! Usually my day time hours I am in manageable pain. It has gotten to the point where I don’t even notice it anymore. Now all that has changed. I don’t know if something else is going on with my foot, if I did something to cause it to be this way or if it is just nerve damage. I don’t really care of the cause, I just want pain relief. Luckily taking pain meds in the morning are working but it leaves me exhausted the rest of the day, even with a cup of coffee. Though my Starbucks funds are running low, I won’t be going there soon until my next pay period. I guess I over indulged when I bought myself some treats. Can’t help it. I love their coffee cakes.

Yesterday I was reading my support group email and a friend was telling the group how you need to mourn the loss of your old self as you are never getting back to it. Then a fellow blogger wrote the same sentiments about her illness and how disabled she felt but didn’t realize how much of herself had gone by the way side since becoming ill. She was crying as a way to mourn that loss. It got me thinking…maybe I am so suicidal because my grief is just too great. I got CES, Cauda Equina Syndrome, at the age of 25. It is a syndrome of nerve damage caused by compression of the cauda equina nerves, the horses tail, that is at the end of the spinal cord. These nerve control the function of everything below the waist, from leg movement, to going pee and having a bowel movement, to sexual function. It also controls sensation and proprioception, the awareness of where your legs and feet are. Once this is gone, your balance is affected. You might lose control of one or both your legs. You might not walk correctly anymore.

I have been through a lot the past year and a half. I have been diagnosed with a nerve condition called complex regional pain syndrome (CRPS), which is the chief source of my foot/ankle/leg pain. It is caused by already damaged nerves and aren’t I the lucky one to get both conditions. Since I have been diagnosed, I have been really depressed. I know there is no treatment other than opioid therapy. Though I have been in therapy with the same therapist for the last twelve and a half years, I still have not thought how much these conditions have affected my life until now. I no longer can work. At one time I was working three jobs. Now I can barely do one. Before going on disability, I was working two jobs. I wasn’t happy. Both jobs were stressful and caused me sometimes sleepless nights. But then I sprained my ankle and everything started to go down hill after that. I couldn’t figure out why the ankle, which should have healed in the allotted time, was still causing me pain. Why my leg still had swelling, why my foot and ankle were swollen. It didn’t make any sense. I saw one doctor after another. Podiatrist, orthopedists, physiatrists, neurologists. None could give me a clue until the symptoms became worse and a picture of CRPS started to emerge. By that time, I was having difficulty working both jobs. I ended up going to the emergency room in severe pain, pain that was causing me to think of suicide as a solution to end it because nobody could help me. I went to physical therapy and they were the ones to notice I wasn’t walking correctly. My foot does this swing thing that pulls at muscles it’s not supposed to while I walk, but only does so when I become fatigued. Which, one physical therapist showed, happens very quickly. And that is because I never regained my strength in my foot after getting CES. I never thought that at the age of 36 I would be disabled. And it hurts. Not having the social support of my coworkers anymore hurts. Not having contact with people outside of my family hurts. My friends that I thought would always be there are there no longer. They all went on with their busy lives and stopped texting and calling to see how I was doing. I don’t blame them. But I do miss them.

I guess when I have had uncontrollable sobbing episodes it was because of my grief that I have been avoiding all this time. I don’t know how to deal with it. I never thought that I would be in mourning. I never thought that I would lose my job because I couldn’t walk anymore. I still am able to walk just not for long distances. I can’t stand for more than twenty minutes without pain. I used to be able to do so much and now I can’t do anything. And because I am not financially stable. I can’t even go back to school while I ponder what my next move is. College is too expensive for me to afford. Even at the state school. I know I should put some time into getting a grant or something but I wonder if I am too “old” to get it. I have had to put my college education on hold because of my mental illness back in 2008 and I have not returned to school since then. But then I am not sure I can walk around campus and do the stairs like I used to. There is a lot of loss in my life on a very personal level. How do you mourn the loss of your functions? How do you get used to not doing something as “simple” as walking. I have had to relearn to walk again twice in my life. How many people can say that?

It makes me angry at times. I guess that is why I have been having fits of anger for no reason. I will just be in my room playing on my laptop or writing when all of a sudden these waves of anger will wash over me. I guess it is all part of the grieving process. And isn’t one of them denial?

pain of emails at times

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, depression

Midnight demons rise again

I was having a real painful night last night. The menses have stopped but the depression is still in full gear. I tried to stay “conscious” even though I was tired so that the demons didn’t come out and I sent some more good bye letters. I was doing fine until I couldn’t take the physical pain anymore and just posted a status on Facebook “everyone wants to turn a blind eye to the pain i experience every day. so be it. when they ask for something I will just tell them no can’t do it because of pain. maybe then they will get the message..I am too tired of fighting all my thoughts are dark and no one cares or gives a shit” . With me having posted this status, I was finally able to sleep. Then the interesting comments began. The latest one that I woke up to this morning is that one of my “friends” is going to kick my butt. WTH I don’t need that shit. I know she was joking, but come on! It so pissed me off and was so uncalled for. I wanted to reply a big FUCK YOU to her but what would be the point? I don’t remember posting the status anyway and it was how I felt at the time. I am just glad I didn’t email my psychiatrist like I really wanted to.

I did however write several pages to my therapist last night. I think the comp book is going to get filled up very quickly this week. I have been getting the itch to write. Sometimes it’s hard though because I don’t have a clear idea of what I want to say. Other times, once I do get started, it flows like a river. I don’t remember what I wrote about. Just some stuff that I wrote in my blog and how I was hoping that the midnight demons wouldn’t come out. Apparently, I was wrong. I am kind of pissed and I didn’t take my Neurontin this time around so it definitely is a psychological thing and not a medication thing. Like it would be that easy. After the Sox game is when I noticed I came apart. I just was really mad they lost again. And that the stupid fucking Rays won. We (Sox) still are in first place but I am not sure for how much longer if the Rays continue to win and we lose. I am getting very frustrated. But the bullpen just isn’t as strong as it was and the bats aren’t as hot as they were. It’s like both equations for the team have been null.

Anyways, so after the Sox game I noticed I got really tired and was going to go to sleep but I was playing my music and it was keeping me up, like fighting sleep up. I then had the urge to write something, anything. I really think that is when the demon came out. It didn’t take over completely, like it has in the past, as I was still trying to stay in control. But my mood just got wicked down and the pain in my foot and ankle went berserk. I think after my ankle and foot pain went nuts, so did I. I just lost control, hence why I posted that status on FB. But I felt better after I posted it and got some understanding responses. I didn’t get the rude response until this morning. I don’t get why people in pain respond that way. I don’t find it funny at all. And this person suffers from chronic pain too so I really don’t get it.

I still am feeling tired despite sleep most of the afternoon. My mother made some fish for supper so I had some of that. I really want some ice cream so I will probably go down to get it in a little bit, after I finish my writing.

My foot has been “good” most of the day, though now it’s fricken cold and hurts. This is not good because once it warms up, it will really WARM up. Even if I take my pain medication now, there is no telling that it will work or not. I have to wait till it warms up before taking the pain meds. I have tried taking the pain meds while anticipating and thinking it will lessen the pain but it doesn’t always work out that way. I really wish there was a pill I could take that would keep me pain free for at least 24 hrs. But there isn’t.

Last night I read a report about Gmail not being private anymore so I was off switching email accounts on my support group. I now use a Hotmail address for everything and I have several accounts that I have made over the years. My main email I have had since being with MSN in 2001. I recently have opened one specifically for my blog. This is so I know which account has the specific things I need. One is my personal, one is for my group, and then one is for my blog. I know it might sound weird but I like it this way. It’s just another organization system in my head. The trick though is remembering the passwords!! Because the group is yahoo and I hate using Yahoo mail, I had to log on, again. My email got corrupted once so I had to say my account was compromised to get a new password. Now I wrote it down in my journal so I know what it is should I have to go back into it. I hate Yahoo. But I guess if you have a strong password to begin with you are ok. My other passwords are the same or I try to keep them same if possible so they are easier to remember.

I am so excited that my menses have finally stopped. I would jump for joy but that probably would not be good for my ankle.