Tag: neurology

Three weeks post op hysterectomy

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, CRPS, depression, gender dysphoria

Three weeks post op hysterectomy

I had an appointment to see my surgeon this morning and got up late. I just finished my coffee when I had to rush to get dressed and out the door to catch the bus. I was right on time for the appointment as the bus was late. The surgeon and I talked about my bladder and how things were going. I said I feel like I am being controlled by my bladder because I am so aware of it all the time and on a schedule to go. She said this wouldn’t be forever and to resume taking the tolterodine for bladder control. She said that while operating she could see that my bladder was inflamed from the nerve damage. We also talked about increasing the Neurontin. She agreed that taking it would help with the pain so I will be taking a dose in the afternoon and at bedtime. She also said that if I have a big day to take an ibuprofen before leaving for it. She wants to see me in four weeks unless something comes up beforehand.

I came home from the appointment and ordered Chipotle for lunch. I emptied my bladder but there wasn’t a lot of urine. I tried again after I ate and still nothing significant. I took some pain meds as I am in pain and the bladder is empty. I took a short nap kind of sitting up on the bed and my back didn’t like it. So now my back hurts.

Over the weekend I sent a message to my neuro telling her about the increase in nerve pain in my thigh. She just got back to me and looks like I will be getting an MRI to see if the L2-L3 herniation is worse. Tomorrow I can call scheduling to schedule the test. I was able to find a lidocaine patch to put on it. I am so happy because I threw out the box that I had because they were expired. I don’t know how well this patch will work but will find out soon enough.

Yesterday I ordered a half black olive pizza and I have one slice left. That will be my dinner tonight. Or was. My sister threw it away. I am so angry at her for doing it. I went downstairs to my other sister’s apt and had some pita bread with fig and some chicken that my niece didn’t want. Greek food is good.

I am so tired I just want to take my night meds and go to sleep even though it isn’t close to 7p yet. I usually take my night meds between 7 and 8p. I did a lot of walking today at my appointment. I then went to Starbucks for a mocha and a pumpkin scone, my first of the season. There is no Sox game tonight so I am glad I don’t have to be up till late. Their games have been averaging at least four hours these days. Long time for a ball game but they also have gone into extra innings some nights.

On a fun note, I colored a page from a coloring book called It’s about to get real unprofessional last night when I couldn’t sleep right away. It is themed as interns should get paid at their sites rather than not, which happens most of the time. It really sucks for a financially strapped grad student working on their final degree. The page has been retweeted a few times and I think that it’s great to give them the exposure so that more books can possibly get sold. Coloring has been a good distraction for me. It also helps me to relax from anxiety and overwhelm. My therapist replied to my message about being overwhelmed with gender dysphoria. She said to journal and write to organize my thoughts. Sometimes I am not able to do that but coloring helps to calm me down enough so I can write. I don’t know why I have been having trouble writing when I am upset. During certain times I am able to but others it is like I write a sentence and then I go blank. My thoughts become frozen and I am unable to carry on with journaling. It is very frustrating as a writer for this to happen. I am glad that this blog has helped me overcome some of the frozen thoughts as I have been able to write at least 500 words most days. If I do less, I do less. Some days I can’t so I just post a picture of an animal.

Tomorrow I see dermatology to get my skin moles looked at. I am kind of nervous about getting there because I have to take the Orange line and then a shuttle bus to get there. It is going to be a long day.

answers about Cauda Equina Syndrome

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

Disclaimers:

***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.

•
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.

just the back

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

I had another easy day today. I didn’t go out despite the temperature being higher than it has the past few days. I did get some work done with my book. But now I feel downhearted. I remember what it was like getting diagnosed with my condition and not knowing if I was going to walk again. I took therapy into my own hands and relearned to walk again on my own with a little bit of help from this therapist and that. It wasn’t until my second diagnosis that I really decided I was going to be the ones making the call to walk again. I have learned to walk three time in my life and hopefully the third time was the last time.

I’m also downhearted because I keep thinking of my ex and what she is up to. But I know it would be too painful for both of us to open a line of communication again. I also been thinking of my other ex as I just wrote about her in my book. I’m not sure if that part is going to stay in it or not but for now it’s there.

I know I should not be so hard on myself for things that happened that weren’t my fault but I do still blame myself for things. I should have stopped seeing the chiropractor when I started to feel better. I should have stopped seeing my ex the minute she didn’t want to be around me because I was loud (second ex). And I should have killed myself in 2005 so I wouldn’t have had to face the last few years of being in horrific pain. Nobody understands what it is like to be in chronic physical pain unless they have gone through it themselves. And no one can tell me that the pain can’t be that bad to want to kill myself because I don’t have cancer. I wish it was cancer because then I know it would be terminal and there would be an end to the pain.

It’s like with the back pain. Everyone asks me how’s the back since I have had surgery. They don’t ask about my leg, foot, ankle, bowels, bladder. Just the back. As if that one thing determines everything else in your life. I know the reason for my foot, ankle, bowels, and bladder problems have to do with my back but the fact is that they don’t think the two are connected. And that hurts. It’s like my leg doesn’t matter only my back. I didn’t get operated on my leg. Just the back.

a Cold at Christmas time sucks!!

by Midnight Demon, posted in cauda equina syndrome, Chronic pain, depression, mood disorders, physical pain

Today was another awful day. I forced myself out of the house to get my license renewed and nearly collapsed in exhaustion when I came home. I hardly ate anything today. I just ordered Chinese and didn’t even eat a small portion of it. I just have no appetite even though I have been thinking about food all day. I still am coughing and wheezing. I feel so drained. I am congested and I just feel awful.

Tomorrow is Christmas and I don’t think I will join in the festivities. I haven’t even wrapped my gifts or finished my shopping. I guess it will have to wait till I am feeling better. I don’t care. This cold has forced me to think about things. Yet not to think about them at all. Am I being selfish because I have not done anything? I don’t know. I just want to stay in bed where it is nice and warm and I don’t have to deal with anyone.

I am losing the sense of smell. My tastebuds have already flown the coop as my dinner didn’t taste as good as I thought it would.

I am pissed off at Walgreens for not filling my prescription because they need to have it clarified by my doctor. I don’t understand it. It says take as directed. How can that be misunderstood?? My doctor has told me how to take it so why is there a problem?? And it’s Christmas which means I most likely will run out of my script as the new one can’t be filled yet. I am so mad and when I went to voice my disgust with my mother I lost my voice because she couldn’t hear me because of my raspy voice. Nothing like trying to talk sense to a deaf person when you are ill. I hope they get this straightened out soon because I need my meds. I will fight with this stupid pharmacist if I have to.  She is a good person but I hate that she has to verify every prescription she gets!! That just takes too damn long in my book!!

I just realized I have not written anything in my journal in over a week now. And there are only six more days left in the year. I guess I will start a new journal sooner rather than later. I just haven’t had the energy of writing a blog and then writing a personal journal entry. It’s taken a lot of energy just for me to write this much.

I was supposed to go over my Aunt’s house but I never do on Christmas Eve. I have always done my own thing. Or I have worked. This is the first Christmas that I am not working. I got asked today what my job is and I told them I was disabled. How depressing.

Don’t know if I told you about my neuro opthalmalogist appt went. They still don’t know what is causing my eye changes. I still have to get new glasses as it was recommended that a new progressive lenses might help. I had to return my other ones as I could not see out of them at all, or I could for a little while and then all went blurry. I hated them. I have worn glasses since the first grade but these I absolutely could not stand. I liked the frame and all but there was just something wrong with the lenses. So my Christmas gift to me is to buy some new glasses. Course I will only go shopping if I am feeling better!!  This cold sucks!!