Tag: cauda equina syndrome

Rare disease awareness week–Cauda Equina Syndrome

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

Rare disease awareness week

This week is rare disease awareness week and I thought I would write about one of my rare conditions called cauda equina syndrome. The syndrome is comprised of different symptoms when taken together requires urgent attention. At the end of the spinal cord, there are a bundle of nerves that resemble a horse’s tail, thus the name cauda equina. When these nerves are injured or compressed due to disc material or other trauma, they can cause serious damage. For those having back pain, it is important to know what the red flags are so that emergency surgery can happen to prevent further nerve damage that could become permanent.

They are:
• Loss of sensation of one or both legs
• Loss of sensation to the genital area or saddle area (basically between your thighs)
• Incontinence of bladder and/or bowels
• Retention of urine
• Weakness or numbness in one or both legs
• Severe back pain

Not everyone will experience all of these or might have some. It is important to get an MRI when you have a few or all of these. Don’t think that just because you don’t have all, you don’t have cauda equina syndrome. I only had severe back pain and weakness and numbness in my leg when I was diagnosed. Some docs think that you need to have bowel or bladder involvement to have this condition. THIS IS NOT TRUE!! The quicker you have the MRI and surgery, the better your chances for recovery. You have about a 48 hour window to avoid permanent nerve damage. It is important that you have a competent surgeon, someone who does spines. I prefer a neurosurgeon over an orthopedic surgeon because the neurosurgeon will have a greater knowledge of the nerves. That isn’t to say an ortho can’t be just as good. If the ortho only does spinal surgery, you might be okay. Just be sure they are board certified. You can check that out by checking on this website http://www.abms.org/verify-certification/
This is only in the U.S.

If you have been diagnosed with cauda equina syndrome, you may have a lot of questions about recovery. It is a multidisciplinary approach, from physical therapists, occupational therapists, urologists, neurologists, etc. It is important to know you are not alone and there are support groups out there. I have had this condition twice, which is rare. I had it at two different levels. Everyone that I have met with this syndrome does not have the exact symptoms or damage following surgery, even if the level was the same. It take a long time to heal from nerve compression. Don’t give up hope. Regeneration is a time consuming process, but with the right amount of physical therapy and home exercises, you can recover in time. It took me two years before I was able to get off my medications until I was hit with it again three years later. It took longer for me to recover but I knew what to expect because I had the support group behind me. No one is a cauda equina syndrome expert, not even the best doctors. Little research is done in this area. There are stem cell research going on for those that have paralysis and that gives us the hope that some day our nerves can be helped.

Check out my pages about cauda equina syndrome if you like to help you learn more about it.

Pain and feeling blah

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

I didn’t have a good sleep. I woke up nearly every hour from 330-630. I was in pain but I was too sleepy to turn over to take my meds. Then by the time 0630 hit, I was really hurting so I couldn’t ignore it any longer. I was feeling kind of blah and didn’t really want to do anything. It was cold out so I took my meds and then went back to sleep for a few hours. I got up around 1130. My ankle was throbbing. I knew I should have something to eat but I didn’t know what to make. An hour or so later, I decided to order something.

After I ate, I went back to my room and holy pain! My foot turned into a block of ice and was so painful. I was feeling really down. I wanted to call PT to let them know I was not going back but I wanted to nap. I laid down and within fifteen minutes, my damn ankle bone went berserk. I decided to take the strong pain pill as I didn’t know what else to do and I couldn’t take my regular med for a few hours.

Today is the 17th anniversary of getting Cauda Equina Syndrome. I had lost feeling in my feet and had foot drop. My left leg was also numb. I was 25 and couldn’t walk or stand. It was a very difficult time. I had no idea if I would regain the use of my leg and it took months to walk unassisted. I was lucky that it was caught early and I did regain some mobility. I wasn’t 100% but that was okay. The shock of it is still with me to this day, made worse by being disabled by another condition that could have been because of the Cauda Equina Syndrome. I have no idea if it was or if I would have developed CRPS, Complex Regional Pain Syndrome, anyway. I still feel sad that I am no longer able to walk far like I once did. Even walking a block or two is difficult some days.

another day of messing up

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders, suicide

Another day of messing up

I woke up around 730 or so, I am not sure. I know I took my pain meds and then did my business in the bathroom. I think I recorded taking the pills in my Google drive excel sheet. I could have sworn I emailed the file to myself. Least I thought I did. I left the house around 0820 to go to Starbucks for breakfast. I had breakfast and then I went to work on the file. I had some difficulty connecting to Starbucks WiFi so I just used my hotspot. I check my email and there was no file attached. I checked my phone to see where it saved to and got nothing. I just figured I could work on the spreadsheet online. HUGE mistake. Either my computer was slow and couldn’t keep up or the internet connection was shit. Either way, whatever I did was saved, thus preventing me from undoing whatever I did. I lost ALL MY DATA FOR THE YEAR!!! I have no idea if there is a way to recover it or not. I was so annoyed I just fumed.

My cousin called me and told me my uncle was in the hospital. He didn’t tell me which one so I was like whatever. No one tells me anything anyway so I am not worried. I decided to go to my PCP’s office to get my scripts. As I was responding to some message, my sister called me telling me she was taking my mother to the doctors and that my uncle was at the place I was going to. After I picked up the scripts I went over to the building where my uncle was. A lot of walking. I stood the whole half hour or so while I visited. My ankle and back didn’t like that one bit. Around 1130, I left to go home and wished my uncle well and get better soon. He was thankful I visited.

I got home and wondered what time I had taken my pain meds. I figure around 1500 I would take them. I marked it in my med app to remind me of the next dose. I recorded it but didn’t take the meds. Then I got busy with my niece coming home from school and my mother coming home from the doctors. I had made a cup of coffee as my niece came home. I’ll probably be up all night but I think pain is going to be a major factor. My mother got settled and then I cooked dinner for my niece, my mother, and I. Nothing fancy just hot dogs and beans for my mother and I and mac and cheese for my niece. When we were finished and I was cleaning up, I didn’t feel right. I started feeling like I did the other day when I missed my pain meds. Uh oh. I went up to my room to take my meds but my damn bowels decided to act up. I had to run downstairs and I just made it to the bathroom. My ankle and foot didn’t like the run part at all. When I had finished, the liquid soap was out so I refilled it. That was the intention. I got the stupid soap every where because the hole in the bottle was small and caused an air bubble. I was ready to say fuck it when I figured out how to get it in. My back didn’t like standing while I emptied the small bottle of liquid soap and neither did my ankle. I was getting really dizzy and needed to get to my bed. Soon as went to my room, I took my meds. Now I got to fight off the withdrawal until they kick in.

feeling more hopeless after my neuro appt

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Feeling more hopeless after my neuro appt

I woke up around 330 in pain. It was a hard decision whether to try and go back to sleep or stay up. I decided to go back to sleep and paid for it as I woke up late. I had just enough time to brush my teeth and get dressed before catching the bus. It was cool out and the sun had not shown itself yet. I just wore my glasses but brought along my sunglasses as I knew it would show itself later.

I went to Starbucks and had breakfast with espresso. I wasn’t in too much pain, but then I usually am not that time of the morning. Because I left late, it left no time for writing. After I finished eating, I left for the train station. I was feeling nervous and didn’t know what to expect. I would know soon enough.

I got to the neuro’s office and checked in with about 10 minutes to spare. The train was crowded so I had stood most of the way. My foot didn’t like it. After the medical assistant took my vitals, I waited for the doc. He was a few minutes late but he came. I explained what had happened and that I was hoping he could confirm the CRPS diagnosis. That’s where things got tricky. Because I have a previous nerve injury, I don’t have the “typical” signs of CRPS. When I told him that cramps had set off my pain, he became under the impression that the cramps had cut off blood supply to my nerve in my foot/ankle and thus I was diagnosed with nerve injury, not CRPS. He tested my foot and showed me the nerve branch he thinks is affected. Unfortunately, the area is not likely to show up on an EMG and the test itself could cause a significant flare up. He ordered some blood work and a special bone scan to either confirm or deny CRPS, but he thinks it is just a nerve injury. He started naming some medications that I never heard of. Only two I hadn’t tried. I can’t repeat them because he said them so fast and my knowledge of the class and what they would treat was limited. He said the treatment for the nerve injury and CRPS would be the same. I guess that is good. He didn’t really say what that treatment was, however. He is going to wait for the blood work and bone scan results to go over things with me.

I was stunned and left feeling deflated. I didn’t know what to think. I got my blood drawn and then headed home, hoping I would catch the 0930 bus. I did. The first person that I talked to about this was a friend on Twitter. I didn’t go into much detail, just summarized for her. I also told my CRPS group that I will let them know when I can process it and that it wasn’t good. I emailed my psychiatrist, who is not heavy into diagnoses anyway. She said that maybe it’s not a matter of what it is called but how it is treated. She wants me to get relief, which is what I want, too. I was hoping that I would get diagnosed properly and then finally be able to get on a longer acting pain med. Now that doesn’t seem likely. I don’t know if I will be able to continue on my pain meds. I’ll really be upset and suicidal if this happens.

I ordered McDonalds as comfort food and then took a much needed nap. My foot cramped for a few minutes before I finally woke up. I was hot as I shut off the ceiling fan and I needed to go to the bathroom. My mother made something and it smelled horrible. It was asparagus and eggs. I felt nauseous. I went to the bathroom and then went back up to my room.

My cousin had called me about an hour after I got home. She invited me to her house on Saturday for some painting thing. I told her it would depend on how I feel. My sister is going so if I feel up to it, I will catch a ride with her. We had a good talk. She is accepting of my being transgender and is happy that I am moving in that direction. She just wants me to be happy. She also told me to look into weed for pain control. I told her I was scared because I had a bad experience when I was a teen. I really don’t know if I can take it as I am under a pain contract with my PCP. I will need to discuss it with him. I rather take a pill than smoke it. I don’t know if it will be effective. Some people have found it to help them. She explained to me the different kinds. I just yes’d her. MJ is now legal in my state. If anything, I think using CBD oil might help so I can put the stuff directly on the area that hurts. It’s something down the line. I really want to try Kratom but need to research it more as there are different strains just like MJ as well as not so potent places that sell it.

I thought next week was pay week but it’s not, it’s the week after. I am bummed because I really want to replace my screen on my laptop. It’s getting worse and I don’t think it will last till December. I got to take it apart again and take a pic to send to my computer friend. The wire that connects the screen is securely taped. I’m not sure if I remove it, I need to put it back in place. Just another headache.

Tomorrow I see my psych after not seeing her for a month. It’s an early morning appt and because there is a funeral processesion going on in the late morning, I need to go home a different way. That is going to be fun. I just hope I remember.