Tag: tethered cord

Post Op

by Midnight Demon, posted in blogging, depression

Hey all,

I had surgery Thursday. It went well and I did have a tethered cord and a messed up disc. They repaired that. Aside from horrendous post op pain I am healing as well as can be. I am getting frustrated with how slowly things are going but to be expected. I can’t rush my recovery. So far bladder is functioning the same as it was. I am not drinking a lot so having little outputs. Sometimes the urge is strong enough for me to pee on my own. Other times I got to cath or I just don’t have any urge and have to cath after 4-5 hours. Urologist said I might have to go every half hour in the beginning. Luckily it hasn’t worked out that way yet. Most I am going is every three to four hours, which is what uro wants.

I will be in the hospital until at least Tues, barring any complications. PT has been wearing me out severely so they don’t want me going home until my stamina is a little better. I am progressing every day. I’m just not where they want me to be right now. A lot of movement tends to wear me out so fast. Just getting up to pee is tiring. And there is not a lot of steps from my bed to the bathroom. I still need to call someone when I have to go just in case I fall.

I have hit a bit of more depression because of my frustration of not being able to move the way I used to. Back pain is bad but is getting slowly better. I haven’t had this much pain in so long. I am glad they increased my BT to the same dose I am taking extended release med. I hope my pcp can keep this change while I recover as it really helps. I just don’t like the constipation all these meds are causing. I can’t wait to go home and take Miralax twice a day as I know it might cause colon blow but it is so needed right now. I am so bloated from not going.

Sleep has been elusive but I hopefully will be getting my meds earlier than I did last night. Last night I got them really late so had a difficult time getting to sleep. Plus RN wanted me to take a med at 2 am so I didn’t want to sleep then be woken up. I ended up sleeping until 330 when I woke up to pee. Bladder is good for that. Seems that time is my regular time. I hate it. But I end up cathing to make sure I am empty so I can sleep.

My roommate went home. He was a dude from Maine with similar issues as me with the back. We exchanged numbers and said we’d call. Don’t know if it will happen. He seems to be a good man. Tends to talk a lot in circles but he is an older gentleman.

I hope I don’t have a problem sleeping. I am so tired I feel like I can sleep through the night. Hope I do.

day of surgery

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

Day of surgery

I woke up an hour before my alarm. I plan on staying up. How I want a cup of coffee right now or tea. I just took my meds with the bare minimum of water. It was so gross taking them with water, especially this early in the morning. I can’t drink water and now I am a little nauseous. Hope it goes away. I got to brush my teeth. I was going to shower and I might. Just not right now. I am wicked nervous about this and my right arm is half a asleep. I hate when I sleep on it. I got an empty eyeglass case so that nothing happens to my glasses.

I got to get ready now. I just wanted to write a quick note that I may not be writing for a while. I am not sure when I will write next but I will when I am up to it and I will bitch about every second of it so expect swear words.

2 am thoughts

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

2 am thoughts

I woke up about an hour ago because my bladder said to. I had a difficult time trying to go back so I decided to write. Laptop was doing updates so I had to wait a bit for it to finish before the thing could start. I got a message from my neurosurgeon for me to callback in the morning. I forgot what I sent them so I had to look in the sent messages. You can only look at these messages on the web not through the app. I had asked the surgeon if he would look at the disc that I am concerned about while I am under anesthesia to make sure I won’t have problems in the future with it.

I was looking over my last blog so I didn’t repeat anything here but things are on my mind. I think I do have a UTI as I am getting pain on urination with the catheter. After I void, it stings and is sore. I don’t know if I am not inserting it gently enough or what, you need to put some pressure in order to put it in. I will try to be gentler next time, which will be in a few hours. My body seems to want to expel urine every 4-5 hours. Sometimes the void urge is strong and I am able to go but sometimes it isn’t and I have to cath. Sometimes if I sit and wait eventually I go but this is after like 5-10 minutes of waiting to see if my bladder will go on its own. Just when I think I will have to cath, it goes. So frustrating. I never thought I would be this disabled before. I knew it was a chance with my discs being the way they are but I didn’t think it would happen due to a tethered cord.

Ankle is hurting a bit more than it did the last few hours. I hate when I wake up in a 5-7 level of pain. It makes me want to stay in bed but I got some things to do today so I need to try and do them even though I know it will be hard. I need to get eggs and tortilla wraps. Also need cling wrap and I want fricken Oreos dammit. I love the golden ones better than the chocolate ones but the thins are the best! It has the right amount of cookie and filling. I might get both if they are on sale. Depends on how much the eggs are as I need at least a 2 dozen. I want to make 12 burritos so I need 2 dozen as you need 2 eggs per burrito. Otherwise, you don’t yield as much eggs when you go along. I know because I have done this before. I tried 6 last time on 8 eggs and it didn’t get me very far. I was able to stretch it to 5 but the eggs were not as much as the first. I have trouble judging how much to put in each burrito when there isn’t that much egg. Hopefully using two dozen eggs (at different times) I will yield good egg results and the last burrito won’t be skimpy of eggs.

Next week I got to take off my jewelry. I am going to have my watch in my bag so that I have it. I need my watch as it has a way of centering me. I don’t know if that is the right word. I just feel better with the watch then without. I don’t feel as lost. I want to have my bathroom stuff with me, like catheters and deodorants and what not. I can’t use them day of surgery though. I am going to be catharized during the surgery. I just hope I don’t poop. That is a fear I have which is why I am trying to empty my bowels now rather than later. The new bladder med seems to increase the constipation so I am holding off on taking it until my bowel movements are better. I have been taking Miralax to go but stuff has not been working the way it should and I fear I am going to have colon blow soon. I might have to take a Dulcolax day before surgery so I know I will go as I want my bowels to be as empty as possible. The stuff they give you always causes constipation so I don’t want to be super backed up like I am now. I hate that I will have normal BMs and then nothing for days. I never know what I am doing different that causes this. I am taking almost 2,000 mg of magnesium to try and go along with the Senna and Miralax. The uro NP wants me to talk to my PCP about this to see if there is something else I can do to go but I really don’t want to. I know there is a drug you can take for opioid constipation but that isn’t the only thing backing me up. It is the anticholinergic meds I am taking that is causing this to happen. Plus whatever is going on neurologically isn’t helping my bowels either. So there isn’t just one factor in all of this.

I need to pack my bag of what I will need while in the hosp. It won’t be that many clothes as I will be wearing a hospital gown through most of the stay. I won’t wear underwear again until the catheter is out and I am catharizing on my own. I just want to make sure I have enough underwear with me in case of accidents. I don’t know where the scar will be so I might not be able to wear underwear for a while until the scar heals. I will find out after surgery how things will be. I know that I will be lying flat for 24 hours post op and then I will need to be raised slowly so I don’t get a spinal headache or a tear in the spinal area. Last thing I want is to leak spinal fluid. That would not be good!

Getting sleepy so I think I will go back to sleep now. Writing always helps to calm me down.

Saturday Blog 07052020

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

Saturday Blog 07052020

I am feeling really depressed today. I have no energy to do anything. I feel like I should make some progress in my room so I might do that after I write this. My back has not cooperated much in standing so will be interesting to see if moving shit around causes it to flair up some. I got Matt Stell’s song “Everywhere But On” in my head so I got it playing on repeat. It is true as I have moved everywhere but on. I might share it with my therapist. I think she likes country as she was excited Zac Brown Band is playing at Fenway. This is the third or fourth year they have played there. I am not that interested as I think a ballpark should just play baseball. I hate it when they set up the stage and stuff. I just cringe. Maybe it is just me.

I sent a message to a reader because I haven’t heard from her in a while. She is doing okay but is really depressed. She is struggling and I felt her pain. I feel bad that people suffer from pain. It truly sucks when you hurt for more than a few weeks. It is like the pain will never go away. I have been trying to figure out if I will get pain relief when in the hospital for my CRPS pain and no one has been giving me an answer about it. The NP had said that if the pain medication the neurosurg team were giving me was not adequate they would consult the pain team and they are “top notch.” I am just worried they will only treat my post op pain and nothing else. I will be on my back laying flat and my legs will be raised so I am glad because my foot won’t tolerate being flat. It has a difficult time when I lean back and put my legs out. It will flare up in a few minutes but soon as I lean forward again, the pain dissipates a bit. It is still there but I don’t feel it as much.

Today is the anniversary of when I started therapy with the school counselor. I remember it was very difficult to open up about stuff and the voices were making things so damn difficult but I couldn’t tell anyone that. It was my secret and I knew people would not be welcoming with this news. Therapy only lasted until the end of the school year and then I saw a social worker for a year before she left after she got married. The other therapist I fell in love and felt she was just seeing me for my insurance money. Also felt like she took advantage of me because she knew I loved her. She wanted me to go to Northeastern just so I could continue seeing her. I had plans on going to Maine for college. But none of those dreams happened because two months after I graduated high school I ended up in the hospital. So by the time I finished high school, I had three therapists. I would have another 8 before I found the one I had for sixteen years. I would have one more then another a year and half later. I have been with my current therapist for eight months now.

Got a week and a half before surgery. I am so fucking nervous it is not funny. A friend that I saw back in one of my hospitalizations wants to see me as my sister is not going to stay with me. She will be there for moral support. It is up to her if she wants to. I won’t say no. I appreciate it as my nerves will be through the roof.