The Last 2 weeks have been insane! I am pretty sure I will have to have some sort of therapy! I am being totally honest and serious about that.
This post might take a couple days to write, as I am still recovering from surgery, but I really wanted to get it all written down.
I had a Spinal surgery on December 6th 2021- I got my spinal cord detethered from my spine. If you have followed my blog so far, you know I was diagnosed with Hypermobile - Elhers Danlos Syndrome, and after that went to a specialist out in South Carolina where I was diagnosed with Tethered Cord and Cranial Cervical Instability. This specific Dr, likes to take care of the tethered cord first, before dealing with the Cranial cervical instability, because in a lot of cases you can put off or not even have to have fusion surgery to fix the Instability in your neck. The tethered cord has been preventing me from really ever regaining my strength back in my neck, and with this surgery I (hopefully) can gain all the muscle I need to help my instable neck.
The surgery Day was pretty typical. Arrive at hospital- get checked in- IV put in, meet with all the doctors, then go in for surgery. It was about an hour and a half surgery, and it went well. No complications doing the surgery, I have even read all the notes from the surgery, and it was found that my filum (a part of the spinal cord) was non elastic. Which is exactly what they were looking for, when doing a detethering surgery. Basically my spinal cord was way to tight and causing lots of issues.
I remember them waking me up, of course, I was extremely tired and don't remember a lot except for being wheeled around to a couple of different rooms, I don't even remember exactly when my husband started talking to me. They started me on a regiment of pills, and this is where it gets complicated. Apparently I have a very bad reaction to Oxycodone, I remember having a slight headache after my first dose and told them and they suggested,,, of course...more pain meds...which meant more Oxycodone. After it kicked in I was greeted with the worst head pain I had ever been in, It was so bad that I was suicidal! I literally couldn't handle the pain in my head and I wanted my life to end so the pain could be over! This was in the evening, and so it was harder to get a hold of doctors, I begged the nurse for something else to relieve the pain! But all they kept wanting me to take was the stupid Oxicodone, I was in so much pain I couldn't get out why I didn't want Oxi any more. I really feel like this was a newer nurse and didn't exactly know what to do. the only medicine I knew was Ibuprofen and that is what I begged for, she didn't try to get me on any other pain meds. I wish my brain could at least of expressed to, please ask the doctor to get me anything else besides oxy, If my brain was in the right frame of mind I could of asked for morphine. I feel like this nurse failed me a bit, as in not giving me any option then to just suffer. They finally let me have a dose of Ibuprofen and I finally fell into a very unrestful sleep. I also forgot to mention, I was on strict orders to lay flat until the next day. .....ok I have to stop.... I am giving myself to much anxiety thinking about it....
Alright - I am back :) Took me tow days :)
The next morning I was still pretty miserable, but they were allowing me to sit up more and that relieved some of my body pains, I still had the headache, but it was at an 8, instead of a 10. It was just a miserable day, because of the pain and they kept trying to give me more oxy, for it....by this point ...I was just getting frustrated at the nurse because I didn't feel like I was being heard! OXY was what was causing me the pain! After the shift change though, I got the most amazing nurse! She had been been a nurse for 19 years, and definitely new the ins and outs of everything. She got me another headache medicine, and helped adjust me into a position that got my headache pretty much gone! It was a big relief! I slept a lot that day, and by the evening they had physical therapy coming in helping me sit up and actually stand up. I was pretty dizzy standing, but It felt so good to just be sitting up! I felt like I was for sure going to be released the next day! I slept ok that night, I mean as good as you can in a hospital.
This is where is starts to go downhill again.... I woke up by another nurse putting my bed back to a laying flat position. I was confused, and asked her what she was doing. This nurse (which I had for two days) didn't have the greatest bed side manner. She simply stated I was back on bed rest, and to lay flat today. She didn't really give me a good enough reason as to why either! I was really mad, My husband hadn't even been in yet and when he came in, I couldn't give him an answer as to why I am back laying flat. We both thought the day before had gone so much better. Oh, so a little side note here, I had been visited by a doctor at like 5 or 6 in the morning. I can't remember what we talked about, but seriously why do they have the doctor come in when I am so out of it!
That was another awful day! My pain came back to my head (laying flat on my back, gives me headaches) My Neck killed me, my whole body ached! Those hospital beds are just awful, and the pillows are awful too! I have learned that with hEDS, comes a very sensitive body. After a lot of trial and error, I finally found things that help my body not ache so much when I am in my own home. Of course, at a hospital, I had none of those things! I didn't even care about the place where I had actually had surgery, because the pain everywhere else was way worse! I missed my favorite nurse so much!! My anxiety spiked again and I was just balling my eyes out that night (thursday). Thankfully I had another amazing night nurse! She got me on stuff to help my anxiety, and noticed a med that I hadn't tried yet for my pain. It was a short lasting narcotic that was given through my IV, (dilodin). and boy oh boy! it zapped all the pain I had been having all week away within minutes! I felt like it was a miracle! WHY didn't the other nurses suggest this??? Maybe they did? who knows I was pretty out of it half the time. Anyway, I fell asleep and slept about 4 hours straight when I woke up in pain again. Another dose of the Dilodin and I fell right back asleep. I was on other pain meds, but this one seemed to actually work. The next day I was back with the nurse with the not great bedside manner and do you know what??? She made things worse....again.....She kept denying me the dilodin, even though I new I could have it every 2 hours, I was only asking for it every 4 hours! What the crap?! Also I was still on orders to lie flat! Which was really just hurting my body more in my opinion. I feel like the nurses need to get on the same page....some were like oh, your still having pain after the other meds, ok lets get you something else, and others just plain refused.....What really bugged me is when this nurse ( I am sure she was trying to joke) suggested that we switch places! like "I wish I was the one laying in the hospital bed, and you were the one up and doing stuff!" Seriously??!?!?! Did she really say that? I actually was so out of it, I didn't get the joke until she left the room and my husband started saying how rude that was to say. I would have switched her places in a heart beat! I have been chronically ill for 12 years, been in the most pain I have ever been in all week and she wanted to switch me spots? Man, she needs to sort out her priorities (lol, Harry potter reference)!
Anyway, Thankfully, I had another good night nurse, who was willing to give me the dilodon every four hours to help the break through pain, and guess what?! The next day my most favorite nurse was back!!! Honestly, one nurse can change everything! I felt very well taken care of anytime she was my nurse! By now, I had finally an answer as to why they kept laying me flat. Apparently my drain was putting out more then normal amounts of fluid, and along with the stupid headache they felt it was best to keep torturing me. Ok, yes I know now that it was for my own good, but back then I felt like I was purposely being tortured because I had given the doctor a grumpy look for waking me up at 5 am everyday. Your brain doesn't quite think logically in the hospital, when you have been in so much pain, and on many different medications. It was Saturday by this time and they finally took the bed/lay flat orders off and I was allowed to sit up 20 degrees! It felt so good on my body to be able to even do just 20 degrees. Next thing I new, the doctor (who kept waking me up at 5 am) was coming in to take my drain out! Again, both my husband and I were confused at the sudden switch, but since my husband was there and I had written a list, I could actually ask coherent questions (along with my husbands help). Since my output from my drain was consistent, my doctor came to the conclusion that I was one of his patients that just produced more fluid then the average patient. It is uncommon, but since he is worldwide known for doing this surgery, it does happen from time to time. They were also worried about a spinal fluid leak, but determined that it was (if any), small enough to heal on its own. So I could still have a small leak, but they just aren't 100 percent sure.
I was able to get out of my hospital bed in the late afternoon and take a walk around the hall! It felt good to be up and getting all the kinks out of my body. Yes, my back hurt, but I didn't care, I was finally up! I guess I did so good that they said I would probably be discharged on Monday (it was Saturday) . A whole week in the hospital, when it was supposed to be a 3 day stay! Even better, thankfully, I was discharged on Sunday evening!
I would really like to thank that one nurse, because she made the biggest difference! And Also My Amazing husband! He was right with me through the whole thing! I know it was extremely hard on him to see me in so much pain, and I never would want to have to see him go through what I went though, but he was right there, the whole time holding my hand, stoking my head, or telling me random crazy stories to keep my anxiety at bay! He is truly amazing!
Stay Tuned for more of my story! Yes, there is more! But for now this concludes my hospital stay story
