I’ve had the spinal stim out for three full days now. I truly want this to work. Pulling it out was not painful at all. I was worried that it would be, but it was not thankfully. I asked the doctor about all of the anxiety and shaking as I believed it to be from a steroid injection for inflammation and he informed me that I had not received any steroids. I received three antibiotics that target meningitis and he believes that is what caused my anxiety and feeling so poorly. I know the nausea and flu-like symptoms were from the antibiotics. It’s really hard to differentiate the good from the bad with all of that going on. He said it could be left in for a few more days, but I was soooo ready for it to be out. I understand now why it works. Much like sitting in a massage chair helps to relieve pain, it gives continuous stimulation to a specific area and you don’t focus on the pain so much. I am struggling with the stimulation that I received and how it felt. I’m just not sure at this point. I want to do anything that will help relieve the pain, but do I want to go through such a huge commitment with this stimulator installation only to find that I truly cannot tolerate the stimulation. I don’t know how much of the negative feelings were from medication or was it a by-product of the stimulation. It’s difficult to distinguish and separate all of what was going on. I did not feel well during the trial and I am using more pain medication right now because of the residual effects.
The truth is, I want to do anything I can to get myself back into the world and relieve as much of the pain as possible. My family has to endure this right along with me and I would like to help alleviate as much of their burden as is possible too. I know it takes a lot from them as well not to mention how irritable one becomes when in pain. The depression that comes from enduring continuous pain is its own issue all together! It’s such a complex problem and I don’t feel like the medical community truly understands. I have now seen it from both sides of the hospital bed and I can honestly say that I didn’t have a clue what I was talking about when I told patients I was so sorry they were hurting or that their lives had been devastated. I felt terrible for them at the time and that was genuine, but I know now that I didn’t have a clue what it truly means to have your life devastation from something like this.
I asked the sales rep about defibrillation and he did not know. I will have to keep asking and studying to know more about what decision to make. I am tempted to just go forward in the belief that all of the people who proclaim it to be such a miracle are right and I will know that feeling too or maybe this just isn’t the answer for me. I just can’t tell at this point. I still need time to know. I am very thankful that my family understands my need for time.
Okay, I’m early morning on day three of my spinal stimulator. It feels like I’m in a massage blanket from the waist down to my feet. It’s like holding onto a lawn mower and your hands feel the vibration. It does mask the pain, but it doesn’t stop the muscle spasms from my back so I guess that’s something I will need to deal with. I’m happy with the pain coverage and now understand that in order to reach the center of my back I will need the stimulator with a flat lead. It’s new and will require a neuro surgeon to perform that part. I was so very sleep deprived the first night from the steroids and trying to sleep with this turned on that i was ready to call it off, but once I turned the device off and rolled over I got good sleep finally. The electrodes are in a position where I can only lay on my left side. I could lay on my back except that it causes excruciating pain and this particular stim doesn’t reach that well and at the time it wasn’t programmed to reach that area at all. So i was stuck in one position continually. Like being stiff in an airplane seat in one position for two days. I was going batty, but i got some good sleep once i took a pain pill, turned off the stim for the night and just slept very sound.
I’m feeling much better today since the stim rep adjusted it yesterday and it feels better and covers more area. My dilemma now is the issue of never being able to have an MRI and what about defibrillation? If I someday have a heart attack or something else, can I not be shocked? I need to ask that because that’s two of the medical options that you give up as I understand it when this is installed. I do know that the site where they are coming out is very sore. Much like an IV in your arm gets more sore over time, so does this.
All in all, I can see how this really does help. It will help with the pain as well as extending my time standing and walking. I haven’t done a lot of walking so I want to try to walk and have my new settings.
Okay, getting started in the world of blogging. I imagine over time I will talk about the many, many test and procedures that I have been put through and all of the steroids and medications that have been tried. The frustrating journey of getting someone to listen to me when I said I was in pain! And the neurologist that saw me for ten minutes and declared that I was just another addicted healthcare worker! This was a few months before the surgery that discovered that I had been living with broken screws that were literally tearing at my body! Needless to say, I left his office crying and vowed never to return to his office again. I have to admit that I would love to drag him to court because it was his inaction and bias that failed to see the problem with my spine in the beginning and then the later insults. I will elaborate in more detail over time. I can feel the flush of anger and rage rise up now! The feeling that I would want him to feel the shame he deserves and I was unjustly left with when he accused me of complaining of pain to feed an addiction that did not exist! It’s very painful emotionally to deal with the system that is set up against you. The automatic assumption is that you are drug seeking. While that may be the case for some, every person deserves to be treated with care and dignity when they come for help. The injury is difficult enough. The shaming that is done is wrong. I have applied for disability and turned down twice now! Just filing for disability was very painful and the attitude is that you are scamming the system- no matter what the facts of the case are. It amazes me how some glide through the system. Maybe they don’t and it just appears as if they do. I only know that while dealing with the daily pain and the severe depression as a result of the pain and loss of any kind of life makes it difficult to wade through their sea of paperwork and the system alone becomes a full time job when the point is that you are not in any shape to do this! I admit to being so very overwhelmed and depressed as I try to navigate this system and to try and deal with the incredible pain that I desperately want a life back. This blog is my way of dealing with the pain and coping with the reality that I’ve been laying in this bed for over three years in terrible pain. I will explain it as the days go by.
Just a quick ‘about me’ piece. I had a congenital spondylosis. I inherited it from my mother most likely. I have always had pain that no one could figure out. I had a very physical job in the medical field and working in trauma and critical care areas along with being on my feet for 12-16 hours at a time was very painful after many years. I finally couldn’t take it anymore and after one particularly grueling shift, I was in so much pain that I HAD to be seen by a back specialist. He did the standard x-rays front, side, standing, bending. He discovered that L5 was fractured in two places! I had the lamenectomy, fusion with rods/screws done and almost 6 months later, my home flooded. I was not wearing the support brace at this point and due to very bad knees (from years of service) and slimy floors due to flooding, I slipped and fell down the stairs. That fall broke two of the titanium screws and bent the rods in my spine and left me in excruciating pain for two years until being suicidal convinced the doctors that maybe the screws were loose and I had surgery to remove the hardware only to find they were broken and a tremendous amount of damage had been done from the sharp edges of the snapped screws to my spinal cord. I have been mostly in bed and in pain for two and a half years now because to stand, walk and sit are incredibly painful. The most painful of these is sitting. So, here I am with my pain trying to survive as a mom and wife. Running a family while trying to hold it together from the pain.