It’s been a few months now since I went through surgery for my RSD, and I wanted to share the story of how things were with going through the surgery. This was the first time in my life that I had to do something this big, as I always heard about people having operations I was very thankful that I never had to go through one. Every time I had to fill out those papers at new doctor offices I could leave the question of ‘history of surgeries’ empty and I was fine with that. Though now that answer has changed. Here is my story of how surgery helped me, after seven painful years of RSD.
For years, people warned me of surgeries and how life would not be the same. How scary it is to go under the knife and how people die on operation tables. I never ever wanted one, as I always thought of the horror stories that people have gone through.
One very horror story comes from my own household. After my father went through a surgery, he was sent home too early and my mother found him covered in blood as his wound had reopened at home. She rushed him back to the hospital, where he was taken care of and sent home at a proper time. With stories like that, who would want to go into surgery?
Though, in 2008 when they came to me about the surgery for my arm, I was already going through pain for four years and I just wanted the pain to end. I was willing to break down and try surgery.
First, I went through two test surgeries. This should of only been one test surgery, though because of how long it was taking for the real surgery, they had to do it two times. The test surgeries did not count as the real deal. It was still weird to have a wire going up into my back. The end of the wire was attached to a battery pack, which I had to carry around in my pocket. It was freaky for those times when I had it, as I feared the wire getting pulled and at night it would almost always get unplugged from the battery. Though the pain relief from those test made me really want the surgery so much more. It was like a tease to have the test surgery and then having to wait for years for the real one to happen.
It wasn’t till Fall 2011, that I finally broke through the cycle of denials about my surgery and got the approval that was needed. Finally, a chance to go in and get my surgery done!
In early November, I met up with the doctor who was doing this surgery, Dr. Junn. He was through a hospital I never even heard of, so this was all new to me. I was hoping that my pain doctor would be the one doing the surgery. I understood that if this was the best and fastest way to get me into surgery, then I would have to trust my doctor’s choice.
Right away in the doctor office, they started to list all the things that could go wrong with this surgery. Only giving me more fears, more things to think about before going in for this dangerous operation. They had to put a wire into my spine, and if done wrong it could make it so I could never move again. These fears sat on my head, though at the same time all I could think about was how much the test surgery help. So, I still agreed to go into the surgery.
On November 18th, I went in for the surgery. Even though I was scared, I was so excited that it helped me with my fears. I got in there and sat and waited for the doctor to arrive. They got an IV in me, and different people would come in to talk to me. So much from what I was originally told about the surgery had changed. Originally, I was going to get my battery in my back left hip, though now it was going in my chest. I was never told before this day that they had to cut away bone in my neck. These new bits of news started to scare me a bit more, though I was still determined to get this surgery done with a new hope that I will be able to use my arm again.
The doctor arrived very, very late to the hospital. Though shortly after he got there, I was put to sleep. I do not remember a thing from the surgery, which is how it should be. When I woke up I was in a recovery room. When the nurse offered me a drink, I realized that not only was my neck in pain, but my arm was still in pain! When I got a chance, I asked for my family to be sent in back to see me, I looked up and smiled to them saying “it’s not turned on yet.” The look that went across my mother’s face told me there was something wrong.
My mother explained to me that the wire was lost in me during surgery. They did what they could, though I will have to come back later for a continuation of the surgery. All this pain I was going through, and it was not over? My mom had to talk them into keeping me over night from the surgery. So I was left in a room, as they allowed my family to bring me a Taco Salad for dinner.
This night in the Hospital was torture for me, as I realized just how limited my movement was. Trying to get up or down was hard. Trying to find away to lay down was impossible. I had no Internet to help amuse me and the TV didn’t really have anything of interest for me. Overall, it felt like torture. I could not fall asleep. Though, being my cheerful self, I would talk to anyone who came into my room. It was really late before I finally even attempted to go to sleep. I remember watching the time as I closed my eyes, only to get woken up a half hour later being told I had to go to the bathroom. I held myself back from snapping that I didn’t need a potty break, I needed sleep. Though I just got up with a smile and headed into the bathroom. As I feared, I was not able to go back to sleep.
When morning came, they got me breakfast and kept asking when my family was coming to pick me up. Though I was excited about the idea of going home, I also feared the idea of leaving the hospital while this bad off. My arm was still in a lot of pain from the RSD and my neck was a total nightmare. I could not sit up without someone taking both hands, yes even the one with the RSD and pulling me up. I was in no shape to go home. My bedroom was upstairs, and besides, that I sleep on a bottom bunk of a bunk bed. No one could pull me up from there if I need to get up. With a flight of stairs between me and the bathroom, it all seemed like a nightmare. Though they said I was ready to leave.
Once my family got there, I was taken home. The family agreed that I could not travel the stairs up to my room. So now I was to share a bed with my mom and dad. We looked like we were from the movie “Charlie and the Chocolate Factory” where all the family was sharing those beds. I was not ready to be home at all. I could not do anything without my family’s help. My mom and sister had to do everything for me. It was four days of sharing that bed with my mom and dad, before I finally fought my way up the stairs. Though I did not feel like I was all the way ready to be getting in and out of my bottom bunk, I did prefer to have a bed to myself.
It still annoys me that I was sent home that early from such a major operation. Where is the care that you hear that hospitals have? Did they really think I was ready to go, or was this because Workers’ Comp did not want to pay for me to stay in the hospital? Was my care hindered because of Workers’ Comp wanting to save money? I guess I will never know the reason they sent me home. I just know it wasn’t just torture for me, but also torture for my family having to see me in so much pain and not able to do much to help me feel better.
Just when the pain started to ease up and I got off the heavy pain killers, it was time to go into second surgery. This one was known to be a smaller surgery. Though that did not stop the fear. This was the difference between my first time going in for surgery and the second time. The first time, I went in without knowing what could happen, just knowing what people told me. Though now I just went through weeks of torture, of being sent home early, of not being able to move, of it hurting to eat or drink as there was pain in my mouth for some reason. All I knew was the first surgery was a nightmare, and one I did not want to repeat. Though as they say, I already went so far, I had to swallow my fear and get this over with.
This time the surgery went a lot faster. I went home that day, and was able to sleep in my own bed that night. True, the surgery was a smaller one, though my problems from this one came from the wound in my chest where the battery was put in it. That was where I hurt the most after this surgery. It was right away that the device put in me was able to be turned on. I found I could give high fives, shake hands, sleep, go over bumps in the car, have the window down in the car, hold my arm up in wind, all of these things I have not been able to do for SEVEN years!
While the surgery part was just as I feared, painful, taking time to recover from and leaving scars, the results were all I had hoped for! With only a few areas of pain still showing through, it was worth going through this surgery. I have not turned off the device besides for once when I tried to drive with it off and found it was better for me to leave it on while driving.
If you’re going into surgery for anything, please know that while the process is not all that thrilling, the results can be worth it. That’s what you’re going in for. Yes, it can be scary, though just close your eyes and remember that there are better days ahead of you if you just push forward and do the things that you need to do. No one deserves to live in pain or go through hell because of something that they can not control.
Now that I have this surgery I hope to be able to get my life going again, but there are still many others with RSD, without relief from this nightmare of pain. And even with this surgery, I get reminders often that I am still with RSD. So, all I ask now is that people become aware of it, and spread the word. RSD can not be left unknown as it affects millions of people and is very painful. Here are some videos from YouTube users about RSD.
RSD is real and we need people to be aware of this painful disorder. Please help spread the word about RSD awareness and share this link with people you know.
Please feel free to leave comments below, all email addresses are kept private. Thanks for taking the time to read this and watch these videos!
Thank you so much for sharing your story, and I really hope the spinal cord stimulator helps you as much as it has helped me. The pain is not totally gone, but it's much easier to deal with on a day to day use. I am finding there's some times where the pain gets the better of me and the stimulator is not much use on those days, but it does not happen often. I just call it a spasm, I know that's not what it is... and don't know if there's a proper name for what I'm going through on those days. Besides for that I've been able to do things that I have not been able to do in years like high five, write, go outside without a coat and so much more. I truly hope this helps you as much if not more! It's amazing what this surgery can really do.
Hi. I have RSD in my right leg/foot through the pelvis into the lower spine, as well as RSD in my right arm and partial neck. I just had my first trial for a Spinal Cord Stimulator, which is exactly what I think you had implanted. I need two separate batteries implanted because I need so many leads to cover all areas in my body. I am waiting for my permanent implant date, but my new surgeon and Medicare are both dragging they're feet. Thank you for sharing your story, it brought lots of hope to me. You are a strong person and it sounds like you have accomplished amazing things. I hope you continue to have pain relief, and that when they need to replace the battery generator that everything goes smoothly. I know the years of failed nerve blocks, having to take 30 pills a day, the physical therapy, the TENS unit, and so many other failed option get so frustrating. You are strong for enduring all that. I hate how I haven't walked in several years and can't hold things with my right arm. SO to the person who wrote that rude post Michele, You have no idea what your talking about. Reflex Sympathetic Dystrophy/ Chronic Regional Pain Syndrome is one of the most painful diseases known to man. It can lower your bloodflow rate to the point where cell tissue dies and then you need amputation to save your life. This disease has been proven by scientist to be more painful than Natural (epidural/medfree) Childbirth, cancer, and amputation of limbs. That's a fact proven by doctors and scientists. It weakens your bones and muscles, your nerves are causing all this damage. Spinal Cord stimulators can save peoples lives. Not only does it cause pain to decrease, it also causes vasodilation, which is the medical term for blood vessels opening back and allowing blood to flow through again. This can save people with RSD from having to get they're limbs amputated and an infection that goes into the blood. Lasik is a procedure to help people see well without glasses again, it doesn't save lives. The surgery Michele received is a life saving surgery, so yes it is mandatory to save life or at least make life livable without being wheelchair bound forever and crippling pain in bad cases of RSD. I know all this because my leg has such little blood that soon I will need an amputation because of infection if something doesn't stop the RSD symptoms. And I agree with the scientists about how painful it is, because I have gone through 6 kidney surgeries, many kidney stones, had my daughter with no epidural or meds and was in labor for 18 hours, had many 2 other surgeries, and NOTHING not even melanoma, has ever hurt me as bad as RSD. Fikile you should feel ashamed of yourself what you said was very hurtful. And FYI it isn't cosmetic surgery she got, its a different version of a pacemaker for the brain and spinal nerves as opposed to the traditional one that is for the heart. Its called a Spinal Cord Stimulator implant. So before talking about surgeries you know nothing about, do your research. Michele you are a wonderful fighter, congrats on the lessened pain, I'm sorry you had to go through this awful debilitating disease.
There are so many options for people, this disease has changed my life completely. Im looking for a way to be able to return back to that healthy college kid I was. Do you have any other options besides surgery the doctors are afraid. It has spread through my body!
I wish I could say I found another way that works, though for me the surgery was the only thing that helped longer than a week. They tried meds, nerve blocks, and tense units. It took seven years to get help. I never really wanted to go through surgery, but this has been the best thing for me. I hope that you find something, RSD is bad. I wish for a cure.
In order to be deductible, the coiemtsc procedure and related expenses have to be "necessary to ameliorate a deformity arising from, or directly related to, a congenital abnormality, a personal injury resulting from trauma, or a disfiguring disease." If expenses are not deductible under such provision, then amounts paid for insurance coverage for such expenses and other related expenses (laboratory tests, recovery procedures) are not deductible, and an employer's reimbursement of such expenses under a health plan is not excludable from your income. In other words, if this surgery was necessary to correct the deformity directly related to congenital abnormality or physical injury, then all the expenses related to it are deductible. (For example, LASIK and radial keratomy are deductible).
Um, yeah... and my surgery was directly related to my work injury and approved by worker comp... got my surgery already... so not sure the point of this post?