As each day passes my physical pain never seems to go away. The question I ask myself is, Is my pain real or just in my head? I ask myself this because I have been told over and over again that, your brain controls and you have the ability to control your brain. Well, when you have a physical condition that creates pain how does that constitute that your pain is all in your head?
I have been to so many docotors over the past few years that deal with my physical conditions of spinal cord injury, arachnoid cysts in my throacic spine, and nerve damage related to the 8 surgeries to decompress my spinal cord. Some of my doctors recognize that my pain is real and others like to pretend that my pain is going to go away. Regardless I am still left with the limitations that my pain creates.
Some days I am able to move around with less pain than others. Often I am asked, why is your pain better? Why aren’t you hurting as bad? Why are you moving better? The response of ” I don’t know” is never acceptable. Instead I often hear, Well, you’re the only one that tell us why Or What did you do different? When I explain that I have done nothing different, that I have taken all the same medications in the same order as I do everyday it is still not acceptable. The frustration is beyond what one person should have to deal with. Why don’t others get that if I could figure it out I would duplicate it so that everday would be better?
All I can do is keep moving forward. Continue to deal with my pain with the use of medications, natural remedies, and daily exercises to help strengthen my brain’ s communication with my legs and back. Right now my brain doesn’t fully realize I even have legs. With the loss of proprioception in both legs, my brain forgets things like I am standing, which causes me to fall if attempt to do “normal things” like try to stand and take a picture or walk without look down at my feet or legs.
My brain is also hyper over sending signals which make my nerves overactive. This causes my back to feel like my skin is being stretched and it is on fire. Even the slightest touch feels intense and painful. Putting on clothing hurts to the point of giving me the chills at times. It also causes my right leg that is almost completely numb and heavy to feel like there are a million spiders with sharp needles on theirs legs to keep poking me repeatedly. I am prescribed Gabapectin 700 mg three times a day for my neuropathic pain in conjunction with Oxycodone 15 mg every 3.5 hours to control pain. None of this works well. I find that the Oxy takes about an hour to start working than only works at its full capacity for about two hours then decreases quickly. This leaves me in pain most of the day. It is often hard to get motivated to do much or to really want to be around people.
So what is left? Self help and prayer. It is easy for me to understand how depression can set in for quickly. This is where the power of prayer and hope come in. Continuing to have hope that I will get better and that new medications and/or treatments will be discovered to help me an others like me are what keep me moving forward. God has promised that if we have faith and ask Him to heal us that it will be done. ” And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, the will be forgiven” James 5:15. Having hope is what helps me continue each day even though I know I will wake up in pain and end my day in pain. My prayers continue to be answered as each day I improve even if it is only a small bit. I went from being mostly in a wheelchair to walking with a walker in just two months after my 8th surgery. I refuse to give up as I know God will keep His promise.
It is now just over two months after my 8th surgery in less than a year decompress my spinal cord from Arachnoid Cysts which have been compressing spinal cord. I continue to have almost no feeling in my right leg other than it feeling heavy. I have lost the ability to feel hot and cold on my right leg from the waist down with one exception of a small space on my inner calf where I feel touch and slight temperature. My left leg is numb in the thigh area but mostly has feeling. I continue to have proprioception loss in both legs. What all this means is that standing and walking are extremely difficult even with assistive devices such as a Swedish Knee Cage, ankle braces, and walkers. The most frustrating part is that after all of this the amount I pain I have is unexplainable at times. I live at a pain level of 4 to 5 most days with it increasing several times during the day to about an 8 sometimes more.
Proprioception loss means I have difficulty knowing where my legs are in space which affects my ability to know the position of my legs. This affects my ability of motion and equilibrium. For example, if a person is blindfolded they can tell if the leg/ arm is moved up or down or to the right or left. They also know if their toe is up or down. With the loss of proprioception I cannot do this. Through therapy proprioception can be improved. I am currently working on this yet again. Some of the things I do is wear weights around my ankles when I walk at home. This does two things. One it helps build the muscles in my legs and hips which became very weak after my surgeries. Two it gives sensory input into my pain by on my leg and hip as well as giving it a different feeling. Another thing I do is the spell out the alphabet in the air with each foot several times a day. This also helps make connections between my legs/feet and brain. I also do many other exercises at home and at therapy to improve my muscle strength and coordination.
Along with the proprioception problems I continue to have lots of pain. My pain now appears to be more nerve pain with less spasms. My nerve pain feels like burning. My back often feels like it is on fire. So often when I walk, each step sends signals of intense burning running up the back of my leg, through my buttocks and up my back mainly on my left side with it radiating to the right side at times. There are times that even while sitting do nothing or sleeping that the intense burning sensation happens. By the end of the day I am exhausted because of the pain. I am currently taking several medications to help combat the nerve pain as well as the pain caused by my spasms. Currently I take Neurotin 700 mg three times a day for the nerve pain as well as Oxycodone 15 mg every 3 1/2 hrs. with acetaminophen 325 mg. Yet, the pain continues to be intense and out of control at times. I have already tried Lyrica, Cymbalta and amitriptyline with no real impact. The side effects of the medications were awful. The worst one was Cymbalta.
I am not sure what to do next or if there is anything out there that can help. It is frustrating and at times debilitating. All I can do is pray and ask God to protect and continue to heal me. I have gotten through each day by God’s grace even the days when I have a huge set back such as a fall. God has prevented me from having any new injuries and kept me from having to have another surgery. His love is what keeps me going each day. I am thankful He is with me. May He continue to love me and help me. My faith is sometimes weak and I want to give up, but He doesn’t let me as His presence is felt and I get a renewed push forward.
Time has passed and I am still living in pain. Recently I had returned to see my Neurosurgeon for follow-up on my 5th surgery and the symptoms indicated there was a major problem. After getting an MRI it was confirmed. There was a large Arachnoid cyst at T4-7 compressing my spinal cord. There was only one possibility, yet another surgery. Arrangements were made and I was admitted to the hospital.
The surgeon explained the procedure as normal, but also added that he may leave the existing tubing in place instead of replacing it. What this means for me is that I will have two different drainage devices instead one working one. The anxiety caused by knowing that so have two things that could fail is enormous. Yet, I have been feeling rather calm. God has blessed me through this. There are so many times I am overwhelmed and then I instantly feel calm.
Apparently, my surgery took longer than expected as my surgeon performed a Duraplasty . A procedure that is not done in the thoracic spine, but in the head and cervical spine. The Dura is the outer covering of the brain and spinal cord. So in this procedure the Dura is cut open and a patch is sewn in to give more room for the spinal cord. The surgeon opted to try this as he said that amount of scar tissue I had developed was incredible. He believes that this should give more space for my spinal cord and reducing the amount of new scar tissue.
Prior to surgery I was able to walk and care myself with minimal help. I had some proprioception deficit in my left leg and total feeling in my right leg. Now I am completely numb on the right side and have proprioception issues in both legs. This means starting over with intensive Acute rehab. and then eventually to outpatient therapy.
It is painful both physically and emotionally. I have to stay at the facility where I am away from my family, friends, and dog . I can have visitors which helps, but they can only stay for a short time. This leaves me alone most of the time. But I am never really alone, as I have God. I talk to Him all the time asking Him to guide me, give me strength and continue to heal me. He is awesome! The power of prayer is real! Thank you Lord for all of you love and sacrifice. Amen!
Another day with pain and waiting for yet another MRI and still have tons of spams with lots of spasticity and pain. I spend more time in hospitals and doctors offices these days. If it is not imagining, then it physical therapy or pain doctors. Long days filled with little good news.
Today was no different. Back to surgery I go. This will make the 5th surgery in the last 7 months. Per the MRI I have a large cyst that is compressing my spinal cord. This explains why I have increased weakness in my right leg causing me to be more off balance. Plus there is the increase in spams which equates to more pain.
It is really hard to stay positive and to be thankful. I know that God is there and he loves me, so when is this going to stop? When is God going to help me / heal me? Maybe never in this lifetime but for now all I can do is pray and have faith. Be blessed!
It is so hard to get up everyday an know that no matter how hard you try the pain will come back. Today is no different. I awoke in pain and was able to get it to subside long enough to get in the shower and then had to rest. After a short rest, I was able to finish getting ready. I still do everything I can to feel better, like put on nice clothes, do my hair and put on my make-up. Yet, it doesn’t take long for the pain to settle back in.
I continue to take all of my medications with no real relief. I take so many meds. everyday as per the doctor’s orders. I take medication around the clock whether it is a muscle relaxer or pain killer they just don’t seem to work for long. The pain medication takes an hour to work and runs out in the last hour only giving me about two hours of some relief. The muscle relaxers Tizanidine and Robaxin only seem to help very little, because the spams are what cause the pain. If I could just get all the spasms in my back to stop I would be able to do so much.
How I would love to be able to stretch, walk, and exercise more. I would love to be able to go outside and tend to my garden even if it was just for a few minutes day. I long to be able to be able to on a walk around the block or be able to get on the elliptical for more than two minutes on some days. I am really ready to start getting totally better. I am ready to prove to those closest to me that all this pain is real and not in my head. That I cannot just breathe it away or think it away.
So for now I will just keep my faith and pray. I know God is there and will heal me in his time. Each day is another day for the pain to get better. But understand there are days that are so hard to get through and I feel like I just can’t do it, but with God’s help I do.
After 4 major spinal surgeries in the last 7 months, I am still left spasms in my back and legs that can bring my pain level to 15. I had the first surgery to help stop all the spasms and pain, but now I have the scars,implanted devices as well as the spasms and numbness with proprioception problems with my left leg.
Every day I get up hoping that today will be the day with less pain, but that comes to a sketching halt as soon as the spasms hit. Most of the time my pain stays around a 5 which I can manage, but often they hit at such I high level that doing just basic activities almost impossible. I take medications to help with the pain, but that often doesn’t really work.
I realize that I am only one month out of the last surgery, but I have been living with pain off and on since 2001 when I had the original spinal problem. Even though the pain does affect my family, I am the one that has to deal with it all day every day. They all have an escape, be it school or work , they can get away, whereas I am home most of the time alone with the dog to deal with the pain. Day by day I am learning of ways to deal with the pain. Sometimes getting up and moving works. Others times just resting or finding a certain sitting position works. I also use CBD rubs to help.
I just have to keep trying. Each day has to get better. So for now I just have to learn to live from day to day.
This was taken about a week after the 4th surgery in 7 months. the small scar to the right is where the device is implanted.
I send you smile for you just being there
by my side when I”m down and showing you care.
I send you love, for caring for me when I am sick or hurt,
Or just wanted company.
I send you a rainbow for saying to me-
The sun needs the rain, for a rainbow to be.
I send you the world,
for just listening as my tongue whirled.
Dreams really do come true,
for a friend takes it all ten returns it to you.