Tag Archive | brain

Learning to let go

It has been difficult to get motivated to write or do much of anything being that I have been more pain than normal. I am having a flare up that has caused by pain to remain high despite medications. My spasticity has also been high making it very difficult to walk and stand. I do my best to stay positive and not get grumpy or angry. Unfortunately, no matter how hard I work at it the guilt mixed with the pain wear me down and I do snap at those around me. Of course, this causes even more guilt. Learning to let the guilt go is hard but necessary.  We cannot take responsibly for things we cannot control. We must let go of the guilt and focus on the things we can control.

Flare ups for anyone living with chronic pain, be it from a SCI or an illness like Fibromyalgia, cause not only physical pain, but mental as well. For me it is difficult because it means not being able to take care of my family the way I normally do. It means not being able to do something I love, cook a meal for my family. Heck just getting up, showered, and dressed are major feats. But the physical limitations often lead to feelings of guilt and inadequacy. It is easy to see all the negatives-I can’t make the bed, I can’t get the laundry done, I can’t pick up around the house, I can’t cook a meal, and I can’t…

All these negatives creep in over time, but it is important to change that running line in your head to a more positive one and realize that you really do have an illness. When anyone of us get a cold or the flu we take medications to help and allow ourselves to rest. So why is it that we cannot do this when we have a flare up of symptoms? Admitting that I really do have an ongoing illness continues to be difficult, but through prayer and learning to give it to God I have been able to continue to move forward. Yes, I really do struggle with admitting I have a chronic illness, but my body reminds me every day. I am learning to change the” you’re a failure because you can’t… “story into look at what you are overcoming and continuing to do.  

It takes constant reframing of my thoughts. It is so easy to see and hear the negatives. It is important to recognize and deal with what you are feeling.Hiding and pushing your feelings aside only keeps them festering and making the story you hear in your head seem far worse that it really is.  By reframing the negative thoughts and feelings we can continue to keep moving forward. For example, When those around you who believe they are being helpful constantly say things like- “Your standing with your knees locked “followed by “you’re not picking your feet up”  or ”Get your feet under you , you are leaning to far forward.” And of course, I can feel the issues because my balance is off, my legs buckle and just standing is difficult. Instead of focusing on the negative I do my best to reframe my thoughts to something more like, “Look at you, you’re standing,” or “Wow, you just walked up hill and it was easy.”

It is perfectly okay to Give yourself a pass. Again, understand and realize that you are not choosing to do something. All of us that live with chronic pain/illness must accept that our bodies don’t care if we have plans. Our bodies are going to do what ever they want. So, take the time to rest and recover so that there will be better days ahead.

Be sure to treat yourself with kindness. Reframing your negative thoughts into positive ones helps tell a better story which will impact our emotional state. Remember our brain is powerful and it impacts what our bodies physically feel. Higher stress levels means more pain and a reduction in our ability to deal with the pain.

Reminding yourself and finding the things you can do is also of value.  Pain often interrupts our plans, but instead of getting angry and down focus on the things that you have accomplished during the day. We cannot fix the past, but we can adjust and make changes to our future. Find things like painting, gardening, or other hobby to get out and meet others or to relax.

Every step I take is a miracle that God has given me, and it is so easy to lose sight of how far I have come. It is easy to let the negative thoughts and guilt in and start believing them. This affects my mood and my pain levels. Learning to reframe my thoughts, pushing all the yuck out helps reduce my pain levels, makes for a happier day to day life, and makes my mood much better. Stop feeling guilty about the things you cannot control because this only stops you from moving forward. I encourage you to let it go.

Pain Is it real or just in my head

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  everything 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 doctors over the past few years that deal with my physical conditions of spinal cord injury, arachnoid cysts in my thoracic 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 everyday 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 and 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.

Chiari Malformation Awareness

I am sharing the below information with others to help raise awareness of Chiari Malformation. Although it is a rare condition more people are being diagnosed as a result of better technology. I was diagnosed several years ago, but as of late the condition has progressed and I am in the process of seeking a second opinion before proceeding with surgery.  Learning to live with this condition along with a spinal cord injury has made daily life a challenge.

What are Chiari Malformations

Chiari malformation is a condition in which the cerebellum and part of the brain stem push through the lower part of the skull. Normally the cerebellum, part of the brain that controls balance, and parts of the brain stem sit in a designated space at the base of the skull above the foramen magnum.

Chiari malformations may occur when the space where the cerebellum and part of the brain stem is smaller than normal, thus causing them to protrude downward into the upper spinal canal. As a result the flow of cerebrospinal fluid (CSF) may become blocked. Cerebrospinal fluid is the clear liquid that surrounds and cushions the brain and spinal cord. When the pathways are blocked is can cause a buildup of fluid on the brain called hydrocephalus or in the spinal cord called syringomyelia.

These malformations are uncommon, yet with improved modern imaging techniques and comprehensive exams physicians are beginning to make more accurate diagnoses.
Chiari Malformation type 1 is the most common type of the four possible types of the condition. Type 1 is also the only type that can be acquired. All other types are congenital.

Patients with type 1 normally do not have symptoms until late childhood or adulthood. This is because the malformation does not develop until the skull and brain have developed. On the other hand, patients with types 2-4 are often diagnosed in utero (during pregnancy), during birth, or during the first stages of infancy.

Symptoms

Patients that have Chiari malformation type I may complain of neck pain, headaches, balance problems, muscle weakness, vision problems, numbness or abnormal feelings in the legs and/or arms, ringing of the ears (tinnitus),hearing loss, dizziness, nausea, difficulty swallowing, facial pain, insomnia, and depression. Fine motor skills and hand coordination may also be affected.
Symptoms may vary from person to person and some may have no symptoms at all. The difference in symptoms depends on the buildup of CSF and the change in pressure on the tissues and nerves. For example, adolescent and adults may have no symptoms initially then later in life may develop signs of the disorder. Infants may show symptoms of any type of malformations. Their symptoms maybe difficulty swallowing, irritability during feedings, gagging or vomiting, excessive drooling, arm weakness, breathing problems, developmental delay and inability to gain weight.

If Chiari malformation type 1 if untreated may also result in the development of fluid filled cavities in the brain (hydrocephalus) or spinal cord (syrinx) which may eventually lead to syringomyelia. This can lead to irreversible damage to the brain or spinal cord.

How common are Chiari malformations?

In the past it has been estimated the condition happens one in every 1,000 to 2,00 births. However, the development of better technology and the increase use of diagnostic imaging has shown that the malformations may be more common. The estimates of actual cases is difficult as people born with the condition do not display symptoms at all or may not display them until they are in adolescence or adulthood.

Diagnosis

The most common method of diagnosis is the use of an MRI (Magnetic Resonance Imaging) in conjunction with the patient history, and a neurological examination. Sometimes a special MRI scan called CINE studies are needed to make the diagnosis. Additional imaging techniques may be used. Early diagnosis of Chiari malformation type 1 can lead to treatment before the formation of syrinx.

Treatment

The treatment of Chiari type 1 varies on several factors such as the severity of symptoms, whether or not syrinx (CSF fluid filled areas on the spinal cord) exists. For example, if a patient has no symptoms or neurological findings, the doctor ill often just observe the patient and schedule periodic visits to manage the condition. If the patient displays mild symptoms that are manageable, the physician may prescribe medications to help reduce the pain.

If the patient has symptoms that progress in severity, such as a decline in neurological function and/or they develop an enlarging syrinx, surgery may become necessary.

If surgery is recommended, it typically begins by making an incision is the middle of the back of the skull , and extends to about midway down the back of the neck. All the muscles are separated from the base of the skull to the fist cervical vertebra.

Next, a surgical removal of a portion of the cranium called a craniectomy is performed. This is done to enlarge the opening at the base of the skull and create additional space next to the brain to allow better flow of CSF. The neurosurgeon uses a specialized surgical instrument to carefully shave a small piece of bone about the size of a silver dollar. Next, the first cervical vertebra is removed. This called a laminectomy. At times, removal of additional cervical vertebra may be necessary.

Conclusion

Most patients with Chiari malformation type 1 often have no symptoms. The patient only finds out they have the condition after it is found during an evaluation for other non-related conditions.

Once a Chiari malformation is diagnosed, it is important to get an evaluation by a neurologist who then can refer you to a neurosurgeon if further treatment is needed. Early diagnosis and treatment of this condition is critical as surgical intervention for symptomatic Chiari malformation type 1 is most often successful when done early on. Many patients experience significant reduction of their symptoms after surgery and are able to return to daily life without activity restrictions.