Tag Archive | Neurology

Learning-to-deal

Each day is different. Some days are great in that the pain is down usually around a 3 to 5 on the pain scale. Other days no matter what I do the pain remains high at about 5 to 9. There is no reason for it as my medications remain the same. Why? This is the one of the questions that plague me. I am learning to deal with so many things, but the one big thing is letting go of the why and learning to live in the now. This is beyond difficult.

Some days it feels like God is gone and has left me. He hates me. He not only took the use of my legs, but has allowed me to continue to hurt at levels that are unbearable at times. I have become isolated from those around me as their lives cannot accommodate someone like me who is slow moving and unreliable because the pain. My only communication with “friends” is often via things like Facebook or Instagram. It is a lonely place to be. The reality is people don’t just want to sit around watching TV, playing a game or talking with someone who is hurting because we are not fun to be around. Besides their lives don’t have time for people like us who are in constant pain and disabled.

Learning to let all of that go and see the “bright side”  is not easy. Realizing that God is still there and He really does love us seems like a dream. For me, deep down I know that God is real and He loves me. The enemy loves to sneak in and make me doubt everything. So often questions like, can my family still love me the same? How can I still be whole? How can I take care of my family as I can barely take care of myself? Each day seems to bring new questions and doubt. It sucks. It doesn’t help when the people you love are constantly telling you things like- Pick up you feet, bend your knees, don’t bend over and pick things up. As for me, I already know my body doesn’t work right I really don’t need to be reminded constantly.

So how do I let is all go? I don’t know at this point. Each day all I can do is pray constantly and do my best to move forward. With God’s help it is my hope that I will find a purpose for my life and I can learn to let all of this go accepting what is happening to me.

 

Dance, Dance , Dance

Having lost the feeling in my legs and living in pain made the thought of dancing seem impossible. My husband and I attended a Halloween party over the weekend. I was just  excited and happy to be there as last year I was in the hospital recovering from one of the multiple surgeries.

As I sat next to my husband watching people come into the party dresses as various characters, I turned to find an old childhood friend. She recognized me immediately, we talked and  made me smile and laugh. She vowed to get me up to dance. My fear that I was going to be unable to do so set in. How could I dance being that I walk with a walker and I can only feel my left leg? At least my pain level was fairly low at a 5.

I stood next to my husband near the seating area and moved a bit to the beat of the music. Oh, how I missed dancing and moving. After all, I was a dancer most of my life performing in various places over the years. It has been one of my the biggest losses. Loosing the use of my legs, not being able to feel or move is one of the hardest things I have had to deal with. The thought of not being able to stand cheek to cheek with my husband and move slowly to the music help bring my spirit down.

Standing and moving felt amazing. It was a bit scary, but invigorating at the same time. My pain level remained low at about a 5. My friend came over and signaled, “Let’s go.” So I followed her with my walker out onto the dance floor. I began to move to the music. It felt great. I had to keep looking at my feet as without looking at them my brain has no idea where my feet are in space and I will fall over. I held on to my walker and began to move my feet and body. It was an amazing feeling. I never thought I was going to be able to do this again. But yet again, God blessed me with a special gift.

For the brief moment in time I felt great. My pain was low, my legs held me up and moved to the beat. I smiled and felt alive. I will cherish this moment as I don’t get many of them. So thankful for my blessing. Lord, thank you for all you give me. I still struggle from day to day as my pain fluctuates. I only hope that as I continue to go to physical therapy that my legs with get stronger and work better. I hope that I will move from a walker to a cane. That I may  regain some mobility and self-worth.  I hope that my pain level will drop so that I can enjoy more of my life. For now all I know for sure is that God continues to be with me and watch over me. He continues to help heal me. For this I am blessed.

 

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.

Life sometimes takes turns

In the past few months

In April after a long discussion with my Neurosurgeon and husband I decided to go ahead with the surgery to remove the Arachnoid cysts which were growing in size and put more pressure on my spinal cord.  The two known cysts had formed in the Arachnoid space in my thoracic spine. My symptoms  of numbness in my legs, gait disturbances, feeling of spiders crawling down my back and legs, and over-all pain had increased as well making the decision for surgery fairly easy.

The procedure was explained.  A  small 2-3 inch incision would be made down the middle of my back, then the spiny processes would be removed at T4-T7, and then the cysts would be drained and removed.  The spiny processes would then be put back into place with small screws. The procedure would last about three hours in length. I would then have an overnight stay in the hospital.  I would have some physical limitation of no lifting anything over 5 lbs for at least six weeks, no strenuous exercise for 6 weeks and no driving for at least a week.

On May 3rd the surgery was performed. The surgery took about 3.5 hours. There was one complication in that I bled more than they thought and two pints of plasma were required. The doctor stated that the surgery went well. He stated that the cysts were a bit more tangled than expected, but despite that all went well. I was up and walking the next morning. I felt pretty could minus the soreness  at the incision site.

I was discharged home later the day after my surgery. My discharge instructions were to walk as much as possible, no lifting anything over 5 lbs., no bending or reaching due to the fall risk, and to rest as much as possible.   I was also discharged with several medications Neurontin 600 mgs twice a day, Amitriptyline 20 mgs at bedtime, Flexeril three times per day,  and Hydrocodone 10-325mg every 4 hours for pain. Over the course of the next 7 days I appeared to be healing well and felt pretty good. I was doing everything I was told.

Second surgery

On May 10th I felt  more sore than I had the previous day. I was still feeling pretty good. My family even celebrated Mother’s Day on Saturday May 11th with a nice dinner. It was wonderful to see everyone. I continued to become more sore over the next few days. On May 12th, Mother’s Day, I got up and took a shower anticipating going to church and celebrating Mother’s Day.   The cramping in my back became so severe that I knew something was wrong. My husband agreed that we should go to the ER.

I was taken back after waiting almost two hours in pain. The pain increased with each passing moment. I was immediately connected to an I.V. and given the pain medication Dilaudid. The pain was reduced, but the nausea that this med created was horrible. I was given Zofran which helped with the nausea.  Another nurse came to check on me later and my pain had increased. She stated she could give me more Dilaudid. I told her that it made me very nauseous. She said she could dilute it and push it slower over a 2-3 minute time frame. I agreed. It worked and no nausea.

After several tests including an MRI it was determined that the cysts had reoccurred and a second surgery would have to be performed. I was admitted to the hospital again. The next morning they ran several more tests and attempted to get my pain under control with using a combination of oral pain meds and Dilaudid. My husband and I both made sure that the nurses diluted the Dilaudid and pushed into the IV slowly.   My doctor came in later that day and stated that I was definitely going to need a second surgery.  I was back in surgery the next morning. The doctors explained that the he used a microscope to make sure the cysts cleaned out. My incision was larger now and closed with staples instead of sutures.

After spending 5  days in the hospital. I was discharged home with the same limitations as before along with a long list of medications.  I was now taking Neurontin 600 mgs twice a day, Amitriptyline 20 mgs at bedtime, Somma 350mg every 6 hours, Robaxin  750 mg three times per day,  and Hydrocodone 10-325mg every 4 hours for pain.  Although when I arrived home I found that I could not lay on our bed because it was painful to lie on the staples. Also, it was very hard to roll in either direction. I could not sit nor stand for two long because my back would begin to spasm. But as time passed, the incision continued to heal and sleeping in bed became much easier and the use of pain medication was reduced.  But it was not over yet.

Third surgery

I began to really feel much better. I even went to the local market night with my family. I walked around and was able to go out to dinner with them. It had been 11 days since my last surgery.  But the next morning that all changed. I began having severe cramping in both my legs as well as spasms in my back. Again, I returned to the ER.  I was immediately admitted. This time a mylogram was done to see if they could determine exactly where the problem was. At the same time a spinal drain was placed. It was the hope of the doctors that the drain would relieve the pressure by removing the excess spinal fluid from around the area. This was not a painless procedure.

For the next two days spinal was drained every 4 to 6 hours.  The pain it caused when it was drained was incredible. It caused my legs and back to spasm as well as light-headedness.  On the third day it was finally decided that the drain was not working so it was removed and the muscle relaxants and pain meds were increased to control the spasms and pain.

After much discussion the only option was surgery.  The doctor stated he needed to place a drain. The only option was not a good one. He stated that a shunt would be placed in the spinal cord and drain into my stomach via a tube. He was not keen on this as there is a high failure rate as well as another surgical incision had to be made into my abdomen.  He left my husband and myself feeling  scared and unsure of what this really meant.

Later that afternoon my physician returned. He stated he came up with something had never been done but he was confident it was the best of action. He stated he was going to place two pieces of titanium tubing in the arachnoid space allowing for better flow and reducing the risk of the cysts returning.

It was a much better option than having a shunt drain into my stomach. So I was prepped for surgery the next morning.  The surgery was a success.  I spent two more days in the hospital. I returned home with much soreness, but better use of my legs and noticed a reduction of spasms.

It has now been 3 months since this last surgery. I am getting back to a more normal life. I still have pain and spasms but they are far less. I would consider this success. I can at least now enjoy more things in life such as hiking, playing with my family and kids, swimming and hopefully more things to come.

Cervical Spine Fusion (C3-C6)

As each day passes the pain comes and goes. Some days I feel like a run and play all day. Yet on others days I can barely get out of bed and I have to push myself to function. It is scary to not to know what will happen next.
A few months ago I faced a new discovery that my spinal cord was being compressed in three areas in my cervical spine. This was discovered after suffering from headaches every day for about 6 mos. as well as diminished function in both arms and hands as well as a visual disturbances. Often I could not even pick up a pen without pain or inability to grab things. My arms often tingled and felt heavy. My vision fluctuated so much that on some days I could not even see my computer or read a book.
I was already taking Gabapentin for the spasticity in my legs. So this was increased to see if it would help. As for my headaches, everything was tried to stop them. I even endured weekly injections of Lidocaine into the back of my head at the base of the skull on each side. The headaches were relieved for a few days at a time, but always came back. I was placed on combination of Amitriptyline and Zanaflex to see if it helped with the pain and muscle spasms. The medications made me so sleepy that I could not function for the first week. After the first week I was able to function a bit better and some of the pain subsided. Losing some of the symptoms was a relief.
The neurologist finally suggested an MRI because the symptoms were getting worse even with the medication. About a week after the MRI I was called and asked to come in. I was told that they had found that my spinal cord was compressed in three areas in my cervical spine. I was referred to a Neurosurgeon.
On my first visit to the neurosurgeon it was suggested that I needed surgery. By this time I was willing to try anything and agreed to have the surgery. It was explained that I would have an incision made to the front of my neck (about 2 inches long), and that three disks would be removed and replaced with cadaver bone grafts. Then the doctor would insert a metal plate with screws and fuse my vertebrae from C3 to C 6. I would have to wear a hard cervical collar and not be able to drive for six weeks. This all sounded scary, but I knew this was the only way I might get relief.
Having the surgery was a great decision. I only stayed in the hospital one night. I was able to get up and move the same day of the surgery. The pain was minimal. I followed what the doctor said exactly and wore the collar and did not drive for six weeks. I noticed immediately that the headaches were gone. After about the first week the pain in my arms was gone. Slowly the strength that I lost in my hands and arms returned. I was told there was a possibility of limitations of mobility in my neck. I am glad to say that I have none. I am so blessed.
It has now been 4 months and I have had no headaches, my vision has finally stabilized, and I can use my arms and hands without limitations. I now have a small scare on the front of my neck, but that is a small price to pay for what I have gained. I am still facing further surgery to correct the Arachnoid Cysts I have in my Thoracic Spine. God had truly blessed me with a great Neurosurgeon and family who are in this with me.

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.