Tag Archive | Physician

Helping a child fighting ALL Leukemia- the power of prayer

Learning to cope with a child (grandchild) who is fighting Acute lymphoblastic leukemia (ALL), has not been an easy task. Andrew Joseph Bay who is now three years old was diagnosed with leukemia in July 2013. His little body has too many lymphoblasts in the white blood cells. Malignant, underdeveloped white blood cells constantly reproduce causing overproduction of these bad cells in the bone marrow. A.L.L. causes damage crowding out normal cells in the bone marrow. It often spreads to other organs and can cause death. Acute lymphoblastic leukemia is most common in childhood with a peak incidence at 2–5 years of age, and another peak in old age. In A.J.’s cause he began having severe stomach pain and unexplained anemia at the age of almost three.

It took the doctors several week and many trips to the urgent care to get a diagnosis. AJ kept complaining his stomach hurt. First, the doctor told mom it was just a virus and to take him home and it would pass, Next, visit they decided to draw some blood. This time they decided that AJ was anemic. They told his parents again to take him home and begin to give him iron.

After another, week passed AJ began to become very pale and did not want to eat nor play. His parents decided to take him back to urgent care. This time mom told them they needed to do more tests as this behavior was not normal and there was something really wrong. The doctors appeased mom and drew more labs. They sent the family home and told them to continue to give the little guy iron and watch him. AJ was not improving.

A few days later on a Tuesday in mid-July his mother received a call at work. They told her she needed to go home and get AJ and bring him to the Children’s Hospital at Loma Linda University Medical Center immediately because they needed to admit him as they believed he had Leukemia. By 6 pm that evening it was confirmed little AJ had ALL leukemia.

AJ spent the next two weeks in the hospital having tests run and beginning to receive chemo therapy. They had to draw blood every few hours for testing. The took his vitals every two hours so sleeping well was out of the question. AN adult had to be present with his at all times so mom, dad, and grandparents had to all take time off work to help.

Watching this little boy go from a rambunctious two-year old to being lethargic and lifeless was heart wrenching. He did not want to do much of anything except be held and watch movies. The little moments of a smile or “I want to play with my truck,” were cherished and still are cherished. During the first two weeks AJ had to often had be restrained by the medical staff as well as family so that his blood could be drawn, IV’s could be placed and changed, or to give him his oral medications.Trying explain to a 2-year-old child that he has to take all this medicine is almost impossible.

He was placed in isolation. He could not have any child visitors nor could he leave his room. We were told his ANC was zero. Another new term. So what did this mean? To us it meant we had to wear masks, gowns, and had to make sure his environment was as clean as possible, but it also meant is that we all had educate ourselves and understand what was really happening.

The term ANC is short for Absolute neutrophil count. This is a measurement of the number of neutrophil granulocytes. Neutrophils are a type of white blood cell that fights against infection. This became a new way the medical staff and family judged how AJ’s immune levels were doing. Chemo therapy causes the ANC to drop over-night sometimes. A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells per microliter is considered as a high risk of infection. Neutropenia, which is the condition of a low ANC, is the most common measurement used in the setting of chemotherapy for cancer. So, now the family and doctors talk in terms of AJ’s ANC as to whether or not AJ can join if family functions.

Everything has happened so fast and continues to happen fast. Our family continues to band together and help. We have put AJ on several prayer chains. We also pray for him ourselves. It is so easy to question God as to why any of this is happening or why such a young life is having to deal with so much pain. None of us can say those thoughts have not cross are minds, but we continue to be trusting and faithful. It has been almost 4 months and AJ is still with us and fighting.

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.

Things to never say to a Fibromyalgia Patient…

As someone who deals with Fibromyalgia daily there are just some things I wish people would stop saying to me and others that have the illness.
1) Fibromyalgia isn’t a real disease. Well, let me say for all of us who suffer from it, IT IS REAL! The pain and fatigue are real. The sleepless nights are real. Also, the FDA has approved medications to treat Fibromyalgia and they generally don’t approve medications for imaginary illnesses.
2) We all get aches and pains as we get older. Yes, we all to get more aches and pains, but the pains most of us with Fibromyalgia feel are intensified. And for a great many of us we begin to experience pain at an age when we shouldn’t hurt.
3) If you sleep more you will feel better. Well, sleep is important, but unfortunately the ability stay asleep is a challenge. Often even after a full night of sleep people with Fibromyalgia still do not awake refreshed because the body does not get into the deepest stage of sleep. Therefore, even if you manage to stay asleep for several hours, you’re most likely not going to awaken feeling refreshed. This is the reason that sleep aids are often prescribed.
4) You need to get more exercise. Most fibromyalgia treatment plans include exercise, but it must be approached slowly and carefully to avoid triggering a flare.
5) You don’t look sick. If I we let ourselves go and really showed how bad we feel then people would not want to be around us. Yet, when we try to focus on feeling better and but on a “brave face” then we do not look sick. I know that for me personally when I do my hair and make-up I tend to feel better even if I have to rest afterwards.
Our families and friends mean well. This is a note for them. Please be considerate and think before you speak. It is not easy for those of us with the illness. It can also prevent a very negative response for the person with the illness. People tend to be a bit grumpy when they do not feel at their best.

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.