Wednesday, December 21, 2011

Sheesh!

Got a call from the school Zachary is experiencing pain. He's crying and in the office. What the crap!! He hasn't had pain during school in a long time. Weird! Took his TENS to him and gave him a Benadryl. He's resting now.

Word from John's Hopkins

I will do my best to relay the information I received today from Dr. Jordan. There are three layers to the lining of the sac that incases the spinal cord and the brain. The thinnest layer called, the Arachnoid layer is the layer that is adhered to Z's spinal cord, it is a very small adhesion (not as bad as we had originally thought) and this layer is thin like a piece of tissue paper. Also, there are nerves that are pushed up against the cord. 

It is thought that this layer also has a small tear allowing clear fluid to leak into the subdural space. This ... is what they believe is causing the inflammation which causes Z's pain. If this tear were in the dura itself it could be repaired, but because it is in the subdural it is not in a fixable place.


Dr. Jordan feels that there has to be something that can be done to manage Z's pain better. She wants to have another MRI and spinal tap done to see if there are any other ongoing issues and to see if this is calming down. His last MRI was in August. As long as Z isn't getting any worse she would like to see him again in February or March. In the mean time she is going to find out what she can from other doctors who specialize in the spine to see what else can be done. She doesn't think that this small section that is adhered to Z's spine is the only thing causing his immobility. The immobility that Z has is very close to a rheumatoid disorder called ankylosing spondylitis, 



she isn't saying that Z has this disorder just that he has some of the symptoms of this disorder and Dr. Jordan wants to find a specialist to see if they can help Zachary with his mobility.

What Is Ankylosing Spondylitis?

Edited by Guy Slowik MD FRCS. Last updated on June 28th 2011
Ankylosing spondylitis is a form of arthritis that primarily affects the spine. Spondylitis is an inflammation of the vertebrae, which are the building blocks of the spine.
  • Spondylos is the Greek word for vertebra
  • Ankylosing, from another Greek word, agkylosis, means causing stiffness and immobility of a joint
Inflammation is the body's response to a variety of causes of irritation or injury. In this disease, the inflammation causes:
  • Swelling
  • Stiffness in the joint between the pelvic bones (the ilium) and the wedge-shaped bone at the base of the spine (the sacrum)
  • Pain
  • Difficulty moving
Ankylosing spondylitis also can cause inflammation of the eyes, lungs, and heart valves.
Here is how ankylosing spondylitis progresses in the body:
  • Ankylosing spondylitis causes inflammation of the ligaments and tendons where they connect the vertebrae.
  • This inflammation causes some damage to the bone, and the body heals this damage by growing new bone.
  • This bony growth replaces the elastic soft tissue and can fuse the joints of the vertebrae.
  • This fusion causes further stiffness and pain.
  • Stiffness and pain usually begins in the pelvis and near the base of the spine and progresses upward through the back to the neck.
  • It can also affect the hips and shoulders, the other larger joints of the arms and legs, and the heels.
Ankylosing spondylitis is a relatively uncommon disease that usually strikes in the late teens and early adulthood. It can be mild or somewhat severe. Early diagnosis and treatment can control the pain and stiffness and reduce the possibility of major disability.
Again, Dr. Jordan isn't saying that Zachary has this disorder just that he exhibits some of the symptoms, and will be talking to her colleagues to see what our next step will be.

Saturday, December 17, 2011

How Often?

Zachary uses his TENS about 4 or 5 times a week in the evenings and usually on Sunday after an active Saturday. He takes a Benadryl when as soon as the pain hits, in hopes that it doesn't become unmanageable

Thursday, December 15, 2011

Home Therapy

Zachary's therapist thinks that if Z does his exercises at home everyday he won't have to go back to therapy. So? We'll give 'er a try!

Friday, December 9, 2011

Figuring out the Tummy Troubles

Zachary and I made our way down to Dr. Kelly Thomsen, who is a gasto doctor. She said that Zachary seems to have some constipation and thinks that he may have some irritation due to possible peptic ulcers she has prescribed Miralax and Prilosec. If he continues to have problems she wants me to bring him back to see her.

Thursday, December 1, 2011

A Letter Sent and a Blessing in The Making

Zachary's teacher called me yesterday and asked if his class could do a service project to help cover some of Z's medical expenses ... This letter came home today.

4th grade always does a service project during December instead of exchanging gifts within the classroom between students. Therefore, you will not need to buy a gift for a student in our class. However, we are collecting donations for a special cause for this year's project. We are collecting money for a student in Fourth Grade with Superficial Siderosis, a painful and rare condition caused by damage to the spinal cord. This student is the only known child case with SS. As you can imagine medical bills are mounting for the child's family (he has six siblings) We will be taking donations from now until Dec 22. Teachers will ensure that the money gets to the proper place. You can read more about this child at the following web address: 

http://www.hug-z.blogspot.com/ 

I just want to say ... with prayer comes answers, He knows our needs and He always provides a way!

Saturday, November 26, 2011

Tummy Troubles

Zachary has been coming to me now every morning and every evening with stomach aches, either he has gotten into the habit or there's something going on. Oh, I wish December 9th would hurry up and get here. Zachary goes in to see a gastro doctor and then hopefully we will get to the bottom of all this tummy trouble.

Tuesday, November 22, 2011

The Back Pain and a Little More Information

Zachary's Physical Therapist worked on his lower back today he seems to be having some pain there and when she was working it she noticed there was tightening of his muscles around that area. She also let me know that Dr. Jordan did speak with her about Z's therapy and made some suggestions to reduce some of the stretching at least until the group of doctors have come up with a medical plan for Z. She also said she wasn't sure if during the trauma the lining adhered to the spinal cord somehow or if there was a bleed that caused it to adhere. She also said that would be a question they would probably never have an answer to. (Chicken Before the Egg).

I took notice today when Zachary was emptying the dishwasher, before, I guess I just looked passed it with the not knowing what's going on attitude so things should be fine. Now, I worry every time my son moves. Will he cause a bleed by doing that and if he bleeds will more of that lining get stuck to the cord? I saw how he had to put those dishes into the dishwasher and inside I cried. He has to sit on the floor to put the pans and silverware in, by standing and bending over to do it he has to bend at the knees and his knees get all in the way so that he can't reach to put them in without just dropping them in, so to the floor he ends up going. It's very heartbreaking. All I want is to be able to let that accident go, every time we go to the hospital, every time my son screams out in pain, every time I watch him in physical therapy, the memories and the thoughts of that day come flooding back.

Sunday, November 20, 2011

Pain at Church & Research

Zachary complained of stomach pain this morning and his back was hurting today at church I gave him a Benedryl and put the TEN's unit on him during sacrament, he used it during the rest of church.
I did some research today to see what I could find that would explain Z's condition or even help it. I'm no doctor, but I have to do something I can't just sit here and wait. Reseaching keeps the helplessness and anxiety at bay. This information is just stuff that we think might be what Z has or things that might help him.  
The surgical treatment of SS depends on early identification of the bleeding source. Surgical excision of the offending lesion (neoplasm or vascular malformation or pseudomeningoceles) and repair of dural defects are logical therapeutic strategies.  http://www.ajnr.org/content/31/1/5.ful
Syringomyelia / Tethered Cord
Post-traumatic syringomyelia and tethered spinal cord can occur following spinal cord injury.  
It can occur from two months to many decades after injury.  The results can be devastating, 
causing new levels of disability long after a person has had successful rehabilitation.  The 
clinical symptoms for syringomyelia and tethered spinal cord are the same and can include 
progressive deterioration of the spinal cord, progressive loss of sensation or strength, profuse 
sweating, spasticity, pain and autonomic dysreflexia (AD).
In post-traumatic syringomyelia (sear-IN-go-my-EE-lia) a cyst or fluid-filled cavity forms within
 the cord.  This activity can expand over time, extending two or more spinal segments from the 
level of SCI.
Tethered spinal cord is a condition where scar tissue forms and tethers, or holds, the spinal 
cord to the dura, the soft tissue membrane that surrounds it.  This scar tissue prevents the 
normal flow of spinal fluid around the spinal cord and impedes the normal motion of the spinal 
cord within the membrane.  Tethering causes cyst formation.  Tethered cord can occur without 
evidence of syringomyelia, but post-traumatic cystic formation does not occur without some 
degree of cord tethering.
Magnetic resonance imaging (MRI) easily detects cysts in the spinal cord, unless rods, plates 
or bullet fragments are present.
Post-traumatic tethered cords and syringomyelia are treated surgically.  Untethering involves 
a delicate surgery to release the scar tissue around the spinal cord to restore spinal-fluid flow 
and the motion of the spinal cord.  In addition, a small graft is placed at the tethering site to 
fortify the dural space and decrease the risk of re-scarring.  If a cyst is present, a tube, or 
shunt, is placed inside the cavity to drain the fluid from the cyst.  Surgery usually leads to 
improved strength and reduced pain; it does not always bring back lost sensory function.
In experiments at the University of Florida, people with spinal cord cysts were treated with 
injections of fetal tissue.  It is unlikely this technique will find its way to the clinic any time 
soon, but the tissue did grow and it filled the cavities preventing further loss of function.
Syringomyelia also occurs in people who have congenital abnormality of the brain called a 
Chiari malformation – during development of the fetus, the lower part of the cerebellum 
protrudes from the back of the head into the cervical portion of the spinal canal.  Symptoms 
usually include vomiting, muscle weakness in the head and face, difficulty swallowing, and 
varying degrees of mental impairment.  Paralysis of the arms and legs may also occur.  
Adults and adolescents with Chiari malformation who previously showed no symptoms may 
show signs of progressive impairment, such as involuntary, rapid, downward eye movements.  Other symptoms may include dizziness, headache, double vision, deafness, an impaired ability to coordinate 
movement and episodes of acute pain in and around the eyes.
Syringomyelia can also be associated with spina bifida, spinal cord tumors, arachnoiditis and 
idiopathic  (cause unknown)  syringomyelia.  MRI has significantly increased the number of 
diagnoses in the beginning stages of syringomyelia.  Signs of the disorder tend to develop 
slowly, although sudden onset may occur with coughing or straining.
Surgery results in stabilization or modest improvement in symptoms for most people.  Delay 
in treatment may result in irreversible spinal cord injury.  Recurrence of syringomyelia after 
surgery may make additional operations necessary; these operations may not be completely 
successful over the long-term.  Up to one half of those treated for syringomyelia have 
symptoms return within five years.
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4453407/k.DBDF/Syringomyelia
__Tethered_Cord.htm
Syringomyelia
Syrinx
Last reviewed: June 16, 2010.
Syringomyelia is damage to the spinal cord due to the formation of a fluid-filled area within the cord.

Causes, incidence, and risk factors

The fluid buildup seen in syringomyelia may be a result of spinal cord trauma, tumors of the spinal cord, or birth defects (specifically, "chiari malformation," in which part of the brain pushes down onto the spinal cord at the base of the skull).
The fluid-filled cavity usually begins in the neck area. It expands slowly, putting pressure on the spinal cord and slowly causing damage.

Symptoms

There may be no symptoms, or symptoms may include:
  • Gradual loss of muscle mass (wasting, atrophy)
  • Headache
  • Muscle function loss, loss of ability to use arms or legs
  • Numbness or decreased sensation
    • Decreased sense of pain or temperature
    • Lessened ability to sense that the skin is being touched
    • Neck, shoulders, upper arms, trunk -- in a cape-like pattern
    • Slowly, but progressively, gets worse
  • Pain down the arms, neck, or into the upper back
  • Weakness (decreased muscle strength, independent of exercise) in the arms or legs
Additional symptoms that may be associated with this disease:

Signs and tests

A neurologic examination may show loss of sensation or movement caused by compression of the spinal cord.
An MRI of the spine confirms syringomyelia and determines the exact location and extent. Often, an MRI of the head will be done to look for associated conditions including hydrocephalus (water on the brain).
Rarely, an spinal CT with myelogram may be done.

Treatment

The goals of treatment are to stop the spinal cord damage from getting worse and to maximize functioning. Surgery to relieve pressure in the spinal cord may be appropriate. Physical therapy may be needed to maximize muscular function.
It may be necessary to drain the fluid build up. See: Ventriculoperitoneal shunting

Expectations (prognosis)

Untreated, the disorder gets worse very slowly, but it eventually causes severe disability. Surgical decompression usually stops the progression of the disorder, with about 50% of people showing significant improvement in neurologic function after surgical decompression.

Complications

Without treatment, the condition will lead to:
  • Continued or progressive loss of neurologic function
  • Permanent disability
Possible complications of surgery include:
  • Postoperative infection and other complications common to all surgeries

Calling your health care provider

Call your health care provider if you have symptoms of syringomyelia.

Prevention

There is no known prevention, other than avoiding trauma to the spinal cord. Prompt treatment reduces progression of the disorder.

References

  1. Feske SK, Cochrane TI. Degenerative and compressive structural disorders. In: Goetz CG, ed. Textbook of Clinical Neurology. 3rd ed. Philadelphia, PA: Saunders Elsevier; 2007:chap 29.
  2. Golden JA, Bonnemann CG. Etiological categories of neurological diseases. In: Goldman L, Ausiello D, eds. Cecil Medicine. 23rd ed. Philadelphia, PA: Saunders Elsevier; 2007:chap 28.
Because Z's dura is attached to the spinal cord we wondered if a device of some kind or brace could be used to immobilize Z's back for a long enough time for the body to heal itself. We wonder if this would be an option.

Injury to the Spinal Cord can occur due to trauma to any part of the spine from the cranium to the upper lumbar region where the spinal cord terminates. Trauma to the spinal cord is commonly associated with damage to the spine itself. Often, a fracture of the spine occurs in relation to the injured central nervous system tissue. The area where the spinal cord is injured dictates the level of function, as dysfunction develops below that specific level. Spinal cord injuries are classified as either incomplete or complete. Incomplete injuries show preservation of some function below the injured level. Complete injuries are characterized by a total lack of both motor and sensory function in motor-sensory and electrical modalities below the level of the injury.
Symptoms: Spinal cord injury presents with severe pain, limited mobility, or paralysis after a specific accident or trauma to the spine.
Diagnosis: Patients with spinal cord injury need to be thoroughly examined on admission to assess any preservation of function, including peri-anal and rectal examinations and testing of all reflexes and motor and sensory functions. Sematosensory evoked potentials (SSEP) are also a possible adjunctive test. They examine the ability of the spinal cord to transmit impulses by stimulating an area of the leg or arm with a weak electrical current, and determining whether or not this stimulus can be detected over the corresponding part of the brain. Wherever possible, radiographic studies (x-rays, CT scan) need to be performed in a timely manner. An MRI is indicated wherever possible to identify the injured spinal cord and any foreign tissues in the spinal canal, such as a fragment of bone or disc material.
Treatment: Surgery to correct a spinal deformity that narrows the spinal canal is often performed but is unlikely to reverse any major spinal cord dysfunction; however, removing bone or disc material from the spinal canal in a timely basis can promote the recovery of an incompletely injured cord. Patients with cervical spinal fractures are often placed in traction to try to realign the spinal canal to relieve any ongoing pressure on the spinal cord. Some spinal injuries that result in spinal cord trauma are stable and do not require surgery. In the cervical spine, fractures are sometimes treated with immobilization devices such as a halo external fixation device. Unstable fractures in the thoraco-lumbar region may require instrumented fusion.

http://spinecenter.ucla.edu/body.cfm?xyzpdqabc=0&id=32&ref=29&oTopID=35&action=detail