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.

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.

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: Muscle contractions Rashes Spasms in or tightness of the leg muscles Uncoordinated movement 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 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. 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

Seriously? Enough with the Pain, Already!

Zachary cried in pain this evening and not about his legs this time. It's his back and his stomach, I'm thinking this would be the third time he's had pain in his back. The first time was from the spinal tap, the second time from the CT Myelogram and now it just hurts. Stomach pains are on and off three or four times a week. I put his TENS unit on and gave him a Benedryl, after about 45 minutes he settled down.

A Voicemail Message

This is Dr. Jordan I just wanted to leave you a message to let you know that I spoke to Dr. Singer about any possible treatment for the adhesion the sticking of the spinal cord and the coverings of the spinal cord together and he said that he had never done such a thing and he wasn't sure that it would be a good idea but he was going to talk to one of the very senior neurosurgeons here to see if they had done something like that I also spoke to the team in Baltimore and they are expecting the CD's on Zachary and they had some potential thoughts about treatment as well but they obviously want to see all the images first so once they have gotten back with me I will get back to you and I expect that it will be about another week I just wanted to let you know and I hope you have a great weekend, thanks so much, bye!

A Steady Stone

That itty bitty miracle we all ordered? Yeah? Well, it's been found!! I thought for sure it would be on backorder, but no, it was sent right there to Dr. Jordans office, He knew where I'd be! ;) I can't even express the relief of finally having an answer to all the mess going on within Z's body. Okay, are you ready for the update? Well, of course you are ... Here we go!
A little anatomy lesson to start this all off. You see, you have a lining that wraps around the outside of your brain and spinal cord, now between your brain, spinal cord and this lining there is free flowing fluid, called spinal fluid which helps to protect these parts. In the center of Zachary's back, about 6 inches vertical, this lining has attached itself to his spinal cord and within those 6 inches there is no free flowing spinal fluid. It is believed that when Z is active he pulls on this area that is stuck to his spinal cord and creates little tears, causing bleeding within that area, this ... is what has caused the Superficial Siderosis in Z. 

Dr. Jordan's art work. Aww, I should've had her sign it. 

Now, you ask. Where do we go from here? Oh well I have the answer to that! Here! Here! Pick Me! Pick Me!! lol The results to Zachary's Myelogram will now go the the neurosurgeon who performed the Angiogram on Z to get his recommendations and then all of that will be sent Dr. Levy at John's Hopkins to get his recommendations and then after all the doctors have all consulted with each other ... then we will find out what will be next. For now .... we are basking in the moment of this totally awesome miracle. In case you didn't know ... statistically there are very, very few Superficial Siderosis patients who are even able to find the source of their leak. We are truly blessed! Thank you all for keeping Z in your prayers, this is definitely not the end to our long journey, but a steady stone to step on as we move forward through the storm. :)


What about Ferriprox? Is Z able to get that yet? If Z were getting worse then this would be something we would look into but because he's pretty stable right now and the drug has just been approved by the FDA I think we should just sit tight for now.


While researching I found that the statistics for losing hearing is pretty high, how often do you recommend I take Z for a hearing test? Once a year


Z has an appointment to see Dr. Thomsen about his stomach pains do you think it might be related to SS? I'm not sure about that, I'd have to consult with Dr. Levy about that one. I'm thinking it has something to do with Zachary's pain medication, keep that appointment with Dr. Thomsen I'm interested to see what she has to say.

Stomach Issues Continue

Z is still having stomach pains. When we went in to update his shot records on the 11th of November, I mentioned these pains to his doctor. He has an appointment to see Dr. Kelly Thomson to see if she can figure out what's going on. Seriously? I wish we could get off this roller coaster.

Is My Faith Wavering?

Zachary suffered through the night with some pretty intense leg pain, I gave him a full Benedryl and an Aleve, put on his TENS, rubbed his legs with therapy creme and put ice on his legs, and still he had a very rough night.

This morning he woke with stomach pains as he a has been doing for several weeks now.

I'll be honest ... a dear sister sends out spiritual messages everyday, and very rarely do I take the time to read them, but this morning after my own individual prayer I read this.

My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; D&C 121: 7

I don't ask "why us" anymore, because I have faith that in His time things will work out, but do I waiver in my faith when I ask or wonder these things? Why is His time not in sync with ours? :( Is the feeling of helplessness and heartache for a child that endures so much pain not enough? When will Z finally be free from all of this? What is it that we're missing? What is it that we're supposed to be learning? How do we get this storm to pass by quicker? Is it possible that we've used up all our miracles?

Ashley survives the impact of a horses hoof to her abdomen, bleeds internally for three days because the doctor we went to didn't look further and she survived.

My father went on several deployments to the middle east and he survived.

My mom was pinned between a truck and a tree, she survived.

The twins were in an accident that took two lives, they survived.

These are only a few of the miracles we've been blessed with, have we maxed out our miracles? Can we get a loan?

The CT Myelogram

Z with a member of the sedation team

Zachary wore his yellow hospital socks from the last time and one of the nurses said they were ugly and gave him these. You know it doesn't seem like much but a simple pair of socks sure can help calm a frightened child. Thanks, to whoever donated these!

Zachary did really well, he was awake and talking when I came into the recovery room. He was a little wobbly at first from the medications, but all in all in good spirits, and ready for his chicken nuggets from McDonalds, lol. We should receive the results to this test in a couple of days.

Researching & A Possible Information Gold Mine!

The web is filled with all kinds of information on Superficial Siderosis, and reality is slowly slapping me in the face. I was told by Dr. Jordan to research or look up information on Michael Levy, Rafael Llinas and N. Kumar. I have been studying and have found that the success rate in finding the leak isn't very high at all, however, we will continue to hope and pray that Z will be one of however many to have a success story.

So, as I went to research the Meylogram and what other procedures are out there that would help to find the leak I came across a support group on the web. I'm pretty careful about the kind of information I gather and this seems to be a very good way to get some accurate information. Dr. Levy's name is mentioned quiet a bit, and already there are a lot of questions being answered. I think the saddest part of all of this is that Z will most likely have I long trying relationship with SS. The statics aren't very promising when it comes to finding the leak ... and the prognosis? Yeah, nothing promising there either.

I am in contact with the person who heads up the support group. Can I just say? Wow!! He has ton's of information, it's like I've hit an information gold mine. There is so ... much that this disorder/disease can do and none of it is good. It's all really quiet depressing and it can bring you down, but with great faith I stand tall for my son and will continue to do so.