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My Story

 Seth Edmunds has  a form of Spina Bifida Occulta called Lipomyelomeningocele (fatty tumor on his spinal cord) and a tethered cord. This condition only occurs in 1 in 10,000 births.

View the photo gallery for pictures of Seth's condition.
Read the journal for a glimpse into our journey.



Seth Edmunds was diagnosed with a lipomyelomeningocele (fatty tumor on his spinal cord) and a tethered cord in May 2008. We have since discovered that these are side effects of a neural tube birth defect that he was born with. His birth defect is Spina Bifida Occulta (a hole in the covering over his spinal cord). This particular birth defect occurs in 1 in 10,000 births.  So it is extremely rare.  As a result, I have had to do lots of research to find the right treatments for Seth.

This all started in the beginning of 2008.  Seth had been having trouble with his ankle ever since football season.  He had gotten to the point that he couldn't put his heel down.  His primary doctor diagnosed him with a shortened heel cord, but couldn't figure out what caused it.  So we got referred to a couple of specialists until we got to an Orthopedic Surgeon in Temple who ordered an MRI of Seth's spine.  That is when our world was turned upside down.  Seth had a large fatty tumor wrapped around his spinal cord.  It was 5 vertebrae long and was causing his spinal cord to be stretched unnaturally.  (The normal spinal cord ends around the middle of your back at the L1-L2 vetebrae, Seth's stretches all the way down to the S1-S2 level.  That's 4-5 vertebrae further than it should be.

Seth had an 8 hour surgery (which included the removal of portions of 5 vertebrae) to remove as much of the tumor as possible and to attempt to loosen (detether) the spinal cord on August 1, 2008.  Seth did get some improvement in bladder and bowel symptoms, but not really any in his leg.  In fact since the surgery, his leg has gotten worse.  He has pretty severe atrophy in his left calf, and slight paralysis of his left ankle and foot.  He started wearing a leg brace which made his limp barely noticable.  

In November 2008, Seth had surgery on his left leg.  They did an Achilles lengthening procedure that helped reverse some of the tightening of his Achilles so that he can put his foot flat now.  

Seth went through a huge growth spurt during the summer of 2010.  As a result he has sustained further nerve damage.  His left thigh and hip have now been affected.  He is experiencing atrophy of his thigh and a severe limp.  His body has started growing bone spurs in his ankle as a reaction to the nerve damage.  He had his ankle scoped in July 2010 to remove spurs and they had already started growing back by October 2010.  He will likely need an open surgery to his ankle followed by radiation and/or medication to stop the spur growth.

The 2010 growth spurt also caused severe damage to the nerves of his bladder.  He is now not able to completely empty his bladder.  He also has bladder spasms which are causing reflux into his kidneys which risks kidney damage.

As long as Seth is still growing, he's at risk of more nerve damage.  His last MRI showed that his spinal cord is retethered, so it is gettting stretched the more he grows.  He still has a chance of losing more function in his left leg, losing function in his right leg and/or sustaining more bladder/bowel damage.  Second surgeries for this condition are more risky than the first.  The surgery itself can cause more damage than the stretching of the spinal cord.  But at this point, surgery might be recommended since Seth has had significant deterioration of his bladder/bowel.

We are hoping that Seth will finish growing soon and do so without more damage to his spinal cord. 

Feed

Nicole Edmunds posted a new journal entry.

Last year, Seth had hives and nearly went into anaphalxis.  The allergist could not figure out what he was allergic to.  I was convinced it was latex.  Allergist tested ... Read more

Nicole Edmunds posted a new journal entry.

Last year, Seth had hives and nearly went into anaphalxis.  The allergist could not figure out what he was allergic to.  I was convinced it was latex.  Allergist tested ... Read more

Nicole Edmunds posted a new journal entry.

The Madisonville High School Boys Golf Team (of which Seth is a member) competed yesterday in their 2nd round of District Competition.  They are District Champs!!!!Way to ... Read more

Nicole Edmunds posted a new journal entry.

When we went to the neurosurgeon on December 30th, he felt that Seth's condition was deteriorating enough that he needed another spinal surgery.  We have been extremely ... Read more

Nicole Edmunds posted a new journal entry.

Yesterday's appointments went fine.  It was nice to not get any bad news for a change.  The urologist wants to see Seth in 3 months to check his kidneys.  The ... Read more

Nicole Edmunds posted a new journal entry.

Seth has appointments in Temple on Tuesday with his Urologist and Orthopedic Surgeon.  The Urologist will check to make sure his kidneys are still doing fine.  The ... Read more

Nicole Edmunds posted a new journal entry.

Seth is doing better.  Unfortunately we still don't know for sure what caused the allergy attack.  We've suspected latex (some of his medical supplies are made of ... Read more

Nicole Edmunds posted a new journal entry.

What a Week!!!!!On Monday evening, Seth blacked out and hit his head on the bathtub.  When we carried him to the ER, his blood pressure would plummet and his pulse jump ... Read more

Nicole Edmunds posted a new journal entry.

Great news!  After denials on 4 levels of appeal, our insurance has granted coverage for Seth to continue care with his neurosurgeon, Dr. Spinks through May!! Read more

Nicole Edmunds posted a new journal entry.

Seth seems to be adjusting pretty well to the news we received at last Friday.  The most difficult thing is some of the side effects of the medication he has to take.  ... Read more

Nicole Edmunds posted a new journal entry.

We got some good news yesterday.  It's not related to the doctors or insurance, but it made Seth feel a little better nonetheless.Week before last, Seth was told that he ... Read more

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