The Hunt

The hunt began to find a neurosurgeon will to take my case and fix the tethered cord and extract the lipoma.  I don’t remember how many neurosurgeons I spoke with in the Houston area.  I just remember feeling completely drained from this hunt for the one willing to help me.  I either heard “this can’t be done” to “I think this person can help you better.”  I laughed walking out the door after hearing these responses because they were basically telling me that they weren’t skilled enough to accept this challenge I laid out in front of them.  I was not giving up, this is MY life and I still have a lot more years to live.

I’ve really never been hunting but I assume it’s part patience, part skill, and some part luck.  I was a hunter looking for that surgeon that would take my case.  I had tons of patience.  My skill was learning what the diagnosis was and knowing what questions to ask.  Then came the luck, or maybe God’s will, landing on the right doctor, which will say yes and click with me through all of these referrals.  I narrowed my eyes on the final prey…a pediatric neurosurgeon at a big hospital and he never knew what was about to hit him!

I remember sitting in the waiting room, looking around at all the kids playing waiting for their appointments.  My heart ached.  Oh how I wished I could take their pain away.  It kills me when I see children battling medical problems.  How could they smile through all of this?  God is good and has a greater plan, one we aren’t ready to understand.  The strength these children have can bring a grown man to his knees.  This strength that I saw in their beautiful eyes was strength I learned to help me endure through this process.  It’s so incredible what a child can show you in their eyes and smile!!! Now I know part of the reason.  This neurosurgeon was a man of God.  He prayed all the time and took all of his cases seriously and to the Lord.  He prayed for himself and his patients.  I am sure that is what helped all of us gain more strength.  Having a faithful, humble doctor showed me the power of daily prayer.

Yes he did take my case.  I wish we could have discussed it more over a pint of beer but that didn’t happen.  I had yet to find out how serious my problems were and wouldn’t for a while.  All I knew was he wanted the surgery done as soon as possible and I was all for that because I just wanted to get back to school.  Back to the grind of a full load of college classes, my friends, and all my social engagements.  Little did I know that wasn’t in the cards for me, God had a different agenda.  Funny because I always say “God uses you when you are completely broken and vulnerable.”  But will I ever find out why, how, and when He would use me???????

Definitions Page/Post

 

A lipoma is a growth of fat cells in a thin, fibrous capsule usually found just below the skin. Lipomas are found most often on the torso, neck, upper thighs, upper arms, and armpits, but they can occur almost anywhere in the body. One or more lipomas may be present at the same time. Lipomas are the most common noncancerous soft tissue growth. http://www.webmd.com/skin-problems-and-treatments/tc/lipoma-topic-overview

Spina bifida (SB) is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone. Spina bifida occurs in various forms of severity.  http://www.mayoclinic.com/health/spina-bifida/DS00417

Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. This syndrome is closely associated with spina bifida. It is estimated that 20 to 50 percent of children with spina bifida defects repaired shortly after birth will require surgery at some point to untether the spinal cord.

The lower tip of the spinal cord is normally located opposite the disc between the first and second lumbar vertebrae in the upper part of the lower back. In people with spina bifida (myelomeningocele), the spinal cord fails to separate from the skin of the back during development, preventing it from ascending normally, so the spinal cord is low-lying or tethered. In patients with a lipomyelomeningocele, the spinal cord will have fat at the tip and this may connect to the fat which overlies the thecal sac (a fluid filled sac that the spinal cord “floats” within.)

Although the skin is separated and closed at birth, the spinal cord stays in the same location after the closure. As the child continues to grow, the spinal cord can become stretched, causing damage and interfering with the blood supply to the spinal cord.  http://www.aans.org/en/Patient%20Information/Conditions%20and%20Treatments/Tethered%20Spinal%20Cord%20Syndrome.aspx

Pain Management (PM): Pain Management is a medical approach that draws on disciplines in science and alternative healing to study the prevention, diagnosis, and treatment of pain. For painful spine and musculoskeletal disorders, pain management is employed as an aggressive conservative (nonsurgical) care program that helps to identify the source of neck and back pain and rehabilitate the patient as an alternative or follow-up to surgery. A physician who is practicing pain medicine or pain management is usually an anesthesiologist who has been certified or trained on the relief and/or management of pain. A physiatrist may also specialize in pain medicine. Pain management programs can employ massage therapy, analgesic medications, physical therapy, and epidural steroid injections, among others to treat back pain.  http://www.spine-health.com/glossary/pain-managementpain-medicine

Chronic Pain (CP):

• Chronic pain is often defined as any pain lasting more than 12 weeks. Whereas acute pain is a normal sensation that alerts us to possible injury, chronic pain is very different. Chronic pain persists—often for months or even longer.
• Chronic pain may arise from an initial injury, such as a back sprain, or there may be an ongoing cause, such as illness. However, there may also be no clear cause. Other health problems, such as fatigue, sleep disturbance, decreased appetite, and mood changes, often accompany chronic pain. Chronic pain may limit a person’s movements, which can reduce flexibility, strength, and stamina. This difficulty in carrying out important and enjoyable activities can lead to disability and despair.   http://www.nlm.nih.gov/medlineplus/magazine/issues/spring11/articles/spring11pg5-6.html

Guinness time

So picture this:

You are sitting at a bar where everyone knows your name, okay so it isn’t Cheers, and you are having your favorite drink.  Mine of course is Guinness, however it takes me awhile to drink it.  Not because I don’t like it, because I love to mingle and talk to people, play darts (steel tip), and just take my time with the smooth dark love of mine in that pint glass.  So you are sitting there chatting and you cross your legs like every good 23 year old lady should do, right?  And then your leg falls to sleep. Weird right?  So you uncross them and it still feels funny.  You get up and walk around; it starts to feel a little better.  You go home that night and start thinking about other problems with your legs.  You notice they are starting to tire more easily now.  They are becoming numb more often than usual.  So maybe it’s time to get this checked out by the doctor.  You sit down and tell him what’s going on, thanking God he’s listening, and it turns out a MRI is ordered.

Hate these machines.  You are stuck in a tube that is too loud for anyone; you have to lie still which turns out to be even harder than you thought.  The radiology techs give you an emergency button. Then you revert back to childhood with these damn machines and here comes the running thought:

that a dinosaur is going to come and step on this building and everyone

will get out and forget about you and the damn button is useless they

are all going to run and you are stuck in a damn loud tube…….

Everyone has had that thought, right?????  Okay, so it is just me!  Well in my defense, I have a very creative imagination.  So on with my story…though I know secretly you will think about it next time you have a MRI!!!

The next step, going back to the doctors to get the report.  Probably nothing, no biggie, just overdoing it and not getting enough rest.  So you tell yourself that things from this point on will get better and you will make sure to get enough rest.  Then you get this from the doctor:

“You have a lipoma and a tethered cord.

You must find a neurosurgeon and get this fixed immediately.” 

HOLY SHIT, WAIT, WHAT????????????????

BUT, I’M ONLY 23!!!!!!!!!

What is Spina Bifida (SB)????

What is Spina Bifida?
Spina Bifida is the most common permanently disabling birth defect in the United States. Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8028963/k.BE67/Home.htm

Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone. Spina bifida occurs in various forms of severity.

http://www.mayoclinic.com/health/spina-bifida/DS00417

 

I love when medical professionals define a condition, disease, defect, and even the common cold. Everyone weighs in and gives their definition to see who comes up with the longest, the most complicated, or even the most opaque. All I would love to do is scream, “DO NOT DEFINE US, BECAUSE WE WILL SURPASS YOUR DEFINITION AND RISE TO THE TOP!”

I hate, hate, hate being put in a box. I don’t like to know where I start or finish because of a definition. I will tell you my personal definition of Spina Bifida. I am not saying the above definitions by the Spina Bifida Association or the Mayo Clinic are wrong, because they are not by any means. However, I am here to tell my story so I’ll start by explaining MY Spina Bifida. (For now on Spina Bifida will be abbreviated to SB.)

My SB is interesting. I wasn’t born with my spine exposed, but I did have the significant markings. I can only assume an X-ray was done to confirm the doctor’s diagnosis before he told my parents. It didn’t seem to affect me in the way many doctors thought it would. Unlike most kids with SB, I didn’t have my first surgery until I was 5 years old. I was a normal baby. I kicked my legs, I crawled, I walked, and I was potty trained. Everything seemed okay until the age of 5. I’m not sure what lead up to my parents requesting to see a neurosurgeon but I think it was because I started losing bladder function and my reflexes were almost nonexistent. I remember I was in 1st grade and I just couldn’t hold my bladder like I used to and it was not a comfortable feeling at that age. What was wrong with me???

I remember my surgery was in the summer of 1986 right before I went to the 2nd grade and changed from a private school to a public school. I do remember going to my Godmother’s house before the surgery. I think both my Godmother, Chris, and my mom had a little too much to drink and decided to cut my hair for my surgery. At that time I had long blond hair. Well these crazy women put my hair in a braid and started cutting. Well obviously since it was braided, it wasn’t coming out straight across. So they kept cutting and cutting till it was and my hair became shorter than I have ever worn it at that time. I can remember sitting on the kitchen table and wondering when will they ever be done. This is truly why I think my mom and my Godmother, both women I am named after, were drinking. And I hope it wasn’t the cheap stuff because I know they were very worried about the outcome of this surgery that was looming.

Like I said, many of the details are blurry or lost. I don’t know exactly what the surgery entailed but when it came down to it, they fixed my spinal cord and some other things, so I could continue to have full use of my legs but in return I lost control of my bladder. I have what the medical community calls a neurogenic bladder and I have to self-catherize multiple times a day, every day. It sounds horrible but I can walk and I am grateful for that gift. Most people when they hear the word catheter, they think of a Foley, the catheter that is placed in you when you are in the hospital and are not allowed to get up and walk around or are unable to. What I do is nothing like that. It is a very small catheter and I even carry them around discreetly and no one who doesn’t know me would ever be able to tell that is what I have to do and carry on me at all times. And for years I hid this from almost everyone! I am good at it……until……….