by Band Back Together | Dec 11, 2018 | Birth Defects, Chiari Malformation, Health, How To Help A Friend With Infertility, Infertility, Male Factor Infertility, Multiples Pregnancy, Neural Tube Defects, Pregnancy, Pregnancy Complications, Spina Bifida |
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I didn’t have much hope for our IVF cycle. We transferred two embryos and none of the remaining eleven made it to the freezing stage so I thought I had a couple of duds in my uterus as well.
I ended up pregnant with twins on our first try.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
Delivery day.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Fuck.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
Life altering not life ending.
by Band Back Together | Oct 23, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness |
The Doubt.
There is a pretty good percentage of neurologist who think that Chiari Malformatio isn’t significant. They think that it is almost exclusively an incidental finding that just happens to show up on MRIs of people with crushing headaches. It’s like they hear hoofbeats, see a horse and go, eh, I think that’s just a coincidence.
So when I told the neurologist my past medical history, before I got past the part about being diagnosed with Chiari Malformation he looked and me and said, “now, was this a real Chiari?”
No, you’re right. It was really a series of unicorns and rainbows that made it look like my brain had squirted out into my neck, thereby compressing a lot of really important stuff. How silly of us to not realize. I wonder how the 3 neurologists I saw before surgery and the 3 neurosurgeons I got second and third opinions from missed the fakeness of my condition. I mean really.
It makes me angry. It comes across as a doctor asking you if you had brain surgery for fun. It comes across as an accusation of faking it. And it makes me livid. The last neurologist I saw did the same thing. As did the one before that. And until they look at my early MRIs showing the severity that my Chiari and how it messed with my brain and spinal cord, they treat me as though I made this up, as though I wanted this life, that surgery, this year of endless headaches.
In the end they all let it go, or change their mind and move on with the exam and eventually treatment. But I feel like I spend the first 20 minutes of each exam justifying the scar on my neck, justifying the choice to have this condition treated.
I have a lot of faith in doctors. I’m married to one, I am entering into a career in the health field myself. But I am tired of being condescended to. I’m tired of doctors acting as though I am ignorant of my condition because I’m not a neurologist. As though I didn’t do the research, didn’t ask for multiple opinions, didn’t play the wait and see game until I was so miserable, so uncoordinated, so incapacitated that I couldn’t function. I’m tired of the air of doubt in my symptoms.
If I had a tumor, they wouldn’t ask if it was a “real tumor.” If I had MS they wouldn’t ask if those were “real lesions.” But somehow, because my condition isn’t well known, isn’t well researched (or frankly, researched at all), there is a constant doubt to my story, to my history, to my pain.
And it makes me doubt myself. And I hate that even more
by Band Back Together | Oct 9, 2010 | Chiari Malformation, Chronic Illness, How To Help A Friend With Chronic Illness, Invisible Illness, Pain And Pain Disorders, Trauma |
If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.
If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.
If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.
If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bedrest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.
If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.
If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.
If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.
If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides. A girl who would give the world to be what you think she is.
by Band Back Together | Oct 8, 2010 | Anger, Caregiver, Chiari Malformation, Chronic Illness, How To Help A Friend Whose Child Is Seriously Ill, How To Help A Friend With Chronic Illness, Marriage and Partnership, Marriage Problems, Migraines, Pain And Pain Disorders, Pediatric Caregiver |
Yeah. . . I don’t really know what I’m doing, but I have things to say (ed note: if you have things to say, you belong here), so here I am.
First of all, I am not the one in pain, so if you are reading this and you are and you want to tell me to shut my big fat mouth, because I don’t know what the hell I am talking about, feel free. However, the two people most dear to me suffer from chronic pain, and there isn’t a damn thing I can do about it.
Sure, I can provide comfort and try to make life a little easier, be sensitive, kind and gentle, remind my loved ones to take their medication (even though my husband’s on so much dope, it’s turned him into someone I don’t even know and I hate that). But beyond that, I feel helpless.
My husband was diagnosed with RSD (Reflex Sympathetic Dystrophy) in late 2004-2005 – 6 months after a “mundane” farm accident and three mother f-ing months too late for him to get the aggressive treatment he needed. He had a spinal cord stimulator put in that was supposed to “mask” the pain. Ha. The pain affects his right foot. He says it feels like someone poured gasoline on it and lit a match. Chronic depression has ensued; he was suicidal for awhile. AND THERE WAS NOTHING I COULD DO TO FIX IT!
Meanwhile, in 2008, our daughter began to have chronic headaches. Not just ordinary ones, but the kind with tons of pressure in the back of her had. She began to have dizziness, trouble with balance, nausea, vomiting, blurred vision. I thought it was PMS. (She’s thirteen now).
Really, PMS, dufus?
Yeah, well, turns out she has something called a Chiari Malformation with syrinx, which required surgery. . .on our baby. . . near her brain (duh, that’s why they call it neurosurgery). AND THERE WAS NOTHING I COULD DO ABOUT IT! Risks, yes. Would her headaches go away? Probably not, but she might be able to continue to have the correct use of her extremities and bladder if successful – a plus for an adolescent.
Now, in 2010, my husband is still in pain every day. He can’t walk. Our daughter wakes up with a headache every single day. I hate to see them in pain.
But, they are still with me. Our daughter has a relatively normal active life. Thankfully, the syrinx has significantly diminished – which is awesome and huge. We have each other. I know that I have so many things.
We live on a farm, so I’ve learned about taking care of livestock and how to charge a car battery and do a little work on a four-wheeler. I can cut wood to heat our home if necessary. I can shoot a gun. A country girl CAN survive, after all. I’ve learned I can be stronger physically and mentally than I’d ever thought. I’ve learned how to talk to doctors and ask questions, even if the answer might rip my spleen out. My heart has been broken so many times that I wonder if I even one left.
Most days I am thankful for the blessings we have.
Some days, like today, I’m angry as hell.
by Band Back Together | Oct 8, 2010 | Chiari Malformation |
Affecting more than 1 in one thousand people, Chiari Malformation is a disorder of the brain.
This is her experience:
If you saw me walking down the street, you would never know that there was anything wrong with me.
If you saw me walking down the street, you wouldn’t see the 8 inch scar up the back of my neck and head. You wouldn’t know that through that 8 inch scar I had bones removed, I had parts of my brain touched and adjusted. That I had a piece of a cow heart sewn into the lining of my brain.
If you saw me walking down the street, you wouldn’t know that the area around that 8 inch scar is in constant pain. You wouldn’t know that behind the smile is someone who wants to cry all the time. Who wants to lie in bed and wallow in pity for the pain that they’re carrying. You wouldn’t realize that when I tip my head side to side that I’m desperately looking for any movement, and little change that will reduce the pain I have. That even though I haven’t said anything to you, I am suffering badly.
If you saw me walking down the street, you wouldn’t realize that my left hand doesn’t work well. You wouldn’t notice that when I carry a bag of groceries in my left hand that my pinky finger never even gets looped in the bag handle. Or that even though my ring finger might be looped, you could pull it out with the greatest of ease. It’s a dummy finger. It’s there for appearances, and that’s it.
If you saw me walking down the street, you wouldn’t know that I have very little strength in my arms or my legs because last year I had to spend more than 2 weeks laying completely flat on a couch because spinal fluid kept pouring out into my back. And that just 2 weeks of strict bed-rest can result in a strength deficit that can take a year to regain under the best of conditions. You wouldn’t realize that if I was given a 15 pound dumbbell that I would only be able to do one bicep curl before having to quit. You wouldn’t realize that I am weaker than your 6 year old child.
If you saw me walking down the street, you wouldn’t know that my balance is very poor. You wouldn’t know that neon lights confuse my vision so much that I nearly fall over. You wouldn’t know that I can’t touch my finger to my nose when sober about half the time. You wouldn’t know that laying down at night makes me feel like my feet are going to flip over my head.
If you saw me walking down the street, you’d never know. My battles are quiet, my scars are hidden. But they are real. Just because you can’t see them doesn’t mean they don’t hurt, that I don’t struggle every single day. Just because I’m up and about doesn’t mean I’m not in pain, doesn’t mean that I’m faking my symptoms or exaggerating them. Just because I go on vacations and make it to my morning class most of the time doesn’t mean I am healthy or capable of doing everything you can.
If you saw me walking down the street you’d never know that I have permanent disabilities. That I have to fight to get the help I need because I look fine. You’d never know how much it adds to the hurt and frustration when people say that I look fine, or say that it can’t hurt that bad because I’m up doing x, y and z.
If you saw me walking down the street, you’d still have never walked a block in my shoes. You’d never have walked a block in my pain, in my dizziness, in my weakness, in my fears. You’d have just seen a girl who looks like you. A girl who wishes that her insides matched her outsides.
A girl who would give the world to be what you think she is.
