Hopelessness

I'm feeling so hopeless about life.

I was so looking forward to work today. NOT looking forward to my boss making me cry. I had emailed her when I found out about my back to give her a heads up about what was going on. She called me into her office today. If I can't lift 50lbs, I can't work. *cue tears* We talked about it quite a bit and decided that if I can avoid lifting and it doesn't hamper my work, that we will keep hush hush about it. I need to work. Working helps distract me. It lets me care about other people's problems instead of my own. Not to mention in 1 week, Josh will be moving out and I will be living alone (with the pups). I can't imagine sitting around here all that time. I'm supposed to work full time for a while and not only do I need that money, but I need that for passing time. F*** syrinxes!

Also, I want a second opinion. I want to talk to a specialist. I want a more definite answer for all of this crap. I want specific guidelines as to what I can and can not do. I want a more set look as to what my future might hold. I'm going to try and set up an appointment at the Chiari Center in Milwaukee. (Thanks Kelly for finding this.) Besides should I end up needing surgery, this is where I would probably go. I want a second opinion so I can maybe set my mind at ease a little more.... or at least have a better grip on this.

My symptoms are more persistent. Last month they were once a week. Right now they are hitting rapid fire every other day. Not cool. I hope it isn't syrinxes elongating. I like being able to walk, thank you.

I hate this feeling. Not to mention family stress and emotional crappiness. Life enjoys crapping on me a lot.

Another day like Yesterday

I haven't been able to talk to many people about what is going on. I don't feel comfortable with it. I don't want fake sympathy. I can't deal with it.

The people I have talked to keep saying the same thing: Don't worry, live your life. I don't think anyone realizes what my life has been like. There is so much I should be concerned about doing. Every time I cough or sneeze I wonder if my CSF jumped. Every time I bend to put my shoes on or to leash up the pups, I wonder if this type of bending is too much. When I stumble a little I have to wonder if I'm clumsy and tripped, or if it is a new and worsening symptom affecting my gait. Or if I drop something, is it a sign of muscle weakness? How can I not worry when randomly throughout the day my limbs go numb? It's a constant reminder of what is wrong. Every time I see a pregnant woman or a cute kid, I see the potential of never having those things in my life. I see people running on campus, and think about how I can't join them. As I pack things to move, I think about how I won't be able to help load the truck or rearrange furniture. I can never forget about having SM.

Song for today: Welcome to my Life by Simple Plan

Today is another tough day. I woke up from my random assortment of dreams (panic-filled dreams, followed by dreams of spending time with a good friend). Waking up was hard. I feel safe in bed. I spent a little time talking to that same friend from my dream. They know more about me than anyone else and are the only person I've been able to express all my true emotions to regarding all of this. I wasn't hungry, but forced myself to find some lunch. I just really want to go to work. There is always so much going on that it helps to distract me. Even then, I still can't move the chairs or help readjust a patient in bed. I don't know what I will do if I don't find a job for after graduation. I will be sitting around just like I am now. That won't help anything.

Let's try the being positive thing... Three things that make me happy: 1) I was able to open the pickle jar... yay for muscles working. 2) My rice buddy from Irene, it helps with my neck pain and helps me fall asleep every night. 3) Packing to get out of this city. I just want to be close to home. This isn't my home. Home is where the heart is, and my heart is in GB...

Tomorrow's Hopeful Light

In the middle of

life's raging storms,

We stand, and do not fall,

When we're secure

within the knowledge

That our courage

gives its all.

No matter what

the battle be,

Our heart is strong

and brave,

And every ordinary day

Holds memories to save.

What beauty fills our spirit

When we face the

deepest night,

We do not fear,

because we see

Tomorrow's hopeful light.

-Beverly Kaye

This was the poem on the card I received from Jim and Judy. The inside said "May you look forward to happier, better tomorrows. Feel Better Soon." "Thinking of you often! Take care of yourself- Love, Judy & Jim"

I needed this today. It was a rough day.

Debbie Downer of a Day

I hate how I feel. I'm really exhausted constantly (hopefully getting my Vitamin D back on track will help) and I am super down about life.

I need to lose weight. Simple fact. I'm pushing the envelope of my BMI. I have a wedding coming up. I want to look and feel good. Right now I don't. I'm so stressed lately and am craving my comfort foods, none of which are very healthy. So 1) I eat like shit. And 2) I'm a slug. With everything going on I have no motivation to exercise. Josh has been playing basketball and riding the bike. He is seeing results, especially in his lung function. This is pushing him to keep working out and being active. I can't do what I want to do most: run. I cried when I was watching The Biggest Loser last night. There is a man on that show who weighs 358lbs and he ran the 5k. I would give anything to be okay to run like that. Running was my big stress reliever in the past, but it was taken away from me. According to the SM forums, my safest exercises are walking and swimming. I'm not supposed to do sit-ups, or push-ups, or running/jogging, or bending (ruling out a lot of yoga).

Walking and swimming.

I looked into water exercise programs. The CP Center offers a lot of classes that I could take. What I would really like to do is get a gym membership. I want to hire a trainer to meet with me once a week or once every other week. If they know what my limitations are, then they can help me find exercises I can actually do.

What I should be doing right now is taking the dogs for a walk. Or writing my paper. Or studying for my exam. Maybe I'll get motivated to do any of those... maybe not.

I have to figure out how to get the mindset to take control of my life again. I know it's what I have to do, I just don't know how to.

Good Things Come in Small Packages

Yesterday I was watching my soap opera (*hides face in shame*) when there was a knock at the door. I figured it was a neighbor or someone. The dogs started barking like crazy! I opened the door and saw no one but a small brown package was leaning against the door. It was from Amazon. I didn't order anything from Amazon...did Josh? Normally our orders are addressed to him but this one was addressed to me. I tore into it. (The dogs helped.) I pulled out a book: The Official Patient's Sourcebook for Syringomyelia. The receipt was tucked in with it. It was from Kelly and told me to "Punch SM in the face!" :) I instantly teared up. When I talked to her later that night she was telling me how she had a hard time researching this disease and figured I might have had trouble finding reliable sources too. So this book lists TONS of credible websites for information on the disease, clinical trials, support centers, etc. It contains everything you would ever try to look up on the internet regarding SM and where to find it.

I feel very loved. Kelly is always so busy with grad school and work, and yet she took the time to look online for things... get frustrated... think of me... and order me a book so I don't have to face the same frustrations. I still can't believe it. After all the shittiness of life lately, it's the little things that bring a ray of sunshine into a dark place. So again... Thank you Kelly.

Back to the bad. Left arm tingling again today. Lasted for just over an hour. Lame lame lame. I'm really afraid that one of these times the tingling will start and not go away. That is my all time biggest fear right now. It would mean my syrinxes are progressing. It would mean that despite surgery the tingling would remain. A constant reminder of what is wrong with my body.

I keep coming up with other names for this blog:

-Life Walking on Eggshells

-Welcome to my World in a Bubble

All things about how limited I feel. I watched The Biggest Loser tonight. The contestants ran a 5k. I will never run a 5k again. I will never run again. :(

At a loss...

My left arm was numb again yesterday. Bleh.

It is hard to be super concerned with myself right now. All of my prayers are for my family, not for me.

My cousin Bob is really sick. He cut his finger while sawing a tree branch and went in to get it checked out. Despite the antibiotics they gave him he got a blood infection and his potassium is really high. This put him into kidney failure and he is on the verge of heart failure as well. Thing are really not looking good.

Grandma D. was taken to the hospital last Thursday due to fluid retention from her ever persistent heart failure. The doctor said it was a miracle she was alive. Her heart failure is really getting bad and with the added stress of grandpa being gone and her Alzheimer's - things aren't good. I visited her on Thursday night along with a bunch of other family. She is like a broken record. She keeps forgetting where grandpa is and why he is gone. She doesn't understand how sick they both are.

Grandpa D. has been in the rehab facility for about a week now. I went to visit him yesterday before coming back to school. It was such a drastic change from last week when he was still in the hospital. He was sitting in his wheelchair in his room, with the CNA assigned to sit with him to make sure he doesn't fall. The minute he opened his mouth I started balling. He is so confused and gets really agitated. He whines and cries and makes no sense. He got really worked up and started crying "pussy cat, pussy cat". It reminded me of Julia when she throws tantrums, or a little child, or one of the rambling guys on the psych unit. Once we started asking him about working at Riverside he snapped back to himself and was talking normal. He couldn't tell stories but gave us a line or two. We took him for a walk down every hallway and in every common room. He couldn't converse with us at all. Occasionally he would get really worked up or confused. Sometimes he would fall asleep for 30 seconds. I cried the entire time I was there. Before we left I gave him a hug and told him "I love you." He didn't hear me and asked "What?". So I repeated "I love you." and he said "Thank you." :)

I hate seeing him suffer like this. I cried the entire ride back and for about an hour with Josh when I got home. Then we watched Criminal Minds for 9 hours straight. That was a good distraction and it was just nice to cuddle as a family with him and the puppies.

I always said that if something was going to happen to Grandpa that I would grab a judge and get married right in his room, just so he could be there. He has been the most important person to me for a long time. But I'm realizing that he and grandma probably won't be around for my wedding in 8 months. It would be better for everyone if they weren't. The way they are suffering is unbearable to witness. Sometimes life can be really cruel.

F*** this!

I freaking hate syrinxes and not being able to lift anything!!!!
I was supposed to have an interview today for my non-nursing back-up job. I had the cards majorly stacked in my favor. I worked there, I volunteered there, I was interviewing with my aunt's best friend. But I can't fucking lift.
They gave me the job requirements while they got set. I would've had to go through a physical assessment at the hospital to make sure I'm physically able to do the job. The minimum requirement was lifting/carrying 25-50lbs. Right away I told them what happened. They talked to HR to make sure that they were being totally legal. There is no way for me to avoid lifting or for them to accommodate me. So there was no interview. I left in my stupid monkey suit and cried all the way home. I fucking hate my life.

My Rocks

As for my latest episode of N/T... it lasted 3.5 hours and afterwards my legs felt sore/tight for a bit despite movement.

Things have been really rough for me lately. I've been so down in the dumps and constantly plagued by these new developments. Until tonight I haven't really laughed or enjoyed life, but Kiki and Coco changed all of that. ;) Luckily I have a huge group of people who have been wonderful this last week and even before that. I haven't told many people about what is going on; it gets tiresome repeating it over and over. But those I have told have been nothing short of amazing. So here is the run down:

Josh: Right away when the NP said pregnancy might be too much of a strain on my back I told him that if having biological children was really important, that he could opt out now. His response: "We can adopt and help other kids." He is a keeper. When he was in town he would attend all of my appointments like a trooper. He did a great job taking care of the dogs and the house while I was away for appointments. When I got back he was waiting with a potted gerbera daisy and tons of love. He researched insurance options for when my coverage runs out. Most of all he has been there for me, even when he isn't exactly sure what to say or do. Him just being there helps. I know more than anything that I made the best choice of my life when I said "yes".

My Parents: My mom has been attending appointments with me when Josh can't make it. She has been keeping family updated, so I don't have to tell the same story over and over. And she gives good hugs. :) My dad is good for long and concerned phone calls. He has a neurological history so this really hits home for him for me to be going through all of this testing and uncertainty.

Jessica: She is the only pregnant woman I don't resent at the moment (I'm bitter at life.). I'm so excited for her little one to arrive and it distracts me from everything bad. She kept me busy when I would've had down time by going out to eat and celebrating at her baby shower.

Denise: She has shown concern for me despite her own medical drama that was occurring at the same time. She also continues to be such a great friend to my mom, which is always a good thing.

Andrew: He stopped by for a short visit one evening right after all of my testing. He was genuinely concerned about everything going on and was such an easy person to talk to and get everything off of my chest. His hugs and support helped a lot during that time.

Jim and Judy: While I didn't intercept their calls, I heard about them. They were frequent callers for updates from my parents. It means a lot.

Jim and Fawn: They have shown so much concern through all of this. They are always sensitive to how I'm doing and continue to dish out their undying love and support.

Mike: He said it best right away after my first bad phone call, "We'll still take you." I almost cried.

Em: She gets freaked out if I don't update her often enough or call enough. Her actions remind me how welcome I am in their family.

The Stouts: Continually have outpouring concern and well-wishes. They are the best set of 3rd grandparents anyone could ask for.

Bobby: He makes me laugh. Obviously I'm falling apart because he left town.... Oh what shall I do? Haha! He really brightened my days when he said he will be able to get out of training for our wedding! Best big brother ever!

Mama B: Sent a really heartfelt message. She is such a wonderful and caring person for being so many miles away and only seeing me once a year.

Kelly: Ever since test one, she "badgers" (in only the best way) me with texts for updates. She continually sends me funny things to help pick me up. Her electronic love is definitely felt. We had long talks about pregnancy and she knows how strongly I feel about being a mother... next time we get together it will include drowning the bad things in ice cream and doing rain dances for happy future outcomes. She is continually there for me even when I don't realize I need someone.

Ashley: I was having a horrible day and cancelled our dinner plans because I wanted to curl up in a ball and hide from life. But she is unstoppable and before I got home brought over another gorgeous gerbera daisy (my plant table has grown quite a bit!) and Culver's ice cream. (She even brought some for Josh because she is awesome like that.) It was exactly what I needed to get through the night/not feel so alone. We have since had our dinner and plans for future yummy-ness. It helps having someone in town who knows me well enough that we don't have to talk about bad things and she just knows how I feel.

Nikki: She was able to grant me a very good and distractable wish - to meet her boyfriend. That was nice, and so was he. We got to sit around and gossip and it felt just like it did back in the day before things were so complicated.

Cassie: Oh my goodness. When I sent her a message to tell her everything that happened, she balled her eyes out and started texting me rapid fire, which turned into an hour long phone call. I never knew I had such a good friend in her. She is a really diamond in the rough. I definitely approve of her to be with my brother.

Ashley: Between the two of us, we are a disaster right now! She has some nasty medical issues going on as well, but can still pour out the sympathy. I'm so glad we grew closer these past few years. She is so understanding of everything I'm going through, and overall just an amazing person to have on hand whenever I need someone to talk to.

Olivia: She freaked out when I didn't call her after a few days to give her an update. She has been so supportive. She also got me to laugh till I cried tonight. We had such a good time at dinner; it's what I've been missing lately.

Kim: She has been through the ringer herself and knows what types of fears I've been trying to suppress. She called right away to assess how I'm holding up, and then to tell me about the chance of a misdiagnosis....she is such a nurse! I love her to death!

Maggie: She was great to talk to while I drove up for more testing. She also lets me come over to her place when I really need a distraction. She is overly accommodating with shows/food/a cute puppy. Her apartment is the perfect place to escape to.

There are a ton of other people who have been there and been supportive that I feel need to be mentioned: Amanda (for listening despite her own problems), Clyde (for the words of encouragement), Dana (for checking in on me), Ashton (for being the MOST inspiring/encouraging), and other aunts, uncles, cousins, and grandparents.

I'm really blessed to have all of these people in my life. I'm blessed.

Itty Bitty Now, Big Post Later

4/21/10

12:15pm - still going strong an hour later

N&T bilaterally in my legs; no weakness, loss of sensation, paralysis; started while watching TV; continues while walking and doing things

(note to self....lower back of neck pain persisting for the past 3 days. try to score a rice buddy from Irene.)

Will post more later tonight to help procrastinate important things in life, like papers worth 30% of my grade.

What CAN I do???

So I've been browsing websites to find out exactly what I can or can't do that would impact my condition. The NP was so vague on the phone that I'm at a loss as to what I can really handle. Here is my GIANT list of Don't's:

NO high-impact exercise, such as running and jumping in cases associated with cervical instability.

NO activities involving Valsalva maneuvers

NO roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, etc. Anything that “jars” your head and/or spine is a definite no-no.
NO water skiing, snow skiing, snow boarding, sky diving, bungee jumping, etc. (Just trying to cover all the basics – you get the idea.)
NO contact sports.
NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)
NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.
NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.
NO moving around in the dark!
NO putting yourself into stressful situations or relationships.
NO twisting your spine – try to keep a good posture with your spine lined up and straight.
NO bending over. lower yourself to the floor by bending your knees – not your back.
NO sudden spinal/neck movements.

NO using the hair wash sink at the hair salon.
DON’T try to keep commitments when you’re feeling badly. Listen to your body.

NO excess coughing or sneezing

NO weight lifting

So, I just went to the asap.org forum. It is a site for people with syringomyelia. I posted a new topic, so other people can give me feedback as to what they were told regarding limitations. I hate having so many unanswered questions. I'm so stressed and feeling down in the dumps. I have a decent support system going right now, but more on that later. I need to go try and unwind before working all night.

What next?

Picking up where I left off...

The NP called me back. Unlike past times I've met with her, she seemed rushed and distant. Maybe because she wasn't getting paid for this encounter as she would with an appointment in the clinic. Maybe because she wanted to get out of work on time and get home for dinner. Either way, I felt she didn't give me all of the answers/attention I needed to ease my mind.

Q:Where and size?
A:C6-C7 2.5 cm syrinx, and syrinxes mildly throughout my thoracic spine
Q:Activity Limits?
A:Straining, heavy lifting, shoveling heavy loads, the Valsalva maneuver, etc.
Q:Symptoms I should be watching for or that I should come in for?
A:Balance disturbances, weakness, loss of sensation, bowel/bladder issues, swallowing trouble, and change in type or frequency of symptoms.
Q:Frequency of MRIs and Dr. visits?
A:Follow-up Dr. visits every 6 months, with annual MRIs to check for expansion
Q:Impact on pregnancy?
A:I would need to consult a neurosurgeon prior to getting pregnant. Pregnancy and delivery can be a huge strain on the spinal cord. Surgery may not be necessary but they would be able to best recommend a course of action.
Q:Any doubt it could be something else?
A:Other various neuropathies are possible but unlikely at this time. If things progress the next step would be to do a EMG.

She also made note that my syrinxes are not caused by the Chiari malformation as many cases are. Mine may have been caused as a result of trauma from my car accident years ago, or could be idiopathic.

That is all I got from her.

My mind is still racing. She told me not to worry and not to look stuff up online. But how can I not? She was fairly quick and vague with her responses. So here is what I've found that concerns me:

- Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining. (http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm)
Really? Coughing? Each time I have coughed since I read this the first thing that goes through my mind is: Are my syrinxes expanding???

-Recurrence of syringomyelia after surgery may make additional operations necessary; these may not be completely successful over the long term. (http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm)

Awesome....

-Pregnancy and vaginal delivery can be a relative contraindication for patients with syringomyelia. Pregnant patients may require special care because pushing and straining during vaginal delivery can potentially enlarge a syrinx. Although a C-section may be recommended, patients should have a full discussion with their obstetrician. (http://www.spineuniverse.com/conditions/what-syringomyelia)

Pregnancy a contradiction.... vaginal delivery a contradiction.... recommended C-section.... (not mentioned here but other areas: avoiding epidurals....) There goes the majority of everything I ever wanted in life. 4 to 5 kids will not be likely under an anesthesia-aided c-section, it is barely recommended to have more than 3 c-sections and a large part of that is how one's body heals. What about working with a midwife? Can I still have the water births I've wanted? Will the water relieve spinal strain, maybe with the help of pain medication to avoid the CSF increases associated with labor pains? I guess first of all... can I even safely carry a baby to term without risk of destroying my spinal cord?

• 
  

-About 20% of all patients died at an average age of 47 years. (http://www.arachnoiditis.info/website_captures/syringomyelia_copyfromweb.htm)

WHAT?! I have a 1 in 5 chance of dying before the age of 50??? Are you freaking serious?! I need to find out more on this...

-Shunting of syrinx cavities, when performed alone, historically has been complicated by a high rate (up to 50%) of shunt failure or blockage and recurrent cyst expansion. (http://emedicine.medscape.com/article/322348-treatment)

Another lame treatment.

-Avoid activities that may make symptoms worse
If you've been diagnosed with syringomyelia, avoid any activity that involves lifting, straining, or putting excessive force on your spine. These activities include, among others: Playing high-impact sports, such as football and rugby, Riding roller coasters, Skydiving, Straining during a bowel movement, Excessive coughing (talk to your doctor about treatment if coughing persists), Lifting anything that weighs more than 15 pounds (http://www.mayoclinic.com/health/syringomyelia/DS01127/DSECTION=lifestyle-and-home-remedies)

High impact....does that include running? On some websites it does. No more rollercoasters?! Again with the coughing... And not lifting anything more than 15lbs!!!!!! How is that possible? My purse practically weighs 15lbs... okay, well maybe not that much. But still. How can I lift weights to maintain my physical fitness when things get worse?

I don't like any of this. Not at all. Please... if you are reading this and know something helpful or can help clarify things for me - I would more than appreciate answers and advice.

The "S" Word

I'm 23 years old and I have syringomyelia.

Let me start at the beginning of all of this...

Back in the fall of 2009 I was tutoring one day and half of my body when numb and tingling. It was my arm and leg on one side of my body. At this time I can't recall which side. I thought it was the weirdest thing ever. I called my friend Clyde on my way home because I knew he was around and available. I told him what was going on just in case I crashed, then at least someone would know what happened. I made it home safely and within the hour it cleared. I haven't thought about it in months.

Fast forward to March 13, 2010 at 3am. I was sitting at the kitchen table browsing websites for a new digital camera. And instantly, my left half of my body when numb and tingly. A greater portion of my face, my entire arm and entire leg. The first thing I thought of was a stroke. I ran to the bathroom and looked into the mirror. No facial droop or asymmetry. I could still move the affected areas and feel sensations. I put an end to camera shopping and went to bed. I woke Josh up to tell him what was going on. His first words were "just like last time?". And then it hit me, it was very similar to that one day in the fall. I stayed awake for an hour, hoping it would disappear like last time. It didn't. I cried myself to sleep still numb and tingling.

The next morning it was still there. By noon, almost 9 hours later, my face felt normal and it started resolving in my shoulder and upper leg. I went to work for 3pm. The best part of working at a hospital is having professionals at my disposal to question. By the time I was at work it was only affecting from my elbow down to my fingers, and my knee to my toes. My elbow and knee joints felt dull and throbbing. The nurses on my floor threw out suggestions of Bells Palsy or a pinched nerve, but talked themselves out of it. So I asked a surgical resident. He thought it was probably a brain thing given the distribution and that it affected my face. He suggested I see a neurologist. I went to bed at 2am on March 14th, only to wake up at 11am feeling fine.

March 15, 2010
3:45pm - 6:00pm
My left arm from my elbow down goes numb and tingling while I'm sitting in class. It remained that way while walking to my car and driving home. I'm beginning to get suspicious that only my left side is affected by these spells.

**I should note this numbing and tingling isn't like when your arm or foot falls asleep. The numbness is not as intense and I can still feel touch, and the tingling isn't painful like the pins and needles sensation.

March 26, 2010
5:30pm - 10:15pm
Both of my arms go numb and tingly from my elbows down. It started with my right arm and within a half hour my left arm followed. I was simply sitting in a car, riding around and viewing apartments with my friend. I opted out of babysitting the next morning not knowing if this episode would last into the morning. But at least this time my right arm was involved... that is a good sign... maybe.

I made an appointment with my doctor for March 31st, first thing in the morning. Both her and her nurse practitioner ran me through the gamut of neurological functioning tests. Then they ordered up blood work to look at all of my vitamin levels and hormones. They also ordered up an MRI of my head and neck to look for signs of Multiple Sclerosis which is common in women who are far from the Equator.

Friday April 2nd, I had my MRI. That was a whole new experience for me. They gave me headphones tuned into a great country station. How they ever expected me to hear the music was beyond me. MRIs are LOUD! Every scan was banging and pounding in my ear. And there were different sounds. Some sounded like an alarm clock or fog horn, while others were like a jackhammer in my ear. I like to call my apparatus my "space suit" since I had my head and neck locked in some sort of helmet to prevent movement. The guy performing the MRI was so amazingly nice and really made sure I was comfortable with everything going on. Then they injected me with contrast and took a few more scans and I was on my way, only 1 hour after arriving.

Later that afternoon, I was up visiting my future in-laws, when I got the call. My blood tests were fine, just a low Vitamin D level, which is explainable after a long snowy winter. But my MRI wasn't so normal. They found a "spot of concern" on my cervical spine. At the time they thought it was either 1)a cyst formation or 2)demyelination (aka MS). They pushed me in with the nurse practitioner at the neurology clinic for the following Tuesday.

Tuesday April 6th, and I'm in the neurology clinic. The NP runs me through a more extensive gamut of neuro function testing. She notes that my reflexes of my lower extremities are hyperreflexive. (I googled this to find out that is it congruent with spinal cord injuries...hrmmm.) She mentions a syrinx, but at the time I wasn't listening well enough to say it much the less spell it. She orders an MRI of my thoracic spine and 2 tests: evoked visual response (to scope out my optic nerve for MS signs) and median somatosensory-evoked testing (to see how well my spinal cord conducts through this area).

Friday April 9th, (Keep in mind between all of these appointments I'm driving 2.5 hours each way between school and home. My poor car.) my second MRI. This one was roughly a half hour long. They really cranked the music for me which was much better. The head radiologist was there and after reviewing my scans decided he didn't need to add contrast. I thought this was good and that they didn't see anymore areas of concern. (I'll find out later I was wrong.)

Tuesday April 13th, bring out the electrodes. When I arrived the woman put about 20 red marks on my scalp, grinding her pencil through my hair hard enough to leave a mark. It hurt, I was not a happy camper. For my visually evoked test they covered one eye at a time and make me look at a flashing checker board on a TV. This would tell them how well my optic nerve was sending images to my brain. For the somatosensory test they hooked a small stimulator to my wrist. The stimulator made my thumb twitch which was fascinating to me. This test measured how fast the signal would go from my wrist to my clavicle to the back of my neck to the top of my head. They performed this on both sides.

All of Tuesday they didn't call with results. Wednesday the 14th came and I stared at my phone all morning. I couldn't sit still in class. Around noon, I called and left a message asking about the results of my tests. Around 1:30pm, a random clinic worker called to say that my electrode tests were fine, but my MRI showed syrinxes mildly throughout my thoracic spine. What did this mean? I had no idea. I told her to relay to the NP that I had many questions and would like to speak with her. My afternoon class was filled with more anxiety and staring at the phone.

Finally she called while I was tutoring. (back where it all began.) I grabbed my list of questions and started rambling and taking notes.



I'll continue with this post tomorrow. I'm exhausted after a long day at clinical and have to be up early for classes. I'm glad I've found some place to lay out everything that continues to cloud my mind.