Neck Brace

The pictures above are of me when I wore my neck brace. These were taken about eight or nine months after my accident, when I was 16 years old. After getting my halo removed in February of 2003, I was ordered to wear this neck brace until I was fully healed. I remember not liking it very much, although it was a lot better than having metal screwed into my skull. After wearing this brace for a few months I switched to a soft collared brace. That one was even worse, and I mostly only wore it when I had a doctors appointment.

Jenni

Surgery on My Neck: Post-Op

I ended my last blog post talking about the pain in my neck along with my surgery options. Well, let’s just say things didn’t go quite as planned. As I wrote before, I opted for the larger surgery because of the long-term benefits and decided not to go ahead with the small surgery. Surgery was on May 6 although my stay in the hospital was more than the initial intended time of 3 to 5 days. I got home from the hospital May 13 and have been in the recovery mode. I spent a little over a week in the hospital due to a few setbacks during the procedure. 

 

The two surgeons that were working on me were an orthopedic surgeon and neurosurgeon, I couldn’t have asked for a better team. The problem came across when they opened me up and saw that the bone spur was bigger than they expected. The team was also worried about spinal fluid leakage along with baclofen leaking because that’s right around the area that the catheter sits for my baclofen pump. After removing the spur, they put the "plug" in place as planned and then instead of doing the larger surgery they did the smaller one (both surgeries explained in previous post). I spent 4 hours in surgery as opposed to the 12 originally set aside.

This is what the bone spur looked like from a CT scan. It's the white pointed spot between C4-C5 (towards the middle of the picture) that was facing towards my spinal cord. Since they've removed it, I've had significant less spasms and pain relief even though things didn't go as planned.

 
The surgery for the actual fusion (originally planned in the first one) from C4-T3 has yet to be rescheduled. I’m still recovering from this one, especially only being 3 ½ weeks postop. I have to wear a neck brace 24/7 hopefully only until my postop appointment on June 23. I missed my first appointment on May 18 because I wasn’t able to sit in my wheelchair for more than a couple hours. I’m still working towards being in my wheelchair for the length of time I used to (about 10-12 hours) but it’s a slow process. My body can only handle so long before I have to get back into bed. Right now though I am up to about 6 and I’m slowly increasing every day.

This is the view from my patio that was recently built. The picture also shows the neck brace I have to wear.

Recovery and rehab time/process afterwards is always unknown in these situations but I’m hoping it won’t be too much longer before I’m back to normal. I've been trying to get outside when it's nice even if it's just sitting on my patio. Although, my dog Brody sure loves his walks so I've been taking it slow rolling down the streets with him! Like I stated above I’m not sure when I’m going to have the actual fusion; I guess I’ll have to decide that at my postop. I appreciate all of your thoughts, prayers, and concerns. Please don’t hesitate to ask questions and I hope to fill in more details as they come along.

Jenni

On the Ball

Many people with spinal cord injuries struggle with curvature of the spine due to lack of muscle stability and movement. This may require the use of a back brace. At worst case scenario surgery is needed to fuse the bones together in order to fix the problem.

After I got my halo taken off, the doctors fused my neck from C-1 to C-4; the rest of my spine is not. I curve in three places: at the base of my neck, in my thoracic region (in between my shoulder blades), and in my lower back. Aside from a sideways curve, my lower back also curves inward causing lordosis (more commonly known as arching).

I wear a back brace every day while I'm up in my wheelchair, about eight hours, to help keep my spine straight. However, over time the curve has gotten progressively worse. In order to avoid surgery my therapist has been thinking of ideas to straighten my spine out.

About a month ago my therapist had an idea of putting me prone on one of those big exercise balls. This would help my back from curving. The first day I did it I wasn't nervous at all. When they got me flipped over I immediately felt nauseous because the ball was pushing on my stomach. After getting positioned correctly, they were able to get my spine fairly straight and my muscles relaxed. The position was a little awkward and not what I was used to, but manageable.

The second time I did it was two weeks later. That time I had three therapists with me. Like the first time, I felt nauseous in the beginning. This time I actually threw up (first time since before my accident) because the ball was pushing on my vagus nerve. It came up by gravity; I didn't gag at all. Despite the unpleasant experience, they were able to get my spine even straighter than the first time.

On Friday I went on the ball for the third time. This was two weeks after the second. The amazing thing was I didn't feel sick at all and they got my back completely flat. They even got most of my curves to straighten out. I posted a picture of me on the ball below. It doesn't show my whole body, but you can get a general idea. I think we are going to continue to do this every two weeks because it can help to avoid surgery.

Jenni

Journal History I

On November 1, 2002 I was in a car accident. A few days later, my family started a CaringBridge site to keep everybody updated on what was going on with me. It's very interesting for me to read back through the Journal history since I don't remember much from directly after my accident. I'm creating a new series called Journal history in which I will continue to post most of the entries for all to read. Here are the Journal entries from November 5 through November 17.

Tuesday, November 05, 2002 at 08:14 AM (CST)

Jenni has had some progress. Sunday (11/3) she was placed in a Halo brace to keep her neck immobilized. Monday (11/4) she had her breathing tube removed from her mouth and a breathing tube placed in her trachea. We welcomed this operation to provide more comfort for her throat and now when she mouths her words to us it is much more comfortable.

Saturday, November 9th, 2002 6:45 PM

Although Jenni had a quiet night last night, she did not sleep well. Today she wanted to rest alot and we agreed she should. The nursing staff is the best, and Jen is comfortable with all of them. They are keeping her busy with tests and different things that will help her recover faster. The staff stressed the need for "quiet time" for Jen, we realize how important that is. We want her to recover just as much as everyone, so we are letting her rest as much as she needs. The family thanks everyone for the continued support, and we will let you know when she is able to have visitors more often. Thank you and God Bless.

Sunday, November 10th, 9:45 PM

There was not much change in Jenni' condition today, but we know with each passing moment her body is healing. Jenni is so strong! Kevin, Lori, Cindy and Kristen would like to say THANK YOU to the enormous network of family and friends who have come together in support. You have given us the strength and courage to cope. Jenni also knows you there and she is comforted. Coach Cos says; "Together" and we feel together. You are amazing people. God Bless you all.

Tuesday, November 12, 2002 at 08:58 AM (CST)

Jenni had a good night last night. Nurse Marylou wheeled in a TV/VCR and we listened to a movie until the Sandman came. He stayed with Jenni most of night, and this morning she feels rested. Today the Staff is working on elevating the bed more often, and for longer periods of time. We are continuing to hope and pray for Jenni and know you are too. God Bless.

Tuesday, November 12, 2002 at 07:20 PM (CST)

A pretty good day today for Jenni. She had a visit from the Occupational Therapy department. They had her sitting upright in bed for about 5 minutes. It was a little uncomfortable, but a necessary stop on the road to recovery. Wednesday she gets to try a reclining chair. She enjoyed the new view of her surroundings. She also got some personal dental work from Cindy who filed a sharp point off her front tooth. It sure feels better, thanks Cindy. Jenni did ask her cousin Kari to find her a poster of "EMINEM"-(with his shirt off), to put on the ceiling for when she is lying on her back. We'll clear that one with the Staff. She sends her love and thanks to all of you. God Bless.

Wednesday, November 13, 2002 at 11:43 PM (CST)

Jenni writes tonight's journal entry:

"Dear friends and family of mine,

I love you all so much and I am so thankful to be in your prayers.
God bless you all. Thanks for writing to me and keeping my hopes up.
I love you all so much and hope to talk to and see you soon".

With love,
Jenni

Thursday, November 14, 2002 at 09:44 PM (CST)

Today was a very busy day for Jenni. This afternoon she went to surgery to have an artery in her neck "sealed" This was done to prevent any clots from releasing and moving to her brain. We feel much more relieved now.

Jenni received a new trachea tube today however it turned out to be "not quite right". Another should be delivered on Monday. She is being very patient through all this, a definite sign of her strength and courage.

Saturday, November 16, 2002 at 1:58 AM (CST)

Good morning. Jenni had another milestone today. She got 10 very proud minutes in a chair! She was not quite upright, but good enough that she was finally able to see the rest of room she has been in the past two weeks. She was so excited. (Aunt Sandy took advantage of the empty bed to surgically tape an "EMINEM" poster to the ceiling. No more boring ceiling tile dots to look at.) We then had a mini photo shoot, taking pictures of Jenni with everyone there; Dad, Aunt Sandy, Aunt Julie, and nurses/new friends. What a ham! Late last night Cindy pampered Jenni with a scalp massage and hair brushing, while Dad did his best at a facial. Jenni loved it so much she didn't want us to stop. Later, a Respiratory Tech named "Ta" stopped and French braided her hair. (She actually bailed us out because we weren't sure what country her braid would've been from had Cindy and Dad done it.)We pretend we are at the "Ped's ICU Resort and Spa", a relaxing place Jenni can go to and take her mind off other things.

We may be moving Jen next week to Gillette Children's Hospital in St. Paul for rehabilitation. We visited the facility on Friday and were very impressed. Jenni has the "can hardly waits" to go there. We will keep you informed. Thank you for your continued support and prayers. God Bless.

Sunday, November 17, 2002 at 09:36 AM (CST)

We would like to devote this journal entry to educate you about Jenni's injury and present physical condition. Jenni suffered a compression injury to her neck, specifically her spinal cord in her cervical vertibrae,(C1-C2),at the base of her neck. As a result of this injury, she does not have voluntary control of any muscles below this point, including her diaphram. She is on a ventilator to provide her breathing. Above the point of injury, she is completely functional with the exception of her voice. The ventilator tube enters her trachea below her vocal cords.

Eventually she will learn to pass air across her vocal cords allowing her to speak with sound.
At this time there is nothing surgically or medically available to repair spinal cord damage. None, partial or full regeneration of the nerve cells may happen, but only time will tell. You can learn more about her type of injury by visiting www.spinalcord.org. A link is provided below.
We hope to move Jenni from HCMC Peds ICU to Gillette Children's Hospital in St Paul for rehabilitation as soon as we get the ok.

Thank you again for all your support through prayers and thoughts. God bless you all.

Overdue Update

It’s been a while since I’ve written an update. The biggest news is my accomplishments at ABLE. I know I’ve written quite a bit about it, but the exercises that I have been doing have helped me in big ways. I still do the same ones but have improved in length of time and structure. 

After hooking up the electrodes to my abs, obliques, lower back and between my shoulder blades, I’ve been able to successfully sit on the side of the mat by myself without help. The PTs that I work with just sit down and keep their hands close to me in case I start leaning over. It’s also helped me be able to sit forward in my wheelchair without help to get my back brace and my sweatshirt on and off. This also includes stretching my back.

To recap about what electrical muscle stimulation (E-stim) is, it can be used to help treat pain and heal injured, weak, or diseased muscles. Electrical currents may help improve blood flow and stimulate the muscle fibers or nerves. They also use it on my arm’s, and then move them simultaneously into bicep/tricep curls, along with forward reach and grasp (essentially moving my arms forward and then backwards.) 

They do each set for about 10 to 12 minutes at a time, then I take about a 3-5 minute break between each one for 1 hour. With my abdomen, the stim runs for an hour also, and then I move myself side to side and back and forth. On Wednesdays is when I do stim on my abs and then move myself side to side, and on Fridays I use a bicycle that moves my legs and then stim on my arms. 

Each session wears me out completely, and I usually need to take naps after. Then I get into bed earlier and go to sleep earlier. It’s a big workout for my body, especially being paralyzed from the neck down. I’m very lucky that I have feeling, and can tell which muscle I am using, tightening it to move the way I need to. It really helps with ABLE.

I’ve also been obsessed with writing poetry. So much so that writing my book and inserting posts on my blog have been put aside. I go on the website at least twice a day, finding topics from contests to write about. Sometimes, I feel guilty for not writing my book or my blog for so long, but I’ve been improving my writing skills a lot lately with writing my poems. I would like to publish a book with poems I’ve written in it. I have posted my most recent ones below.

For quite some time now, I’ve been having bad neck pain. Talking with my therapists and doctors, neither could locate the source of it. After dealing with it, I finally made an appointment with my neurosurgeon. Tuesday was one of the longest I’ve had as far as appointments go. I left my house at 12:30 PM and didn’t get home until almost 6 PM. First, I had an MRI then a CT scan, then saw my doctor. Since I can’t have anything metal on me for the MRI, the respiratory therapists there needed to change out my trach. Mine has metal in it; they also changed from my ventilator to an MRI safe vent.

It was a very uncomfortable and difficult time but needed to get done. The results were good and bad. Good in that they didn’t find anything that would cause any harm, like a bone spur or my bones to be digging into muscles. Although, bad because it didn’t explain why my neck is hurting. My doctor thinks it’s hurting from muscle or nerve pain, which is what I thought as well. It’s also a thought that my wheelchair needs to be adjusted and that may be the cause.

For now, I’ll continue to do as much adjusting as possible to avoid it. I’m grateful for ABLE as it has been helping with my balance and moving. I’m also glad that I came across the poetry website so I can increase my creativity in writing and use that while writing my book. Hopefully soon I will get back to my book and finally be able to share it with all of you. In due time!

Jenni

Here are some recent poems I’ve written. Enjoy!

When Everett saw me

I was only gone for the day,

when I came home, Everett saw me,

he ran towards my footrest,

climbing his way onto my lap

Ever since that day happened,

he’s found his way up several times,

I don’t know how he can jump that high

but I was smiling ear to ear

There are many more moments,

in which my dog has made me happy,

but learning that he recognizes 

that his mom in a wheelchair, tops all

My Dog Everett

One ear up, one ear down

zooming around the yard

bouncing in the snow

with no place to go

Barking at the TV’s

and the squirrels in the trees

playing fetch with his toys

making all sorts of noise

Loves every dog he meets,

including the people he greets

if he could have his way

he would play all day

Everett is his name,

he likes to play all sorts of games,

a Chinese crested powderpuff

and he thinks he’s really tough

Oh, to fly

I wish I could fly like a butterfly,

soaring high into the open sky

with invisible fences around me

feeling the fresh air on my wings

I would fly to many places,

above the earth’s green grasses

go sailing in between the clouds,

dancing with the stars and sun

Since I can only imagine flying

I’ll close my eyes and think of

taking flight into the unfamiliar

finding a stick to land on to

the hot sun shines down

on a wild goose in water

soaking up its twin

My Blog: Highlighting Top Posts

Within this day and age, it seems like virtually every company, artist or individual has a blog. As for me blogging is a way to provide information to others along with creating a stronghold on specific topics related to myself and spinal cord injuries. In a sense, my blog is a good representation of what I stand for making it unique to me. My goal is to share my story, giving others a glimpse into the life of a quadriplegic.

There are many ways in which I develop my blog posts and ideas. Sometimes I just type into Google "blog post ideas" and I get a variety of lists. Other times it’s from people’s comments, questions or thoughts. I encourage people to ask questions and explore their thoughts with me. By covering every angle of a question, I can usually create a post. Occasionally, I will do an update post to let people know how I’m doing or what I’ve been up to.

Over the years, my blogging career has changed. I believe I’ve gotten better at writing because of it. Also, I have found a niche as to what I believe my readers want to hear from me. By doing this I’ve perfected my style and created specific topics to showcase all sides. I don’t copy other bloggers alike in this case being my own authentic self.

I’ve learned that building a successful blog takes time. Some of my top blog posts are when I share updates about myself and when I talk about sharing my story with others. Below are links to some of the top posts created and visited:

Sharing My Story

Strength from Within

Getting Taller

 

Trach 101

 

Speaking after My Accident

My Body: Spasms and Pain

True Friendships

My Big Day

Ms. Wheelchair America Contest 2012

Obstacles in the Community: Sidewalk Ramps

Spasticity & Muscle Spasms

Regulating Body Temperature

Overcoming Challenges

Neck Brace

My Ventilator

Why I Get Botox

Life As a Quad I: The Basics

My Body: Spasms and Pain

During my accident, I broke my neck at C-1 C-2 and injured my spinal cord. There are two types of injuries, complete (spinal cord severed) and incomplete (spinal cord bruised or crushed). My injury is the latter, incomplete. Because of this, my brain is able to send some signals through my spinal cord to my body; this is the reason why I have feeling and slight movement. I also have muscle spasticity below my injury level which results in muscle spasms. Usually a spasm is caused by simulation to the body in various ways including range of motion, pain, infection etc. In instances like these, my body moves, shakes, and twitches as a result.

It may be hard to picture what a muscle spasm looks like unless you have witnessed one before. I've had many people come up to me during one and say "you can move!?!?" Disappointingly I have to tell them "no, it's just a spasm." One time my arms spasmed up at the same time someone tried to shake my hand. That made for an awkward situation for the other person because they thought that I was actually reaching out to shake their hand. I always react or come back with a humorous response to put people at ease in those situations.

Sometimes I get frustrated with my body. Often spasms come at inconvenient times and can disrupt my daily routine. Most times I have a spasm, my muscles get extremely tight and it makes it very difficult for someone to move me or do cares afterwards. It can easily get to the point where the spasms actually cause me pain in places I didn't have it before. This is especially true if I get twisted in a strange position because of them.

On the flip side, spasms can actually be good. Since I'm unable to move, they act as a form of exercise for me. One reason a spasm may happen is if I haven't changed position for a while. The spasm allows my body to move in ways it doesn't usually get to. In this case, occasionally it might feel good to spasm because it stretches my muscles. Another reason I would have a spasm is due to pain. My body reacts to the feelings in my body, so if I'm in any sort of pain it tries to reposition itself by spasming. I guess in a way this can be good also if I don't have the time to stretch or change positions to alleviate the pain. Spasms can also be a sign of an infection somewhere in the body; the benefit of this is that I can figure out if I have a urinary tract infection.

There are a few medications that can help with spasticity. One of them is baclofen, and that is what I used to take orally for a few years after my accident. When I reached the maximum dose I could take, and my spasms were still extremely bad, I had a baclofen pump surgically implanted. A tube from the pump wraps around and is inserted into my spinal fluid. On a set time period it releases a certain amount of baclofen. This helps it get into my system quicker and works better than taking it orally.

Lately, I've been having a lot more spasms than usual. This is caused from the pain in my right shoulder which is possibly due to my arm slowly dropping out of the socket. I had an MRI done to confirm this and in the last six months have tried multiple things to relieve it (i.e. ice, heat, massage, physical therapy, high adhesive tape, ultrasound, tens unit etc.). I've also resorted to some pain meds including ibuprofen, Tylenol and even Valium. Pain wise, some days are better than others but it varies with different activities and stresses. I think I'm doing all the right things, but only time will tell whether or not everything is helping.

Another thing that happens with my body is muscle tightness. Since I'm either sitting or lying down and because my muscles can get so tight they are pulling my bones causing a curve in my spine. This makes it really uncomfortable to be in some positions, so when I'm up in my wheelchair I wear a TLSO (back brace) to help straighten my spine. I also wear AFO's (foot braces) to keep my feet from tightening up and turning in. At night, I use elbow and hand braces to keep my arms from tightening up. Click here to learn more about my braces.

There are many things that go with being a quadriplegic but these are just a couple that stand out. If you have any questions about anything I said or want to learn more feel free to ask; I'm very open. Also, to learn more about muscle specificity or anything related to spinal cord injuries click to go to www.apparelyzed.com

Jenni