New X-Rays!

 Rods from the side

 from the back

 zoom-in on the back

zoom-in on the side

6 week checkup!

I had my 6 week checkup with my surgeon this Monday!  It was originally a snow day but we ended up using it.  My appointments weren't until later in the day so we went prom dress shopping in the morning in Rochester.  Unfortunately I didn't find anything I liked, and most the dresses were much over our budget anyways.  I was surprised that I couldn't fit into a 00, which i usually my size, but a 1 was still much too big.  I haven't gained back all the weight I lost during surgery so the fact that I couldn't fit into a 00 dress was because my muscles are still healing from being moved around during surgery.  I asked the surgeon why the muscles in my thighs and stomach are still sore since having surgery and he said that's due to the moving around of muscles done during surgery also.

The first nurse that came in to ask me how I have been doing was shocked to know I don't even take tylenol everyday anymore.  She said if I had been a middle age patient undergoing the same surgery I would most likely still be on narcotics.  It just goes to show how much faster a younger body heals!  They said the x-rays look good too, but they won't have evidence of healing until 6 months after surgery.  They are going to send a CD with my x-rays on them and once they do I will put them on here and on my blog and facebook for anyone interested in seeing how much straighter my spine is!

I still use a pillow to sit at the desks at school and leave my classes 5 minutes early because I do still have some soreness and being bumped would be painful.  

Overall, I'm doing great and I don't have to go back to the doctor for 6 more weeks.  After 3 months they will move my weight carrying limit to 20 pounds which I am very excited for!  It's amazing what little you can carry that is under 10lbs!

I'm just as amazed at my fast recovery as everyone else and I'm very thankful for everyone that has helped me along the way! 

Back to School!

It's been a little over a month since my surgeries and I'm doing much better than I thought I'd be doing.  I've been in school since the 23rd and I've been going full days instead of half days like was originally planned because I only have 4 classes.  The hardest thing about being back in school is minding my ten pound carrying limit.  With textbooks and binders its very easy to go over, so I get to keep an extra set of books at home.  I also carry around a small pillow at school because otherwise the desks are way too uncomfortable. 

The hardest part of the day is by far night time.  I find it difficult to get into comfortable positions and stay asleep all night without waking up in pain.  I use a heating pad on my back some nights to help ease my muscles.  I'm hoping the sleeping issue will get better with time.

I've been off my Rx for almost 3 weeks now, and just taking tylenol.  The past few days I've been trying not to take any at all.  I do still have some pain but it's managable for the most part.  When it gets really bad I just lay down for a while then I'm usually fine.  I go back to the doctor on the 20th for x-rays and to meet with my surgeon.  As far as I can tell everything is going well but it's hard for me to know what's going on inside.  The bone will take about a full year to heal so I'm sure I'll have to go back for multiple check-ups just to make sure everything is healing correctly. 

I am very greatful that I did this surgery and I don't have one regret about it! I would recommend it to anyone with severe scoliosis that causes back pain! 

Pictures!

The day before my surgery, my surgeon had to inital me. Apparently, this was new policy and no one liked it but the nurses looked for it before proceeding with surgery.

 My wonderful boyfriend came to visit me!

 Kelsey was one of my main nurses and by far my favorite!  She was always cheerful which made being in the hospital much easier! 

 These are the two side incisions on my left side from the first day of surgery on December 29th. The small incision that isn't covere is from my chest tube.

 This is the scar on my back from the second surgery on December 30th. The two smaller incisions on each side of my back incision are from the fluid drains I had.

After having the IV in my right arm something they gave me made my whole arm bruise!  It looks much worse in person!

Surgery was a success!!!

It's been so long since I've updated this so I have lots to say so please just bear with me! This could be long! After having an MRI and meeting with the spinal specialist December 29th, it was decided I was decided I could actually have surgery this time!  This was a huge relief but also brought on new stresses!  I had two teams of surgeons who decided I would be having a two part surgery.  The 29th was the first surgery which lasted about four hours and they made two incisions on my left side and put a rod in on that side.  The next day I have another four hour surgery and they went in from the back and put the second rod in on the right. 

They decided by doing this it would be less stress to my body, I would have a better recovery, and they wouldn't have to fuse as many discs.  They ended up only having to fuse four discs which is great compared to the five to seven they were gonna fuse.  They ended up fusing from T11 to L2.

The first few days were rough, but they got better and I started eating better. I even got wheeled down the hall and had my hair washed!  After that I started getting more nausous and I couldn't keep food down.  By the time they wanted to dismiss me from the hospital I couldn't eat anything because it wouldn't stay down for more than thirty seconds. They discharged me anyways.  The car ride home I was very car sick.  We had to stop in a near by town so I could go to the bathroom and the smells of fast food joints made my car sickness go crazy!

The first few days home were the worst.  I tried to get up and move every hour like they had me doing in the hospital, but I still couldn't keep food down.  Nights were the worst because I would get so stiff and that would cause my pain to rise.  Now I am sleeping much better and managing the pain.

On Friday my brother was doing my hair and all of a sudden I felt like I was slurring my words.  My brother and mom assured me they could understand me.  Seconds later my tongue started swelling and I was having a hard time breathing.  My mom quickly called the number to Saint Mary's in Rochester where I had surgery.  They said they thought I was having an allergic reaction to one of my medications.  We climbed in the van and my brother sat in the back with me and tried to calm me down.  I was so scared that I was going to die it was impossible to stay calm.  Once we got to the ER a man tried to help me in a wheel chair but he didn't seem to understand I that I couldn't twist my body. He kept telling me to twist my legs around and my brother finally got mad and said, "She can't twist! She just had back surgery!"  They got me back into a room quickly but to me it seemed like it was taking forever.  After a few nurses and a doctor looked at me they finally got an IV in (which was a process in itself!) and they gave me benedryll and I think something else.  Shortly after I was able to breath again! I was also feeling very loopy and tired from what they gave me. 

We had to stay there for a while so they could make sure I was doing okay.  Another doctor came a couple times and talked about the medications he was switching me to to prevent the reaction from happening again.  He didn't seem to understand I couldn't take any anti-inflammatory drugs, because of surgery.  When we got home my mom called Saint Mary's to verify that the drugs they switched me to were safe.  They ended up cancelling one of them, but other than that I have had no more allergic reactions or negative drug side effects, other than drowsiness which is to be expected.

I am learning new ways to do things myself!  I have a shower chair so I can shower without assistance and my brother bought me a grabber so I can pick things up off the floor.  I even had to get a new bed frame because my old one didn't have enough support for my new healing back.

I have a great family who has proved to be wonderful nurses!  Since my older brother is home from college he is my main caretaker since Mom went back to work today.  I am keeping food down much better and just enjoying some R & R time.  Thank you to everyone for your prayers and support!  I am more than thankful for these and they make my healing much speedier!   

You want me to see another doctor? Surprise, Surprise!

Once I came home from school yesterday, I greeted my mom as I walked in the front door.  She replied with, "Someone from Mayo called, you need to call them back."  I turned to my friend in confusion.  Why would they need ME to call them, usually my mom handled the phone calls.  Feeling very anxious about what they could be calling me for, I picked up the phone and dialed the number my mom wrote down.  I found out right away it was the orthopedic surgeon line, but I was put on hold for a very long time.  So long that I think they had forgotten about me.  I stayed on the line and grabbed my cell phone and called the same number and got through right away.  So much for waiting 20 minutes!

It was a mandatory phone call, reminding me of my upcoming surgery the 29th.  Reminding me I had to be there the 28th for blood tests, urine tests, MRIs, x-rays, meeting with the surgeon, etc, etc.  Here came the unexpected news: I had to be there the 27th to meet with yet another doctor.  This one being a specialist on the spinal cord.  He will be assisting during the surgery.  I assume because of the myelomalacia on my spinal cord, which they found in July when I was first scheduled to have surgery.  

My biggest fear is that the myelomalacia has gotten worse, or that it will prevent me from being able to have surgery to correct my scoliosis, a second time.  Having it cancelled the first time was a similar feeling to having Christmas cancelled.  I can't put the dissapointment, sadness, and fear into words that anyone will understand.  

Next week I meet with my principal and counselor to figure out what we'll do my second semester of my senior year if I have surgery and have to miss a month or more of school.  Being a senior in high school, my biggest goal right now is to graduate.  Which is the main reason we were going to have surgery in the summer: so I wouldn't miss school, and it wouldn't interfere with anything important.

I'm praying for the best for myself.  I have a great support team, and I have something that not many others can say they have.  My best friend is having surgery on her nose 10 days before my surgery to correct her deviated septum.  We both support each other, share our concerns and our hopes.  Best friends do everything together:  even have surgery.  Along with my best friend, her family has been great support, so has my boyfriend and his family, and even greater my own family.  Whatever happens, I do know I'll have lots of people if I need anything.  

No, just because I have nerve damage to my bladder does NOT mean I pee myself a little everytime I sneeze

It's been so long since I posted and I decided it's time to update all of you that follow my blog!  I had two tests on my bladder August 10th and I met with my urologist in Rochester, Dr. Douglas Husmann, the next day.  These were not tests I was looking forward to! I was surprisingly much more nervous to have these two tests performed than I was to have major back surgery!  I suppose you can chalk that up to all the time I had to mentally prepare myself for a spinal fusion, and the lack of time I had to wrap my head around the idea that there might be something wrong with my bladder. 

The first test was a VCUG, or a urinary x-ray.  Going into this test my stomach was in knots and I thought I would pee myself from nerves (no pun intended).  The technician who did my test was more than awesome! He had a great attitude and was sorta goofy but it helped lighten the mood.  The first thing they did was get x-rays of my bladder and kidneys, which by now x-rays are something of regular occurrence in my life so that was the easiest part of the day! After that they took me into a small room and put me on a weird table and we waited for what seemed like hours for the female catheter team to come.  Once they were there technician and his intern left the room.  The nurse Jess stayed to let me squeeze her fingers!  

Just a warning, but I'm not going to hold back on anything in the next few paragraphs so if you are extremely squeamish I would advise you to hire someone else to read the rest for you and then have them tell you what happened in less grotesque terms.  

The nurse had to tell me several times to relax my legs, but come on!  If there was a stranger with a catheter telling you to relax I doubt you would!! I didn't have to hold Jess's hand but I did let out a few whimpers.  Having a catheter in is the weirdest feeling!  I suppose having any foreign object in your body is weird feeling though.  Once that was in they drained my bladder and let the guys come back into the room.  The technician was shocked I wasn't crying at this point (apparently most women cry when catheters are inserted?) and decided to congratulate me by getting down on his knees and making rock on signs and calling me a 'superstar'.  

After this the test went pretty well!  They filled my bladder as full as it could go with sterile water and dye.  I was supposed to tell them when I got the urge to pee like I've never had to pee before.  Or in the technician's words, "when it was time to stop the bus and pee in the corn field".  He said he would probably push me even after I said it a couple times, just because they were watching my bladder fill with water on a monitor so he could see when it was actually as full as it could possibly be.  


I was trying to be brave and they decided on their own they would stop filling me up.  Apparently my toes were curled and one of my legs was twitching so they knew I was pretty uncomfortable.  They then took out the catheter, but I had to hold all the water and dye in me at the same time.  The table was then turned upright so I was standing and they put a weird bag in between my legs. Scott, the technician, compared it to a female urinal.  I was then told to pee, but let them know when I started and when I ended and they took x-rays all the while.  


Scott also told me that 50% of people miss the bag when they start going and he said to just keep going if I missed.  A sheet was laid on the ground, and all it was was water and dye anyways.  I didn't miss, and once that was done I was pretty much done with that test.  What was supposed to take about an hour and a half only took me about 40 minutes.  Keep in mind I was in the adult urology department, not the childrens.  So I was feeling pretty good at this moment.  Scott told me that they usually waited at least ten minutes for most women to start peeing into the bag.  Not because anything is wrong with them physically but because women are told a) they can't pee while standing b) they shouldn't pee in front of others and c) they should never pee in front of men!  I was so darn uncomfortable that I really didn't care about any of the above!  

Since the first test went so swimmingly I was feeling great going into the second test (which was a urodynamic study)!  I was very let down when it got going though.  During this test I was to sit in a chair that had the middle missing, and I had two catheters put in.  One in my urethra and one that could either go in my butt or my baby making hole.  Needless to say it was put in the second option.  After that the technician attached electrodes to my butt (to measure the pelvic muscle activity).  The catheter going to my bladder was bigger than the one during the VCUG, so it was very uncomfortable to say the least.  At one point it even fell out and had to be put in a little more forcefully.  This hurt very badly and everyone in the room was aware that I wasn't too happy.  Once it was in again, she filled my bladder with water and I was told to tell her when 1) I had the first sensation that I had to urinate 2) when I had to pee so bad I would stop watching TV to go to the bathroom 3) when I had to pee very bad 4) when I had to pee so bad that I would stop at a gas station that I was next to even if I was only 3 blocks from home.  When I would stop to tell her these she would ask me to cough at certain times and squeeze my butt muscles as hard as I could. 


This all went well until I was done and had to try to pee through the catheter.  This hurt so bad she took it out and let me pee on my own, which hurt even then.  On the bright side though, I got to watch TV while she did the test!  After this I was on my way home to relax!  Or at least try to relax since I still had to wait for the results...


The next day we were up bright and early since my appointment was at 8 and we had to drive there!  Once we got there, we didn't wait very long at all before we were called back.  I was a bundle of nerves and I think my parents caught onto that very quickly.  Unfortunately they did discover I have some nerve damage when they did the second test.  To try to make this as easy to understand as possible, here's what I understood:  The nerves in my brain are kinda like a stoplight.  My bladder has sphincters and their job is to hold my pee inside and keep it from coming out when it's no supposed to.  There are nerves that go from my spinal cord to my bladder, from my spinal cord to the sphincters, and there are nerves that go from my bladder to the sphincters.  


What the machine picked up is that when I coughed the "stoplight" in my brain flicked from red to green, and it should have stayed red the whole time. What this means is there is some damage.  I really can't remember exactly what the doctor said but I think he said the damage is on the nerves that go from the sphincters to my spinal cord. I'm not positive on this, but I know for sure there is noticeable damage.  Thankfully, the damage isn't affecting any of my functioning so if I hadn't had the tests I never would have know about the damage.  Unfortunately, if my spine keeps rubbing up against my spinal cord this damage could get worse.  The urologist said that having scoliosis surgery could stabilize the damage which is a good thing!  Either way if I have surgery in December, I have to go back in a year for the same two bladder tests, and again in three years to have another ultrasound on my kidney where they found the cysts.  


I'm hoping that I will actually be able to have surgery this December on the 29th.  I'll find out for sure on the 28th when I go up for another MRI and meet with the neurologist and orthopedic surgeon.  It's amazing how all of these doctors have been communicating together just to make sure I'm going to be healthy and they're doing the best thing possible for me.  Being in this limbo with surgery in the future, I'm not sure how to prepare myself.  I was so ready to have it last time that I don't want to be crushed if it's canceled again in December but I'm praying for the best!  I know God has a plan somewhere for me in this mess!