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! 

What the Next Few Months of My Life Will Consist of....

I just got home today and as of right now I have appointments to go back to Rochester in August and December.  Yesterday the neurologist said the spot on my spinal cord is mainly just scarring and is caused directly by my scoliosis.  The scarring is right where my my spine curves the worst.  After an ultrasound on my right kidney they found 3-5 cysts on that one kidney but they are 'renal cysts' so they are totally harmless and should go away on their own.  The cyst on my ovary is very tiny so that one we aren't worried about either.

When I met with the urologist he said they are concerned because where the scarring on my spinal cord could be causing nerve damage in my bladder so I have to go back August 10th and 11th to have testing done on that.  Once we get the results on that we will know better what to do moving forward.

Then December 28th I will go back to have a check up with the neurologist and have another MRI done to see if the spot on my spinal cord has changed at all.  Dr. Kumar (the neurologist) said he is positive we have nothing to worry about with future back surgery or the spot changing but we need to make positive that it is stable and not getting any worse.  If we were to have surgery now the screws they put in would block the spot from being viewed in an MRI scan and we would never know if it was getting worse.  I will also go through all the pre-op work again on December 28th and if all results are good I will have scoliosis surgery on December 29th!  This is just a tenative surgery date though, nothing is for sure until I have another MRI!

Thank you for your prayers!!  This has been a roller coaster emotionally, mentally, and physically! I'm just very grateful I have access to such amazing healthcare!

What a Curveball!

I was supposed to being in surgery mow but we've had an unfortunate change in plans. Yesterday during pre-op testing I was called back for a second MRI. My nerves immediately kicked in! I was so proud of myself, testing was going so well! I didn't even pass out during my blood tests (that is AMAZING for me!!!!) But during the second MRI they had to put a needle in so they could inject my veins with dye. I did not do well with this! It hurt much more than the previous needles and I started crying immediately! Shortly after the room started spinning and everything started changing colors! After a while (and the nurses scurrying around trying to help me!) I was feeling better and all I had left for the day was to meet with my surgeon and another assistant surgeon!

We waited over an hour in the waiting room to be called back and when we finally were called back, we found out why we had to wait so long...my surgeon had to consult with a neurologist because they found a spot on my spinal cord right above my lumbar curve and where they would fuse! They called the spot mild myelomalacia which is the softening of the bone. We had to cancel surgery for today because they're worried if they were to fuse my spine it would block this 'spot' from being checked in future MRIs. It could also cause motor nerve damage which we don't want!

They also found cysts on both a kidney and an ovary! Talk about news! I have an appointment this afternoon for an ultrasound of my kidney and an appointment tomorrow with a urologist. I was going to have to wait until August for an appointment with a neurologist to find out more about the spot on my spine but we got a call this morning and they are fitting us in today!! I am in the waiting room as we speak waiting to be called back! I am also seeing an adult neurologist which was controversial..

Surgery in one week! Scared? Absolutely NOT! :)

In exactly one week I will be under the knife, I'll have two rods on both sides of my spine, screws, hooks, and all sorts of needles and tubes coming from my body.   I have the lowest tolerance for pain out of anyone I know, I have a phobia of needles, so how in the world am I not scared?!  To anyone freaked out about having surgery of any kind my advice is to fill up your schedule with all the fun things you love to do, or things you've always wanted to do.  

I've kept so busy, working lots, hanging out with all sorts of people, and spending time with my family.  I can honestly say even though my summer is being cut short, it;s been the best summer of my life.  I'm so ready to face my scoliosis head on.  I have the most amazing support team anyone could ask for, and surprisingly I have the strength to face major surgery: something I never in a million years thought I would have.


Thank you to everyone that has listened to my story, whether in person or from my blog, caring bridge website, via other family members, anything, and everyone!  You are all amazing and thank you for being here for me during this stressful, scary time.  I will make sure to update my blog on my day of pre-op work for all of you followers!  You can also check out my caring bridge website, which my mom will be updating when I have surgery and the week I stay in Rochester! God bless!




caringbridge.org/visit/lauradobrzynski

Only 30 More Days!

Time is flying by! I can't believe that I only have a month until surgery!! My mom was definitely right about waiting until July! Originally I wanted to have my surgery on June 30th, which would be in only 11 days! This way I have about half my summer to enjoy before I have surgery!

I am determined to have as much fun before surgery as possible! I'm hosting a jewelry party with my best friend tomorrow and going Valleyfair on Thursday! I've also been working more than I usually do. I work at a cookie shop in the mall and I want as many hours as I can get before the 19th! Especially since I don't know when I can come back! My boss has been very helpful with arranging my schedule so I can get hours an still have time to enjoy my summer while I can!

I spend as much time as I can outside (although the weather hasn't been entirely cooperative). I know I won't be able to do too much after having surgery so I am taking advantage of the time I do have! It's almost like a 'live like you're dying' thing except I'm not dying! I figure why waste time lying around now when that's all I'll be able to do a month from now?

I haven't been worrying too much about surgery. I'm saving all that stress for later! It's really a scary thing to think about, so I try not to think about it as much as possible. When the time comes I'm sure I'll be ready! Or at least I hope so!

I have more summer to enjoy so I'll update all my supporters closer to my surgery date (July 19th)!!

"You will be doing what exactly with my spine...?"

Needless to say this past week has been more full of drama than my past three years in high school!  In my last post I mentioned how all went smoothly at my doctor's appointment at Mayo Clinic in Rochester.  Unfortunately, it didn't go as well I thought it had.  My parents (mainly my father)  were very skeptical and basically scared shitless.

The main thing my surgeon discussed was the possibility of doing the surgery anterior (making the incision on the side) approach versus posterior approach (making the incision on the back).  When they do anterior scoliosis surgery, it involves breaking one to two ribs, deflating a lung, and putting in a chest tube.  With both surgeries they also put in a rod(s) and screws to hold the rod(s) in place.  Only one rod can be put in when they do anterior, whereas with posterior two rods are used.  Posterior surgery they strip the muscles off the spine, which isn't done during anterior, leaving the back muscles much weaker afterward in posterior surgeries.  My surgeon explained how not many having scoliosis surgery can have anterior approach because it requires the major curve to be primarily in the lumbar region of the spine.  That means that it isn't done very often.  My surgeon guesstimated that she does 95% posterior and only 5% anterior, which is also a very scary thought.  Just by looking at what I've said, anterior approach seems like a very drastic, and more complicated surgery than posterior.  In ways, yes, it is.  There are positives to it though.  Though she did mention that although the first week after anterior surgery is much worse than posterior, after that recovery becomes much quicker with anterior surgeries than posterior.

Although I am a candidate for anterior scoliosis surgery, whether I can actually have that approach of surgery all depends on the results of my bend tests. A bend test is when they make you bend as far to each side as possible and they take an x-ray to see how flexible your spine is.  If your spine isn't very flexible, you aren't a good candidate for anterior scoliosis surgery.  Just knowing my body, I know that my lower back isn't very flexible at all!  I've done yoga, and always realized that my lower back always felt stiff.  Even tying my shoes can be difficult at time and puts a big strain on my lower back.  As a family, we decided that posterior scoliosis surgery would be the best option for me.


The day after my appointment at Mayo, I had to work in the morning.  On the way to work my mom told me her and my dad had discussed my situation the night before and decided (without consulting me) that I would be going to see a different doctor in Iowa City.  I was crushed.  I love my doctor in Rochester and fully trust her!  Besides that, I was more than disappointed that my parents didn't include me in their discussion or decision to see another doctor.  I stayed angry and bitter for a day or two before getting a good family friend to come over and talk with my mother and I about my parent's poor handling of the situation.  


My mom admitted that she was scared and just really doesn't want to see me have such major surgery at a young age, but she came to the conclusion that this is reality and it has to be done.  My dad was the main one making the decisions and he had only met this doctor once, besides that he already pre-judged this doctor and said he didn't like her well before even meeting her.  My main concern was that, summer is the best time for me to have major surgery and they agreed on that.  That being said, next summer I am going to New Orleans and it is the summer before I head off for college.  It is my personal preference that I have surgery this summer, while I'm still home and in high school while recovering (since the recovery will last months).  Waiting for an appointment in Iowa City would take months, and I know I didn't want to put myself through the stress of waiting to be told the same news.


In the end, my parents let me make the decision whether to go see another doctor in Iowa City or have surgery in Rochester.  I chose to have surgery this summer in Rochester by my surgeon, Dr. Amy MacIntosh.  This started a whole new adventure:  calling Mayo Clinic to ask further questions before setting up my surgery date. 

This brought on new stress and anxiety that I've never experienced in my life.  I thought finals at the high school were stressful, but man were those a cakewalk compared to this!!  We would call, and Jodi (the woman who runs the orthopedic surgeon appointment phone line) would either be unavailable or the line wouldn't be open.  We waited two days by the phone for her to call back.  Literally, every time the phone would ring we would jump up and run to the phone to see if the caller ID would say 'Mayo Clinic'.  The first time she called back, we weren't home.  My mother stayed home those two days but had to leave for a short period of time to pick me up from work and drop off my brother at baseball.  By the time we got home to call back, the lines were closed leaving me in tears of frustration and my mother in utter disappointment.  

Eventually (Friday the 3rd) we got a call back from an assistant of Dr. MacIntosh's to answer our questions and we got a call back from Jodi to set up the surgery.  I wanted to have surgery in June, and the only date open was the 30th.  This date didn't work because our insurance takes at least 6 weeks to process the information and get all the codes and whatever so that it's covered to some extent.  Our family cannot afford to not have the surgery covered (it is a very expensive surgery and I will not mention the outrageous numbers, google can tell you how ridiculous it is). 

I also couldn't get a date the beginning of July because my surgeon is on vacation then.  So the soonest date we could get was the 19th of July and that is my surgery date!  Not as soon as I had hoped but better than nothing.  I can't even describe the wonderful feeling of relief now that it's scheduled and that anxiety is gone!  Now I can focus on having a kick ass summer before I have surgery!  I have to go in the day before for an MRI (to figure out if my back pain is due to something other than scoliosis, especially since scoliosis doesn't usually cause much pain and I've been dealing with a lot of that!), and to have more x-rays, meetings with the anesthesiologist, and photographs of my back, etc.  I am more than ready for this and anxious to get this ball rolling!  


Thanks to all of you who have been here for me during this especially stressful time!  I have no idea what I would have done without you!  Blessings!

Surgery As Soon as 3 Weeks! WHAAAT!?!

Today's appointment at Mayo Clinic in Rochester went very well!  They were actually ahead of schedule with both x-rays and appointment with the doctor so we were out of there before 2:20, which is when my appointment with Dr. MacIntosh was supposed to start!  

The news is, my degrees haven't changed any in the past 7 months, which is good!  But unfortunately, I will still be having surgery.  To make this clear, I will have surgery now by choice, but there are reasons why I'm going to have it now, even though it's optional.  Dr. MacIntosh told me that my curves would continue to slowly increase for the rest of my life, by approximately 1/2 a degree each year.  That means in 20 years both my thoracic curve and lumbar curve would increase greatly, making surgery necessary then.  20 years from now, yes the medical technology might be more advanced, it might also not be.  What is guaranteed is that recovery will be a hell of a lot easier now, since I am young and healthy.  Yes, if I get surgery now I might need another in the far future, but I'm much better off doing the major surgery now at 17 rather than in my 40's.  

We were going to make the appointment for surgery today, but after talking with the doctor and asking all our questions my parents and I both were a little overwhelmed with all the information so we will call on Monday or sometime next week to set up the surgery.  Unfortunately, Dr. MacIntosh only has two openings in June left.  Those would be the 16th and the 30th.  It would be my preference to have it done on the 16th but we will just have to see how everything plays out.  She said she's open almost all of July and August, I definitely want mine done in June though!

One thing I really like about Dr. MacIntosh is that if she schedules a surgery for one day, she will devote that entire day to that surgery and no other appointments, which would explain the wait for surgery and to get appointments with her!  She is truly the most amazing doctor I've ever met!  She never rushes appointments, she sits with you answering as many questions as you might have, she'll personally go get you information pamphlets, or in my case today and model of the spine with rods and screws in it, like what they use in the actual surgery!!

I'm very nervous thinking about how real all this is now!!  Surgery in three weeks isn't that long and I'm sure the time will fly!  Just standing there getting x-rays today I started shaking like a leaf and couldn't control myself.  My nerves just took over!! It makes me worry I'll be a complete mess when the actual surgery comes!  I'm ready to call Dr. MacIntosh's assistant now and set up that surgery so at least we get the date I want!  I'll just have to wait until Monday though! Keeping my fingers crossed for the 16th to still be open when we call!  Until then! Keep your fingers crossed for me!