GOOD NEWS...and Two Down, One To Go

Yesterday was a really good day.  Everything went just swimmingly at my appointments yesterday.

Okay - almost swimmingly.  At my 1st appointment of the day with my Neuro, we had the one hiccup of the day when we discovered that the scheduling gal at his office had failed to order a scan of my neck.  Which the doctor had specifically stated.  In his written instructions in my chart.  On a separate line so it wouldn't be missed.  Nice.  Anyway, as for the tumor at the base of my spine, it hasn't grown since we last checked on it two years ago.  Good tumor!  The gal who mixed up my MRI order called me within an hour or so with a time to go in on Monday for the MRI on my neck.  In spite of the stinky-ness of having to have another scan, it'll be good to finally have it done and my Neuro is just going to call me that afternoon with the results so I don't have to go in for another appointment.

We had enough time after meeting with my Neuro to run a quick errand and then get a very yummy lunch at The Dodo.  It was so nice to have a break between appointments...especially considering that we got to go out to lunch without kids and actually enjoy the meal without interruptions.  Ahhhhh!  Oh - and I finished off my meal with a Valium in preparation for the next part of the day.

Next it was up to the university for the MRI on my brain.  I had been informed beforehand by a couple of people (at my ENT's and at the imaging place) that the MRI would be about 45 minutes long...just right to finish up and hurry up to the hospital for my hearing test and meeting with my ENT.  I finished up my paperwork and got changed right as the tech came to get me.  On the way back he informed me that I'd be done within 10-15 minutes.  What?!  Turns out that my ENT ordered a fairly basic scan without the usual 2nd part with an injection of contrast.  True to the tech's word, I was done in less than 15 minutes.  I totally could have done that fast of a scan without Valium.  What a waste of a perfectly good pill.

Up at the hospital my hearing test went well.  No change since last year - I have very good hearing in my right ear and I couldn't be more grateful.  As for my ENT, he was happy to tell us that the tumor in my brain/inner ear hasn't grown since last year.  Additionally, since it hasn't grown since I was diagnosed 4 years ago, he is now comfortable with extending my checkups to 18 months apart rather than a year.  I can certainly handle that!  This means that I won't have to have another MRI or appointment (besides the scan on Monday) until April 2013 and Fall 2013 unless I have problems.  Hurrah!

I am so grateful for how everything went yesterday.  Even though there was a mix-up with my scans and I have to go in for an MRI Monday, the doctor (and therefore we) are assuming that since my other tumors haven't grown, the one in my neck is likely to have stayed the same was well.  I'll definitely be posting the results once I have them.

Blessings from heaven...

Yearly Pins & Needles...Or Not

It's that time of year again.  Unfortunately I'm not referring to fall (one of my 2 favorite seasons), baking and soup season, nights wearing slippers and sweaters, or anything else that gives me the warm fuzzies.  It's time for my annual check-ups on my three remaining tumors (right side of brain/inner ear, neck, and back...all benign but can be do a lot of damage considering where they've taken up residence in my central nervous system).  While this has been part of normal for me for the past three years, the week or two before my MRI's and doctors appointments have always found me a nervous basket-case of a stressed out wreck running around on emotional pins and needles.  However, for whatever reason, I've been blessed this year and have felt totally normal and at east about the whole situation.  I still don't enjoy the MRI's (Valium and I are very dear chums) and I'm still a bit nervous about the results but I'm just not thinking about it much or finding it to be that big of a deal.  Thank the heavens above because this is way more preferable than my usual!

I had one MRI Tuesday morning that was about 90 minutes.  I was so relaxed that I actually fell asleep...and woke myself up with my snoring.  Awesome.  However, it ended up turning into two MRI's as I had to go back in the afternoon for a quick 30 minute re-do on a spot as the radiologist wanted clearer thins of the area.  I was a little worried at first when they called me back because the area they wanted re-scanned is close to where the pesky little tumor in my lower back is.  I asked the question flat out and the tech said that it was actually the area where my 2007 surgery was that they needed a better shot of.  So long as it doesn't mean that the tumor they removed is back, I'm totally fine with it.

Today is a bigger day than Tuesday way.  This morning I'll meet with my Neurosurgeon who handles my back and neck to see what the results of the other day's MRI's are.  A couple of hours later it's another Valium for me and an MRI of my brain (only supposed to be 45 minutes but I still need some help to relax) before a hearing test and an appointment with my ENT Neuro about the one in my brain/inner ear.  That one always scares me a little more since the hearing in my only good ear is threatened should that little bugger grow (for those of you who don't know, I'm stone deaf in the left ear with no cochlear life so no hearing aid, implant, etc. can help).  Even with that knowledge and fear in the back of my head, I'm still feeling okay about the day ahead of me.  Here's crossing my fingers, saying my prayers, and hoping with all the hope I have in me that none of my tumors has grown and that I get to go another year before checking again.

Wish me luck!  I'll post results tonight or tomorrow...

2010 Brain MRI & ENT Appointment

I had my annual MRI for the tumor in my noggin and a hearing checkup today. As I mentioned last year, I'm somewhat of a basket case for a good week or two before the big day. I worry myself sick thinking about how rotten MRI's are, the possibility of the tumor(s) having grown, my hearing having gone downhill, etc. This year wasn't much different in terms of the days following up to my appointments but thanks undoubtedly to the prayers of many dear family and friends, today went beautifully.

The waiting room was packed when I got to Imaging and Neuroscience (first time I'd seen more than just a couple of people in there) and I assumed that I'd end up waiting a while. And I did. When they did finally call me back, they gal said I could wear the wire-free sports bra I brought along and that I could leave my underwear bottoms on. Not that you want to hear about me going into an MRI with or without any unmentionables on but this was very welcome news as last year, they required that I leave both off. Another happy thing was that when I inquired as to whether or not I'd have to have wear a horribly constricting brace over my breastplate like last year (read: hardly able to breathe...forgot to mention it in last year's post), I was informed by the tech that my particular MRI scan doesn't require said brace and that whoever set me up last year shouldn't have put it on. Another sigh of relief. One final bonus to this year's MRI: my own iPod. If you read my post from 2009, you'd know about my previous music experience there. This year was much improved with me listening to songs from Glee while wiggling my toes to the beat and trying really hard not to sing along. Between my precious Valium pill, listening to my own music, and feeling calmer than ever, this was hands down my best MRI experience yet.

After getting out of my MRI late, we rushed up to the hospital (ate my brown bag lunch of a sandwich and grapes on the way) for my hearing test and to meet with my ENT. I always wonder how much I'm missing/failing on my hearing test and was happy to have the tech inform me that there had been no changes since last year. We had to wait a while to see my doctor but when we did, the visit was short and sweet with him telling me that while the MRI showed a variance of about 1mm since last year, it's well within the range of normal (measurements aren't always exact and the system isn't perfect) and he's confident that there hasn't been any growth. And this means...the tumor in my brain/inner ear and I get another year off. Come next September, I'll be a bit of a wreck for a couple of weeks before we go through all of it again. But as my mom says, if we have to have this whole process happen every year and find out that the tumor hasn't grown every year, we'll take it.

Next week I'll be seeing my Neurologist about possible problems with the tumor at the base of my spine. I've been having numbness/tingling in my right leg off and on over the past few weeks and anytime a patient has these symptoms, he wants to meet with them. I have noticed that it's less noticeable (if there at all) when I get more rest and sleep so I'm hoping and praying that nothing more than a quick appointment and discussion is needed. Crossing my fingers that we keep the current plan of an MRI of my back and neck next fall. We'll see...

MORE MRI'S, MY NEUROLOGIST, & GOOD NEWS

This past Tuesday, I had my 2nd set of yearly MRI's. I took my beloved Valium before going in and was more grateful than ever that I had done so. The MRI itself wasn't horrible but one aspect of it was. When I was all situated on the table, the tech put a kind of brace over my face and head. This is something that has happened before and wouldn't ordinarily be a big deal. But this brace had a lower bar that pressed down on my breastplate, making it hard to take in anything other than a shallow breath. Even with the Valium fully kicked in, I immediately started to panic (though I didn't let it show). I asked if there was any way that I could have my scans without it as some techs had let me go without a brace before but the answer was no. So as I was moved into the machine, I said a little prayer and tried to take nice, slow, shallow breaths. I calmed down after a couple of minutes and survived. The tech was kind enough to remove the brace when she brought me out to inject the contrast and ah, sweet relief! I took several deep breaths during those few minutes. Then back on went my head muzzle and into the machine I went again. At least that time around, I was grateful to know that the biggest chunk of time was overwith (the scans with the contrast are much shorter than the ones without).

That afternoon, Max drove me back to the hospital to pick up 2 discs of my films (one for my Neuro and one for me) and much to my surprise, the girl in Radiology also handed me copies of the Radiologists findings/letter. I just stuck the letters in my purse, saving them for my Neuro to read. RIGHT!! I couldn't control my eyes...I read the findings as soon as I realized what the papers were. The information given seemed somewhat confusing as it indicated that I don't have anything in my neck (which I do) and that I have a tumor in my back around where I had my 1st tumor removed in November 2007. I tried to figure out whether I was reading the results wrong or whether the Radiologist was wrong. When I couldn't make a final decision, and being most talented in this department, I then borrowed a bit of trouble and went over the "what if's" in my mind for the next couple of days.

On Thursday, we went and met with my super fabulous Neurologist. He seemed somewhat baffled by the Radiologist's letters as well and we spent a while reviewing this year's back and neck films as well as the ones from July of last year. Turns out that I do indeed have a teeny tiny (as in 3-4 mm) tumor at the base of my spine, right around the base of my scar from the 1st surgery - in the L1 region for those of you who know what that means. But as I said, we compared films and found that it was indeed on the films from 2007. For some reason, it didn't react to the contrast very well and was very easy to miss. However, this isn't all bad news as it hasn't grown in the 18 months between MRI's and neither has the one in my neck. And speaking of the one in my neck, the Radiologist had indeed missed it. As my Neuro put it, "He gets a gold star for catching the one in your back and gets it taken away for not seeing the larger one in your neck." But it all honesty, both of these tumors are harder to spot. They each only show up in just a couple of shots and are small enough that they don't jump out. The one in my neck wasn't seen for weeks after my initial MRI's back in 2007 and was discovered by a Radiologist on the "Tumor Board" at my Neuro's hospital. But that's all beside the point. In the end, with neither of the tumors showing any change or growth, my Neuro is confident in how things are going and he's changing my MRI frequency for my neck and back to every 2 years instead of every year.

Another thing that was good to hear at my Thursday's appointment was that my Neuro has another patient with NFII who has around 10 tiny tumors at the base of her spine (same type of tumor as mine) and in following them by MRI for about 7-8 years, none of them has ever shown any growth. Here's hoping that this is what happens for me. If I have to go through the fun experience of having an MRI (or three) every year or two for the rest of my life, each time learning that nothing has changed, I'll gladly take it.

Ramble, ramble, ramble.

In short, the actual MRI this past week may not have been a party but the results were the absolute best that they could have been. Blessings from heaven.

WORST & BEST DAY OF THE YEAR

Today was my annual worst day of the year. I had 1 of 2 yearly MRI's to check on my tumors. One of the remaining tumors is on the right side of my brain in the inner ear (which is the one that got checked today) and the other is in my neck (MRI for that one is next Tuesday). All this week, I've been a bundle of nerves. I'm a fabulous basket case and while I knew that things could turn out well, I had myself a heck of a time borrowing trouble. The tumor that remains in my head is bigger than the one they removed on the left side and so the chances of losing my hearing on the right side are much higher. Not exactly swell considering that I'm stone deaf on the left side thanks to the surgery I had to remove that one.

I spent the morning keeping myself busy doing dishes, putting away laundry, etc., then picked up the babysitter, took a nice little Valium pill (couldn't survive an MRI without one), and Max and I headed for Imaging and Neuroscience. He dropped me off and I went in to treat myself to disrobing so I could get in a luxurious and most fashionable hospital gown and pants. Then I decided to spend some quality time lying on a lovely little table. They gave me earphones, I asked for "easy listening" music, and then they slid into a tiny tube for my scan. Much to my horror, I found out too late that when someone asks for "easy listening" music, the peeps at I&N interpret that to mean "tacky and tasteless elevator tunes". However, I didn't have to listen to it too much. I was actually grateful to be deaf in the left ear for once and as for the right side, the banging, humming, and tapping of the MRI pretty much drowned the music out. Thanks to the Valium, the 45-50 minutes I was in there flew by fairly quickly. I was totally bummed to get back into my normal clothes and leave the building. Wish I could go there every day.

When I was done, Max came and picked me up and we ran a few errands in the spare time we had before my hearing test and appointment with my ENT. My hearing test went well...according to the results, I scored 3 points higher than last year. But my ENT says that this may or may not be accurate (more likely not) but I'm going to imagine that my right ear has decided to make up for my being deaf on the other side. I can pretend, right? Moving on. I was positively overjoyed, relieved, thrilled, and ready to get up and do a little dance when Dr. S informed me that my tumor has not grown over the past 12 months. I literally threw my hands up in the air in a silent "yes!". When this whole thing started a couple of years ago, my doctor had told me that considering my "youth" and physical health, my tumors would most likely continue to grow. So far, we - my tumor and I - are proving him wrong. And really, it's not me that is proving him wrong. It's a loving Heavenly Father who is allowing me to move forward another year without brain surgery. Without possible complete deafness. A year of living my everyday life as a wife, mother, sister, daughter, and friend. Another year of knowing each and every day that I've been blessed beyond measure.

So, while it was a hard day with a dreaded MRI and waiting on pins and needles for the results, today was - as the same time - the best day of the year.

GETTING THE BALL ROLLING

Tomorrow is a big day for us. Not the kind of big day that one really looks forward to. Not like a child's first trip to the zoo or the dentist, not like going on vacation, not like the first day of Kindergarten (which will be upon us shortly), and not anything like a birthday.

Tomorrow morning we're taking our kids to the children's hospital for some testing. Testing that we've been eager for and wanting to get done. But at the same time, we have been dreading and subconsciously avoiding it for months. Usually I'm the one wanting to dive in, figure things out, and more forward. But in a surprising reversal of roles, Max has been the one reminding me that we need to get the ball rolling in this case...I guess that while I most definitely want some answers so we can move forward and rise above whatever may come, the mommy in me is frightened of what that "whatever" may be.

Now on to our big day tomorrow (via a little bit of background information): A while back we noticed that Claire was walking with her right foot turned out. She still does. No big deal, right?

Well, Max has degenerative arthritis and dysplasia in his hips. Much of the medical community argues that this can't be genetic. However, Max's dad and both of his "full" siblings have at least one of these conditions and all of them have had hip replacements or hip resurfacings. His orthopaedist firmly believes that these problems are indeed genetic and so from the beginning, we've had our pediatrician check the kids' hips for any problematic signs...

When we were at the pediatrician's office for Hudson's big K checkup a couple of weeks ago, we mentioned to the doctor that we had noticed Claire's foot being turned out. He watched her walk and run around the room and saw it too...and ordered an x-ray so that it can be checked out.

TEST # 1: An x-ray on little Claire's hips to see if there are any early signs of either of the conditions that Max has (Hudson, by the way, has shown no signs or had any problems).

The x-ray alone is kind of nerve wracking. We should get a phone call from our pediatrician with the results in the next day or two. Of course we're hoping and praying for the best. But in the back of my mind, I'm thinking, "Whether or not she had what Max does, there is something off here." I try not to borrow trouble but I can't turn the thoughts off. At least we won't have to wait long to get an answer on this one.

TESTS # 2 and 3: After Claire's x-ray, we'll be taking both of the kids to the lab to have some blood drawn so that they can be tested for my condition, Neurofibromatosis Type II (aka NFII).

Hudson's recent trip to the pediatrician was an absolute disaster...it took 3 adults holding him to administer 4 shots. I can only imagine what it will be like tomorrow when he has to sit totally still. Hopefully our telling him that it'll hurt more if he moves will do the trick. And hopefully Claire will bear it well after having had her x-rays done just before.

Honestly, the actual drawing of the blood isn't what I'm worried about. It's the implications of the results of the tests (which could take several weeks to get back) that leave me feeling totally helpless. As a parent, I want nothing more than to protect my children. But I can't protect them from this: both of our kids have a 1 in 2 chance of having my condition. It's a highly penetrating condition and if they get the gene, they'll get the benign but threatening tumors in their nervous system just like me. They'll probably have to have surgeries just like me. They'll have to make heart-wrenching and sometimes scary decisions about their lives and the lives of their children just like we have. And as parents, if one or both of them has NFII, we'll have to make some hard decisions in their behalf.

I sit here and think about how blessed I was to go through the first 30 years of my life with no indication of my condition (unheard of). I had no symptoms other than some sciatic nerves in my legs that were thought to be totally normal and temporary even though they visited me off and on for about 13 years. I'm a lucky duck and I know it. But this isn't about me...it's about my children.

I'm optimistic about their lives even if they are diagnosed with NFII. I know that with good doctors and proper medical care, a person with this rotten mutant gene can have a wonderful life...I'm proof of that. But at the same time, I know what I've been through and thinking of my children having to go through it makes me sad. The tears well up and I'm positively terrified for them. The questions just keep running through my head: If one (or both) of them has it, when do we tell them? How do we tell them that they have a medical condition like this? How do we tell a child that they have or will have tumors in their nervous system? How do we decide when to attack the beast and opt for possibly life-changing surgeries? How do we do any of it?

I'm not actually asking these questions in search of answers. I know how we'll do it...one day, one step, one question, one surgery or procedure at a time. And we'll do it with the knowledge and expertise of fantastic doctors, the support and prayers of family and friends, and most importantly, with the love and guidance of our Heavenly Father. Without any of these things, I wouldn't have made it this far.

We'll make it through tomorrow, I know. And I'm grateful to have the distractions of daily life to help me get over all of the thoughts that are racing through my mind. Hudson has swimming lessons in the afternoon and I'll have my normal laundry, toys on the floor, and life to come home to. But normal can change so quickly...I guess it's just that the reality of it all and finally coming face-to-face with my fears with it is hitting me like a ton of bricks tonight.

I know I said that this is about my kids but maybe it's really about me...

COCHLEAR NERVE TEST RESULTS

I only have a second to write...it's time to Claire to go to bed and she's sleeping in the computer room so I've got to hurry.

The results were not what we were hoping for. My cochlear nerve on the left side is essentially dead so no implant for me. Bummed? Yeah. But it's just the way things are and I'm grateful to have good hearing in my right ear. Here's hoping for a better future on that side.

And by the way, the test was indeed un-awesome. I'll write more on that when I have the chance.

"FUN" IN L.A.

At the time that I have this scheduled to post (9:00 a.m. MST/8:00 a.m. PST), I am going to be going into my appointment at House Ear Institute in Los Angeles. It's a super special practice of ENT's and hearing specialists, two of whom I will be seeing. Why am I going there when I have a super-fab ENT here at home? I am stone deaf in my left ear as a result of the brain/inner ear surgery I had last March and in order to know for sure whether or not my cochlear nerve is still intact, I have to have a Promontory Stimulation Test done. Only a few places in the country even do this test...House Ear being one of them.

This is a most lovely test. They stick a needle through my ear drum and then using a special probe, they send sound directly into the promontory. If I can hear the tones, it means that my cochlear nerve is still intact. If this is the case, I can get a cochlear implant. If not, getting the implant would do nothing for me.

So, at House Ear, a hearing specialist/doctor will do the Promontory Stimulation Test prior to my seeing the ENT. I'm hoping, praying, crossing my fingers, and wishing beyond all reason that my cochlear nerve is indeed intact. It's a big deal to me. If it is, then I'll get a cochlear implant and I won't have to worry about going deaf in my right ear when I have the tumor and vestibular nerve on that side removed (50/50 chance of hearing loss with the surgery...my results obviously haven't been so awesome thus far).

You can bet I'll be posting the results as soon as I have access to the internet after the appointment...