Update

Well, it is official.  I had the surgery and I am feeling so much better that I can't believe it has barely been a week.  I'm thinking I will get down to the studio tomorrow to start back to sewing.

I am now wishing I hadn't postponed the IEP meeting for Mr D.  Of course, the school did not have my copies of his records until this morning, so I wouldn't have had any time to work on this.  And while I am on the subject of Mr D's permanent records... it came to 232 pages.  Over 90% of that was copies of things I had given them...so why did they charge me $58.00 to make the copies!!!!

So, now I'm back into full force working on getting his IEP stuff ready.  Our meeting is in October (I believe it is the 26...)

Now...to work on ways to tackle this boredom thing!

Nini

Fall? Fall? Not yet!

Wednesday is the first day of fall.  We are expecting temps in the 90's.

Now, I for one have to say I don't mind one little bit!  I have an air conditioner that works fine, have one in my car too, and....I have a pool.  I was really afraid we weren't going to get a lot of use out of it since it was put up so late.  But, since school has started, we have managed to get one or two days a week in it.  We could have gotten more, but Mom is having a few issues that make planning a little difficult (!)  even though I know that the only time I don't hurt is when I am in the pool.

However, after Monday I really won't care!  Well, maybe I will.  As soon as the cooler weather comes, I'll be able to wear my beautiful collar without much discomfort.....

So, Summer, I will give you one more week.  Then it is time to take your toys and go home.  We really enjoyed your visit, but it is time to go.  I look forward to your (early) visit next year.

Nini

So, since I said I wasn't going to talk about the surgery on here...I'm trying to think of what I CAN talk about!


OK...I have almost all of my t shirts finished for Disney!  At least of the shirts that I have already bought.  I managed to get 3 more finished up today.  So it looks like I will get at least one of my goals done before I take a trip to the expensive "hotel" on Monday!  (see, I didn't mention that "S" word!)

Although, it seems that every time I talk about having to stay at least one night there...I keep calling it a hotel!  Maybe sub consciously I am thinking this is going to be easy.Or maybe I am telling myself I need a vacation.  Not really sure, but I do find it both eerie and funny!

Today, Mr D played with his football before catching the school bus.  It was really finny.  He is doing much better on throwing than I thought he would.  Of course, he thought the way the game works is he throws the ball and Cissy goes to get it! She wasn't too happy with that game after a few minutes...so he declared that he won, because she quit!


Nini

I have a new blog!

Since I know most of you don't want to have the details of my surgery, I will now be using my new blog to document all the craziness that we go through for the neck fusion.  It is called...ACDF along with Nini.  I know, not a very catchy title, but I figured it said what it needed to!

See, when I was doing my own research I could only find negative stuff about the surgery and recovery time.  But, the statistics show that it is successful in over 97% of the time.  Evidently it is true...you only let people know if you get bad customer service and not good!

So...if you want to follow along with my wonderful and amazing journey into neck surgery...follow http://acdfalongwithnini.blogspot.com/   If not...stay here and I will promise to leave out any major details of the surgery and recovery.

Of course, I may not be updating this one as frequently as I had been previously....so you all get a rest!

Nini

More research...

So, I have a time for the surgery next week.  Eleven am!  Seriously?  Seriously!  Um, do they realize I can't have coffee that morning? Um, will someone please be on the lookout for my husband?  I'm pretty sure he is going to find a way to disappear for a while...and will come back with coffee breath!!!

Yeah, I know.  It is the only time he ever cheats on me... Every time I have surgery or something that means I can't have anything to eat or drink in the am, he picks that morning to be super hungry!  He usually waits until I go in before he goes to get a BIG breakfast and several cups of coffee...but with it not being until 11:00, he may just disappear for a while!

I have actually been feeling pretty good these past couple of days.  I managed to get 2 more t shirts finished yesterday.  Still have a gazillion more to go, but I think I have it figured out how to get them all finished before it is time to go.  If I can average one a day, I will have plenty of time!  So, I just need to double up on a couple of days (like 14 or so) and I should be able to make up for the 2 weeks I won't be able to get anything done.

Yes, I said 2 weeks.  I think I should be able to get back to sewing after a couple of weeks.  Not for long periods of time, but at least long enough to get a shirt done a day.  I know it will help me stay sane (ish). The only concern I have is the stairs.  Once I master that, there will be no stopping me.

Ok, now to the title of my post.  Research.  I have done so much research on the upcoming surgery my head is spinning.  I found a website that lets you post your thoughts, concerns, questions, etc about your experience with this type of surgery.  It was very SCARY!!!!  If it could go wrong, these people have had it happen to them.  They are very bitter.  Very Bittier!  They cannot imagine anyone coming out of the surgery fine. So much so, that when someone posts about a successful surgery, some accuse them of lieing!

Now, I know that the odds are that this type of surgery is 97% effective on my type of problem.  I know that there is a chance that all the problems (pain and numbness) may not go away because the current nerve damage may be too bad and permanent.  I know that this surgery is designed to prevent future damage and problems, and that it could actually make the problems worse.  (of course that is a very very small chance.) I'm not going in expecting a miracle, but I am hoping for the best possible outcome.

I personally think 97% is pretty good odds.  There are millions of these types of surgeries done all the time.  My surgeon has done hundreds of thousands over the years.  But if you go by the percentage of people that actually post, it is more like a success rate of less than one percent!  I realize that when people have a good outcome they are less than likely to go to a site to post that.  Most people use this type of site as a place to ask questions, and to complain (look for sympathy) when things go wrong.  However, before this site became THAT type of place, it was full of useful information.

So, I am thinking of posting my daily thoughts after the surgery here.  I would love to be able to come back later and see what type of feeling I was having then...and to see what my perception of recovery was at the time it was happening.  So, for those who are not interested in that information, sorry.  I might decide to put all these posts in a different blog.  Guess I'll have to wait and see how I feel about things next week!

I have my pre-op hospital info round to go today.  Last time I had one of these, it lasted about 30 minutes...they are telling me to expect a minimum of THREE hours for this one.should be interesting!



Nini

This time next week...

...I will be freaking out!

There, I admitted it!  I will be freaking out this time next week.  Probably not for the reasons most people freak out before surgery though.  I will have to admit that not everything I want to get done will be done, and that no matter how hard I try to 'will' it to be the way I want...it is not gonna happen!

So, I guess I also have to admit I am somewhat of a control freak.  I will be giving complete control to someone I have only met once (even though he is highly qualified and came highly recommended.)  I have to promise to do what he says...even though it is very contrary to what I want to have happen.

I guess I will just have to keep telling myself that it is all for a good reason...being pain free at DISNEY!

Nini

Day Two of Flare Up

Wonderful Start to the day!

Miss B had her Student of the Month award ceremony.  She seemed completely bored with the whole situation...but then again that is the way she is.

I managed to have a nice conversation with Mr D's teacher, she let me know that they will be using the HWT method soon for his full time writing instruction.  She will not be able to reschedule the IEP meeting with so little warning, so we will do an amendment for 30 days and then have another meeting.  Not the best solution, but it is really the best we can do at this late date.

My arthritis is really flaring up today.  I usually just double up on a couple of the meds to get through the day when it is bad, but since I am supposed to be avoiding all before the surgery...I am trying oh so hard to be a good girl!

Since the flare is primarily in my hip and lower back, I cannot seem to get comfortable anywhere I sit.  Standing is out, laying down isn't much better.  I think the Princess and I will just chill out and watch Disney Channel today.  She won't mind me getting up and moving every few minutes.

I've heard that this is a problem I will be experiencing for a few days after surgery.  Except it will be my neck bothering me and not my back.  So I guess I am just getting a jump on the fun!

I guess I just need to conserve my spoons a bit today.



Nini

Good news/Bad News

Good News...My surgery is tentatively scheduled for Sept 20.  Disney is still on, although I may not be able to ride all the rides I want to, I still plan on having a ton of fun!

Bad News...I can't take most of my arthritis medicine between now and the surgery date...and for 3 months AFTER!

I am already feeling the no meds part, after only one day.  Of course, I also discovered that most of what I won't be able to do for a while after surgery...I can't really do now!

Sweeping is out.  Moving furniture is out. Reaching over my head is out.  Bending is out. Sitting for very long is out. Getting comfortable in any position is out.

Of course there will be a few more things I can add to that list after surgery, but I think I am getting an early dose of what to expect...LOL!

Seriously, my type of arthritis has good days, bad days and some great days thrown into the mix.  I think it is a coincidence that I am having a bad day the first day after stopping some of the meds. I have gone a few days without meds before with no real adverse effects (like when I can't seem to remember to pick up my meds at the pharmacy!)

I guess I don't really need to get all the stuff on my list done today...right?


Nini

Is summer really almost over?

Today, the kids and I played in the pool for several hours.  Yes, I am sunburned, but I still had a blast!  By next year we should have a deck around it and some landscaping done.  I know I will be happy to have a great view OF the pool and not only FROM the pool!

It was really cute watching the kids learn to hold their breath under water...without drinking all the pool each time!  I think if the pool had been up longer this summer they would have both learned to swim.

I did manage to take advantage of the great end of summer sales and get the kids a few pool toys.  I already have a list of requests for next year.

I'm guessing we will still be able to use the pool for a few more weeks.  The water has cooled down quite a bit and feels downright icy when you first get in, but the air temperature is still in the upper 80's, so as long as the night time stays above 60 we should be able to get in it.

Of course, we are only 12 weeks away from Disney.  Only about 7 weeks before Halloween.  It is always freezing for Halloween, but generally warms back up for Thanksgiving.

I am really looking forward to the cooler weather, if only because it means Disney is getting closer.  But, also, the thought of wearing a neck brace in the sweltering summer heat is not something I want to entertain!


Nini

I have the sweetest husband in the world!

That's right....the sweetest husband in the world!

He knows how important making all the outfits is for me on this Disney trip.  He went with me today to buy some more T shirts, and after getting back, had the kids play outside while I got some sewing time in.

Now, don't you agree...isn't he the sweetest!


Nini

OK...I admit I am weired!  When something is wrong with me I do a ton...I mean a TON of research...and usually it makes me feel better.  The fear of the unknown is so much worse that knowing what is actually wrong.

Let's take my migraines for instance.  They scared the bejeebers out of me.  During my 2nd pregnancy they were so bad I would have TIAs.  Basically mini strokes.  The right side of my body would go completely numb...and I could no longer feel the baby move.  Very scary stuff.  Once it was explained exactly what was going on, I knew everything was ok, and it stopped bothering me so badly.

Now, they barely even stop me.  The pain isn't any less, I just know that it will pass soon and try by best to pretend nothing is wrong. Rarely do I have to stop what I am doing when a migraine strikes, even though I still have them almost daily.(except for reading...I still can't 'will' myself to be able to read when I can't really see...LOL)

When the doctors say surgery, I do as much research as I possibly can.  I go into the first meeting with the surgeon being able to almost know everything they are going to say.  I know the terminology, I am prepared.

For example, my rotator cuff surgery.  I did so much research that I even knew the percentage of women my age having the surgery and their expected outcomes.  I knew how much pain to expect and how long of a recovery time I would experience.  Knowing this made the recovery time less painful than I believe it would have been and much shorter.  I was able to stop pain meds after the first week.  Doc had wanted me to stay on them for at least a month.  The only real problems I experienced was the physical torture...sorry I mean physical therapy that I had to go through for 8 weeks!

Same for my wrist and lumpectomy.  Being prepared makes it less scary.

So, how come this neck surgery thing is scaring me more than reassuring me?  I have a copy of both MRIs (lumbar - which we are doing nothing about; and cervical).  I have the report from both.  I have researched each and every term that is used in the report and know pretty much what it is saying.  I can look at the scans and see 90% of what the report is saying.  ( it is funny, knowing what you are SUPPOSED to be seeing makes it oh so easy to actually see it!)

I guess my problem is that there is no 'title' to what is wrong, making it harder to know what they will be doing to fix it.  The report actually gives 4 different names to what my current condition is.  Although they are similar, and are treated in a similar fashion, there is enough of a difference to make a large cone of uncertainty.

The surgery can range from minimally invasive, removing the offending bone spurs; to removing the actual vertebrae and replacing with bone grafts and metal plates.  Hospital stays range from out patient to a hospital stay of 48 hours ...or more.  Recovery time is from 2 weeks to 6 months!

Now, how am I supposed to prepare for that much of a difference??!!

I don't like surprises.  I want to know going in if I should be fearful or relaxed.

Then, there is the stuff that the first doctor DIDN'T tell me about.  Like the evidence of "an arachnoid cyst in the supracerebellar cistern"..trust me, you don't want to know what this is!  LOL

So, on Tuesday, I will either be comfortably prepared or horrendously scared.


Nini

Note from Mr D's teacher today:


"He worked hard when he arrived.  I'm really concerned with his grade level performance and him needing to rest frequently.  I'm sending a packet for tomorrow.  Just send back when completed."


Now, in order for you to understand my complete and utter 'displeasure' with the above statement, you have to know that I spent 3 hours before I registered him and 4 hours in an IEP meeting discussing 3 points.  One - that he is NOT on a 2nd or 3rd grade level in his work, but is on a K or 1st grade level on reading!  They insisted in placing him in a 3rd grade level special ed class! Two - that the meds he is on make him sleepy and he frequently needs to rest or take a nap.  We even discussed the possibility of me sending in a favorite blankie because he is a blankie baby and likes to have his head covered when resting.

The other point was his frequent doctor and therapy appointments and his need to miss a lot of school due to this!

I have to say that I am positive that no one listened to anything I had to say!  Sheeeesh!


Nini

A New Month!!!

September

What will it bring?

New problems, or new solutions masquerading as problems.?

The results of my MRI are in.  At first I was really, really freaked out about them.  I mean, I had been researching the worst outcome so I could be prepared for the worst and hope for the best. I had even put the words..."having surgery" into actual speaking...just to see how they sounded out loud.

I even joked that it would have to wait until after the first of the year...couldn't let it mess with Disney!

But when the doctor called...I was not prepared for what he would say.  He really didn't give me an option.  He said surgery.

I knew I had two ruptured disks in my lumbar (lower back) spine, and bone spurs growing on three disks.  I knew they suspected the same results in my neck.  I was hoping for shots directly in the disks to relieve the pain.  The doctor was confident that would be all that was needed.  He wanted an MRI to rule out other problems and to accurately pinpoint the area that would work best for the injections.

Basically, what they found was a lot worse than what was expected.  The arthritis in my neck had attacked the bone so badly that it had moved my disk to a point where it is cutting into my spinal cord.  He said there was evidence of nerve damage...but the thing that got me was his statement, that some of the doctors that saw my scans could not believe that I was able to walk.  He said the neck is so unstable, that it could cut the cord completely with just a little movement...like a fall...  Very Scary!

So, he gave me three doctors...I researched and liked his first suggestion.  I'm waiting to hear from his office.  Since there are a variety of different surgeries that can 'fix' what ails me...I'm not 100% sure which one they will do.  They are all pretty much the same surgery, just different methods of removing the offending portion.  I may or may not require a bone graft...the good news is, I should have only a minimal recovery time (2 to 3 weeks) and be able to still go to Disney...just have to be a bit careful as to what rides I go on, since if there is a bone graft it takes about 6 months to fully graft....

So, if the doctor that ordered the MRI has his way about it, I should have my surgery before the end of this month and be on my way to recovery...and Disney!




Nini