Prayers needed (long)

Right now, every time that I sit down to write, something else comes up that makes me think that I should wait for an answer.  However, since writing helps me to think, I am better off just writing.

Last Friday we went for the requested MRI's to figure out why Emily's head has been hurting so much, for a month or two without relief.  While she seemed so prepared, once we were in the room with the machines, the tech mentioned that he would have to poke her for contrast.  This started an uncontrollable wave of crying that lasted about a half an hour.  It made him very nervous.  She finally calmed down enough to try the jaw MRI.  When the time came for the tech to try the contrast, he couldn't get a vein.  Two tries and she was so upset that he did not push.  It was draining and terrible.  In the end, he showed us clips of her brain.  I thought that was really cool & sweet of him.  He didn't have to.

We went to the hospital on Monday.  I was hoping that we would have an opportunity to really sit down with the doctor and talk for quite a while.  What I didn't count on was spring break.  While there are usually 3 doctors, two Advanced Registered Nurse Practitioners and an RN, this week there was only one doctor and her secretary.  She barely had time to breathe, though she did order a Pulminary Function Test when I mentioned that Emily was having a hard time breathing and her chest hurt. I was planning on getting a plan for exactly how long it would take to wean off of Prednisone, but instead I just got a "we are working on it".  Ok, I get that.  Things happen, we may need to increase, etc.  I may not like it, but I understand.  It's hard to push when she still hurts in so many joints.  I am not convinced that Actemra is right for her, but here is to hoping that it kicks in soon.  I was hoping that we would have MRI results, but no such luck.  She couldn't find them.  We didn't officially get PFT results either, but I did receive a comparison with last time which tells me that everything there is ok for now.  Oh, and we got a prescription for the *occasional use* of Xanax.  This way she hopefully doesn't make another tech nervous.  I didn't have nearly enough time with her, for the most part.

This time on our overnight, the pharmacist came by to go over meds; we never even saw a resident.  I actually like it better that way.  It's nice to cut out the middleman.  For the first time we got a room that was not properly cleaned, but they brought up a dinner tray- something that we usually don't see- and it was what she wanted.  Bonus!

When we got home I started preparing for the appointment with the oral surgeon.  I had debated on whether or not to cancel this, but in the end I decided to keep it because if her headaches were caused by arthritis of the TMJ joints, we would need an oral surgeon.  I had the panoramic from the dentist, the CT results that suggested the molar roots in the maxillary sinus cavity, and the paperwork.  I arranged to also pick up copies of the MRI's from Radiology Associates.  I was not prepared for the report.

They had done 2 MRI's- one of her jaw and sinuses, and one of her brain.  The one of her jaw apparently was not that fantastic.  She moved and they did not get good images.  They did not even mention the sinuses.   Of course they ask me some questions, as well as get a report from the doctor.  We checked yes to headaches, tinnitus, dizziness, feeling off-balance.  We discussed MCTD, Dermatomyositis and the intricacies of rheumatic diseases.  I mentioned that vasculitis had been thrown around here and there, but it never went further than that.  Then I get the report.

  Sometimes it is a beautiful thing to be blissfully ignorant.  I have somewhat looked up vasculitis before, but since it was never (in my eyes) an official thing, I didn't worry about it, so it struck me at the bottom there- "history stated CNS vasculitis".  Whose history?  Presumably from the doctor's since I never said that.  So, what else would I do?  I google.  And I find this:  "If a blood vessel with vasculitis is small, the vessel may break and produce tiny areas of bleeding in the body. These areas will appear as small red or purple dots on the skin. If a larger vessel is inflamed, it may swell and produce a nodule (lump or mass of tissue), which may be felt if the blood vessel is close to the skin surface."  
I had asked in the past what those red spots on her hands were, but I guess I just didn't really put two and two together.  She also pointed out on Friday that she has a "nodule".  I wasn't convinced that it was a nodule, but I guess it may be, or it may be vasculitis.  Yes, this is why the MRI was supposed to have contrast.  So, that floored me, but only later.  What really got me was the Chiari I Malformation.

I had heard of this before, so it wasn't a completely foreign term.  I had even studied it briefly at one point, just because it sounded interesting, and a Facebook friend had one.  I'm pretty sure my heart stopped when I read that, though.  My first conscious thought was "it has to be from the damn steroids!"  Apparently not. They say that it is genetic.  Hmmm.  Of course, I read.  As soon as we got into the oral surgeon's office I googled Chiari, and was stunned to find that she really does have many of the symptoms.  On my phone that was the best I could find very quickly, but she has many of those symptoms.  It even explains her chest pain.  I also read that it is usually diagnosed off of symptoms and an MRI, so my guess is that she will be diagnosed as soon as we get into a neurologist, though I want to speak to an endocrinologist to make sure that it isn't cysts affecting her growth.  (Thanks again, KM!)  In an effort to expedite things, I popped by her pediatrician's office and left a copy of that report.  I am hoping that somebody should call me back no later than Tuesday.  

And the oral surgeon didn't have the greatest news, either.  Pretty much, she does not technically have TMJ, but the muscles that support the joints are weak and sore, which is causing that pain, though it is also possible to have pain there from a Chiari I malformation.  He said that given her history, this is likely an early warning sign of TMJ arthritis.  He pointed out that her bottom jaw is not growing the way that it should; it is a little small, so when she is 16 they will likely yank a few teeth to make room for her molars and give her braces to help extend the jaw.  Hopefully by that point she will have grown, and maybe her jaw will catch up by then.  The roots are NOT in the maxillary sinuses- just close to.  However, those are only her 2nd molars, and there is no room for them.    

So, yeah, pretty much in a nutshell, Friday sucked.  The icing on the cake for me was finding out that they messed up when they did our taxes, and we are getting back $300 less than what we were told.  Yeah, and that refund check will definitely not be here by this week.  We should have had our refund by now, but this is how we roll.  

There is so much to process, and figure out.  Hopefully we can get the ball rolling this week.  If she wasn't in pain daily, not able to concentrate, than I would maybe not worry about it.  They say that most people that have a Chiari I malformation have no idea that it is there, but of course she does.   It really makes me sad that everything happens to her.  I now cling to the knowledge that she may go into remission on the MCTD front later on in adulthood.  She really needs a break.  Please pray for Emily that we get all of this taken care of without the need for surgery.  Thank you.