Tuesday, February 26, 2013

Forgot to mention last time..

My last visit to see my neurosurgeon wasn't all negative with the finding of the CSF leak, we also got some good news from the MRI scans.  The reason we did surgery in the first plave was because I had a significantly large syrinx (pocket of built up spinal fluid and protein, most likely blood) in my spinal cord from the top of my neck down to about the second vertebrae in my back.  The syrinx is what was causing most of my symptoms.  It's caused my the Chiari, the piece of my brain that's taking up space outside of my skull where it shouldn't be and is therefore putting pressure on my spinal cord, creating the syrinx. Since we can't remove that piece of my brain, we had to remove a piece of my skull and most of the first vertebrae that are also taking up space in the same area. The goal is that once there are fewer things fighting for that space, the pressure is removed and the syrinx will break down into fluid will once again begin to flow like it's supposed to. 
The MRI we did last week was a brain MRI (since we were worried about the area at the base of my brain causing my recent headaches), so it didn't show as much of my neck as a cervical MRI would have, but we could see about halfway down, past C2, and it was obvious that the syrinx is smaller...this is great news!  We can't see the other end of the syrinx and it is unlikely that the whole thing shifted down as that is not typical of a syrinx, so the most likely case is that it has started breaking down, meaning that the surgery was a success.  Once Carley is here we will do a cervical MRI and possibly another thoracic to get the whole picture, but for now, we'll take the good news.
This change may also help to explain the pocket that has formed at the base of my head.  When the syrinx breaks down, that fluid once again starts flowing and taking up space around the brain, plus my body has increased blood and fluids right now because of the pregnancy, so my doctor believes even more so now that the leak is due to the pregnancy and my body trying to find somewhere to put this new fluid it hasn't had to deal with for a long time. 
This theory also goes along with my visit today.  The headaches aren't following the trend of typical CSF (cerebral-spinal fluid) headaches which also makes my doctor think that they're being caused by changes due to the pregnancy, meaning they should hopefully go away once Carley is here.  Yes, it stinks that I'll be dealing with them for a few more months, but that's better news than the possibility of an emergency surgery between now and then that would be very dangerous for our baby girl. In the meantime, we just try to manage them as best we can and continue to depend on our wonderful friends and neighbors who always find a way to be there for us when we need them...hopefully for just a few more months :)
I go back next Thursday to continue to monitor the pocket of fluid and make sure it isn't growing or hardening..

Thursday, February 21, 2013

Good news, then maybe not the best news..

Had I written an update after my last follow-up appointment and before this week, I would only have good news to share.  I had been feeling pretty well, was even cleared to start physical therapy at that last appointment on February 5th.  I didn't actually start, been pretty busy lately, but I continued to feel fairly well up until early this week.  After dinner on Monday I started to have a pretty strong headache in my forehead.  I had been battling a head cold, trying to keep it from advancing any further with the weak meds pregnant women can take, so it didn't worry me as much as it might have otherwise, but I was still surprised how strong it was to be just sinuses.  By 10pm Kevin had to help me go straight to bed, the pain was pretty intense.  I woke up the next morning feeling even worse.  Not only the headache in my forehead, but I could also feel intense sinus pressure throughout my face. I was confused as to what to do...call my neurosurgeon even though it could just be sinuses?  Call my OB about my sinuses even though my surgery could be a part of it?  I wanted to address both but wasn't able to do either in my condition that day, we considered the ER more than a few times but I didn't really want anyone but MY neurosurgeon poking around at my head! 
Wednesday I woke up feeling a little better than Tuesday but still knew something wasn't right. I called my OB's office and left a message for the nurse asking if I could take anything stronger than Sudafed for my sinuses because it wasn't making a difference at all.  I also left a message at my neuro's office letting them know that I wasn't feeling well and had a hunch that the back of my head may be part of it.  My OB office wanted to see me before writing a script and my neuro wanted an MRI and bloodwork (blood count would tell of any infection we couldn't see). 
The overwhelming problem during all of this was that Kevin was supposed to leave that day (Wednesday), and I wasn't in any condition to be a full-time Mom quite yet with the pain I was in!  Fortunately his work was very understanding and gave him an extension so we could get this taken care of (hopefully!).  I went to my OB office (didn't get to see my OB, just whoever was available), and they (supposedly) sent in a script for an antibiotic.  I say 'supposedly' because my reliable local pharmacy never received the fax until I called the OB office back first thing this morning asking why it hadn't arrived!  Sure enough it was sent right over, nice.
Once we knew Kevin would be here, we scheduled an MRI and blood work in Durham for today (Thursday).  We could have done it locally but it would have taken days for my neurosurgeon to receive the info.  If we do it in Durham, he has immediate access to all results. 
So everything was done at Durham Regional this morning without any major, even minor, delays.  You have to love an efficient experience at a hospital of that size!  We then drove the couple blocks to the neuro office for the results.  I met with Joey, the PA, and sure enough, there is a pocket of fluid that has formed to the left of the incision between my scalp and skull that is most likely applying some pressure on the area, since it isn't supposed to be there, and increasing my pain.  I have been able to feel swelling in that area other times when my pain was more than usual, or if pain meds had worn off, but didn't think much of it until I realized on Tuesday while at my worst that the pain in my forehead increased with any pressure on that swollen area.  This fluid-filled pocket may have been there for a while now, who knows, but now we do.  They could tell by the color of it on the MRI that it isn't just spinal fluid, but most likely spinal fluid and blood, or possibly just blood.  There are many possible explanations for how and why it's there, but at this point we're just going to try to manage any increased pain because any surgery that isn't 100% necessary is too much risk for Carley right now, she's been through enough! 
It could be that there is a leak at the internal incision, it could be with the increased amount of blood and fluid in my body from the pregnancy that my body had to find somewhere to put a little extra for now, or a few other possibilities, but the worst case scenario would be hydrocephalus, which is an infection.  I don't think I've had any fevers recently (temp was 99.2 when they checked it today), and my white blood count came back normal, so fortunately that is not #1 on the list, but still a distant possibility.  If I wasn't pregnant, we would consider going back in to see what the problem is and take care of it now.  Instead we will monitor the size of the pocket, if it seems to change or grow (from what we can feel on the outside) and go from there.  Hopefully most of the pain this time was from my sinuses and I don't have to deal with it again anytime soon.  I do feel quite a bit better today or I wouldn't be updating this, that's for sure! 
I go back up on Tuesday to get checked again and make sure nothing has changed, and my next OB appointment is March 6th, when I will get to do the lovely glucose test.  Please say a prayer for us that day if you remember, I didn't pass the first test with Logan and got to experience the 3-4 hour test at the hospital, which I did pass, but I really would like to pass the first one this time!
As always, I'll do my best to keep you updated, XO..