Bad Chiari Mommy!

I've been terrible, I know...it's been over 6 months since I've updated, but you know what that means?  That life continues to be so good!  December 21st was my 1 year Zipperversary, and besides some soreness and stiffness in my upper back, shoulders, and neck, everything is fine with Chiari and my surgery.  I wish I was able to workout and do more physically, but hopefully after I finally get some physical therapy I will be able to. 
The kids are amazing!  Carley is almost 7 months old and closing in on 20 pounds!  She's still in physical therapy (started at around 11 weeks old) for her torticollis and spinal curvature, but she is doing unbelievably well.  You'd never know from looking at her that she ever had a fairly severe tilt in her neck or that she still has a slight curve in her spine.  She will see a specialist (Pediatric Orthopedist) early this year to see what our next step needs to be.  Overall, she is the happiest, most laid back, easy going baby and we are beyond blessed to have her.  I truly feel like she has really calmed and settled me, it's just so different with her.  Logan was a good baby, we were very fortunate with him too, so I don't know if this is typical with the second child or if it's because of all that Carley and I went through together, but I'm just in a different place :)
Logan is amazing as always.  Christmas was very special for him this year.  He is finally able to understand what Christmas is and what is really going on.  We had so much fun decorating the house for Daddy, cutting out and decorating cookies, and counting down the anticipation of Christmas morning.  My parents were able to be with us for Thanksgiving and we celebrated Christmas together at that time, so he got a little early dose. We definitely wouldn't have been able to decorate the house without them and of course, Logan had the time of his life with Grandma and Grandpa. I focused a little more on gifts this year than I would have liked to, but at this age there is so much they're into!  I also felt like he really deserved the world for being such a great big brother and helper.  He really is such a sweet boy!
Right now we're in the mountains of Banner Elk, NC for a week to ring in the new year.  When discussing what we wanted to do for the holidays months ago, Kevin and I agreed that we wanted to be in our home, in front of our tree on Christmas morning, but I knew that I wanted to be away with the family for New Years.  I wanted to go somewhere a little colder, where the boys could be active outside when they want to (Kevin is taking Logan tubing for the first time as we speak), then we could all snuggle up inside the rest of the time.  So far, so good :)  The last time we were in Banner Elk we found out we were expecting Carley, so needless to say this is a pretty special place for us!  We tried to rent the same house as last time but it was already booked for this week.  We ended up finding another one and with the exception of the basement steps, it's been pretty good to us so far!
2012 and 2013 were definitely filled with crazy, unexpected surprises, and lots of medical expenses!  I think Kevin would agree that we're looking forward to a much calmer, cheaper 2014!  Happy New Year everyone, here's to health and happiness for all :)

The picture I can't believe we captured, the weekend after Thanksgiving :)

 

Exactly one year of growth!

A family of 4 :)

I apologize that it's taken me so long to update. I planned to write this within the first week home from the hospital with our new baby girl, and things haven't been too bad as far as sleep so I really have no excuse; other than I've just been spending as much time as possible snuggling with our precious little girl and my sweet boy who I missed so much when we were in the hospital! 
Life is good, that's all I can say.  As far as the birth, everything went as well as it could for Carley. She was born on Friday, May 31st at 1:23pm, weighing 8.2 lbs and 20 3/4 inches long. She is absolutely beautiful, with the same dark hair her brother had, but even more of it!  We'll see if it changes to blonde like Logan's did ;)
As far as Chiari goes, I'm doing pretty well. I can tell that my arms, shoulders, and neck are working harder and trying to adjust to consistently bearing more weight because I'm pretty sore everyday, especially at the back of my head and upper neck (surgery area).  Sometimes it comes with a headache, but not always and for the most part ibuprofen is doing the job. 
I wanted to share what happened with the anesthesiologist, starting when we first met him in the holding room.  It was obvious when he came to introduce himself that he hadn't read my chart or prepared for my procedure at all.  He assumed it was a typical c-section and approached it as such.  I was the one who had to tell him that I wasn't having a spinal and would be under general anesthesia.  He was shocked and immediately went to find my doctor.  When he returned he basically tried scaring me out of the decision, which wasn't made by me in the first place, but my neuro team in Durham and supported by my OB.  He told me I would be intubated and how that would affect me afterwards, which I was very aware of from my decompression surgery, he also kept calling my condition 'blood Chiari', what the heck is that?!  It was obvious that like so many physicians out there, he had no clue what Chiari even was. 
He was a complete jerk in the holding area and it continued in the OR.  Patients are typically put under anesthesia within the first few minutes of entering the OR, then put into place for surgery, etc. I wasn't able to be put under until my doctor was literally standing over me with scalpel in hand and ready to cut because she only had a short time to get Carley out before the anesthesia would reach her.  That alone was stressful enough, I didn't need an anesthesiologist arguing with my doctor during all of it.  He refused to even come near me from across the room until we were 100% ready.  My doctor even told him 30 seconds out and he refused, asking, "Are you 100% ready?"  She said we would be in 30 seconds and his response was, "Well then call me when that is."  If his nurse wasn't as great as she was, I may have had to ask for someone else.  He literally was awful and nearly ruined the experience altogether. 
Thank goodness for my doctor and all of the amazing nurses who made the experience what it was.  Waking up feeling everything in recovery, not being numb from the waist down, was awful, but once the pain from the incision and the double dose of Pitocin was under control, it was tolerable.  We had to wait a few hours to hold our baby girl, but she was safe and healthy and that's all that mattered.
It's hard to believe that this part of the journey has come to an end.  From my diagnosis, to the unexpected pregnancy, surgery, and delivery...wow.  In the end we have two healthy children we would do anything for, and we can't ask for anything more than that.
Thanks so much to everyone who has been there for us, come to visit, brought food and gifts for the kids, etc.; we truly have amazing friends!!  I'll update once again after my appointment with my neurosurgeon next month...XO :)

One day old :)

4 days old :)

Newborn pictures with big brother, Logan, 8 days old :)

Mastered the 'froggy' pose like a pro ;)

Yikes!

I realize it's been quite some time since I've updated, well over 2 months, but thankfully there hasn't been much to say as far as Chiari goes.  Up until a week or two ago I was starting to actually feel like I'd never had surgery. That slightly stiff feeling that felt like it would never go away was fading and all of the swelling has diminished leaving me with a weird sunken in area where my skull used to be, but it feels fine!  Over the last week or two, I think because of the advanced stages of my pregnancy, I've started to feel a little stiff again, but not painful, and not anything that's kept me from going about daily activities anymore than the pregnancy does. I can't believe it's been months since I've been to Durham for an appointment!  Last we spoke my Neuro team said the next time they'd like to see me is about 6 weeks after giving birth to see how everything is adjusting to the changes in my body yet again.
The main thing consuming us these days is the fact that in exactly one week, Kevin and I will be parents of two!  I can't believe we're having another baby, even though we've had 38 weeks (or so) to get ready!  I think we're about as ready as we can be; Logan is excited, asking everyday if his sister is ready yet :)  My Mom will be here on Thursday to stay with him while we're in the hospital, I don't know what we would do if she couldn't be here for us! 
I'll be sure to post another update as soon as I'm able once Carley is here.  As always, thanks to everyone who has thought of us and kept us in your prayers :)

:)

That :) pretty much explains it...I have been feeling pretty darn good.  I know it's only been a short time, and I am very aware that problems could come back anyday, short term or for a while, but in the meantime I am going to enjoy it.  For over a week now I have felt better than I have at any point since surgery.  I still have stiffness in my neck, it's going to be a while yet before that (hopefully) goes away, but stiffness doesn't mean pain, and no pain is good!  No headaches, the pocket of fluid is smaller and less reactive, and far fewer 'floaters' in my vision.  Part of me wonders if it's not because I'm finally back to being a full-time Mom; hands on, getting more exercise, and more active and involved. I've missed my sweet boy so much!  I don't know what it is, but it feels good and I hope it can at least continue for another month because it's a pretty busy time for us!  We have Logan's birthday, my Dad (Grandpa!) coming to stay with us for a few days over his Spring Break, Easter, and 3 year/maternity pictures!
I had another follow-up today and of course they were happy to hear this too!  A few weeks back I was 'upgraded' from 1-2 week appointments to 6 week appointments, but 2 weeks into that is when the debilitiating headache started and we found the leak.  I have since had two folllow-up appointments and am now back to a 6 weeks...fingers crossed that we get to keep this one!  After that appointment I won't need to go back until a month or two after Carley is born, to see how everything is adjusting to the changes in my body once again.
In the meantime, I passed my glucose (GD) test yesterday which was a huge relief!  I failed the first one with Logan and had to sit through the 3-4 hour hospital test and was really hoping not to have to do that again.   
Thank you so much to all of our friends who have been here for us, whether it's to watch Logan so I can go to appointments or just to care and be happy with us about our little milestones, it means so much! 

I also want to share that I am so excited to have connected with some Moms in NC who are also dealing with Chiari, either themselves or their precious children.  I am also very excited to take part in my first walk to Conquer Chiari in Raleigh this September.  Team McGurk is ready to go!  Thanks so much to our friends who are already signed up, and those who hope to be able to!  Team McGurk will be well represented in Raleigh!
I recently learned that the same number of people suffer from Chiari as Multiple Sclerosis...can you believe that?!  Had you ever heard of Chiari or had any idea what it was before I was diagnosed and started talking about it??  The reason is because MS sufferers and their loved ones are out in the world being active, talking about it, and raising money for research.  We are determined to do the same for Chiari!
If you're interested in walking, please email me at magumom@gmail.com.  If you're not local to the Raleigh area, I would be happy to get information for you on walks in your area. 
Thanks also to my Mom and Dad for spreading the word back home about a Unite at Night walk in Clyde, Ohio, and who will also be raising money for Chiari.  Your support has meant the world and we love you so much!! 

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..

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..

Late update..

I just realized that I never posted an update after my last appointment, but sadly there wasn't too much to say.  The doctors didn't seem too surprised that I was feeling the way I was, but I think they were definitely disappointed. This surgery is unlike most others in that you can't operate directly on the biggest part of the problem (the syrinx-pocket of fluid built up in the spinal cord).  All you can do is relieve the pressure on and around it and hope that it responds in a timely manner.  A typical syrinx is made up of spinal fluid, mine however is made up of spinal fluid and blood, on which there is no research, so we don't know if we can expect it to go down at the same rate as a typical syrinx.  What we do know is that any changes in the syrinx can cause big changes in how I feel, both good and bad.  Any changes in the spinal cord or flow of spinal fluid will cause changes in balance, headaches, pains, etc.  Some creating pressure, some relieving pressure.  In the meantime nerves are reconnecting, muscles are going through changes while trying to heal and get stronger.  I still have little to no feeling in a large part of the back of my head, other areas are painful at times but not others, and I still get the shooting throbbing pains into my forehead.  Sometimes they're so strong and frequent that all I can do is lay down.  They did prescribe a stronger pain pill I can take when the pain is overwhelming.  Thankfully I have only needed it a couple times.
I am doing better overall, but definitely still not where I would like to be at this point.  I can typically tell about 30 minutes after the 6 hour window that my pain meds (Tylenol and Flexeril) have worn off and it's time for more.  I can't wait for the day that I'm not dependent on it to feel somewhat normal and functional.  I have also been trying something new in the morning, which was typically my worst time since I haven't been medicating during the night.  Kevin usually wakes up earlier than Logan and I, around 6am, so I take my meds at that time since I'm awake anyway and go back to bed.  Then when I wake up with Logan, typically around 730, they are already in my system and hopefully relieving the worst of the pain.  My next neuro appt is Feb 5th so we'll see what's next at that time.
In the meantime we have settled on a name for our very active little girl.  Miss Carley Frances has been keeping us entertained with her in-utero gymnastics, and I've been having far too much fun acquiring her future wardrobe.  It's definitely been a good distraction!  Her big brother has surprisingly been very involved and excited.  Logan loves to talk about his baby sister (Car-wee :), kiss my belly, organize and sort her clothes with me, and show them to Daddy.  I can only hope he doesn't lose this excitement, ever!  Right now we are busy refinishing furniture for his toddler room which he is also very excited about!  My next OB appt is on the 6th.
Once again, we can't thank everyone enough for the month of food we received from our amazing friends.  Some dishes were so big that we still have portions in the freezer!  I am happy to be back to cooking, with Kevin's help at times (I still can't lift much), and also happy to have an appetite again!
Looking forward to some good news and progress in the coming weeks, all positive thoughts and prayers are very much welcomed and appreciated!

Frustrated..

I haven't updated in a while because there hasn't been much to say, not a whole lot has changed, besides finding out that we're expecting a baby girl!
Otherwise, everything is about the same.  I'm in a pretty good bit of pain still, in some ways worse than I was right after surgery.  I still can't feel parts of my skull and have a great deal of pain in my neck and back of my head.  For the last week or so I have also been having many of the throbbing Chiari headaches, lately about 20-30 a day, in addition to regular headaches.  Everytime I turn my head, look down, get up, sit down, roll over in bed, etc., I feel that throbbing pain come from the back of my head to my forehead and throb for a good 5-10 seconds.  Sometimes they come one after another and feel like it's never going to end. They are as strong and sometimes stronger than before, and definitely more frequent.  I sit here right now watching Kevin vacuum and I can't imagine being able to do that right now.  The pain would be unbearable.
I have another follow-up appointment at my neurosurgeon's office tomorrow so I'm definitely anxious to see what they have to say.  I have one month before I have to be back on full-time Mommy duty and we're definitely worried about whether or not I'm going to be ready. 
In the meantime, we cannot thank everyone enough for all of the amazing food we've been eating for the past few weeks.  We have truly been so spoiled, it's blown us away and we couldn't do this without you. 
I'll try to post another update soon after my appointment, in hopes that there's something positive to share!