Quick overview of G's 3 month follow up with MRI from October:
Scheduling this appointment was a bit of a hassle. I was jockeyed between a few different people in the office and seemed a little disjointed. I later found out they had just hired new office staff, and miscommunication may have caused the majority of the issues. Finally, G was given an appointment and subsequent MRI almost 3 months to the day of surgery. I was very disappointed that we were not going to be able to see Dr. Mangano, but his Physician Assistant was very very good. She was able to pull up the before and after MRI scans and the difference was quite impressionable. However, even after surgery, G still has a fairly severe herniation, but her CSF flow is better. Remember, her herniation was 21mm upon diagnosis, so even with the best decompression results, it would only decrease it, not resolve it altogether. Her CSF flow is not perfect by any means, but much, much better. There is less compression of the brain stem as well, which is very good news.
All in all, the procedure worked as it should have. It have the cerebellum enough time to heal, and everything seems to look as text book as it can. We were very relieved to hear this news.
Below, you can see the before and after MRI scans. I have highlighted the area that has the most noticeable difference. It is truly amazing how much of a difference that a few millimeters will make when it comes to brain and CSF compression!
So, how is she doing? In one word... Great! Her recovery has been text book, and honestly there are now days that I forget anything even happened. And I believe she has these days too. Her incision has healed wonderfully, and her hair is a good 2-3 inches long around the site. I have to look for scar as it is almost completely obscured by the hair.
Symptom update: She has improved immensely in the last 3 months. Numbness, tingling, and weakness have continued to be resolved, and have not reappeared.Her headaches gradually have improved, and are down to 1 every 1-2 weeks. This is such an improvement I cannot begin to express how thrilled we are for this progress! The main symptoms she continues to have is the ringing in her ears. As I mentioned in previous posts, we did not expect this to resolve, but was hopeful after she woke up in ICU reporting there was no ringing. She does mention that the ringing continues to change. Currently, it is louder, and a lower buzzing that changes frequency throughout the day. At times, the "booming" still occurs, but not as often. She has lived with this type of sound all of her life, and does not seem to be bothered by it. For this, I am grateful.
Dr. Mangano has left most of her restrictions up to us. He heavily recommended no roller coasters, trampolines, or contact sports. These can cause whiplash type injuries that may trigger additional symptoms. I do have to share a quick story about this...
Well into G's first semester of school, all students who behaved in accordance of the school's behavior policy were rewarded with a surprise party one day after lunch. I had received the email alerting parents to this party, however they did not elaborate what would be included in this party. As I dropped G off at school, I told her that she will have a surprise after lunch, and to have fun. Unknown to me, a bouncy house had been rented for the party, and was the focus of the surprise. G, thinking that I knew about it, had fun bouncing around. After school, she said she couldn't believe that I was OK with her participating in the surprise bouncy house. To say the least, I was shocked to hear of it. I asked her how she felt afterward, and she mentioned that it did give her an 8 headache for about an hour afterward, but recovered with a dose of ibuprofen. So, lesson learned- Even though your 7 year old knows what he or she is supposed to do, they will do it anyway, especially when they think they have your blessing.
Let's talk restrictions for a moment. I am very glad that G is rule oriented, and that she will, more than likely, obey all restrictions placed on her. She understands the need to be restricted and the relapse of symptoms that could occur if she were not to follow them. I cannot imagine the frustration and concern parents have when they have children who are too young to understand, or those who choose not to obey them. We have chosen the non-helicopter parent mentality, but have fully educated G on the consequences of her future choices. Restrictions we have placed on her follow Dr. Mangano's suggetions. No roller coaster, or jerky rides, no rowdy or contact sports, no bouncy houses or trampolines. Thankfully, she has taken a liking to Chess Club and Theater, so she has extracurricular activities without the risk of much head trauma. Our true test will come later this year when we head to an amusement park that will tempt her. I am curious how she will handle this, but we intend to do many other activities and lower risk rides.
School has been going very well. Everyone at the school has continued to be very supportive. Up to very recently, G has been using the custom ear plugs during lunch. Now, noise is much less of a concern for her. We continue to drop her off and pick her up from school, and will more than likely continue to do so through this year. We will begin the bus routine at the start of next year. She is eager to get back on the bus, so I will probably relent in the fall. Her school nurse visits have pretty much diminished with an average of 2 or so visits per month. These visits are typically due to a headache being brought on by an external source, such as bumping heads with someone, or looking down for extended periods. She began PE in November, and she seems to be doing well. The PE instructor does a wonderful job observing the students and pulling her in a direction with less risk. I have no worries about this at all.
We return to Cincinnati in July for her 1 year appointment. I was clear that I wanted to see Dr. Mangano during this follow up, and they were happy to oblige. We can only hope and stay positive that the MRI continues to show improvement or at least static information. With her being so young, and still has a ton of growing to do, we do not know how that will affect her Chiari. Only time will tell.
I have to give another shout to all of the support our family has had in the past year. What a crazy, whirlwind year, and it was bareable due to the wonderful support from everyone. People continue to text, email and stop by and ask about G. And I am always thrilled to tell them how well she is doing.
For all the parents out there reading these posts, know that you are constantly on our family's mind. We were there, with the same deer vs headlight eyes and I only wish I had a blog similar to this to read. I wanted to hear the good, positive stories, and to follow along with a family who has gone through the journey that we were only starting. Lord only knows, you hear the scary, unfortunate stories everywhere. Do not get me wrong, they are important to tell and to hear as well. But along with everything else in the world, moderation is key. If you hang heavy on one side, it could set you up for failure no matter the outcome. Arm yourself with knowledge of the good stories as well as the bad, and you can't go wrong.
