Monday, August 28, 2017

4 years post op - neurosurgeon appointment

Alice is a little over 4 years post op. (surgery date- July 12, 2013)
Each year near her "Cranioversary'  I take photos of her, so that I can document her progress.
Here are a couple from July 2017.

Alice had a followup today with her neurosurgeon, Dr Magge. It's been almost a year since we had seen him. We were past due to see him, she should have seen him in the Spring. This was the longest we have gone without seeing him since her surgery. I was very anxious to say the least.

I know many look at her and don't know she ever had surgery or the ones that do know may think 'she had surgery, she's fixed now' The thing is, her skull isn't 'normal' like the average skull. Yes he made room for her brain to grow but he will continue to follow her into her teenage years. 
Why? He's monitoring the growth of her skull, making sure it charts within normal range and that growth doesn't slow down. If it does, then that would be a red flag. Dr Magge also wants her to continue to be monitored every year by an ophthalmologist and checked for Papilledema, which is the swelling of the optic nerve as it enters the back of the eye due to raised intracranial pressure, which would be a red flag also. This is all pretty standard for most cranio children. 

Dr Magge took several measurements today of her head. Her head on the left side is about 12mm less than the right side. But her head growth is good overall, continuing to progress on the growth curve. He did discuss how he could surgically fix the left side of her forehead, an orbital advancement, an ear to ear incision, basically a reconstruction of the front part of her skull, forehead and eye sockets BUT I just can't put her through something like that solely for a cosmetic reason, I would only agree if it was medically necessary, meaning signs of intracranial pressure.

I talked to him about how I read that when the sinuses start to form, that things will improve even more, physically. He looked at me and smiled and said " I forget I'm talking to the cranio expert" lol. No I am definitely not an expert but I am very knowledgeable on the subject since June of 2013, I have done TONS of reading. He does think things will continue to improve for many years to come, as she gets older.

Overall it was a great checkup. I will always worry about her but I feel a little sense of relief after seeing him again after so long. I am so thankful she was able to have this less invasive endoscopic surgery and that she is doing so well. She has no delays and is a very smart little girl. Her head/face is not perfectly symmetrical but who's is, cranio or no cranio.

We followup with him again in one year. 

Monday, March 20, 2017

Facts about endoscopic surgery

The one thing I have tried to do is just stick to the known facts about endoscopic surgery when trying to help others. I had to research so much to get accurate factual information (instead of opinions being thrown at me) The main reason I started this blog was to make it easier to find information about endoscopic surgery. I take this same approach on social media and on support groups. All I want to do is highlight the benefits of endoscopic surgery and make people more aware that it can be done up to six months of age. I genuinely want to help people. I have learned SO much in the past 4 years since Alice was first diagnosed and I just want to share what I know.

Dr Mark Proctor is a well known neurosurgeon in Boston. Alice was scheduled to have surgery with him initially however insurance denied it because they found a doctor closer to us that would do endoscopic surgery on her. He trained under Dr Proctor, so it was a huge blessing.
Dr Proctor did a study about the benefits of endoscopic surgery for each type of craniosynostosis. This is based on his actual experience, about actual cases. It is very informative and full of FACTS. He offers both types of surgeries. I do feel like everyone needs to see a doctor that offers both types of surgeries or get 2nd or even 3rd opinions.
Here is a link to the article...

Since my daughter had unicoronal (left coronal) I need to point out how much I agree with this study. Everything that is stated has been true for our case. Dr Proctor states one of the early benefits of endoscopic surgery for coronal babies is that the nose and mouth asymmetry starts to correct quickly after surgery. Yes! It does, that is one of the first things we noticed. It was amazing to see how things shifted so quickly after the suture was opened like it should be. Also in the before picture of Alice, her left eye socket was significantly larger than her right one. This was also corrected. The brow bone correction is slower with endoscopic surgery, but I was ok with that. Knowing that immediately after surgery, my daughter's brain had room to grow. I didn't have to wait and worry for months wondering if she had pressure and also continue to watch her facial features worsen. The flattening on her brow has continued to improve each year, just as Dr Proctor stated. You have to be patient. I understand that's hard, but it is amazing to see the changes. Endoscopic surgery is a pretty natural approach, it essentially recreates the suture so that the brain can grow without being restricted. The helmet then helps to shape the skull.

The before and after photos speak for themselves,
It is truly amazing to see how far she has come.

With that being said, when searching for a surgeon who offers endoscopic surgery please make sure they are experienced. A HUGE component in the outcome of your child's results is helmet therapy. For coronal babies it is very important that they stay in the helmet for as long as possible. Alice wore hers until she was 18 months old (1 year post op) Helmet therapy is crucial after having endoscopic surgery..

This a video I made and poem I wrote for Alice's 3 year Cranioversary (3 years post op)
It shows her progress over the years. I thought I would share again.