September is Chiari awareness month! Be aware or beware rather of this condition and it’s cohorts.
I’ll be posting Chiari facts all month long. In the short time Our family has been aware of this condition Olive has had six MRIs. Since I get physically ill around an MRI, she’s done them all by herself watching movies. Our next MRI is scheduled for December of 2020, so Olive is enjoying the break.
Olive was cleared this am via MRI. Her brain is not longer in her spinal column she has “robust” spinal fluid now going to all parts of her spine. She can swing and dance and fall like normal children can without fear of paralysis. She can laugh without losing her hands and she can hang upside down. She has made noteable gains in terms of developmental issues and no longer suffers from debilitating headaches.
Olive will need lots of play to rebuild her balance and strengthen her muscles again after more than a year of no activity.
We are so thankful for all the prayer and support and love. We are also thankful for Seattle Children’s Hospital and Dr. Ellenbogen.
Here is to hoping the gains continue and remain.
Heading back down to Seattle today to get a series of MRIs and neurological evaluations to determine if the surgery was successful or not. I’m sure hoping that it was.
We are heading back to normal and Olive got to go back to public places by going to church today. 6 weeks is on Tuesday which means that her incision shouldn’t open if she has to sneeze or gets sick. She is back to her pre-surgery normal of no recess and no gym, but she gets to go back to school a couple days this week.
Olive will be back on Tuesday and Friday. Monday, Wed and Thursday she has some all day doctors appointments. She is excited but scared and feels like everyone will be staring at her.
Happy MLK day. We are still working on Olive’s scar and keeping her neck loose so she isn’t suffering.
Her scar is now healing since her stitches were removed and we are hoping to get some silicon patches soon to fit that area to help minimize her scarring.
She’s had some painful balling and cramping of the neck muscle this week on the left side, so we are trying to keep it loose so she can move. The more she moves her neck the faster it will heal and feel better.
Our next steps, besides current monitoring and support, will be to journey back down to Seattle to meet with Dr. E. Olive will get another full spine study and a flow study MRI done.
This is done to make sure Olive has not
1. Developed a syrinx now that her CFS flow has been altered
2. Developed hydrocephalus as a result of her CSF flow being altered
3. Had overgrowth of all the bone they took out. Bone when cut can grow back unpredictably, especially in children. Since it’s so close to the brain and spine any overgrowth could be catastrophic.
4. Gone back to restricted CSF flow.
Any of these results during our next meeting in March could result in immediate more invasive surgery for her.
I personally can not wait until we get clearance that we are free to live our lives and Olive is free to go to summer camp and do things kids need to do.
Things have changed for the better post surgery but they have not been without their challenges. A week out of the surgery Olive was having difficulty remembering her multiplication facts and simple academic things that were not an issue before.
We are working with therapists and tutors to get her the help she needs to return to school and keep up.
She will undergo further testing for viseo-spatial skills, general OT skills, word processing. language processing as well as a full neuropsychological evaluation.
The road to recovery after your brain flow is altered is at least 3 months. She seems to get better everyday and this is very encouraging. Just living without the headaches seems like gift enough at this point. She had enjoyed doing well academically and we hope to restore that for her and keep building up her confidence.
The lead up to surgery led to a the discovery of a connective tissue disorder. We do not know what type she has and have had to see several geneticists about this thus far.
So far, the best guess is HEDS which stands for Hypermobile Ehlers Danlos Syndrome. This means that she is very bendy and it can cause harm to her joints and body. As well as harming joints it can come with quite a bit of pain. She is able to sublimate joints and do things that others would not be able to do without breaking their joints. We’ve know for some time that flexibility was an issue, but did not know it could get worse or that it was a condition.
Aside from the joint issues it can lead to overall nerve problems. The nerves that control the eyes and ears are the ones we focus on most due to the direct impact it has on everyday functioning and quality of life. Olive already has deafness is one ear and issues with her eye nerves, but it is stable at this time.
For more information about Ehlers Danlos see below:
As a result of these discoveries we are seeing many specialist during January to determine braces and best practices to prevent any further damage and to continue monitoring. We have new Orthotics that are coming from her physical therapist to prevent her ankle from rolling in.
Over the past year it has occurred to me that she is standing on the ball of her ankle. (Meaning it will roll until the ball is on the ground instead of the bottom of her foot.) This is dangerous and could lead to joint damage, so we are getting educated as a family on how to keep her exercised and fit considering that her needs are going to be somewhat different. This condition is somewhat rare but there are enough studies done that best practices have been established.
Olive will be four weeks post op next Tuesday. She is going remarkably well considering the surgery was shortly in the past. We are having some issues with healing. Olive did not shed her glue and did not dissolve her outside stitches appropriately. This is likely due to other genetic factors we are looking into is, specifically connective tissue disorder. Meaning she heals slower and also differently.
We had to pull most of her medical glue off which was painful and her dissolvable stitches were becoming embedded into her tissue because she wasn’t able to dissolve them on her own. Since her wound is less stable we are being very careful to prevent her from lifting or putting her head back to look up because it puts too much pressure on the wound.
The fear is that the wound will dehiscence which means to open up entirely even though it should be mostly healed. This can happen even long after the life of the stitches.
Medical description if this below.
So she is on very light duty because of this. As this is flu and illness season, she has to avoid any illness that could cause sneezing, vomiting it any other disease that could put pressure on her neck.
Although she is feeling better she needs just a bit longer before being exposed to illness and normal activities like carrying books, lifting her back pack, etc. She is very antsy to return back to school to her friends.
January 1st will be exactly 2 weeks since the surgery. Olive’s head is sore but she is still doing better than before surgery. We are excited to see how well she does when she is healed.
Since Olive got the bone decompression, I thought I’d post a photo to show the difference with a Chiari Skull.