Sophia + Jule’s MRI Results


Yesterday morning Sophia + Jule had an appointment with the Paediatrician and the MRI results were in. I wish I got a copy of the report. I think I might ask for one today, but this is what my understanding was yesterday at the meeting.

Sophia’s scan came back as normal brain development and grey matter looked as it should for a child her age. They mentioned she had some fluid in her sinus but nothing they were too concerned about.

Jule’s scan came back as normal brain development and grey matter looked as it should. But she has an Arachnoid Cyst on the left side of her brain that measures 2x3x2 cm. It is none cancerous. It doesn’t seem to be affecting her in anyway as she has been progressing with therapy and no regressions. Jule will be referred to a Neurosurgeon at the Children’s Hospital, the wait time is unknown but her doctor told me to be prepared for quite a wait.

Pretty shocking. So many questions. It’s scary to think that a cyst that big is in her head. Her tiny little skull. How is that possible?

I’ve been doing a ton of reading online about Arachnoid Cysts. The first thing I think of when I hear that word is a spider. I thought maybe the cyst would look spider like, but from what I’ve seen it just looks round.

So what is an Arachnoid Cyst? Wikipedia says…

Arachnoid cysts are cerebrospinal fluid covered by arachnoidal cells and collagen[1] that may develop between the surface of the brain and the cranial base or on the arachnoid membrane, one of the three membranes that cover the brain and the spinal cord.[2] Arachnoid cysts are a congenital disorder,[3] and most cases begin during infancy; however, onset may be delayed until adolescence.

Arachnoid cysts can be found on the brain, or on the spine. Intracranial arachnoid cysts usually occur adjacent to the arachnoidal cistern.[4] Spinal arachnoid cysts may be extradural, intradural, or perineural and tend to present with signs and symptoms indicative of a radiculopathy.[4]

Patients with arachnoid cysts may never show symptoms, even in some cases where the cyst is large. Therefore, while the presence of symptoms may provoke further clinical investigation, symptoms independent of further data cannot—and should not—be interpreted as evidence of a cyst’s existence, size or location.

Symptoms vary by the size and location of the cyst(s), though small cysts usually have no symptoms and are discovered only incidentally.[2] On the other hand, a number of symptoms may result from large cysts:

Most arachnoid cysts are asymptomatic, and do not require treatment. Where complications are present, leaving arachnoid cysts untreated, may cause permanent severe neurological damage due to the progressive expansion of the cyst(s) or hemorrhage (bleeding).[2] However, with treatment most individuals with symptomatic arachnoid cysts do well.

A few things caught my attention while reading up on Arachnoid Cysts:

-Cysts in the left middle cranial fossa have been associated with ADHD in a study on affected children

I wonder if it’s the same for children with Autism? Although Sophia doesn’t have one and her behaviours are so similar and they are both developmentally the same for the most part. So it seems this cyst is asymptomatic?

I still have a lot of research to do yet, and by the sounds of it, I will have lots of time before we are able to speak to a neurosurgeon. Once again, left waiting , worrying, and wondering.

The good news is that the girls don’t have any brain damage, which is what I believe they were looking for with this scan to see if there were any other possible causes such as Cerebral Palsy. We are still waiting on Genetics at the Childre’s Hospital. I’ve sent off their questionnaire forms and the doctor there told me it would be up to a year wait. Hoping we can sneak into a cancellation sometime sooner.

So now I sit and wait…

6 thoughts on “Sophia + Jule’s MRI Results

  1. Hi Karlee!

    I am so happy to have found this blog.
    My son, Noah, is 2 1/2 and I am currently in the process (a lengthy one – thanks to my health insurance provider) of getting him medically diagnosed within the spectrum. I work with some former ABA techs alongside a special education school, and I am well aware of his definite diagnosis. I just got the results of his MRI today, and found that he too, has an arachnoid cyst. After doing some research, I have found that the links between Autism, Epilepsy and Arachnoid Cysts is quite shocking.. and the fact that the cysts could be drained leaves me questioning whether this could improve my son’s neurological state, or if it could help him with some areas of developmental delay..

    I am waiting back on some research from the GARD (Genetic and Rare Disease) Information Center. I was wondering if this is something you looked into as well?

    It seems like most neurologists dismiss it, but the testimonials are undeniable.

    Your family is beautiful!


    1. Hi Samantha! Sorry, I haven’t been on my blog in ages and just seeing your comment now. We just had an recent appointment with her neurosurgeon and they’ve decided to do another MRI in 6 months and see it it’s grown at all, it hasn’t since they discovered it and so seem to be sure it’s stable. I too was questioning whether or not the cyst had any connection to her Autism, but with having an identical sister who does not have an arachnoid cyst, but still has almost identical traits with her autism, I feel like it isn’t affecting her at all. If you’d like to email me feel free and we can chat more.

      – Karlee

    2. Hello there,

      You may want to know that my 7 yr old son also has an arachnoid cyst and has been diagnosed with autism, ADHD, developmental delay, strange behavior, I could go on. Although being told by the doctors the cyst’s got nothing to do with his mental problems, I tend to think differently. Especially after finding so many posts from parents of their children with the arachnoid cyst AND autism. So there,

      1. Hi Boris, I too wonder about the arachnoid cyst, but Jule’s identical twin sister, Sophia, doesn’t have the cyst and she is also Autistic and displays very similar behavior and developmental delays.

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