Friday, April 18, 2008

Left Frontal Arachnoid Cyst

This thing in Emm's brain has a name. I saw the pictures on Wednesday in an exam room in Children's Hospital in The Bigger City. Behind Emm's left eye, where there should be a frontal lobe, there is a pocket of cerebral spinal fluid. The doctor explained that sometime while his brain was developing (probably while he was still a passenger in my belly) the arachnoid layer of his brain formed this pocket and it stopped his brain from developing in this spot. It is bigger than his eyeball, probably the size of a smaller apricot. To me, this is big. To the surgeon, this is average. He has seen kids with much bigger cysts live very normally.

Here is what I know so far:
  • The neurologist said the cyst is in the speech center of his brain. (or rather is there instead of a speech center) She thinks this may be contributing to his speech delay. It will give him an increased risk of having a seizure and could contribute to learning difficulties in school.
  • The neurosurgeon said that lots of kids with bigger cysts in the left frontal lobe speak just fine. The brain has an amazing capacity to re-route neural pathways and adapt. Emmett has never had this part of his brain, so it may very well not miss it much.
  • We are not going to operate at this point. Emm is not having seizures or pain so the risks of surgery outweigh any possible benefit draining may have. We will go for a follow up MRI in a year and re-assess.
  • The geneticist took blood and a family history and examined Emmett. He wants us to come back in a few months after he gets the test results back and can study the MRI films. He has a positive outlook so far.
The good news:
  • Emmett has always developed along his own, slower path. Always moving forward. He has never attained milestones to later lose them. This is important. The fact that he is slowly getting better means that we are probably not dealing with a degenerative disease. His brain is adapting.
  • Emmett now says Mom, Yes, No, I want and More. Yesterday while watching Dora the Explorer he yelled out "Map!" He can do up buttons and zippers and dress himself. He is 90% potty trained. All of this in a matter of around a month.
  • The neurologist agreed with his preschool teachers (Yay for me for tucking his report card into my purse) and will be writing us a letter to recommend Emmett has a support worker in school in the fall. She was very, very helpful and also is recommending I step up my own learning of Sign Language to teach Emmett. Since she is writing this letter this means I may not have to pay for an expensive course.
The puzzling news:
  • The neurologist was very thorough in her exam. So thorough she found something new for us to worry about. Emmett has always walked on his tiptoes. He is kind of clumsy and falls sometimes. I thought it was because of the tiptoe walking. I guess I have never really analyzed his gait (I am also not a neurologist!) She pointed out to us that he toes inward with his left foot and that foot has decreased range of motion. She asked if Emmett is right or left handed. He is very right handed. She thinks there may be some issues with co-ordination and strength on his left side. This has absolutely nothing to do with the cyst. The left side of the brain controls the right side of the body and vice versa. If his cyst was going to give him problems with co-ordination it would be on his right side.
    This means we get a new referral to physiotherapy.
All in all our trip was really good. The doctors and staff at the Children's Hospital were fantastic with him. Kind, gentle and never in a hurry. The neurosurgeon's nurse had donuts. (This is a big plus when you are four years old and scared and everything is unfamiliar except the box from Tim Horton's.) The geneticist had the dubious honour of being our last appointment of the morning. Emmett was tired and stressed out, but the doctor was so nice to him and made everything a game. Emmett co-operated admirably. We found out the song about legs from Monty Python is a great tension breaker, especially when Dad sings it quietly in his little boy's ear.

We also found out Charlotte has a superhuman ability to eat gelati.


rocyn said...

Wow. That's a lot to cover in one day. I'm glad you're getting some answers.

(And I sing that very same MP song to Lauren...)

Jenna said...

Wow. I'm glad you at last have some answers and that the brain is such a miracle. It sounds like Emmett has been learning a lot in the past month!

And good job, Charlotte! :)


Ami said...

I'm happy to hear you're finally getting answers... and ones that actually make sense. :)

You must be stressed out but feeling better at the same time.

Anonymous said...

It sounds like you got some very helpful information from the doctors, which is fantastic! And yay for nice doctors!

When I was a baby, I had epileptic seizures, and the doctors thought they would have to do brain surgery on me. My mom chose to wait and see, and my brain recovered on its own. I am (in my humble opinion) a fully function person now, and haven't had any seizures since I was a toddler - my brain rerouted itself, I guess, to fix the problem.

We have friends of the family whose youngest daughter had hydrocephaly as a baby. They had to do surgery and insert a shunt to drain the liquid from her brain, down a tube into the base of her spine. Because she was so young and would grow so much, they would have to do surgery every few years to replace the tube. The doctors told her parents to watch out for signs that it was time to replace the tube - headaches, sluggishness, etc. - and they never came. Finally, they went back to the doctor, and it turned out that her brain had completely compensated and found a new way to route the drainage, so she wouldn't need a shunt and tube anymore. She, too, is completely "normal" as an adult, and you would never guess she'd had any kind of problems with her brain.

I know that anecdotes aren't medical statistics, but I just wanted to let you know that I have personal experience with the wonderful capacity of the brain to compensate, and I have full confidence that Emmett's brain is already on its way to doing that - look at the amazing things he is already doing! :)

- hermitclare

Anonymous said...

fully functioning, darnit!

- hermitclare

Not Jenny said...

hermitclare--thanks for the kind words. It means a lot to hear from people who have lived with these sorts of problems and have turned out fine. You never hear the success stories when you do research.

April said...

I still don't quite know what to say Jen. Even sitting with you tonight, I am overwhelmed at your sense of calm in this new era of information with Emmett. I am sure it is so great to finally get some answers, but also scary as you've said. I am glad you were able to break away for a little crafting. I hope you found it energizing so that you are able to have a good week. See you tomorrow!

Jolene said...

I just popped by to check out your blog and read about your trip to the specialists. I am so glad that there are answers and that you had such a good experience at children's. DAddy singing in Emmett's ear brought tears to my eyes! Emm is a true gift and I know he will surpass all expectations! You are an amazing mama see ya on Wednesday!

Ida said...

I am a surviver of 11 brain surgeries due to my AC,Hydro and meningitis. If you ever have any questions about ACs please ask. I hope whoever you were speaking of is doing better.


jo said...

I have been recently diagnosed at 35 with a left frontal lobe cyst found in an MRI done for numbness in hands and feet and other areas. They think it has been there my whole life. Have had bipolar disorder since I was 20, not diagnosed until I was 30. Have heard other stories of manic depression and numbness being associated with these cysts. Just something to watch out for in his life. Best of luck to you.

Not Jenny said...

Ida, Jo, thanks so much for stopping by. It means a lot to hear from other people who have these cysts. I am glad to know what I need to look for in the future.

anna said...

If you ever want to talk, I have a son who is now 12 and was diagnosed with an arachnoid cyst in the area of his right temporal lobe and it came behind his right eye. He does have a cysto-ventricularperitoneal shunt and seizure disorder, but now he is doing grade level work, snow skiing, water skiing and wrestling for his middle school. Good luck with your search for answers. My email is if you need support or want to ask any questions.

Anonymous said...

This is also exactly my story with my daughter, Mary now 3 and is delayed in speech and coordination and also walks on her toes. The cyst is also in her temporal lobe and in another part. We are not alone. Except my neurologist was not as nice. Keep up your hopes.

Jennifer Whidden said...

Thank you for leaving a comment, Anonymous. I wish you and your girl the best on this journey. The biggest thing I have learned over the years is to never underestimate what our kids are capable of--and to accept any and all help that his offered.

Please contact me again if you would like to chat some more.