Monday, November 30, 2009


Email from Dr. M, the Chief of Pediatric Neurology, received today:

Thank you --

I have had Joey's MRI from November 2006 read here. The cyst is not seen.

I have asked Dr. T
(the neurosurgeon) to review the MRIs --he feels that the cyst seen in the October 2009 scan is benign and there is no need for concern, however he will attempt to arrange an earlier appointment so you can discuss the cyst directly with him.

I had left a telephone message for you --but you do not need to return my call unless you have other concerns. I will ask our booking office to provide an appointment for Joey with Dr. B
(the neuro that we had asked to be switched to after our first experience with Dr. L, but she is on sabbatical until July 2010) as soon as she returns.

- Dr. M.

Good enough for me....for now. Of course I still have questions:

WHY it is considered benign? How can something be so big and push on the brain so much and not be a problem?
How can they be sure it is not causing pressure and/or headaches?
How do they know it is not responsible for some of Joey's unusual and unexplained emotional outbursts?
How big will they allow it to get before doing something about it?
How often will it be monitored by MRI?
Can those MRIs be done at our local hospital?

At the very latest we should see Dr. T January 8th as originally scheduled, but it sounds like it could be sooner. I feel a bit better about the whole thing now that 2 other people have reviewed Joey's case, so now I will be a good girl and wait patiently for my turn to see the fancy doctor :)

- P, J, J & B

Wednesday, November 25, 2009

Approximately 45 minutes after sending my email yesterday I received a response from Dr. M:

Thank you for your e-mail.

I'm sorry that you had a difficult experience in our clinic. Would you please courier the CDs of Joey's MRI to me. I will arrange to have the MRI from 2003 loaded onto our system here and then reviewed by neuroradiologists.

We can then discuss the results with Dr. T.

Due to her prompt response time and willingness to deal with this situation I will forgive her error...the first MRI was in 2006, Joey didn't exist in 2003 :)

I sent the CD and reports by Purolator today, guaranteed to be there by 10:30am tomorrow. I'm hopeful she will get back to me by Friday evening.

- P, J, J & B

Tuesday, November 24, 2009

More Unanswered Questions

Rather than re-hashing what happened at our appointment yesterday, which will only make me more angry, I will simply cut and paste the letter I sent to the Associate Pediatrican-in-Chief, Neurology. She is the doctor that called me last week.

Dear Dr. M,

I would like to thank you for taking the time out of what I am sure is a very busy schedule to call me personally regarding Joey's MRI results last week. I appreciate the quick action you took in arranging an appointment for us to meet with Dr. L, and I also appreciate being called again when a cancellation arose for yesterday, allowing us to be seen a week earlier.

However, upon meeting with Dr. L yesterday I was immediately reminded why I had requested for Joey to be transferred to another neurologist. Either Dr. L is constantly plagued with "computer problems" or it has been an unlucky coincidence that each of the three times we've met with him he has been unable to access the files he needed. He began our appointment by apologizing that we waited so long but he had to try 3 different computers to view the CD that contained the images from Joey's first MRI in 2006, though he did give the impression that he was able to view them. He quickly explained what was found and then told us that he is "assuming" what Joey has is an arachnoid cyst but he wasn't sure. I then told him that the MRI report said that Joey does in fact have an arachnoid cyst so I was confused as to why he wasn't sure that was what Joey has, he then concurred and said that yes, Joey has an arachnoid cyst. He told us that is unlikely that surgical intervention was necessary, given that there was no indication the cyst was causing pressure to the brain and given that Joey was not exhibiting any symptoms. When I explained a few things that I suspected could be attributed to this cyst, such as his poor appetite and frequent emotional outbursts that had no rhyme or reason to them, he told us that the cyst could not be causing these symptoms. I felt that perhaps the emotional outbursts were an indication that Joey was suffering from a headaches and Dr. L said he "doubted that very much", despite the fact the Joey is completely non-verbal and intellectually he functions at approximately the level of a nine-month-old. I asked what we should be looking for, he advised us that "waking in the middle of the night screaming in pain and vomiting" was a good indicator of a headache, and also explained what seizures can look like. It was apparent that these were the only two symptoms that Dr. L would accept as being a result of the cyst.

I came prepared with a list of questions, but each time I attempted to ask one I was cut off. At one point I asked what the part of the brain where Joey's cyst is located is responsible for, and he said it really only dealt with emotions. When I asked why it would then not be reasonable to suggest that it could be related to Joey's emotional outbursts he was unable to answer me.

After several attempts Dr. L was able to pull up an image of Joey's most recent MRI to show me the cyst. To me, it appeared to be occupying quite a large space in the brain so I asked how it was that he could be sure that it was not causing pressure, again, he was unable to answer this question for me but rather suggested an eye exam would be useful to make sure there was no pressure on the brain. I asked if it was possible for this cyst to rupture, Dr. L said it was not. When I said that I had done some reading that said it was possible for an arachnoid cyst to rupture causing further problems like hemorrhage, he changed his answer to say it was possible but that he had never once seen it happen. His attitude towards the fact that I had done some reading, such as him asking me to cite my sources, suggests to me that he does not appreciate people trying to educate themselves before meeting with him.

I asked if this cyst would be considered as growing rapidly or slowly, Dr. L replied that getting to this size over 3 years would be considered slow growth. When I asked how he could be sure it had taken 3 years to grow and not 3 months, since he had already told us it wasn't evident on the first MRI, Dr. L replied that he "may have seen a sliver of it" on the first MRI. At this time I became frustrated with the contradiction in his information and asked him "was it there 3 years ago or wasn't it?" since he had told us not 10 minutes beforehand that it was not on the first MRI. At that point his answer indicated that he had NOT EVEN VIEWED the first MRI images, as he answered me by saying he "could not recall". I still am not clear whether the cyst was there 3 years ago or not, therefore the question of whether this cyst s growing rapidly or slowly is also unanswered.

After a brief physical exam Dr. L told us he would refer us to a neurosurgeon, however I advised him that we already had an appointment booked with Dr. T in January. He then suggested we look into MEDEK therapy with Esther Fink, something he suggested to me over 2 years ago, but doesn't seem to know that Ms. Fink is not even accredited by the doctor who developed the therapy! He also recommended horseback therapy...I am sure he was trying to be helpful but after a frustrating 20 minutes of unanswered questions it was like a slap in the face to be told that "the hypotonic kids" seem to respond to animals. I may not be a neurologist but I am an educated person, and I didn't travel all the way to a world-class hospital to be told by a specialist to get my son involved with horses.

At this point I was so upset that I decided not to ask any further questions and to simply wait until our neurosurgery appointment with Dr. T in January. However since leaving there yesterday I became increasingly upset by our experience yesterday, prompting me to write to you today.

I am sure Dr.L is a skilled and knowledgeable neurologist, but unfortunately his ability to impart that knowledge to the parents of his patients seems greatly impaired. We left our appointment with him extremely frustrated and did not feel that our questions were answered adequately. I don't feel my expectations going into this appointment were unreasonable; I did not expect Dr.L to provide definitive explanations for my son's disabilities, but I did expect a yes or no answer to the question of whether the cyst was there 3 years ago or not an whether this growth would be considered rapid or slow and what the difference would be in regards to how the cyst was treated. Our pediatrician sent this referral marked "urgent" yet Dr. L did not feel there was anything urgent about this, but didn't explain why. I also expected Dr. L to be prepared to meet with us, and I don't feel that he was. We did a lot of preparation in advance to ensure we utilized his time wisely and I don't feel the same consideration has been paid to us. His disorganization and contradictory statements does not inspire the greatest of confidence.

I am not sure how realistic it is to request to be seen by another neurologist at this point. I am hopeful that you may be able to review the images from both of Joey's MRIs and if you are able to agree with Dr. L that there is absolutely nothing urgent about Joey's cyst, that it is growing slowly, is not causing pressure to his brain and is not a factor in Joey's symptoms then I will gladly wait until January to meet with Dr. T.

Pamela L

Friday, November 20, 2009

Off to See the Neuro Tomorrow

Quick update - there was a cancellation at Sick Kids for tomorrow and they called to offer us the appointment, which of course we accepted. Luckily I told our local hospital that I needed the CD with Joey's previous MRI and brain ultrasound images urgently and it was ready and picked up by Jason on Friday, so we are prepared. I'm just putting together my list of questions now so we use our time wisely when meeting with the neurologist.

Here are some random pictures of the kids:

Jason and Ben when we were in Niagara Falls...don't the look alike?

Ben posing by the window in our Niagara hotel room

I absolutely LOVE this picture. That's totally his Daddy's expression.

Whoops! I took apart this gate to wash it and didn't put it together properly. Joey quickly realized my mistake and let the cats through before attempting to escape himself!

Ben at 2 months, getting bigger by the day!

A ridiculously huge grin!

- P, J, J & B

Wednesday, November 18, 2009

Mission Accomplished

Joey has an appointment with a neurologist on Monday November 30, how's that for action?!

It's with the very first neuro we saw when Joey was a baby and it will be at Sick Kids Hospital. We are to bring all of his images with us on a CD...his first MRI, EEG and head ultrasound...for comparison purposes.

We still have the appointment with the neurosurgeon on January 8th, but depending on the results of the appointment on the 30th that may get bumped up.

Now, to get the images on CD in time for the appointment, that's my next mission!

- P, J, J & B

Tuesday, November 17, 2009

Neurosurgeon Appointment is Booked

As I was told to do last week, I called the neurology department on Monday to find out when an appointment was booked for Joey. A very kind lady looked him up on the computer and told me that the neurologist attempted to triage his referral on Friday but was missing some information, which was received later in the day from the pediatrician but now it has to be re-triaged and this wouldn't be done until Friday of this week. I asked what information was missing and she told me it was the MRI results. Ummmmmm, you mean the MRI that was conducted AT Sick Kids?!?! I was in disbelief, this was turning into another comedy of errors.

I immediately called the "Patient Representative" department of the hospital. Let me just say this...if you are ever dissatisfied with anything that happens in a hospital the first thing to do is contact the hospital ombudsman, or patient advocate/representative department. The very kind lady who took my call got things done, and quickly. She managed to find out that we had been booked to see a neurosurgeon on January 8th, and told me that I would be receiving a call tomorrow morning from the neurosurgery/neurology clinic supervisor to discuss what was happening with a referral to a neurologist. We still need to see/talk to a neurologist prior to January 8th as we have a million questions about the MRI findings and no one to explain it to us.

I was satisfied with all of this for now, and then to my surprise I received a call on my cell phone at 5:30pm from the Chief of Pediatric Neurology. After just having read her biography and list of awards and achievements on the Sick Kids website I felt honoured that she actually took the time to call me herself, almost like I was getting a call from the Queen or something! She spent a good 20 minutes on the phone with me...her initial assessment based only on the MRI report in front of her and nothing else was that an arachnoid cyst like Joey's are somewhat common, they are very conservative about treatment and likely would just watch it closely for growth or change with the support of a neurosurgeon. She also said the changes to his white matter were very non-specific. I asked her if it would make a difference if there was no evidence of this cyst or white matter changes on his MRI at 7 months of age and she was confused, since this report specifically says there is no past MRI for comparison. I advised her that there was, in fact, another MRI done at RVH in Barrie and that the report from that MRI was completely normal. Add this to the comedy of errors! She did say that changes things quite a bit, that it would indicate obvious growth over the past 3 years and that is when they consider surgery. She said that while it is routine to the neurosurgeon (burr a small hole in the skull, drain, close) it is major surgery for a child.

The bottom line is that she was unaware we didn't have a neurologist and agreed that we needed to meet with someone ASAP. She said she was going to leave a message for her assistant to deal with this first thing in the morning and get us an appointment with the very first neuro we met with when Joey was 6 weeks old, since that would be a "follow up" appointment rather than a "new patient consult", the latter taking much longer to schedule. She assured us it would be a matter of days or weeks before we could see him, not months, and certainly before the neurosurgeon consult in January. She is going to ask that a copy of the MRI from 3 years ago be sent to this neuro's attention so that he can compare the images from both to get an accurate picture of what is going on.

So now it's time to compile my list of questions to ask the neurologist, and I do have many! I hope he books off a substantial amount of time for our appointment :)

- P, J, J & B

Wednesday, November 11, 2009

Google is my Best Friend

Who was I trying to fool? There's no way I could wait 2 weeks to follow up! At 8:30am I was on the phone to Sick Kids Hospital trying to determine when we will be seen. 2 very unfriendly clerical staff later I now know that there is no such thing as an "urgent referral" fact, the second receptionist had a snide little chuckle when I told her that Dr. J had sent an urgent referral. She was all too happy to inform me that how urgent a referral is is not up to the referring doctor, or up to me or anyone else, it is at the sole discretion of the neurologist who triages all referrals. This doctor, whose name I am not allowed to know, will be reviewing referrals this Friday. So apparently if I call back on Monday this woman, who obviously has never had the experience of being told that HER child has a cyst in their brain, may be able to tell me when our appointment is. It really should be a prerequisite for ALL staff at a children's hospital to have a bit of compassion and understanding.

Aside from all of that I have of course done a whole lot of Googling, and have also managed to get a copy of the actual MRI report (Sick Kids told me 4 weeks to get a copy, luckily Dr. J and our own family doctor treat us like actual people and provided me with a copy today). According to the report the type of cyst Joey has is an "arachnoid cyst", more common in males, and more common on the left side but Joey's is on the right. It also states there is some "increased FLAIR signal in the parietal white matter". I'm not exactly sure what this means in layman's terms but it seems to mean abnormal electrical activity in the brain? The myelination is consistent with his age, which is ironic since this was the only abnormal finding in his first MRI and the reason for the repeat exam!

There is a LOT of information out there on arachnoid cysts and it's difficult at this time to apply a lot of it to Joey specifically. In what I've read it would appear suspicious that the cyst didn't appear on the first MRI as they are usually present at birth. What is scaring me the most right now is a possible rupture if Joey sustains a fall or blow to the head of some sort. What is making me sad is that it seems highly likely that Joey has been experiencing headaches but of course is unable to communicate to us when something hurts. The idea that my baby could be experiencing pain and he can't tell me so therefore I can't try to fix it is something NO parent or child should ever have to experience.

We are seeing our family doctor on Monday so hopefully she can help me interpret this report a little bit.

- P, J, J & B

Monday, November 9, 2009

The MRI Results

This morning I received a call from Joey's pediatrician, Dr. J, with the results of his MRI...Joey has a fluid-filled cyst measuring approximately 3cm x 2cm, the fluid is cerebrospinal fluid (CSF). It is located in the right middle cranial fossa, which is over the right ear in the temporal lobe.

Ummmm, yeah. She really couldn't tell us much more, since neurology is not her specialty, and currently we do not have a neurologist since they all decided that they had done everything they could in regards to investigations. Obviously not! Apparently the only people who thought a repeat MRI was necessary were Joey's parents and this pediatrician, and obviously we were on to something.

What Dr. J could tell us was that the cyst is relatively large, and is likely contributing to his symptoms (low muscle tone, lack of speech, cognitive delay etc.) but that it would be unrealistic to think that once the cyst has been dealt with Joey will turn into a "normal" little boy. She did say that this is a big indicator that Joey's brain did not develop correctly in utero, likey in the first trimester. She could not say why this wasn't found on the first MRI at 7 months or what that could mean, and she could not tell us for sure what the best course of action will be. What she did say that there are a few treatment options in the case of a cyst that is obviously can be left alone and monitored regularly for growth, a shunt could be placed in the cyst to drain it to another part of the body where the fluid will be absorbed or we could be looking at a craniotomy to remove the cyst. It all sounds pretty scary to me.

So an "urgent" referral has been made to both a neurologist and a neurosurgeon at the Hospital for Sick Kids in Toronto. Funny enough, when we left there 2 weeks ago after the MRI we were sure that we'd seen the last of that place for a while, and now it looks like we'll be spending more time there than ever.

We will update again once we know more.

- P, J & J