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.

Respectfully,
Pamela L