MRI Pics

Today we received the CD of Brennan's MRI. We have posted what exactly the doctors found when they did the MRI. Below is what a healthy brain of a 4 year old looks like comparable to what a Chiari brain looks like.

Healthy Brain of a 4 year old

Brennan's brain

No cerebral spinal fluid movement.. you can see the part that is falling out

Sometimes we wonder how he functions. No wonder why the headaches were coming on and still come frequent. He has began to stutter more. January 6th we visit the neurosurgeon.. it can't come fast enough!

ABR Test

Today we finally got Brennan's ABR test done. ABR is an automatic braintstem response test that shows if the brain is responding to certian sounds. They were checking his cochlear nerve. Since it is the nerve that runs to the back part of the brain that is effected, they wanted to make sure it was not more damaged. Good news is there is no damage so we move forward to the next appt to see the neurosurgeon. Although his hearing is good, we are still questioning his speech. Why is his speech still off? All of this could be from the Chiari.. January 6 can not come fast enough!!!

He was ready to rock and roll! Couple pictures from today... waiting to see the doctor and the anesthesiologist.

ABR test date

Today we recieved a call from Cardinal Glennon's Neurology department. We have been waiting on a date for Brennan's ABR test to be done. Dr.Elbabaa, Dr.Geller and Dr. Kaulas all agreed that Brennan's test can not wait until Febuary (that is when audiology could get him scheduled). Dr. Elbabaa and Dr. Geller bumped his hearing test to urgent and we are now scheduled to have his test done on Tuesday, Dec 23 @ 7:30 am. Another step closer...

Finally!

Today I followed up withr Audiology department at Cardinal regarding Brennans ABR test. Because his tonsils area type 3.. the anesthesiologist has to be present when they put him out for the test to monitor him. I am pretty frustrated with them on that! I told the lady this was holding us back from seeing Dr. Elbabaa.. the neurosurgeon.  Needless to say I was not very nice. I called Dr. Elbabaa's office and talked to his head nurse and explained to her the situation. Because Brennan's headaches are more frequent she said that we can get the test done later and that he needs to be seen. So on that note.... we are scheduled to see Dr. Elbabaa on January 6th at 9:45. She was also going to check into why the audiology department has to wait so long too!

Let's rewind and start from the beginning.....

Now that we are started the blog about what Brennan's diagnosis is, I have had several people message or text me asking me what exactly are the symptoms of Chiari and what led to the diagnosis. Let's start from the beginning! When I was 18 weeks pregnant, we had our gender scan to find out what the sex was. At that doctor appointment, the ultrasound tech kept looking at his head and a perinatologist came in to look at the ultrasound. They found what is called a choriad plexus cyst in his brain. Apparently these are common in babies in utero and can dissolve on their own. As the weeks went by and we monitored the cyst, we were gave the all clear and was told it was gone and to never worry again.

Fast forward just a little... January 28, 2010.. we welcomed an 8 lb 8 oz baby boy. He was our Buddha baby. We were excited to add another boy to our family! As time went on, we as parents tried not to compare our boys but just noted that Tyler did everything early.. ie.. walking, talking, getting his teeth in early, so we thought Brennan would do the same. When Brennan was a year and a half we noticed he was just progressing a little slower. Some babies progress at different things in their own time. By the age of 2 Brennan never really said much. We started noticing that something was off about his hearing and speech. I took him to our pediatrician at the time and stated our concern with his hearing and his speech. He really didn't want to listen and take in consideration what we were trying to say and kept putting us off. We went a few more times to this pediatrician and he pretty much "blew us off". Being a mother I was concerned and I was not happy this doctor didn't want to listen.

We also thought we were going through the terrible 2's with this attitude. The melt downs and screaming fits.. enough to put any parent over the edge. Needless to say.. this is what opened my eyes realize that something was really off.. the mother instinct set in and I  at that point was very concerned.

When Brennan turned 3 we noticed things were not getting any better. I noticed he would go into this "space out"... he just looked really tired, his eyes would glaze over and he just looked really out of it. He never really said much to us about anything hurting but you could tell something was off. He would also try to talk and ask us for something or show us something but it was very very hard to understand him. He would get frustrated because we couldn't understand and would show us what he wanted.

One day I did ask him when he went into these "space out' fits if he was tired. He said no but I asked him he didn't feel good and he pointed to his head and tried to get his head hurt. I didn't think of anything at the time and gave him Tylenol. As time went on he would get these headaches here and there and would always point to the back of his head. I always had in the back of my mind that maybe his headaches were attributed to the cyst he had but then reassured myself it couldn't be because the doctor said it was gone.

That same year,  Brennan went in for his preschool screening and they wanted to know what the concern was with him. We stated his speech and hearing. After having him evaluated, it was definitely clear, we had an issue and we needed to see an audiologist. Made an apt with Dr. Lane and he ran a bunch of tests on him. He indeed had some issues and that same day we were scheduling an appt with Dr. Papazian, an ENT specialist. Went and saw him and it was pretty clear he needed tubes to help with what they said was "partial hearing loss". He had the surgery to put tubes in and Dr. Papazian was pretty sure these would help. Brennan started Pre-K later that year and started speech therapy. As that progressed we still felt like we were seeing progress but yet sometimes we felt like we were not seeing this at the same time. Still having these "space out" fits but things changed within the next few months.......

Brennan would go to sleep and in the middle of the night he would pee the bed. Mind I add, he was also potty trained. Everytime this happened with the episodes of peeing the bed, he would tell us his head hurt. Showing us the same spot.. the back of his head. We really started to wonder what was going on. We always thought it was something to do with change... he likes to be on a schedule.

Again.. things were not getting any better.. the attitude, not listening, getting in trouble.. it was enough to put me over the edge at times. People that know Brennan always said there is just something.. something that was off. I would talk to friends and voice my concern of this. There were many days and nights of tears from me because I knew something was just off. I was upset because I couldn't handle it. I thought his hearing and speech would be better, tried breathing in and out when the temper tantrums were in full force but that just wasn't the case He definitely likes to push buttons. His answer for us when we asked him why he would do things he was told not to do was "my head hurts'. That was his excuse for everything...

Fast forward a little, the peeing episodes kept coming on. I started questioning myself again about that cyst in his head. My gut kept telling me something is still off... way off. Just couldn't get it figured out so I made an appt with our pediatrician Dr. Gerwe. I voiced my concern with him about his behavior's, his speech and hearing, bed wetting and headaches. These headaches and bed wetting were coming more frequent. We felt like his speech was not progressing, falling backward and being back to square one. Dr. Gerwe was concerned when I told him his headaches were coming on more at night. He stated that headaches should not come on that strong at night. Children should not have headaches that frequent and strong. He stated that was a red flag for him and he ordered the MRI... Finally!!! I had a doctor that was willing to listen to us instead of beating around the bush... so big props to Dr. Gerwe for ordering the MRI!!!!

Might I add that because of Brennan's speech and hearing issues, kids are mean. So mean that they call him stupid and even the word "retarded". Really??? Really??? This breaks my heart. To have my six year old son come off the bus and ask me what "retarded" was broke my heart. I asked Tyler why he wanted to know and he stated it was because kids were making fun of Brennan. It makes me angry... no kid deserves to be called names.... EVER!!!! 

We went and got the MRI done and it was the longest 48 hours of our lives. Waiting for answers... when Dr. Gerwe called with the results, he stated it definitely was not a tumor or cyst we were looking for but it was much worse than that.. Chiari malformation. I was totally in shock when he was explaining what it was.. basically in a nut shell his back of his brain is falling out of his head?? WHAT?? I was stunned. I never heard of it. He told me we would have to see a neurologist to explain everything and that the only way to fix this was surgery. Surgery.. on his brain? Really??? I think from then on everything was a blur and I feel like I am riding on auto pilot now.

So meeting with Dr.Geller and Dr, Kaulas  we got our answers. No wonder why his head hurts.. his speech and hearing are off. His brain stem and cerebellum are being pushed out of his skull. It is effecting everything since the cerebellum is the main part of your brain that controls a lot of the body. They pulled up his MRI scans and I can say I think my jaw hit the floor when we saw it. I really don't know how Brennan functions. Dr. Geller showed us how a normal brain should look like and compared it to Brennan's. There is no spinal fluid moving.. it is pretty much all blocked. We are still in shock with the results but FINALLY FINALLY relieved that we now know what is going on. It is not the news we were prepared for but we take one day at a time. I have ordered a copy of his MRI scans and will post what exactly we are looking at. We have been referred to neurosurgeon, Dr. Elbabaa and I am still waiting to hear back from his office. Hoping to schedule soon. Brennan also has been scheduled for an ABR test for his hearing. Checking to see if his cochlear nerve is damaged since it runs in the back of the brain being effected.

So there you have it... in a nut shell... how we came about this diagnosis. Not been an easy couple of years but as a mother.. I can say.. it was my gut.. the nagging feeling that something was off. Just had to keep digging until we got our answers.

December 11. 2014 - First Neurologist Appointment

On December 1, 2014 Brennan was scheduled for an MRI at Cardinal Glennon Children's Hospital in St. Louis.  Thursday December 4th, we received a call from our pediatrician that the MRI results were received from Children's and they found that Brennan had Chiari Malformation. At this time the pediatrician contacted the Neurology Department at Cardinal Glennon Children's Hospital to set up a game plan.  Grandma and Grandpa Curry visited on Friday December 5th and we noticed that Brennan started to stutter while talking and we were concerned since he has never done that before.  We advised our pediatrician of the recent stuttering problems that Brennan had.  Naturally he was concerned so he contacted Cardinal Glennon and advised them of the recent activity with Brennan.  We received a phone call from Cardinal Glennon on Tuesday December 9th stating that they had an opening for December 11 with Dr. Geller, Neurologist.  We took the appointment and went over there today.  At the appointment Dr. Geller confirmed that Brennan did have Chiari Malformation.  He stated that his brain stem is falling out of his skull and pressing against his spinal canal.  The brain stem is not allowing his spinal fluid to circulate properly and would need surgery.  The doctor stated that this surgery is not an emergency but it is something that will need to be done.  During the visit the doctor checked all of Brennan's motor skills and asked numerous questions on the milestones that Brennan has had up to this point, ie: when was Brennan first able to use a spoon to eat, when did he first craw, walk, run.  At this time the doctor sent a referral to a Neurosurgeon and a referral for an ABR, Audio Brainstem Response test.  We do not have the two appointments scheduled as of today.

So yes it is true that Brennan's brain is so big that even his big ole' head can not contain it!  Chiari Malformation is not a common problem.  It is considered to be a birth defect.  The doctors were happy that we found the problem soon and they stated that they usually do not see the symptoms that Brennan is having until the patient is older and starts growing.  The doctor stated that usually one surgery is needed to correct the problem.

We ask that prayers are sent to the good Lord above to put his protective hand over Brennan and his family during this time.  With His help I know that we will get through the surgery and recovery.

Philippians 4:13 says " I can do all things through Christ who strengthens me."