We got up very early to be at The Chiari Institute on time.
Our appointment was to meet with the nurse at 11am, then at 12pm with Dr.
Rekate. The drive there wasn’t as bad as we thought. Kaylie and I talked with
the nurse… basically getting a lot of medical history, even on Kaylie’s
siblings. Then of course the normal vitals… weight, height, blood pressure. etc.
Then we waited awhile to see the doctor. When we finally went in to meet with
the doctor Ben & I thought Dr. Rekate was very inviting, warm, and very
down to earth. He is very knowledgeable about Chiari, and with that said I was
very impressed about how he handled his expertise. I have been around a lot of
doctors …especially since having three kids… and it can get very frustrating
when your having a consult with a specialist…. And they act higher than you, or
they feel like you don’t deserve their time to ask all your questions about
your child. Dr. Rekate was the very opposite of those types. He treated us like
the human beings we are, and also had a genuine concern for our daughter.
When he
first came in, he told us right away that Kaylie’s case was severe, and that
her herniation was really 15mm (1.5cm). I immediately got upset… for so many
reasons. I asked him right away, how he got that, since we have been told 3
different sizes. The first time was by Kaylie’s neurologist that she thought it
was possibly 9.5mm, Then on the last MRI, in two different areas of the report,
it was said that it was no less than 1cm (10mm)… then later said it was 8mm.
Size doesn’t make a difference… but what upsets me is the fact that our local
radiologist and neurologist is measuring this stuff wrong. Seriously…. Can you
imagine other kids being dx with this… but told it isn’t herniating that much,
or it’s “a mild” case… and there parents
never seek out a specialist… because they trust what they are being told???? I
truly believe that our Children’s Hospital and our local neurologist do have
our child’s interest best at heart. But I also believe because this is such a
rare condition… there is a HUGE need for more education of it. It can’t hurt
these doctors to go to a conference or something! Sorry… for the short rant… but that’s how I
feel. I knew Kay had this, I knew surgery was going to be a possibility… but
when the first thing you’re told is that it’s “severe”… it hits you hard. And
it makes it worse knowing, that the MRI your child just had… you still have not
gotten a call from your neurologist.
Anyways…
back to Dr. Rekate. He explained that he correctly measures the herniation by
starting at the two lower points of the Foramen Magnum, then measuring down to
the end of the herniated part of the brain. And it comes to 15mm. He told us
that her brain was like a stopper in a sink. That it was fully stopping up the
Foramen Magnum, and that every time she coughed, sneezed, or cried… it was just
getting plugged more. He explained to us how she did not have a syrinx or
tether cord, and how because of this herniation… that every time your heart
beats, it helps flow the spinal cord fluid… and her fluid was having a hard
time getting through. It is like a piston. Because of this, he recommends decompression surgery. I will go into detail and how the surgery is done in a later post. But he had also said that what made him more concerned, was that Kaylie was getting help with her speech, and that when she was an infant, she had horrible reflux. He said those two things are known to happen with kids with Chiari. And said that with decompression surgery, besides the fact of the pressure pains (i.e.: headaches, eye pain, ear pain) possibly going away. Her speech would significantly improve, and she wouldn’t be such a picky eater. He said that these children that have chiari, could complain that their throats hurt, cough often, and sometimes gag a little while eating… due to all this. I told him that I had only seen Kaylie gag a few times while eating… and he said that the kids at an early age learn to control that, or choose foods with certain textures, to help prevent that feeling.
He told us he thought this would be her only surgery… that there is a very, very small percentage that she would need another one… due to her age. He said if she was two… he could most likely say she would have another, and if she was 10 he could almost be 99% sure she would never. He really thinks she would not need another.
Complications: We asked if we didn’t have the surgery, what were the risks. He said she is not going to die from this or anything like that. Only that she would live a miserable life, in pain. She doesn’t have a syrinx now… but if she continued to live life with such a severe herniation/and crowding… there is a possibility that one would form, or she could become Hydrocephalus. These things that could form because of not having surgery could a bad outcome.
The complications of the surgery: the top complication is what is known as a spinal fluid leak. When I talk about how the surgery is done in a different post, I will go into details of how this happens. But, He said in the 30 years that he has been doing this procedure, he has never had a child end up with a leak, after his procedure. The 2nd biggest complication is chemical meningitis … he said this type of meningitis presents the same symptoms as normal meningitis, but it is not as severe. And you just give the child antibiotics, and it ends up going away. And you don’t know about this, until about 2 weeks after surgery.
He said she would be in the hospital for 4 days… the first two days in PICU, then he would release us to stay in the area about 3 to 4 days. Then we would come in to see him, and if everything were going well, he would release us to travel home. He said typically he likes to see a patient 3 months after, and then in a year. And as he was saying “But”… I immediately said what ever is needed in traveling we would do… probably 10 minutes later, he said that if everything was going well at home, we could do a Skype visit, and then plan to come out in a year.
He said that the recovery time was about 6 weeks, and that’s how soon she could return to school. I had told him her school was very supportive in anything she needed, and that an IEP was already set in place, for the next school year. He said there are NO restrictions… with sports, or riding roller coasters at Disney!! J The only thing he gets concerned about is boys, and football…. Just because of the risks of concussions.
We asked if we still needed to see a neurologist or could we just go through our pediatrician. He said we didn’t have to, but as long as our pediatrician was on board with the treatment plan, and would order follow up MRIs as/when needed. He said she didn’t need to be on any medications, as we have found out, not a lot works to relieve these symptoms, but not only that he said that the toxicity percentage was greater, he recommended just staying with her naproxen as needed.
We talked a great length about genetics and the hereditary factor in all this. He explained to us that the field is still trying to figure out and do research in what causes this…. Because the skull formed a little smaller than needed, and her brain caught up, it had no other option but to protrude down. In the way he talked to us, he seemed to think that the size of the bottom portion of the skull was hereditary, and that there was a good chance that Abigail and Mason could have this. But there was also a good chance they may not. He said it doesn’t hurt them, or anything else to have MRIs done on them. And especially since all three of them had eating issues when they were babies, and they all three have speech issues.
We asked if there were any signs of any related conditions to Chiari… he said her MRIs showed none.
Overall we were VERY pleased with Dr. Rekate, and his staff. Yes, we do still have the appointment with Dr. Carson… but we are not sure if we will keep it. Ben and I are still keeping that option open. There is a feeling I believe one should get with a doctor that you plan on using. I have this feeling with my kid’s pediatrician. I love her; I can never say enough good things about her. And if it wasn’t for her continually checking on Kaylie about her headaches… we wouldn’t be where we are today in all this. My kids like her. And that feeling makes a HUGE difference in the outcome of events. You know… are they going to be around when you need them, are you going to be able to get in contact with them personally… or like how I currently am with our neurologist… I have only spoke with her once… every thing is through the nurse. And I get it, that’s how everyday things are handled… but it shouldn’t be with this. This is serious. This is not the flu, a virus, or any other common illness. Somebody is going to open my child’s head up and do surgery on her brain and skull. And I want that person to be available to me. We have very good feelings about Dr. Rekate. He was so kind, he told us about him and why he moved to New York, and showed us pictures of his grandchildren. He had a real connection with Kaylie… he moved from AZ, to be closer to his 5 year old, blond haired granddaughter, in which he said he couldn’t believe how much Kaylie reminded him of her. Besides looks, her sweet personality, and how she is shy. He reminded me of my father, so compassionate, and caring. And this is the type of person I want to handle my daughter’s 8-hour brain surgery.
Ben and I still have a lot to talk about… this isn’t a decision made on a whim.
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