The past few days have just been a whirlwind! I am so glad to be home with all the kiddos snuggled in. Aidan is doing awesome! Thanks to some awesome friends, he has had a fun filled few days. And the rest of us are tired but safe.
I would like to make some sense out of the doc appointment we just went on, but words still fail me. It is hard for me to even verbalize what went on. And sadly I did not respond to the Doc how I should have. But I was totally blind sided by what was happening. Before I got to his office, I had played every possible scenario in my head...at least i thought I did. I figured he would say: "She is great, no need for collar or more surgeries!" (wishful thinking), "She needs to wear collar, but hold off on surgery." (most likely), or "She needs surgery now." (dreading those words). But no none of these things were said. So i will try to explain what happened.
Before we even went on this appointment, her ped sent reports from her latest MRI and reports from her current neurosurgeon. I took with me a disc of her most recent MRI that was done at Cleveland Clinic. When we arrived, the PA came in and started asking general questions about Brooke and her history. I kept thinking the she was acting funny. She kept looking around the room, and avoiding eye contact with me. I brushed it off as she was just not comfortable looking at people. She excused herself for awhile and we waited. When she came back, she still acted distracted. Then the doc came in. (now I had been warned that his bedside manner was not warm and fuzzy. Which is fine as long as you are honest, and kind to my daughter.) He started asking a few questions. Again I felt really strange, like he wished he was anywhere but in the room with us. After general questions, he states that my ped and I were involved in a cover up. I looked at him funny, and he said that neither my ped nor I were honest, and we should not even be there seeing him right now. I was very, very confused. He told me if he had he known who Brooke's nsg was he never would have agreed to see us. Again confusion. Then he tells me he can't even tell me anything because he has no reports, and he is just going by what I am saying and i am not a doc. Again more confusion as i knew her ped had sent over multiple records and they listed who her nsg was!!! He knew who her nsg was and myself nor the ped covered anything up! I told him well not to worry because I have every MRI and report ever taken on Brooke. I pulled out my rather large file. He was not pleased. They pulled up a few MRI's and he said, "Oh she actually did have a Chiari I Malformation!" Umm no I am lying and we just had brain surgery for the heck of it! Then he criticized the surgery, and the choices made. Told me I should have come to him first. Told me he really could not help now. Told me the most current MRI was useless. But he said the collar was necessary. He said "Do you not see it makes her feel better?" I know it makes her feel better. He told us he would wait on fusion, and then said he could not even tell from MRI if there was instability because it was such a bad one. It was around this point he leaned in close to me and said, "Do you understand what I am saying, are you following me?" "I replied yes. He said, "No really do you understand." Ummm yes and then I proceeded to repeat back to him what he was saying.
By this point I was questioning everything. Whether he was genuine or just condescending. He kept saying "I do not know what you want to hear from me?" I kept telling him his honest opinion about Brooke's condition. But he would not answer any questions about symptoms. Then I asked if we should get another MRI, and if he would want to see it and her again. He told me there was no point in him seeing her again because she already had 2 surgeries and I had not come to him first. I was beginning to see that he really detested our nsg. He told me again he would wait on fusion, but then followed it with "but that does not mean you will listen to me and won't go ahead and have the surgery done anyway." I was beginning to feel like my hand was getting slapped and nothing I said was going to make this appointment go well. I just set back and waited for it to be over. He asked me at one point if we wanted him to be our doc, and I answered I did not know. He asked why I had not come to him first. I told him I had not heard of him. He responded by telling me he was the greatest neurosurgeon in the US, and I was not very good at research. He told me the only reason I chose who I did was because of their PR work and not their history. At the end, he informed me he was not even sure how I managed to be seen in his office. He told me there were major lawsuits against my nsg. He told me he was on a gag order and could speak no more, and just walked out of the room. Brooke and I waited in the room. No one came back. There was no report. There was no one to say you are done. We were just left sitting in this room. I collected myself from the puddle I had sunk down into and we left.
I left in tears! My poor mom thought the doc had revealed some really bad medical news. I assured her no. I was so blown away and questioning everything! I really wondered had we made the right choices. Did I make informed decisions? Did I do enough research? I was so sick to my stomach! Thankfully we had a wonderful visit with friends to distract me. And Brooke had a wonderful time! I will post pics tomorrow.
Last night and driving today I thought so very much about this. To those of you who do not know, yes our nsg does have lawsuits against him. Tim and I both knew about these. And I am sure to the people that are involved they are very real. But reading through them, we were not concerned about the nsg's capabilities. When you are dealing with Chiari and Tethered Cord each case is different. We were told with the Tethered Cord surgery there may be improvement, there may not be, and there is a chance she may get worse. This is pretty typical statement for any surgery. I am not going to say much more on the lawsuit. Like I said before, I am sure that they are real to the people involved. We just understood that this is a semi-experimental surgery and results vary. We understood there were risks involved. He explained this very, very well to us.
When we saw Dr B we felt at ease, comfortable. My mommy gut felt like I was speaking with an old friend. I felt like he cared and wanted the best for Brooke. I do not think this was PR. Wait let me re-phrase....I know this was not PR. When Brooke was in the hospital, I have never seen a doc work so hard!!! And no matter what time of the day, he was kind and as Brooke would say...funny! When he did her decompression, he took time and made sure he did not cut her c1 so as not to create more instability. He let me be her mama, and carry her into the OR. He even personally removed her staples because she was terrified and only wanted him to do it. With her TC surgery, he waited until we were ok with it. The surgery did not go as expected, and he quickly realized her dura sac was not in the right place. He has never made me feel stupid, or like a bad mom. He has called and emailed just to check up on Brooke. If I do not understand something, he finds another way to explain...normally by drawing me a picture. :) Whenever we go to the office, Brooke is thoroughly examined, and they always give me a very in depth report.
As I write this my mind is at ease. I do not regret our choice! In fact, I am now more convinced we are in the right place. God led us to a doc who would care for Brooke. I am convinced His hand is still in this. We will see Dr B in May. I know many moms, dads, docs may not agree with me. They may think I am uninformed, and make poor decisions. I would disagree, and only say this....I love my daughter desperately, and only seek what is best for her. I want her to grow to love her God, and trust Him completely...not any man, women or Doc. I also know that many of you may have seen the doc we just saw, or our current doc and had a totally different experience. One thing I have learned is we are all so different. Our children has various needs, and therefore no one doc can fulfill all those needs. It is our duty as mama's to seek out the doc who will care for our child with the love and respect they deserve. And the reality is, we will all choose different people. The important thing is to fight for more Chiari research and more understanding.
I am sure this post is all over the place and not grammatically correct. Forgive me, I am kinda tired.....