Surgery update

ok, well, this has been an eventful last few days. I had called pretty much every ped neuro in my state as well as every specialist in head, neck & neuro on the LPA website to no avail. Nobody wants to give an opinion without seeing her in person and the soonest appointment I could get with anyone was the 29th which is too late. It's really hard to get past the receptionists and referral offices to get to a nurse even, let alone the actual Dr.....very frustrating!

I was tickled pink when I got a call back from Dr. Carson's office yesterday and they referred me to Dr. Jallo who actually does the decompression surgeries. She said they could not help me there but he may be able to. The secretary at Dr. Jallo's office out of John Hopkins said if I forwarded the pics to her she would forward them to him which I did yesterday morning, but have not heard back from yet. But even better news since then.

Thank you so much to the ladies who have taken time to give prayers, advice and help with research. Alex, once again I cannot express my gratitude to you for helping me get in touch with Peggy and Dr.Pauli. I just got off the phone with Peggy again and she and Dr. Pauli looked over Ashley's MRI photos and said they completely concur with my ped neurosurgeon said. Dr. Pauli's response to hearing Ashley's upcoming surgery is on Monday was "good" because they feel the same amount of urgency that our Dr. has. So as much as we don't want to put her through this, it is definitive that it needs to be done as soon as possible.

I asked about another MRI and Peggy said "absolutely not" so no such luck on waiting to see if results show the syrinx is stable or not. It is covering such a large part of her spinal cord that it is imperative it is done now.

The one thing that confuses me is when I had first looked at the MRI's I thought the white spot near her foramen magnum was the syrinx, but our Dr. said it was "high points" distressed" points. Peggy said that white spot is actually her syrinx, so I'm confused about that. I'm going to look again at the photos and see if I may have mis-understood, but either way, surgery is a-go for Monday the 12th, only 6 days.

Poor Ashley has no Idea what is coming:o( She is so happy and lighthearted I just hate to have her go through this, but the risks are far greater if she doesn't. The scary thing is, these tests were done over 4 months ago and they are telling us do it immediately, we're so thankful something hasn't happened already and I'm quite a bit ticked off at the hospital for not sending the results to my Dr. to begin with.

We should have never had to chase down results that were this serious!!! Somebody really dropped the ball on that one, but on the other side, God has his timing for everything and obviously it was meant to be found now. We can at least be thankful we had the MRI done when we did.

From now on, I will not let regular or even specialist Drs tell me NOT to get a test done on Ashley that I feel is needed. This should have been done 2 years ago and my ped-ortho, neurologist and pediatrician all advised us not to because the sedation could be more damaging that what they would find. That will NOT be happening again!

We know that no matter what Ashley is in God's hands and we trust that He will watch over the surgeon's mind and hands and fix our little Ashley. In the mean time, we need to get our heads together to figure out what preparations need to be made.
****** New update*** Our neurosurgeon just called, it's 8pm, that's impressive, and she explained things again and I mentioned our concern about the fact that the MRIs were taken 4 months ago and that it could be worse, and her exact words were" it could not have gotten any worse in this time or she would already be paralized" so that confirms the urgency , but also gives us peace of mind that it has not gotten worse. But yowza, to think her spinal cord is this close to something so detrimental reminds us again, the miracles God truly can work because she is still here and walking around like there is nothing wrong.