So, I am going to make this as less confusing as I possibly can. Where do we start? How about Wednesday, September 3. We had an appointment with Lilah's neurosurgeon, Dr. Aronin, in Austin, TX that day at 1330. While we were there, she told us that Lilah's head was growing faster than what she liked to see and that her head growth was starting to stray away from the average achon head size.
This was such a concern for her that she immediately scheduled Lilah for imaging testing done the following week, the 10th of September. So, on that day, she had MRI's, CTScan, MRV and Xrays done. Those took about two hours to get all those images done and she woke up just fine from that entire procedure.
The doctor recieved the images the following day, Thursday, and her receptionist give us a call today to say she had an appointment on Wednesday, the 17th. A few hours later, another receptionist called and told me that they had scheduled Lilah's surgery for the 25th of September. I know, did you miss read that? Nope, that is what happened. I recieved a call on Friday, the 12th saying, 'We have Lilah's surgery date scheduled for the 25th at 8 o'clock. Does that day work for you?" "Yes" "OK, just wanted to make sure, bye." Click and the conversation is over.
A million questions were running through my mind. What di dthe images show? What surgery is she having? Where are we going to stay? How is Lilah going to deal with all of this?
I immediately called Trent and told him how the conversation went and he had the same questions for me! I didn't have the answers and felt stupped for words. After hanging up the phone with him, I called the receptionist back and ask exactly what is she going to be having done and will the doctor tell us more about it before she has it. She said that Dr.Aronin will discuss in detail what is going to be happening at the appointment on the 17th. And that she will be having 'craniectomy for posterior fossa decompression.' Laymen's terms, I still do not know exactly, but they will be releaving the pressure on her brain, possibly due the excess fluid built upon it and possibly be doing surgery on her foraman magnum.
I will keep this updated as soon as we know more about what is going to be happening with everything. Please continue to keep Lilah in your thoughts and prayers and send her some strength because she will be needing some extra help!
more to come
This is something I found on NeurosurgeryToday.org - http://www.neurosurgerytoday.org/what/patient_e/chiari2.asp
ReplyDeleteA posterior fossa decompression is the removal of the bone from the back of the posterior fossa, called the sub-occipital bone. The outer covering of the brain, called the dura, may be opened and a graft inserted. This helps make more room for the brain and the spinal cord.
Hope this helps - we'll be praying for both of you!
Lilah is having a decompression of the Foreman Magnum. Like Mike said, they will remove or shave part of the bone that her spinal cord runs through to relieve some of the pressure and fluid building up in her head. If you can, contact Dr. Pauli to have him review Lilah's MRi and charts to confirm decompression is warrented. This is only a second opinion, but it better to be safe than to put Lilah through surgery. If you need Pauli's contact, let me know at jannob980006@yahoo.com.
ReplyDeleteSheri!
ReplyDeleteWelcome to the blog world. My son, Caden, is 17 months old. We are watching his stenosis carefully and see the neurosurgeon again in October. I will be thinking of you and your family during Lilah's surgery. Please keep us updated. Lilah is adorable!
Trisha
Hi Sheri,
ReplyDeleteIt's always fun to meet new blogging families! Lilah is beautiful, and you all will be in our prayers during her sugery!
Jenn