Posterior Fossa Decompression.... this is the name of the surgery Kaylie will have on July 27th. I will first explain how the procedure is done, then the risks involved... and then talk more into doctors/surgeons. Kaylie will go in for pre-op testing on the 26th. Kaylie is currently only taking Naproxen for medication right now.. as needed. She will not be able to take this medication, or other medications, like ibuprofen 14 days prior to surgery.
Dr Rekate explained that his part in the surgery is about 4 hours... open to close. But, because of anastesia, positioning, IV starts, in surgery monitoring (the flow)... it will take about 8 hours.
They will have to shave about a 2" wide landing strip of hair. They will pin her hair up some, so that when her hair falls back down it will cover some of it. Kaylie's hair is pretty thin... so it will be interesting to see how we work with it.
Let me first state... I hope I explain this correctly, if I don't, I will correct it. But this is what I got out of it. First he starts by removing a small piece of bone, from the back of the skull. This will allow more room for her brain. Then the dura (the outer covering of the brain and spinal cord) is opened. He does this to help correct the CSF (cerebrospinal fluid) flow. I believe if there has been any scaring in this area, due to all the compression, they will try to remove it. Because that dura is opened... it has to be patched. Some surgeons use manmade patches, but Dr Rekate will be grafting a patch from her inner layer of her skull, to use as a patch. This will help in less infection, and less of a chance of her body rejecting it. Then he uses a very small and thin titanium bridge, that will go over the patch. This bridge helps protect the patched dura area from anything pushing down on the dura area...ie: muscles. Then he closes her up, with dissolvable stitches.
There is a lot of controversy over this surgery with neurosurgeons. Some feel they should be more conservative, by NOT opening the dura. Where other neurosurgeons are a little more aggressive, by opening the dura. There has not been a proven right or wrong way. This is still an area that is being researched on. There is more risks involved with opening the dura. The biggest one is a CSF leak. The way Dr Rekate explained it to us, is this can happen when a patch is being sewn in, and it is accidentally punctured, or from a tear that happens in the patch. But I LOVE being able to say these next words... he told us in his 30 years of doing this procedure, he has never had that happen. There is also more risk of infection when the dura is opened. Another risk with this surgery is what is called chemical meningitis. This risk is with any decompression surgery. This is an inflammatory condition and not an infectious one. Usually treated with cortisone type medication for a few weeks. and once medication is started symptoms are relieved pretty quickly.
Now, I know a lot of you are probably saying why would you take that risk??? For several reasons. First, and for most, Kaylie has a lack of flow, because she is obstructed. She NEEDS her flow corrected. Second, doing it this way is a better chance of her NOT needing to have the surgery repeated. There is a high percentage of patients that end up having to have a second surgery, of opening the dura, because there is too much scarring built up, and sometimes because not enough bone was removed.
Ben & I feel very strongly in that this is the correct way for Kaylie, and the right surgeon for her.
|Removal of the bone.|
|Explaining where the dura will be opened, and patch placed.|
In Dr Rekate's video of a conference he did, almost towards the end of him speaking, you can see the surgery being done, and the titanium bridge that he uses. (I do warn, it is very graphic... complete open surgery being shown.)
After surgery, Kaylie will be in PICU for two days, then another two in hospital. If everything is going well, we will be released to stay in the area for another 3 to 4 days. Then if everything is still going well, at her appointment in his office, we will be released to travel home. The typical recovery time is about six weeks, she can't go back to school until six weeks after surgery. But we will decide how she is doing, and when she will go back. Dr Rekate typically likes to see his patients back at 3 months, and at a year... if all is going well. Of course we can see him anytime. He also said that if things are going well as we are at home those first three months, then we can do a Skype visit, then plan to see him at a year.
Im sure you all remember Holly, that I had talked in several posts. She just turned six weeks the other day. At three weeks she was out and about at Target. She has also been swimming the past three weeks! She is doing very well, her mother says.
This surgery scares me so much, but at the same time... Im ready. I am ready for her to feel better, and have less pain. If anyone has any questions... please feel free to contact us.
Also... Kaylie's cardiology appointment is this Tuesday, the 26th.