Update From Stanford

Well I am sitting at the computer in the lobby, with Mackenzie, at the hotel while Rob and Steven take a little nap. Well, that is what we hope. Of course, Mackenzie was not up for napping at the same time.

We were at Stanford for 2 1/2 hours this morning. Thank goodness, Auntie Diane's friend, Kathy, came by to help with the kids. She entertained Steven after he met the doctor.

Well the plan is for surgery. We'll start with the good news. They will not need to relocate the facial nerve this time since that was done so hopefully no facial paralysis at all. The only issue is that since the facial nerve has been moved out of its protective bone location it is hiding in scar tissue. Looking over my previous surgery records as well as some sophisticated machinery during surgery will likely keep that key nerve safe. Dr. Jackler is pretty confident that they will be able to go in well behind the facial nerve's location. Also, probably no new nerve damage or noticeable hearing loss since everything was pretty much taken out the first time around. Then with new surgical cosmetic techniques they are going to look at improving my former scar on my neck. They also are going to do an injection near my vocal cords to improve my voice which will also assist in my swallowing/aspiration issues. They also are willing to work with me to protect my milk supply so that I can continue to nurse Mackenzie after the surgery and initial recovery period.

Now for the not so great news. The tumor is much bigger than before and is up against the carotid artery which is a main feeder of blood to the brain. They do not know until they go in whether it has started to grow into this main artery or just up against it. If the tumor is growing into the carotid artery things get more complicated. So during my pre-op, a week before surgery, when they go in and embolize the main feeders they will also do a balloon test. They will blow up a balloon in my carotid artery, temporarily shutting off the blood supply and see if, as Dr. Jackler put it, I start acting goofy. If I start acting goofy they will immediately deflate the balloon and know that should the tumor be growing into my carotid artery that they will just have to leave that piece behind. That left behind piece would then be watched and should it start to grow they would use the Cyberknife (targeted radiation to control growth and hopefully kill it off the rest of the way). If however I do not act goofy during the balloon test they know that my body can compensate for that lack of blood using other blood vessels and such and then in the event the tumor is growing into the carotid artery they will close off my carotid artery and remove the entire tumor. Let's hope that I respond okay to the balloon test and/or the tumor has not grown into the carotid artery just next to it.

Also, with this large of a vascular tumor and the carotid artery involved I most likely will need a blood transfusion so I will be having 2 units drawn before surgery to be used during the surgery. There also is the risk of stroke though they are taking every precaution to mitigate that risk (balloon test, urine test for hormones being secreted, and obviously monitoring during surgery).

The last bit is that the tumor has grown into the top two cervical vertebrae of my spine. At least now I know why my neck pain has been worse and not responding well to chiropractic care. Dr. Jackler told me no more chiropractic adjustments on my neck. I had already stopped them when I found out the tumor was back. Anyways, there is the possibility that they will need to put a small metal plate in my neck to keep my head from tilting to the left side after the tumor is removed. It depends on how much of the vertebrae bones have been eroded by the tumor.

So, the next step is for me to get an appointment with Dr. Harsh. Then I schedule a CT scan for just before. I guess bones show up on CT scans. Dr. Harsh will look at the amount of erosion in those vertebrae in my neck and advise Dr. Jackler about whether I will be needing the metal plate in my neck. If I need a plate it will then be ordered.

Once I have an appointment scheduled for the CT scan and with Dr. Harsh I will be scheduled for surgery. The referral to Dr. Harsh was listed as urgent so I am hoping I will be down for a CT scan and to see him within a couple of weeks. My homework is to do my 24 hour urine collection test through the local hospital lab (make sure the tumor is not secreting any hormones that could send my blood pressure through the roof during surgery) and also obtain my previous surgical records and pathology report and forward it to Dr. Jackler. Then, I think it is the 3 weeks before surgery that I have my blood drawn for the possible and likely blood transfusion. I'll double check that in the coming days.

There was so much information and so many appointments. Rob and I are both still processing everything. I wish I had more dates but, those will soon come. We are gratefully to be here. They are being careful and very meticulous in their planning. For that we are truly grateful.