What we know is:
- the MRI showed that the tumor is not a tiny bean shaped tumor, rather it is a large mass located under my left jaw (not on my neck as originally thought)
- there does not appear to be any aneurysms this time (yeah!)
- it IS operable (yeah X10!!)
- the doc SHOULD be able to avoid the aneurysm coils from the previous surgery (which was a big concern of mine)
- The surgery should be about 4 hours (much shorter than before-yeah!) and barring any complications I should only be in the hospital for a few days then a 2 week recovery at home.
- Mark will be taking a 2-week leave of absence and my mom & step-dad will be coming out as well as my sister and my kids
- The scar should not be 15 inches again (yeah!), in fact they should be able to use the same incision site as before so no new scars on my neck! Due to all of the paralysis and nerve damage from before he will NOT be able to 'tighten up' my neck...trust me I asked, I figured that I might as well try to get something out of this. :)
What we don't know and won't know until surgery is:
- if it is cancer or not...it currently appears to NOT be cancer. The Doc will send a small piece of tissue to pathology during surgery so that he can make the necessary decisions while I am in the OR
- what nerve it is on. If it is on the one that has already been cut then there should be no new damage. If it is on a different nerve(s) then damage is yet to be seen
- we do not know why it would have re-grown on the vagus nerve because it had been cut with about 2 inches removed which is why they think it may be on a different nerve now. It does not appear to be NF2 (neurofibramatosis type 2) but the assumption now is that it is probably genetic (we kinda knew that because we believe my dad died at the age of 59, of the same thing)
- whether or not it is on or involved with the Carotid...if it is then I will probably need blood transfusions. IF you are so inclined then I would appreciate you and your friends/family etc donating blood at St Joseph's in my name. The last time I went through this (March 2000) I did not need any transfusions so all of the blood donated in my name was then used by MUSC (Medical University of South Carolina) for those people who did need it so it is all good!
Currently I am waiting for a call from the surgery scheduler at St Joseph's to find out the day and time, they want to get me in within a month (or sooner) and I am on the rush list.
Please do me the favor of not discussing this beyond the information I have just provided. This is a very rare tumor to begin with and having a recurrence is even more rare...although technology has improved greatly my alternatives are the same as they were 16 years ago. If you want to know more about what this is you can "use the Google" and search for Vagal Schwannoma...most of what's out there in cyberland is either dry medical PDF's or a website
www.vagalschwannoma.com which is not a medical based site but does have some good links. Any type of radiation including Cyberknife and gammaknife are not options for me and there is no chemotherapy available for this...as I said this is rare.
Again, please refrain from discussing anything outside of the information I have provided; this is not my first encounter with this rare bugger and what I really need is encouragement and support, not gossip and judgement. Please honor the fact that this is a tough pill to swallow especially on the heels of the Arapahoe shooting and my family is struggling with this right along with me.
Oh..and for those that choose to be less than positive or encouraging or in any way curmudgeony well I have but one thing to say... to paraphrase an old curse (or one that I recall form an old movie): "May the fleas of a thousand camels infest your armpits!" Ok... maybe that was a bit harsh or too snarky...please allow me my moments!