I have alcohol running through my veins!!!!

Literally...well, ok not really. But I do get alcohol injections about once a month (and not the "fun" kind!)

I have a facial Arteriovenous Malformation (AVM) and am receiving ethyl alcohol embolizations with Dr. Wayne Yakes in Denver.

So while the alcohol isn't actually running through my veins (that would be really bad) it is being injected into them to destroy the AVM vessels and eventually provide a cure!

Check out my website to read my story about life with a facial AVM, meet my doctors, and stay up to date on my treatments through my "Denver Trip" reports!


Saturday, September 4, 2010

The end of my AVM Journey is near.

We are almost there...the end of the road.  This is what I've been working towards for the past three years, or really my entire life as far back as I can remember.  And I'm scared.  I'm nervous.  And I'm oddly almost in "mourning" for this all to end, for the AVM to be gone.  Honestly, I can't really wrap my head around any of it.

For the past few months, since April really, Dr. Yakes has been wanting me to have surgery to remove the coils in my face.  These coils are there because they were used in vessels too high flow and dangerous to safely inject alcohol alone.  But they aren't permanent in any way.  And they need to come out.  My friendly (most of the time) little facial wound, aka "the Warthog" is a direct effect of those coils putting pressure on my cheek and wanting to come out!  And we have obliged a little with Yakes literally pulling wires out of my face during two embolizations.  Crazyness for sure!  For those brave souls who don't get grossed out easily, you can see some pics from the coil removal here.

So I've been meeting with docs.  ENT's, plastics, blah blah blah.  And we have been preparing for the coil removal.  MRI's, xrays, consults, and lots of emails later we are ready to move forward with this next phase.  I was calling it phase 1.5.  But really it IS phase 2 out of probably only 3.  We are practically done with the embo's and this surgery will be a huge step towards being AVM free.  What I initially understood as simply a "coil removal" surgery has in reality turned into coil removal AND almost a complete excision of the remaining AVM.  To say I was a little freaked out would be an understatement.
But I've talked with everyone, gotten past the few snags in communication and understanding, and we are now full steam ahead.  Surgery will be on Sept 20th.  Dr. Hepworth, Dr. Cote, and Dr. Campana will be the 3 musketeers for the day and while they don't appear to have any "superman complex" I really do hope they have super human abilities and that this will all turn out better than my expectations...

The surgery will be 12+ hours at Porter Hospital just down the street from Swedish.  I'm a little bit bummed that I won't be at "MY" hospital but it really wouldn't have been the same anyways.  It wouldn't have been my standard 3rd floor pre/post op area or the usual crew.  Not even the same procedure room as this will be in an OR, not radiology.  So onto a new place, new people, and a new experience.  And I'm totally a creature of habit and comfortable in my routine.  Josh will be with me, and his Dad will spend a few days with us to support Josh during my surgery.  I will be in the hospital for up to 36 hours, spend the rest of the week in Denver recouping and then head home for a week off work.  After that, apparently I'll be good to go!  Hard to believe as it all seems so destructive.

So the plan is to remove the coils, remove most of the AVM that is left outside my jaw which is fairly close to the skin.  Remove skin that needs to go due to the superficial AVM branches which really are clearly visible with the naked eye.  There will be AVM left "inside" the jaw area which Dr. Yakes will treat with a few more embos a little later down the road.  And that's the plan.  Simple as can be, right?

Best case scenario- which we are all hoping for but I'm being pretty cautious in believing it realistic- will be for complete removal of coils and AVM tissue with no loss to my facial nerve function, skin just pulled and moved around a bit to cover any that is lost, minimal scaring and aesthetically pleasing results in general.  No super model by any means, but no where near Frankenstein status. 

Worst case scenario- complete removal of all the skin from my chin back to my ear, to just under my cheek bone.  Loss of function to the nerves with loss of movement to my mouth and possibly my eye.  Skin harvested from my back to replace that removed, which will not be a perfect color match but at least I'm a girl and can wear makeup!  Muscle and nerves from my rib cage to help reanimate some of the function in my face.  Not ideal, and much closer to Frankenstein than I had hoped for.  But looks aren't everything.  And it's not like I'm perfect now...

So ya...a tad bit freaked out.  And although the "worst case" is probably NOT going to be the reality I am still glad to know what it is.  Helps me prepare for what may happen and with luck I'll be pleasantly surprised. 

The docs are all great, all very knowledgeable, and in general qualified.  I say that because there really aren't many qualified AVM surgeons.  So not many people have extensive experience if any.  These guys DO have experience, although I would love if the number of patients were higher.  Dr. Hepworth is the main doc and "in charge" of his team.  He will be doing the removal of the coils and most of the actual damage to me.  He has been working closely with Dr. Yakes for at least the past year and I personally know at least 2 of his other patients.  Cyndi has already had a debulking surgery with him and he also put in her trach.  She loves him.  Dr. Cote is Super Plastics man and has extensive experience with military trauma, was the main consultant to the White House, and has worked on AVM's although admittedly much smaller ones.  Dr. Campana is like THE Cancer Recon guy and has won "Best Doc" for many years in Colorado.  He has worked on other "disaster trauma" reconstructions.  He also will serve in the capacity of micro-vascular surgeon in the event that "rerouting" needs to occur.  And I had Dr. Jon (my personal medical consultant!) check out their bio's and give me his opinion.  It appears that we have dotted i's and crossed t's.  But I'm still nervous and my control freak tendencies are ironically OUT of control.  Dr. Hepworth is the unlucky recipient of that energy and has pretty much met my "bully" side...as much as anyone can believe I have one.  However we have come to an understanding and now seem to be completely on track with good communication and a clear understanding of expectations from both sides.

So there it is.  The end of the road is in sight and I know I'll make it to the finish line.  I have to constantly resist my desire to just park the car and stop everything right here.  But I can't do it as much as I want to.  I've come too far and dedicated myself to this journey from that first trip to Denver nearly 3 years ago.  This IS what I have been wanting and I have to just keep my chin held high, continue to be my own best advocate, continue to look at the big picture and not just this moment in time, and to really reach for that word "CURE" which is waiting for me across the finish line. 

I thought taking that initial step into trusting Yakes was tough.  I thought it was one of the hardest decisions I have ever made.  And it probably was.  But right now this one feels harder.  Emotionally I just can't exactly figure out how to prepare.  I can control small details of this, but really I'm just a passenger for this part of the ride.  I have to let things happen knowing that the drivers are great at what they do and that we will get to the other side safely.  That trust is so hard for me to freely and somewhat blindly give to someone else.  But I trust Yakes completely.  I trust his staff.  And everyone feels like this is the next step needed and that these new docs are the right ones.  So I'm leaping again, with trust and fear equally mixed together.  I'm hopefully that when this is behind me I will be able to "see" that it was the right choice and I will be able to look back with a feeling of contentment, look forward with hope, and know that I will confidently recommend the same path for other AVMers that seek my advice and experience.  Give me a few months, and I will know all the answers.  For the next few weeks just ignore me if I bust in to tears for no apparent reason  :)  Or better yet, give me a hug cause I like them and they make me feel better!

Super Scaredy Cat Shalon 

1 comment:

The Mid-Cart Parentals said...

Sending a HUGE HUG your way, because I love you & I wish I could take away your fear. You are an inspiration to all of us & your journey IS helping other AVMers. Thanks for sharing it with us. Come visit if you need a little mindless distraction...the river is beautiful & peaceful.