Today was the big appointment day to meet my new surgeon and discuss her thoughts on my procedure.  She feels quite strongly that it is too risky for me (in light of my recent blood clots and my sleep apnea)  to have both cochlear implants done in one surgery.  She is unwilling to do it, and said that she discussed my case with other doctors at the clinic and they all felt it was too risky for me.  I am disappointed.  In some ways it seems like it would be so much easier to have one procedure, one recovery and make the transition and all of the adjustments one time.  Obviously my life and general health have to come first here and I do appreciate that she is being so thorough and honest with me and is keeping my health and safety first.  I know I have been praying for wisdom and guidance here, and for it to be obvious to me what the best course of action is to take.  This seems pretty obvious.  The door is closed for me to have both done simultaneously.  She told me I could get a second or third opinion, but I really don’t feel the need to do that.  I’m not looking for a doctor who will do what I want.  I want to have a doctor who is thorough and who would lean toward caution rather than taking unnecessary risks.  

My impression from an email from my previous surgeon was that once my blood clots were gone and that doctor gave the ok for surgery, we would proceed as planned.  The truth is he may have wanted to talk to me again in light of all that has changed with my health and there is a good chance he would have agreed that a simultaneous procedure was too risky for me now as well. 

I also found out that the appointment with the pre-anesthesia consult team (PAC team) is more involved than I imagined.  I thought it would basically just  be a session where we discussed my health in detail and talked about risks, etc.  Last night I noticed the paperwork said to allow a minimum of 2-4 hours for the appointment!  Obviously more than just a discussion.   Apparently sleep apnea is a much bigger deal than I realized when it comes to anesthesia and surgery.  Anesthesia causes your airway to relax even more and that lasts for a while after you wake up – I think she said a day or two.  If you already have obstructed breathing (in my case severe) it is a very serious concern that needs monitoring.  For that reason, my doctor said she would want me to spend the night in the hospital, rather than have this done as an out patient procedure.  The blood clot risk is also more than just the fact that you are lying still for an extended length of time.  Anesthesia actually causes blood clots and if you are already prone to them….another thing that needs close monitoring.  I asked her about what I was told before that most of the time the reason people die from pulmonary embolism is that they can’t get treatment in time – you typically die within 30 minutes from it.  She said that’s true.  My next question was if you are in the hospital and a clot goes to your lungs that would likely be fatal if untreated, can it usually be treated fast enough to save you.  The answer was yes.  Another reason to keep me in the hospital for monitoring. The appointment with the PAC team will involve in depth discussion of my health status as well as working with my CPAP machine and making sure their equipment is all calibrated properly to manage my condition.  They may do additional testing on my heart if they feel it is necessary. They will want more info about the plan for managing my blood thinning medications during and before and after surgery so they have they can make the best choices of anesthesia drugs to use for my procedure and know what they need to have on hand in the event of any problems that could arise during surgery.   I told my surgeon that I wish I hadn’t had the vena cava filter removed recently.  I thought that if it was still in place it would make a difference in her decision, but she said it would not.  There are too many other things she is also concerned about.  That made me feel a little better, although I still think it would have been good to have if I have the surgery sooner rather than later.

The next thing to consider is which ear to have implanted first.  She told me that she would leave it up to me.  I met with my CI audiologist after that appointment and we had a very productive conversation about that and some other factors in my decision.  She said that in my case, it was pretty clearcut that implanting my worst ear would be the best choice.  I haven’t had any usable sound in that ear in 6 or 7 years,  If it had been 20 years or something she said it would not be the best choice, but it probably will do pretty well in this situation.  Usually, you have a better result with the ear that has the most residual hearing, but it wouldn’t make sense in my case at this time to implant that one.  My word comprehension in my right ear was 9% when we tested in April with a hearing aid.  She said it is possible it will be in the 70% or 80% range by 6 months post activation.  No guarantees, of course, but it would likely be a great improvement from where it is now, even if it is less than that!  Also, it is a big deal to be getting input from both ears.  I haven’t had that in years, so it would be amazing, I imagine!  

Chet and I also have to decide if we want to go ahead and have the single CI done on Nov. 13 and keep all of the appointments as they are, or wait until the next calendar year.  There are some financial considerations with our insurance about that.  It’s tricky because of all of the changes taking place in the health insurance industry – it’s hard to know what the impact of all that is happening with the new legislation will ultimately be on our specific plan and benefits.  I think that we are leaning toward going ahead and doing the first one in November as planned.  We will probably give ourselves a day or two to think about it before we let the clinic know, but that’s what our thoughts are right now.

I found out today that I do not have a hole in my eardrum. I don’t know if the doctor that told me I do was mistaken or if it has closed up on its own, but today she did not see one. Apparently a hole in the eardrum requires surgery to repair and they cannot just do it at the same time as a cochlear implant as I was told. I’m thankful to avoid another surgery! I do, however, have an ear infection. I suspect I’ve had it for several months now. Maybe it never completely resolved back in August. I really don’t know.I have used some essential oils to treat it when I felt like it might be starting up again, but apparently I didn’t do it long enough or I just thought it was gone even though it wasn’t. She decided to use a suction device and vacuum my eardrum! Let me tell you, you haven’t lived until you’ve had your eardrum vacuumed! It wasn’t horribly painful, but there were times it was uncomfortable. We could see on a screen what she was seeing and suctioning out and let’s just say it is good to have that junk out of there! Yuck! I now have a prescription for eardrops that I have to use for the next 10 days. It will be great to have the infection resolved. I am bummed that I also will not be able to swim during that time. I really enjoy swimming for exercise and so far it is the only thing I truly do enjoy doing for exercise. Oh well, hopefully it will only be 10 days and then I will be back in the pool!

I’m feeling a lot of things today.  I’m disappointed, as I mentioned.  It’s also a bit of a bummer to feel like you finally have a plan (it was not easy to make that decision in the first place) and then to find out that you have to make a whole new plan that involves several more decisions as well – all with lifelong repercussions.  I also will have to deal with the insurance company again.  I’m pretty sure that while outpatient surgery does not require pre-approval, inpatient surgery does.  Maybe that ultimately is not a bad thing.  If they give pre-approval for the hospitalization and procedure, it seems likely that there won’t be any glitches with payment when the time comes.  That is a good thing.  

In spite of all of that, I am really thankful for God’s guidance here.  I meant it when I prayed that what is best for me is what would take place, and I appreciate an obvious answer!  Ultimately I want what is best for my overall health and then what is best for my hearing.  This could very well be the best plan of all for my hearing situation.  Depending on how it all goes, it is possible that we will hold off on the second implant until I lose more of my hearing in the non-implanted ear.  We’ll have to see.  The company that makes the cochlear implant I chose is a partner with Phonak, a hearing aid company.  Some of the features of the CI, like bluetooth, are also available in hearing aids, and if I have a Phonak hearing aid, my ComPilot would be able to stream sound to both the CI and the hearing aid simultaneously!  For now, this new plan means that I also will not be giving up the last of my residual hearing.  That might really be best at this time.  Maybe this plan really will give me the best of both worlds.

My specific prayer requests for now are to thank God for his guidance in this situation, for continued wisdom for Chet and I as we make the final decisions about the timing of this procedure, and that all will go smoothly with the insurance company.

Thanks for checking in and for your love and support!