Tuesday, June 3, 2014

Cleveland Clinic Day 1

This is the picture Dr. Barr's took during surgery--the greyish is the graft he did and it died within 5 days.

Today I spent  4 hours with a specialized doctor at Cleveland Clinic.  I was extremely impressed with him, his bedside manner and his credentials--however, he had not received any of my reports from the Mayo Clinic, I got them and actually faxed them and email them ..... they had nothing, none of my films, path reports, lab report, OR notes--we spent, luckily I had copies of it all with me but it really was frustrating to have to tell the story all over again and again--The doctor's PA came in to discuss why I was there--she looked at me and didn't seem to have much compassionate--for some reason I was so frustrated trying to get all my paper work in order--she said the receptionist who usually brings these referral patients paperwork to them to study before the patient gets there was out of the office, so they had not read anything or seen any pictures from my surgery---I told Diana, I was worried this would happen.

I sat telling my story--long story of my ear--from the blow to the ear when I was 3, to the current status. I felt like she was looking at me, but not listening--it felt like she had no connection  with what I was telling her.  She left the room to talk to the doctor, soon he came in and again I had to tell the story as he typed it into his computer.  He seemed to be concerned for me and could obviously see my face was effected.  He did all the routine check points to see the damage of the nerve.  Then he explained that the ear needs to have a complete debridement of the ear cavity and canal.  He said he could not and would not touch any facial nerve surgery until the ear is clear of all infection, and is healed.  He explained, and I have agreed with this all along, so has Eric.....no plastics doctor should be going in during ENT surgery to do repair of the facial nerves.  When he read the reports from Mayo, he was very complimentary of all the doctors I have seen, he mentioned Dr. Kreymerman and Heather and said he likes both of them very much, Dr. Kreymerman trained here at the Cleveland Clinic.  It was nice to have a doctor with a connection to some of my doctors at Mayo, for me it's reassuring.  He agrees with Dr. Barr's about the window of opportunity to get any nerve damage a possibility of repairing.  however, does not necessarily agree with taking the mussel from my tongue. I have until April of 2014 to have all my healing done from my ear before he can touch anything else.  He explained how the process works.  Basically he made an appointment for me on Thursday with and ENT here in Cleveland, then Neurology needs to be involved because of the skull involvement,  We asked to see a doctor I was told about that is an ENT--he left the room to get those organized, and I sat in the window seal of his office looking out into the beautiful green trees, and grassy area, it was  surreal  to me.  It takes a lot of energy to keep my mind focused on the HAPPINESS I have in my life, I have so much to be grateful for, this place feels right, I know I should be here, I know one of these doctors can help, my eyes start to bubble up with tears, as they trickle down my cheeks finally landing on my arm I was a mess, I said to myself "how did I get here,? why am I here?" (not in Cleveland, but in my life) The doctor came in and we chatted about my favorite doctor ever Doctor,  Peter Kreymerman, and his PA Heather Lucas--he said PK is a great man (I've said that for 5 years now, and Heather he said is sweet, compassionate and a great resource for me. He then did a quick assessment of my ear, the routine facial tests, like raise our eyebrow, smile etc.....he mumbled to himself, "yeah there is nothing animated about this right side."  He then explained he cannot do what I need done on my facial paralysis until I get the ear healed, also that I will have several surgeries to fix my face. I cried, I never cry in front of my doctors, I suck it up and do what they say to do.  This time, I'm exhausted and starting feel the burden of this all, my shoulders are heavy with burden. I'm glad Diana was there, with her nursing background she got all the answers to questions I would of never known to ask--one of them is that after the debris is cleaned out and healed, instead of taking a mussel  from my tongue (which in his words is old school and does not bring animation back into the face, he takes  the mussel from my inner thigh) or another procedure could be to take a nerve from the left side of my face and pull it over the right side, and hope for it to connect.

Within a few minutes his PA came back in the room and told me she was able to make an appointment with this doctor who specializes in my issues, she said she would try to get me squeezed in tomorrow, but for sure I have an appointment with him on Thursday, neurology will also be on my itinerary.  I began to cry again, Diana teared up and the PA had nothing to say but she too teared up. I left there feeling like this was a waste of my time, Diana feels very hopeful and even said the differences between what I heard at Mayo "your right side of your face will never look the same as the left, and you and Eric need to get used to it) Is that this doctor today gave me some HOPE.  I'm exhausted and need to get a good night sleep, my mind has continually been on this ear problem that I have not had anytime to think of anything else. Still praying for a miracle.