TUESDAY, JUNE 3, 2014
Cleveland Clinic Day 1
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| This is the picture Dr. Barrs 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 highly impressed with his bedside manner and credentials; however, he had not received any of my reports from the Mayo Clinic. I got them and actually faxed them and emailed 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 paperwork 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--the 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, and soon he came in, and again I had to tell the story as he typed it into his computer. He seemed concerned for me and could obviously see my face was affected. He made all the routine checkpoints to see the damage to 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 was clear of all infection and was healed. He explained, and I have agreed with this all along, and so has Eric.....no plastics doctor should be going in during ENT surgery to repair 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. Barrs 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 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 an 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 started to bubble up with tears as they trickled down my cheeks, finally landing on my arm. I was a mess, and 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 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 said he is sweet and compassionate, and an excellent resource for me. He then did a quick assessment of my ear, the routine facial tests, like raising our eyebrow, smiling, etc...he mumbled to himself, "yeah, there is nothing animated about this right side." He then explained he could not do what I needed to be done on my facial paralysis until I got the ear healed, also that I would have several surgeries to fix my face. I cried; I never call in front of my doctors; I suck it up and do what they say to do. This time, I'm exhausted and starting to feel the burden of this all; my shoulders are heavy with responsibility. I'm glad Diana was there; with her nursing background, she got all the answers to questions I would have 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 felt very hopeful and even told me 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 a good night's sleep; my mind has continually been on this ear problem, and I have no time to think of anything else. Still praying for a miracle.
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 felt very hopeful and even told me 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 a good night's sleep; my mind has continually been on this ear problem, and I have no time to think of anything else. Still praying for a miracle.
1 COMMENT:
I am in NC - please tell me about your experience with reconstruction. I am looking for a surgeon in the Raleigh Cary area.