When Mel came over for an appointment, and I told her that I had seen Tamar for a swallow assessment. Mel said that I didn’t need to see her anymore then and she closed her case with me. This was fine with me because I could not work on my voice for a while anyway, so I totally agreed with her. For some reason, Mel had also told everyone from VNS who worked with me that they were going to have to close my case, so all of the people that visited me from VNS: Yuwell, Phil, and Peter were gonna have one last session with me, and that’s it. Peter came first and asked what was going on and why. My mother and I explained that the appointment with Tamar was a follow-up to the surgery and hopefully doesn’t disqualify me from VNS, because I was making huge strides and appreciated the service immensely. Peter simply ignored what Mel had said and, after that session, he ordered me a cane for me and scheduled another appointment.

Canceling everything because of a follow up appointment sounded crazy… because it was. Phil came and did the same, he ignored that Mel was trying to close the entire case, and we scheduled another appointment.

There was an amazing nurse who came to see me from VNS and after speaking with her, she understood that I was not trying to get out of VNS, and she made sure that the case wasn’t closed. I wish I could remember her name so I could thank her here. Thank you!

Soon after seeing the nurse, my mother received a phone call from Mel saying that she wanted to see me one last time. She had already caused a lot of confusion with all of the visiting therapies that I was receiving, but my mother reluctantly agreed. Mel came by the apartment the next day and told me that Dr. Miles said that I was not to eat anything, and that I wasn’t to talk. Mel told me to instead use this robot speaking program that I had been using when I had no voice.

This infuriated me. She said that Dr. Miles had left her a voice mail, so I asked to hear it. She said that she deleted it. I wanted to simply disregard what she had to say just like all of my other visiting therapists had. But I would totally be cooperative if my doctor DID say those things.

I decided to smile and nod until she left and I would never have to see her again. She had told me that the two things that brought me some joy (eating and talking) were forbidden, and she based this only on fabrications and hearsay, but not from someone who actually assessed my swallowing. After the appointment, I took some time to collect myself and then wrote the following email to Doctor Miles:

From: Cavin Balaster [mailto:[email protected]] Sent: Tue 8/23/2011 3:31 PM
To: Miles, Brett
Subject: Conflicting Instructions

Dear Dr Miles,
I had a swallowing assessment with Tamar Kotz last Thursday that you were kind enough to order before she went on vacation. She listened to my history, put me in her chair and had me drink water three different times while she felt my throat and then had me say “ah” and count to five. She said that while it wasn’t a barium test and she couldn’t see exactly what was going on that I appeared to be swallowing fine as long as I made a deliberate effort and focused. She also said that she didn’t think that returning to swallowing was going to be a major deal from what she was seeing and that if she weren’t going on vacation that she would start seeing me right away to get things underway. I really like her and hope to work with her when she returns.

When I told Tamar that the Speech Pathologist from visiting nurse service said that I could’t use my voice or swallow anything (this was before Mel told me not to eat or talk), Tamar said that she might not be that experienced with the type of medical background of my particular problem, and was uncomfortable outside a hospital setting with trials. Tamar also said that she saw no problem with me having small non nutritive trials of pudding, yogurt, juice, thickened pureed soup or even a little coffee just for quality of life. The most important thing besides making sure I wasn’t coughing was to make sure I kept my mouth very clean before I did these trials so that I wouldn’t get bacteria from my mouth into my lungs if I did aspirate a little.

I have followed her suggestions and have been so happy to be able to have something in my mouth again. I am very careful and am not really experiencing any problems, maybe an occasional small cough when I’m not really focused. I haven’t had any coughing fits etc. though. Tamar also said there was really nothing for the speech therapist from VNS to do with me right now while I was healing. Tamar didn’t want anyone working on my speech or swallowing until I was healed.

When Mel heard I was seeing Tamar she assumed Tamar was going to start seeing me on an ongoing basis and put me on discontinuation of services with VNS. This caused confusion with VNS and because my appointment was more of a followup surgical appointment, they sorted it out and didn’t suspend my services from VNS, but there was really nothing for Mel to work on.

Yesterday Mel called my mom and said she was going to call you and come visit today.

Apparently she checked in with you and said she got a voicemail from you that I was to have nothing by mouth and to not use my voice at all. That was her final visit. I am moving to outpatient status after Friday. My case management nurse was also here today and said that all my vitals are great and I am not showing any signs of aspiration symptoms.

So basically I have 2 main questions that I need answered by my doctor:

1. May I have some non nutritive trial things to swallow or should I disregard what Tamar said?
2. May I talk some at a low volume?

Thank you so much for your time, doctor. In the meantime I will be silent, nothing to swallow, and confused about why Tamar said one thing and you and/or the speech therapist from the visiting nurses service who did no evaluation said differently.

I really appreciate everything you’ve done and are doing for me even though I sound a bit upset. I was feeling and am feeling great other than what Mel told me and I look forward to seeing you on Monday. Thank you again, Dr. Miles.

– Cavin Balaster

I still don’t understand why Mel would stir things up and upset my mother and I. Soon after she left, my friend Jeremy showed up to say hello. He brought with him a 6 pack of puddings for me, which I was very thankful for, but was only going to talk quietly and not eat until Dr. Miles got back to me. He did so promptly, of course.

If Tamar said you can swallow a little you can swallow. I did not realize she cleared you for this. If you are coughing, slow down.
I did not say you could not speak, I just don’t want you coughing. You may talk, no yelling.

Brett A. Miles, DDS MD
Assistant Professor of Otolaryngology Head and Neck Surgery
Assistant Professor of Oral and Maxillofacial Surgery
Head and Neck Oncology and Microvascular Reconstructive Surgery
Department of Otolaryngology Head and Neck Surgery
Mount Sinai School of Medicine

Thank you Dr. Miles, and thank you Tamar Kotts!