Ohio Gathering 2013 - Page 3

Page 3 of 3

While NF2 tumors are not just limited to Vestibular Schwannoma, these tumors damage hearing and balance issues directly, but other issues also develop. Facial Nerve damage can also develop as a result of proximity to the Vestibular Nerve. Damage to this nerve is not just about the cosmetic issue of droopy facial expression, but eye issues, nasal issues, speech and eating are also issues.

Doctor Brad Welling: Award for Dedication to NF2

Phyllis Lee: Thank you, Dr. Welling. It's so wonderful to have you again so he can help us out and give us the latest information. It's obvious he has a very scientific background, extraordinary.

We are excited about that. What you do not also realize, he has an extremely compassionate bedside manner and extraordinary way with patients. And what we would like to do this morning is take time to honor that part of him. I have asked people to get up and speak about him. We are limited to a couple of minutes each. I know his time is precious. And he is kind enough to stay on a few more minutes. First, I will have Steve lead, my husband, get up and talk about some personal aspects. And then we will have Samantha talk, and then Sarah will be getting up to speak, then Tracy. And then I'll finish us off. And then I have something to present to Dr. Welling after I am done speaking. Here is Steve.

Steve Lee: Hi once again. Dr. Welling, since I moved to the United States, Dr. Welling has meant so much to me. Let's talk about his bedside manner. My last brain surgery was November 2012.

Dr. Welling came to visit me one night on his wedding anniversary, with his wife. On your wedding anniversary, you take time out to go see a patient? That is bedside manner, let me tell you. He also, I have memories of Dr. Welling coming to the rehab center to come and have walks with me, down the hall. He would take me down the hall for walks. And he is just an amazing man. Just an amazing man.

He cares about his patients so much. There's so much love generating from that man. It's just amazing. And we want to sort of honor him. It's sort of like a celebrity roast this morning. So these are some of my fond memories of Dr. Welling. He just really -- I came to the United States. I didn't have a surgeon, and Dr. Welling was Phyllis' surgeon. And she told me, well, he is great; he is a good surgeon. And we share the same birthday. I think its Samantha now who will come up and say a few words. Thank you.

Samantha HicksHi, everybody. Can everyone hear me? I just wanted to take a second to personally thank Dr. Welling. Because I have had NF2 for 18 years now. I have gone through nine or ten neurologists because they give up and move on to something that more people have that basically will get more publicity. And they always kind of leave you with a note saying, hey, you have to find someone else. We're sorry; we are not taking your case anymore.

It's nice knowing that Dr. Welling is focused on this. That he cares about us long enough to stay around and see things through. I have never seen my dad get very emotional, except after we lost my mom to NF2. And then we both kind of just gave up hope that this is how it was going to be for the rest of our lives. And we are just going to have to deal with it.

But then Dr. Welling sat both of us down and told us, these are the options and these are the things we are working on. These are the things that we are hoping for the future. It doesn't have to be this way forever. I have never seen my dad hug a doctor. You should know that you are really special! But I feel like you have given both of us a sense of hope that just because I'm different doesn't mean I have to not be normal. And that means a lot. So thank you!

Sarah Orr: We first heard of Dr. Welling through the NF2 Crew. And then we got to meet Dr. Welling when he started coming to the Ohio Gathering. Then at the 2008 gathering, we kind of tackled him after his talk, and Larry and I approached him to see if he would see our youngest daughter Hanna, because we wanted to have early intervention on her, because of her diagnosis of NF2, and we wanted to have her Acoustic Neuroma removed. And we knew about his reputation, and we knew that she would be in good hands with him.

In January of 2009, he was able to get her in immediately. Then January of 2009, she had her first Acoustic Neuroma removed. And Dr. Welling saw to it that she had great care, including a stuffed animal when she went into surgery. I don't know if someone from his office saw to it, but she was visited by a little doggie that came to visit with her, pet therapy dogs. And because of that, we had to get her a dog!

Then in July of that same year, Dr. Welling performed a second Acoustic Neuroma surgery. And he also did my nephew Anthony's, that same day. So he was greeted out in the waiting room with a mob of family. I don't know which was worse, doing two surgeries in one day on the same family or being greeted by a mob of all of our family. He is responsible for saving their hearing, and saving two beautiful smiles of dimples. Anthony was going to come here today, but he is up in a tree stand out in the woods, because today is the first day of primitive weapons season. He is enjoying hearing the sounds of deer, which is a credit to Dr. Welling.

Dr. Welling won our family's hearts. He has not only become our kids' doctor, but a doctor for my sister, Carolyn, a doctor for my sister, Becky, and a doctor for my mama. My mama is Catherine Hawkins FARNSWORTH. And he takes wonderful care of my mother. When my mom's ABI was implanted, her body started to reject her ABI, he developed a wonderful care plan to help save it. And took great care of tending to it because it was bringing a terrible infection. And we love the tender care in that. When we lost our sister, Becky, he extended condolences to our family during that time of grief. I cannot tell you how much that meant to our family, just that simple act of kindness.

When you are from a multi-generational family is affected with a rare illness, your family kind of feels like Guinea Pigs. And doctors kind of treat you that way. But Dr. Welling treated us with great humanity. And he does tend to treat us and tends to us like, he says, overall what's best for quality of life. And he has treated us with dignity and true compassion in that simple act of kindness. And our family will forever be grateful. And we thank him very much for that compassion. Thank you, Dr. Welling.

Tracy Galloway: We all love Phyllis so much. We want to make sure she is okay. We first heard about Dr. Welling from our daughter's doctor, Dr. Blakely, who is her main doctor at Johns Hopkins University. When McKinnon was diagnosed, Dr. Blakely sent her scans to about ten different Otolaryngologists and she got 10 different opinions. Meanwhile, she said I want you to meet this gentleman over at Ohio State and speak with him on behalf of your daughter.

The visual that comes to my mind when I think of Dr. Welling, I was at a conference one day. It was in the evening time. Everybody at the end of the conferences are usually planning dinners to get together to discuss various things. I asked are you going to dinner? He said, no, I have other plans. So I went upstairs and got dressed. I noticed him in the lobby. He was reading a book. He didn't notice me. I walked over there and I happened to glance. He was reading his Bible. And when I saw that, it just made me realize that he has his priorities in the right place. And Dr. Welling has always been to us like a safe harbor in a storm. I could be very distraught, you know, about the situation. He'll talk to us in his very calming manner. Somehow it makes everything seem okay. And that's a gift. That is a true gift.

Also I have had a lot of friends, or other people in NF2 community that will ask me about a doctor. I will say have you spoken to Dr. Welling; perhaps you might want to talk to him concerning your child or your family members. And he is always gracious enough to speak to them and respond to them. I appreciate that, too. They always tell me, what a lovely, lovely man afterwards, after the conversation because he is always so very generous in talking with them.

So Dr. Welling, McKinnon had a major surgery, a lot of you know a few months back. She had her first vestibular removed. It was fairly large. It was a very long surgery. I just, as a parent, you feel like your heart is on the table. I mean, that's what is being operated on. When she went into that operating room, I have to say, I was somewhat nervous and scared, but I knew she was in good hands and she was with a good person. That's what mattered the most. Thank you, Dr. Welling.

Phyllis Lee: I get to speak last. I have been blessed being one of Dr. Welling's patients for over 20 years. Everyone I have ever spoken to has an extraordinary experience to share and the compassionate ways he interacted with those patients.

I have a few experiences of my own. First, people from Ohio State, so here is a behind the scenes glimpse. The first one is from Beth Miles Markley. She wrote Dr. Welling had a 20-year-old patient referred to him. She traveled from out of state to see him. And he made special arrangements to see the patient on a nonclinical day. Around 5:00, the patient needed to have blood work done. Since the mother was not familiar with Ohio State, Dr. Welling personally drove the mother and the patient to the blood lab, waited for the patient to have her blood drawn, and then drove them back. He has an extremely busy schedule, and he always tries to make appointments easy and convenient for the patient, especially those that are traveling from a distance.

Also I have a story from his executive assistant, Kelly Wolfe. She wrote to me: Recently one of our NF2 patients came in and did not have her hearing aids. I was given a note that the patient and Dr. Welling were writing back and forth throughout the exam. I was looking over the notes to make sure I didn't miss anything. So when I started to look over the paper, I noticed Dr. Welling had started off the visit discussing some of the artwork in the clinic. He was probably already behind schedule at that point. That's a perfect example of how he takes the time with patients on a personal level. I look at these things as well as his experience with NF2 patients. It makes him a critical member of the community.

She also did a side embarrassing note: Dr. Welling is so busy that sometimes I hand him notes as he is walking out the door. I gave him a post-it with a number to call, a physician, regarding a non-urgent request. On that particular day, Dr. Welling was going to the airport. When he returned from his trip, he told me he meant to call the Doc back, and when he was going through security, he placed the note in his shoe. He forgot to take it out. And the note was in his shoe the entire trip. He called the Doc one day from the original post-it, and she said, I didn't ask for the post-it note back!

This is from me on a personal level: I have been blessed beyond measure to be Dr. Welling's patient. It started when MRI scans were accidentally sent to the MAYO Clinic in Minnesota instead of the doctor in Nashville. After that fiasco, they strongly suggested I see someone locally and suggested Dr. Welling, who had just started with Ohio State. As usual, when it was time for surgery, he scheduled a pre-op appointment to go over the surgery, answer questions, et cetera. My father from Cleveland came down for the appointment. It was a scary time for us, but especially for my dad. He lost my mother to NF2 when I was a week old. He lost his oldest daughter, my sister, to NF2 when she was 14. I vividly remember that appointment. My dad was at complete ease after that appointment, as much as he could be. Dr. Welling spent a good hour with us, answering my pages of questions, and finally apologized that he had to leave because he was late for surgery.

The second story, it's when I had a tumor removed and an ABI put in. Dr. Welling and his team went through so much for me to get this done. I was wheeled into the OR and was on the table; I was scared and started tearing. The next thing I knew, a man had walked over and pulled down his surgical mask. It was Dr. Welling. He was there to reassure me that all was okay, and no tears! It's funny; I started crying as I was writing that, just remembering that. Dr. Welling is a dedicated professional probably the most compassionate and professional doctor I have, hands down, ever had the blessing to be associated with. He deserves to be recognized by the NF2 community for his excellence and dedication for finding a cure for us. It's obvious that he is passionate and committed to us. So on behalf of the Ohio Gathering, I would like to present an award to Dr. Welling, to thank you for all you have done for us. You are fighting for us to make our lives better and future generations for those who have NF2.

(applause)

This award says: It's presented to Brad Welling, MD, Ph.D., for your dedication to NF2 from the Ohio Gathering's 10-year anniversary, and today's date.

Dr Welling: Can I say something? That was about the nicest tribute I have ever had in my life. Thank you all so much! It was really sweet. I want to say, it was my wife's idea to go visit Steve on our anniversary, not mine. I'm kidding!

Phyllis Lee: A few little odds and ends and then we are finished. First, I'd like, Gladys wanted to say her and her daughter have the NF2 bracelets.

If you are interested in an NF2 bracelet, see her. But thank you all for coming this morning. We are fortunate to have speakers from Ohio State who are so familiar with NF2, and willing to share their expertise with us. I'd like to thank Andrea Crago from PRI. She has done CART for us for many years. You are awesome. Thank you.

Amanda: Thank you so much.

(End of seminar.)

Back - Page 1 for Facial & Eye Issues

Back - Page 2 for Latest in NF2 Developments