Tufts Medical Center Neurology

I saw one of the doctors today for recurring neck pain and painful headaches. She was very friendly and I do think she has a lot of knowledge in her specific area of expertise HOWEVER, I have EDS and it was very clear she had very little knowledge of the syndrome. I asked her specifically if she had experience working with people with EDS and she said no. She diagnosed me with Occipital Neuroglia, she told me to continue what I have been doing based on PCP recommendations. This was fine seeing as how I just started a new medication a few weeks ago. She also harped on doing yoga 3 times a week - how important it was to strengthen supporting muscles. I had already stated several times that I have been doing yoga for years, typically 4 times a week. I'm really not sure why she kept stressing it as if I wasn't already doing this. When I asked her how my EDS impacted the neck pain and head aches, she said not at all and that EDS patients don't usually report headaches and that people with EDS "can do anything anyone else can do." I'm not sure why she she phrased it that way, but she said it several times. Now, I do my research and have seen a Geneticist and my PCP for my EDS. When I say research, I mean EDS message boards, peer reviewed studies, and power points made by doctors for EDS conferences. Headaches in EDS patients is EXTREMELY common. There are some underlying issues due to overstretching connective tissues that tend to rupture causing things like as C1 and C2 instability or CSF leakage. These things can't be detected by a normal MRI. but can be detected by a standing MRI. Also, EDS is a spectrum and some people CAN do anything someone without EDS can do while others become wheelchair bound. Think of it this way - your entire body is made of connective tissue so when it doesn't work properly, it can cause a plethora of issues (e.g., joint dislocations, heart problems, liver problems, disc degeneration, vein ruptures etc etc). I asked about a few tests/conditions I had heard of (e.g., upright MRI). She dismissed me and said to check in in 3 months. I asked her if anyone at the hospital had experience with EDS and she said she would check (but she never did). I do think that she is a caring doctor, and she was very friendly and patient with me, but I am very disappointed that she dismissed my EDS knowing she has little knowledge and experience. I think it is VERY important to take into account all medical history when making a diagnosis. I think it is unethical that she did/seemingly will not do research or collaborate with a specialist or someone who has experience working with people who have EDS or refer me to someone with more knowledge. It's not that I think she is or is not wrong, but I think she made a diagnosis without having the needed knowledge and expertise. Needless to say, I will be getting a second opinion from someone who has the proper training and knowledge.
Apr 25th, 2021

Dr. Oster...where do I start? Yesterday was my first visit with him. Not only did the entire staff welcome me SEVERAL times to Tufts Neuro office but, Dr. Oster was VERY friendly, VERY welcoming, VERY informative and truly listened. He didn’t rush me through the appointment and explained everything I was unaware of. He is very educated and said if there is anything he doesn’t know the answer to, he WILL find out for me. After 10 yrs of seizures, I will finally be getting some answers. Thank you, thank you, thank you for making me feel so comfortable and welcomed!! Nichole Major
Apr 1st, 2021

Feb 25th, 2021

we all have our bad days but from check in to the end it was consistently a bad experience. She was even reluctant to make an appointment for us which I found very odd?! Lmao not the best interaction ever
Aug 29th, 2020

My appointment 1/25/19 was a joke. I already knew what she wanted to tell me when I spent 2 1/2 hours on a bus ride down from Maine. She's blaming something totally irrelevant for massive migraines among other physical health issues. My symptoms do exist, nothing will change that. If a provider doesnt want to treat my symptoms, just tell me. Quit yanking me around and expect me to continually allow needles to be injected into my face and my neck. I am human, with feelings, symptoms, and rights so start respecting that and treating me properly. Reception was a joke, I was there two hours early because I am from Maine and took the bus down. She told me where to grab a bite to eat - didn't realize it was going to cost the same price for junk food as a sit down restaurant in Maine. Reception didnt tell me anything about going back to the window to check in. All she said was come back upstairs at 10:00 am. She told me I might have to reschedule. I told her I wasnt coming back down from Maine if I was going to be forced to reschedule.
May 12th, 2019