The following update is provided by Mingjia Dai, PhD., Mount Sinai School of Medicine.
Oct. 30, 2014 — Since the publication on the study of the treatment for patients with MdDS, we have further explored VOR Readaptation for patients with classic MdDS (17 patients), spontaneous MdDS (no clear cause, 9 patients) and “MdDS” from head trauma (2 patients). The success rate in this group for classic MdDS is 76% (13/17), compatible with the published data. The rate for spontaneous MdDS is 33% (3/9), and there was no effect on patients with head injury.
We deeply regret that current treatment costs are a financial burden for some patients but at present we have not secured funding to support the study. However, we are continuously improving our technology, developing a home exercise strategy and searching for the mechanisms responsible for spontaneous MdDS. We are confident that we can increase the success rate in the future.
We would like to thank the MdDS Balance Disorder Foundation and patients alike for their support and encouragement. MdDS is a rare, devastating and intractable devil, and we believe it will come to an end in the near future. For inquiries and appointment, please contact Ms. Zelinette La Paz.
— Mingjia Dai, PhD. [Deceased 2019]
N.B.: The MdDS Foundation encourages research and clinical studies such as the one mentioned here. If you are a health care professional interested in submitting a research grant request, contact us.
You may also be interested in “Treatment of the Mal de Debarquement Syndrome: A 1-Year Follow-up,” Front. Neurol., 05 May 2017, https://doi.org/10.3389/fneur.2017.00175.
I first encountered a significant balance problem at age 55 after leaving a 7-day Alaskan cruise in September of 2009. The symptoms were frightening and constant sensations of motion making it difficult to concentrate, work, watch TV, read, exercise, etc. I went to numerous doctors, had extensive hearing and balance tests, but no one could tell me what this was until my ENT doctor mentioned Mal debarquement syndrome. I had a rough first 6 – 9 months, but gradually it went away. It came back with a vengeance two weeks ago after I went to a 360 degree type of movie experience at the Kennedy Space Center. I am now back in Minnesota, feeling miserable with constant rocking sensations day and night with all the problems I mentioned above returning. I participated in an email exchange with folks at MdDS for some time in 2009-2010. I am just wondering if any more is known about this terrible disorder now. I have much sympathy for anyone who suffers from this strange and life changing disorder. Thanks.
Jim,
In case you missed it, this recent post is about how MdDS research has advanced. It is on-going and recruiting. https://mddsfoundation.org/2018/01/31/tacs-research-recruiting/
Since you participated before, you can find information about our online support groups here: https://mddsfoundation.org/support. Some members have reported experiences similar to yours.
I have had MdDS for 2 years and the symptoms are impairing my ability to work. My disability insurer wants tests to confirm my impairment. Are there recommended tests to confirm impairment of executive function such as reading and concentration which I should be pursuing? Thanks.
We highly recommend that you join either of our Support Groups. Disability has been discussed quite a bit — you can search through the messages — but more importantly you can ask others about their personal experiences and get advice. Links to the Foundation-supported groups are at the bottom right of this page.