News Release – statement from Dr. Michael Tymianski, Division Head, Neurosurgery and Janet Newton, Interim VP and Site Lead Toronto Western Hospital, UHN

The ILC Charitable Foundation – Ehlers Danlos Division

Over the last few weeks, recent reports in the media related to a University Health Network (UHN) based neurosurgeon, Dr Shamji, has caused concern regarding the future care for patients with Ehlers Danlos Syndrome (EDS) at the UHN. We have been in touch with the UHN to clarify plans for ongoing care for patients who were referred and/or booked for surgery or consultation with Dr Shamji. Please find below a statement from Dr. Michael Tymianski, Division Head, Neurosurgery and Janet Newton, Interim VP and Site Lead Toronto Western Hospital, UHN:

“As you can imagine, the arrest of Dr. Mohammed Shamji has come as an enormous shock to his patients and to everyone here at the hospital. UHN would like to clarify the current situation with respect to access to spine surgeons for patients with Ehlers Danlos Syndrome (EDS) who were under the care of Dr. Shamji. The neuro/surgical team at Toronto Western Hospital has four skilled spine surgeons, each capable of doing treatments and assessments for complex spine patients, including EDS patients.  

We are currently re-assigning all of Dr. Shamji’s patients to one of our other spine surgeons for follow-up. We continue to care for EDS patients along with all of our other patients and, as is standard practice, are triaging all patients according to medical need.

Our immediate priority has been to contact patients who were scheduled for surgery or clinic appointments in the months of December and January. When this is complete, we will then begin to re-assign patients who are booked later in the year. Please know that every patient chart must be reviewed by a surgeon to align the right patient with the right surgeon. As we are adding patients to existing practices, the ripple effect of absorbing new patients is not insignificant; however, we are working as quickly as possible to ensure appropriate transfer of care, and a visit with the new surgeon in accordance with level of urgency.

As always, any patient who has an urgent medical situation should present at their local emergency room.

We look forward to continuing to provide care to you and are saddened by the recent series of events. Many thanks for your understanding and patience as we work through this matter.”

The ILC recognize and respect how hard the UHN is working to triage the most urgent cases and reassigning patients that had post-surgical appointments, including those that have been waiting for their referral appointments with Dr. Shamji.  We also acknowledge the loss in expertise that Dr. Shamji brought as a scientist in the lab work he was doing to study and advance understanding in chronic pain and EDS and look forward to learning how this work will continue. We will continue to work collaboratively with the UHN to advance the care and understanding of the EDS population.

Through the leadership of the ILC Foundation, both in the area of Ehlers Danlos Syndrome and Chronic Pain Diseases advocacy work, a joint EDS Clinic has been established at the UHN and SickKids. Collaborations among multidisciplinary specialists are taking place and we are confident that access to care will continue to improve, based on early diagnosis and treatments of this patient population.

One of the outcomes of the ILC & McMaster University Canadian Medical Education EDS conference and the EDS Clinic discussions, is the need to expand primary care education on clear diagnostic criteria for EDS, as noted by Dr. Kristianna Martiniuk, MD and ILC medical adviser.  “A better understanding of commonly associated conditions and of the condition’s prevalence in the general population is important. With improved case finding, education regarding appropriate referrals to specialized centers would be equally important to avoid delays in confirming the diagnosis and accessing care for individuals with EDS” said Martiniuk.

The good news is that EDS is beginning to be better recognized.  With the newly funded EDS Clinics in Toronto, for pediatric and adult care, there is a multidisciplinary focus on early diagnosis and treatments.

Dr. James Rutka, Chair of the Department of Surgery at the University of Toronto, co-Chair of the EDS Leadership Panel and medical adviser of the ILC, is in communication with international experts including Dr. Fraser Henderson, who has shared his expertise as a presenter at the ILC & McMaster conference over the past four years.  “It is encouraging to see the level of interest in this area of specialized surgery and among residents.” said Dr. James Rutka.

According to Dr. Fraser Henderson, “Ehlers Danlos Syndrome is a tragically under-diagnosed disorder of immense importance affecting one in every hundred persons of the population, and involving virtually every organ system of the body. It is the lack of diagnosis that results in failure to treat EDS at a young age, and the resulting necessity for more extensive treatments and surgeries when the patient reaches the third or fourth decade. The number of patients suffering from undiagnosed EDS manifest enormous medical-economic impact, substantially adding to the disabled of Canada. It is appropriate that Canadian neurosurgeons, who have been leaders in vascular, pediatric, spinal and epilepsy neurosurgery, have played a central role as the first in the world to establish a national center for EDS in Toronto. The EDS center represents an exciting opportunity to coordinate treatment, as well as scientific studies and economic impact data regarding the EDS population. The Center has drawn attention from the US, where multi-disciplinary specialists with strong Canadian ties have sought to collaborate to advance the cause and knowledge of EDS.”  Dr. Henderson is a world renowned neurosurgeon who is licensed to perform surgeries in the USA and Great Britain.  He has treated more than 1,200 EDS cases. He was mentored by Dr. Phanor Perot, who was trained in Canada by Dr. Wilder Penfield at the Montreal Neurological Institute. Dr. Henderson is leading discussions in the United States and Great Britain on the economic problem that EDS presents if not treated early.

According to Sandy Smeenk, Executive Director, ILC Foundation, “What we have to remember is that in this patient population, hope is what they hold on to most, especially when a neurosurgeon dedicates his or her interest to this area of specialized care.  When they are faced with experiences that takes hope away, hope is what they end up fearing most. Communication and validating the very real symptoms of health issues is critical.  We have to move past specialists saying ‘the pain is not real’ and get to evidence-based diagnostics and treatments.”

The ILC will continue to pursue the vision to provide a health integrated peer resource network, to keep patients informed. Initiatives that the ILC continues to champion are:

  • Advancing peer-to-peer and community based care for children and individuals with EDS and Chronic Pain
  • Expanding the annual ILC EDS CME Conference to include modalities of physiotherapy care and patient wellness focused programming
  • Host the annual conference in other cities and provinces in partnership with other advocacy groups
  • Facilitate the obtainment of upright MRI diagnostic capabilities at major centers beginning in Toronto
  • Supporting EDS and Chronic Pain Research
  • Awareness education through Department of Neurosurgery, School of Nursing, Social Work, College of Physiotherapy

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