Archive for the ‘Johns Hopkins Hospital’ Category

Folks,                                                                                                                 October 21, 2009

As you all know, I have had a very traumatic time with dealing with dystonia (onset July 2008) after having an adverse reaction to Ciprofloxicin, in part because of less-than-sensitive physicians. After a lot of misdiagnoses that left me completely disabled, unable to work, care for the kids, often unable to communicate, blind from spasmed eyelids, and in utter misery, a neurological specialist from China diagnosed me with Generalized Idiopathic Dystonia with Chorea and Ballismus. His diagnosis was confirmed at Johns Hopkins and by my current neurologist. In addition, I have complicated hemiplegic migraines which cause a frightening array of neurological symptoms, including semi-coma like states and stroke symptoms. This was a real problem because the migraines overlaid on the dystonia caused increases and decreases in symptoms that confused the diagnosis. The doctors sedated me initially but now, I am getting effective symptomatic control with prescription anti-cholinergic drugs, anti-seizure medication, naturopathy and acupuncture. Life is slowly getting better. I have returned to work part-time at a lesser responsibility position and I cope. 

Attached is a link to a story about a 26 year-old Washington Redskins Cheerleader that received the seasonal flu shot and was afflicted similarly. She was treated at some of the hospitals that I was. Not only does my heart break for her because her career relied on her physical abilities, but also she has had difficulty getting diagnosed. I feel a bit of a kindredness for her. 


I am not saying to avoid Cipro or the flu vaccine but if your instincts are that you are not getting the diagnosis that resonates with you for any health issue, educate yourself, gather your internal strength and keep looking for help. I went to a top hospital and was misdiagnosed and was told by my doctors to stop looking. But, my life and quality of life matter–everyone’s does. I have deep respect for anyone who commits to a life of medicine and endures the lengthy educational process. However, (and it goes against the cultural grain) but I fully recognize the humanness of doctors and know to follow my instincts. Had I done what I was told, I would still be in a bed with incessant movements, blind, mute, semi-paralyzed while my children grew up in other rooms. That is unacceptable. There are many medical options in this country. At one point Jon and flew to Indiana to see a clinical pharmacologist who had experience with hundreds of patients who had adverse Cipro reactions.

Thanks for the ear, 

J. N.

Read Full Post »

After Dr.Arthur Yin Fan saw the patient on May 10, 2009, due to patient’s urgent condition, the doctors in Neuro-Critical Care Unit agreed to start using the herbal medicine –Qing Kai Ling Keli, a revised herbal instant “tea” from the tradtional formula An Gong Niu Huang Wan for coma patient.

The starting date was on May 16, 2009.

The approval is based on Qing Kai Ling is a dietary product(in China, it is a OTC medication), not as the medication.

These doctors are very open mind, but the hospital rule is still very stiff.

Read Full Post »

In the afternoon of May 10,2009, Dr.Arthur Yin Fan, a Chinese medicine doctor, acupuncturist, was invited to see a coma patient in Johns Hopkins University Hospital, Neuro-Critical Care Unit in Baltomore, Maryland. This is based on Dr.Fan’s special background-he was trained extensively in Chinese Medicine and neurology and clinical experience in China’s hospital, also based on colleague’s strong referring.

The patient was severely injured by a car accident, already fell into deep coma 46 days with severe brain hemorragic contusions (multiple lobes),diiffusive axonal injury, currently also with ARDS (acute respiratory distress syndrome) and infections.  Due to the good medical team’s rescuing, patient’s condition is still under the controll.

There were two other CMDs/acupuncturists also seeing this patient in the same time, so we had a meeting with patient’s doctors. Dased on patient’s condition, his doctors accept our suggestion for adding the acupuncture, but they are very hesitate to use Chinese herbal products. And more important, because this is an urgent consultation, all treatments in Chinese medicine or Complementary medicine need the hospital authority’s formal approval.

A few thoughts:

1. Nowadays, more and more Americans, including the conventional MDs, accept acupuncture, but still at the beginning stage. The most famous American hospital-Johns Hopkins University Hospital already has its own licensed acupuncturist, although the acupuncturist currently is only in oncology department. Its Neuro-Critical Care Unit will have its own acupuncturist–currently she is a registered nurse working in this Unit.  She plans to use acupuncture in critical patients.

I hope in near future, the Johns Hopkins University Hospital will have its own Oriental Medicine department, and integrating acupuncture and other Oriental medicine contents into Coventional medicine.

To the patient we saw, the Unit will contact the acupuncturist in oncology department, she may involve in the actual treatments.

2. There are too little information in Chinese herbology in conventional medicine, so how to bridge Chinese herbal therapy into western hospital is still a big challenge, especially for the rescue treatment of patient with critical condition. Too little translation information from China.

3. We suggested use wild American ginsheng and An Gong Niu Huang Wan, a famous herbal product in rescuing patients in Chinese medicine.  However, it might be very difficult to pass the approval process in this hospital.

Read Full Post »