The Answer: If you are on a list for long-term care home, you stay on that list, no matter where you are residing – a hospital, home or retirement facility. According to Anne Marie MacLeod, operations director of the Holland Orthopaedic & Arthritic Centre at Sunnybrook, you do not lose your spot.

“The retirement home is often the next best choice, because they do have some supervision and they are not on their own,” Ms. MacLeod said in an interview. “If you put them in the retirement residence, where they are getting regular meals, help with activities of daily living (such as bathing) and some activity, they can do quite well.”

Your mother is what is called in health care circles as an “alternate level of care” patient, which means the hospital is not the best place for her. Depending on her choice of homes, the wait for a bed could be months or even years.

Her circumstance is faced by thousands of patients every day. According to a Canadian Health Services Research Foundation report, an estimated 7,500 hospital beds, representing 14 per cent of all acute care beds in Canada, have patients in them, awaiting care elsewhere.

From a system perspective, when patients are waiting in hospital beds, other patients have operations postponed, long delays are encountered in emergency and some patients have to be re-routed to other hospitals.

It sounds as if you recognize that the hospital is not the best place for your mother and the most preferred option – a long-term care facility – is not available. A retirement home concerns you because the level of care is not there.

“Two of the main reasons why people are admitted to long term care is cognitive impairment and incontinence of some sort,” said Donna Rubin, chief executive officer of the Ontario Association of Non-Profit Homes and Services for Seniors.

Ms. Rubin said that most retirement homes would not welcome medically complex patients unless the necessary support could be obtained. It is usually purchased through the home or an outside agency, she said, adding, “for a variety of reasons, they are generally not equipped to provide that level of care.”

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The Answer: In 2004, the federal government’s health accord identified joint replacement as an area to improve timely access to care. Since then, patients have been able to see if their provinces are meeting the target of completing the operation within 26 weeks after seeing the surgeon. Though some provinces do a better job of meeting this target than others, queues still vary by surgeon, hospital and city.

As a patient, it sounds as if you are shopping for a joint replacement based on wait time, availability and reputation. According to Anne Marie MacLeod, operations director of the Holland Orthopaedic & Arthritic Centre at Sunnybrook, our institution has a reciprocal agreement with Alberta, which means that any operation you have here would be funded by your provincial health plan. About 2,200 hip and knee replacements are conducted at the hospital each year, with patients staying an average 4.2 days before they go home.

The Holland Centre has a central registry, which means you will be offered the first available appointment with the first available surgeon. Before seeing the surgeon, you will be assessed by an advanced practice physiotherapist who will help you determine whether a replacement is something you want or need now. That physiotherapist will provide a detailed assessment, which includes a review of x-ray images.

“About 30 per cent of patients don’t go on to the surgeon right away,” Ms. MacLeod said in an interview. “A patient may have arthritis but may not be ready to consider joint replacement.”

Indeed, some patients, after undergoing that assessment decide not to go for the replacement right away, opting instead to manage their condition with other methods. Others opt for the first surgery date.

You should ask whether they can schedule those two visits – the advanced practice physiotherapist and surgical consult – during the time you are here to save yourself a trip. After that visit, a preoperative health assessment by your family physician will need to be done closer to the date or surgery. You will then fly for the operation.

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The Answer: I can understand why you want a second opinion for a diagnosis that is very serious and life changing, particularly a diagnosis of multiple system atrophy (MSA).

MSA is a disorder where one or more systems in the body degenerate. Poor balance, rigidity, slowness and difficulty with coordination are typically some of the motor symptoms. Low blood pressure upon standing, constipation, and swallowing troubles are some of the non-motor features that can be seen. There is no laboratory or brain scan test to confirm the actual diagnosis.

A neurologist would not lightly hand out this diagnosis unless there was some degree of certainty, according to Robert TerSteege, who as an information and referral associate for the Parkinson Society Central & Northern Ontario, deals with this question from patients often.

“It is not Parkinson’s per se,” said Mr. TerSteege. “MSA is one of the most common types of atypical Parkinsonism. It may look like Parkinson’s initially.”

According to Dr. Mario Masellis, a Sunnybrook neurologist who specializes in cognitive and movement disorders, “any time we see someone in our clinic and we find features that resemble parkinsonism, we have to do other investigations and medication trials to sort out what we think is the most likely suspect.”

In the case of someone presenting with parkinsonism (symptoms of tremor, rigidity, and slowness), neurologists will typically have patients take a medication called levodopa/carbidopa every day for several weeks as a test: if they respond to the doses, they consider the patient to have Parkinson’s. However, some patients may not tolerate this medication well and people with MSA can fall into this category.

“If you have a good, sustained response and you don’t have atypical features, then the diagnosis is most likely idiopathic Parkinson’s disease,” Dr. Masellis said in an interview. “If the dosage is increased to very high levels and they still don’t have a convincing response, it’s likely due to other conditions.”

One of those other conditions would be MSA. A magnetic resonance image (MRI) of the brain would be done; certain features may support a diagnosis of MSA, but these imaging features are not seen in everyone. It typically is a diagnosis of exclusion; doctors cannot make a definitive diagnosis because a brain biopsy is required and that is not the usual standard of care due to the risks involved.

However, there is one important difference between MSA and actual Parkinson’s, the latter being that patients experience slight declines over many years. With MSA, “there is more rapid progression because of the poor response to Parkinson’s medications and because of other features of the condition including the swallowing difficulties and low blood pressure.”

Dr. Masellis said there are several neurologists who are movement disorders specialists across Canada. Many have a one to two-year wait list for a consultation.

“We don’t lightly give that particular diagnosis,” he said, noting that a comprehensive history and physical exam on several occasions helps make the diagnosis plus medical imaging may be used to support a diagnosis. “If the diagnosis is suspected, they watch it over a period of three to six months to see how the condition evolves.”

While there is always value in getting a second opinion, it also depends on where the diagnosis was made. Most neurologists who make the diagnosis initially would refer to a clinic that specializes in movement disorders.

“Once you get an opinion from one of these clinics, the accuracy of the diagnosis is increased,” said Dr. Masellis. However, “if they are really concerned about the diagnosis or have doubts about the diagnosis, one second opinion should be considered.”

To obtain a second opinion, your sister should go back to her family physician and request a referral to a neurologist who specializes in movement disorders.

The post A Second Opinion for a Life-Changing Diagnosis appeared first on Your Health Matters.

The Answer: You are correct to want to seek a geriatric psychiatrist but typically, they are in short supply and are most likely found in large, urban Canadian cities. There is a very good chance, however, that a general psychiatrist may also do a perfectly good job of treating your symptoms so you may want to consider being open to that possibility, particularly if the wait to see one is long.

“It sounds like the right thing was done,” said Nathan Herrmann, head of the division of geriatric psychiatry at Sunnybrook. “She has seen her physician and had a good medical checkup to rule out any obvious medical problem.” He suggested a geriatric psychiatrist would be ideal, though most psychiatrists would be able to treat your symptoms.

You also raise a very important issue that has been studied since the dawn of psychiatry: Do physical symptoms cause psychiatric disturbances or is it the other way around?

It turns out there it’s a bit of both. There are psychiatric disorders can cause physical symptoms and medical illnesses that can cause psychiatric symptoms. Patients who have suffered a stroke, for example, run a “high risk of developing clinical depression that can be due to biological reasons as well as psychological and social reasons,” Dr. Hermann said in an interview.

Psychiatric disorders, in turn, can cause physical symptoms, often amplifying aches and pains that many may live with but not feel as intensely. There are also medications to treat a physical symptom that cause depression and mania.

“There is a whole category of somatic illnesses that are actually psychiatric disturbances that present with medical complaints,” he said, noting that pain syndromes, neurological symptoms that are a direct manifestation of psychiatric illness.

Sometimes, the psychiatric label is placed on patients when doctors cannot determine the cause of their symptoms.

“Patients with Multiple Sclerosis are notorious for presenting with vague physical complaints that are never diagnosed and thought to be psychiatric in nature,” said Dr. Herrmann.

There is one other group that has both – psychiatric and medical illnesses that have a tendency to accentuate the negative. “People who have coronary artery disease and depression are more likely to drop out of their cardiac rehabilitation,” said Dr. Herrmann, who is also a professor in the department of psychiatry at the University of Toronto.

Typically, most patients go to their primary care physician with symptoms of palpitations, dizziness, fainting, nausea, weakness or vague pains. Some have premature ventricular beats that are within normal limits but because of an underlying psychiatric condition, they are hyper focused on it.

And then there is aging itself when many changes occur: children are leaving home – or coming back when their parents are living on a fixed income. Friends are dying; chronic medical illnesses – diabetes and heart disease for example – are more common.

You had mentioned that you are the child of a Holocaust survivor. There is a huge amount of literature on this very issue and “whether they are truly different is not clear,” said Dr. Herrmann, noting that the parents sometimes have post traumatic stress disorder.

“The children of Holocaust survivors are a different story,” he said. “They can be burdened by their parents guilt and emotional problems. The emotional distance can affect their psychological development.”

However, it would be incorrect to assume, he said, that there is a specific symptoms or cluster of symptoms that is associated with being a child of a Holocaust survivor.

“What a psychiatrist would do is include that knowledge in her information and how it might relate,” said Dr. Herrmann.

I suggest you return to your family physician and request a consultation with a geriatric psychiatrist and if not possible, a general psychiatrist who can treat your problem.

If you go to this link https://sunnybrook.ca/integration/# and search under “geriatric psychiatry” in the clinical focus section, you will find a number of Sunnybrook psychiatrists who specialize in the area who may be taking referrals.

The post The link between physical symptoms and psychiatric disturbances appeared first on Your Health Matters.

The Answer: No professional organization in Canada or the United States recommends testing for the BRCA1 or BRCA2 genetic mutations based solely on ancestry. However, Jewish women are believed to be more likely to test positive for one of those two genetic mutations, compared to women tested at random. Consequently, testing is often recommended for Jewish women with family histories of cancer.

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The Question: I had radiation and chemo at Sunnybrook three years ago. I want my medical records from the cancer treatment and I am not sure how to go about this.

The Answer: You would think, as a patient, that your information is all in one file. But in fact, some physicians run their practice independently, maintaining their own records. Consequently, information contained in the hospital record may differ from that record maintained by the physician.

Though the information in your medical record belongs to you, the doctor and hospital must keep the original. The physician and hospital also bear the responsibility for keeping it confidential and not allowing any unauthorized use.

Ask for the hospital record. The records department will review the request and the chart. If any information is missing, a request for information will be made from the physician’s office.

Each month, 1,200 to 1,500 requests for medical records are made at Sunnybrook. Current patients can request their information over the telephone or fax, according to Sarina Cheng, director of health data resources, eHealth strategies and operations at Sunnybrook. Requested records are photocopied and provided to patients; soon release of patient information will be provided on a CD.

Patients can also access their hospital record information using MyChart, an online personal health record service, provided they have registered for it – saving travel time to pick up hard copies.  Though chemotherapy reports are not currently available in MyChart, they can be obtained by making a request to health records.

“With MyChart, patients can access hospital record information and share with multiple care providers and personal health participants electronically. Patients can access their information quicker,” said Ms. Cheng. “They can share their information and always have it accessible to them. That satisfies them.”

Another technique is to form the habit of asking for a copy of the record every time you have a health encounter as you can build your own record as you go, saving yourself some money in the end.

At Sunnybrook, patients are provided with a few options to access their personal health information:

• In Person: Patients can come to Sunnybrook’s health records office and make the request.

• By Fax: Patients can download the Authorization for Release of Personal Health Information form through this link https://sunnybrook.ca/content/?page=care-stay-priv-hr. The completed form along with 2 pieces of government issued photo ID can be faxed to 416-480-6123 for processing. By law, hospitals have 30 days to complete this type of request. There is $30, non-refundable administrative fee for the processing of each request, which includes copies of the first 20 pages, plus 25 cents per page thereafter.

• MyChart, https://www.mychart.ca  allows access to more than 1.4 million hospital records in the electronic patient record system at no cost. It has been available to all Sunnybrook patients are since early 2006 and can be accessed anywhere by searching on the Internet.

“Patients can have online access from home to their own medical record – the patient has huge control,” said Ms. Cheng. “If they share access with their physicians, they can identify a family doctor, that physician can see their lab work, emergency notes and medication.”

There are also sections where patients are able to enter their own information, such as symptoms, other personal health appointments such as exercise plans, community services such as nurse care visits, add supplements, diet, family medical history etc. As well, they can invite others to join, including dieticians, physiotherapists and even personal fitness trainers who wish to stay connected to your health status.

Here is what I think you should do: Go to the Odette Cancer Cent which has a health records department or fax Sunnybrook the authorization for release of information form. If in person, please visit the hospital’s Release of Information service desk (located in T2-201) and request copies of your information. We now also have an express desk located in the M-wing main entrance.

The authorization for release of information form is available online and can be downloaded through this link https://sunnybrook.ca/content/?page=care-stay-priv-hr. and fax it to health records at 416-480-4639 with photocopies of two pieces of photo ID for processing. You may also want to explore joining MyChart for ease of access to your record.

The post Three years out of cancer treatment, a patient seeks medical records appeared first on Your Health Matters.

The Answer: I am glad to hear a diagnosis is made, an operation booked and you are in the cancer care system. As you know, the early pathology work you already had done – a biopsy – led to a definitive diagnosis of uterine cancer. Now you are waiting for the second part of your pathology to take place, which will tell you, among other things, the size, grade and invasiveness of the tumour. Only after the pathology report can oncologists develop a treatment plan. The pathology and the treatment plan are usually provided after you have healed from surgery – three to four weeks after your operation.

“We make sure by the time the patient comes (for a post operative visit), this report will be available to the physician so an intelligent decision can be made about treatment,” said Mahmoud Khalifa, who is joint chief of anatomic pathology at Sunnybrook Health Sciences Centre and University Health Network.

At Odette Cancer Centre, patients are booked to receive the results of their pathology report at the same time as their treatment plan – about three to four weeks after surgery. This is done deliberately: oncologists want to ensure that when patients learn the stage of their cancer, they also hear the plan to treat it. You can imagine how anxiety provoking it would be to only hear you have advanced cancer, but not to have a plan.

“What we don’t want is for a patient to come for follow up and the pathology is not available,” Dr. Khalifa said in an interview. “These patients know they have cancer. The only question is whether they are going to need further treatment.”

Now, as a cancer patient, you raise an interesting question about whether the pathology report could be provided sooner. In a public health care system, there is a fixed amount of funding and so administrators have to determine where best to spend it. Ultimately, it comes down to determining whether spending would change the treatment plan – or patient outcome.

“Patients really want to know whether they have cancer or not. There is an element of anxiety so we need to get this news out as soon as possible,” said Dr. Khalifa, whose department at Sunnybrook sees 70,000 cases a year, about three-quarters involving cancer diagnoses.

For example, a significant amount of funding is poured into pathology at the front end – typically making the initial diagnosis of cancer in the form of a biopsy result. In addition, anything that would change the treatment outcome is also fast-tracked. But in cases where earlier knowledge would not translate into different care or compromise an outcome, it is timed to take place when the adjuvant treatment – chemotherapy and radiation – would potentially start, if even needed, which is your case.

As you know, cancer has four stages, with the first one being the earliest and stage four being the most advanced, having metastasized or spread to other organs. With uterine cancer, there are early, obvious symptoms such as bleeding, which make earlier diagnosis more likely than say, ovarian cancer where the symptoms can benon-specific.

If the uterine tumor has deeply penetrated the uterine wall, patients may need radiation treatment. If the tumor has invaded the lymph nodes, patients may require chemotherapy, according to Dr. Khalifa, professor at University’s Department of Laboratory Medicine and Pathobiology. Sometimes patients require both forms of treatment.

So, in answer to your question, you will receive the results of your pathology plus your adjuvant treatment plan at your scheduled appointment after surgery. I wish you all the best.

The post Diagnosed with Cancer and Waiting for Pathology appeared first on Your Health Matters.

The Answer: I am sorry to hear that your wife’s colorectal cancer has spread. And I can understand why you are looking at different options outside of standard chemotherapy. Sunnybrook has been offering the DEBIRI treatment (intra-arterial infusion of irinotecan-loaded drug-eluting beads) for about two years and while it extends survival significantly, it is not a cure. On average, the Sunnybrook team performs this procedure once or twice a month.

Eligible patients are those with cancer that has spread to the liver that is not surgically operable and has not responded to at least two standard systemic chemotherapy drugs. Typically, these patients have diffuse tumours on their liver – sometimes in a rain shower pattern – making surgical removal impossible.

With DEBIRI, also known as liver chemoembolization, beads are threaded through a small catheter line from the blood vessel into the artery, located in the groin, that supplies blood to the liver. These tiny beads contain a very highly concentrated dose of the chemotherapy drug irinotecan. With this treatment, the blood vessels are partly blocked with the beads, starving the tumor of its blood supply, while concentrating chemotherapy in high doses to the tumours. This devastating “one-two punch” slows, and in some cases, even halts tumor growth.

A small, single institution phase III of a clinical trial of 74 patients randomly assigned to receive DEBIRI (36) versus systemic irinotecan, fluorouracil and leucovorin (FOLFIRI, 38), found a survival advantage for patients who use the treatment, compared to those who use standard intravenous therapy, according to a 2012 study published in the journal, Anticancer Research. The study, while limited, demonstrates the potential DEBIRI has in the treatment of metastatic colorectal cancer.

“It is hard for me to say whether she is a candidate or not without more details,” said Calvin Law, head of the cancer surgery program at Sunnybrook. “We really think that DEBIRI should be examined on a case-by-case basis.”

A team that includes a radiologist, medical oncologist, radiation oncologist and surgical oncologist select what patients would benefit from the treatment.

“If we all agree,” said Dr. Law, “then the interventional radiologist will look at the picture and tell us if they can put the beads in the right place.”

If the treatment is recommended, it takes place in two sessions, usually weeks apart. Each time, the patient is in hospital for two nights and three days. Return to work is widely variable – from as low to a week to a month or longer.

“Typically, there is more than one treatment and occasionally, there are more than three treatments,” said Dr. Law.

The post When Cancer Spreads and Standard Therapy No Longer Works appeared first on Your Health Matters.

The Answer: You are a very well informed patient and yet, as you have found out, the more you dig into this complex issue, there are even more questions that require answers. A Google search on pulmonary embolism yielded more than 4.9 million hits. As you know, a pulmonary embolism occurs when one or more arteries in your lungs are blocked, typically from a blood clot that has travelled from another part of your body, almost always the legs. It is a complication of deep vein thrombosis. Signs and symptoms include unexplained shortness of breath, a cough that may bring up sputum laced with blood, in addition to chest pain. It must be treated quickly to be lifesaving.

In your case, it is quite common to feel discomfort in your chest after a pulmonary embolism. The amount of discomfort varies from patient to patient, according to Bill Geerts, a thrombosis specialist at Sunnybrook.

“There is actually an entity that we call ‘post-PE syndrome’ which is not well described in any medical literature but that all thrombosis specialists are familiar with,” Dr. Geerts wrote in an email. “It’s usually mild and there is no specific treatment for it, just time and exercise.”

Though your dose of warfarin – 12.5 mgs and 15 mgs – is higher than average, according to Dr. Geerts, it is well within the range of doses that thrombosis specialists would see patients prescribed.

“The actual dose of warfarin is not relevant – the only measure that counts is the INR,” said Dr. Geerts.

[The INR is a test of blood clotting, which requires a small tube of blood from a vein – approximately 4 milliliters – used primarily to monitor warfarin therapy.]

The target INR for pulmonary embolism is 2.0-3.0. Put another way, an INR of 1.8 is not acceptable, according to Dr. Geerts.

You also seemed worried about being at risk of a second pulmonary embolism. That is only the case if you were not taking anticoagulants, in fact, you are virtually at “zero risk” of a recurrent episode so long as you are taking the medication and your INR is in the target range. Even if you had a second pulmonary embolism, there is nothing to suggest you would not survive again, as you had suggested, said Dr. Geerts.

It sounds as if you have already spoken to your general practitioner about the chest pain and had a heart problem ruled out. However, you know yourself better than any one. If your symptoms became more acute and worrisome, I hope you would seek immediate treatment if you felt it was a medical emergency.

In the meantime, you should think about seeing a thrombosis specialist. You will want to discuss the duration of your anticoagulation therapy, make sure that the specific anticoagulant you are on is the best one for you and answer any other questions you may have.

The post Pulmonary embolism and chest pain appeared first on Your Health Matters.

The Answer: I sense you are exasperated and justifiably so – it is difficult to know where to turn, especially when you feel you have gone through every available avenue to address your wife’s medical issue. According to Robin Richards, Sunnybrook’s surgeon-in-chief emeritus, in about 15 to 20 per cent of cases, symptoms persist after rotator cuff surgery. “Nothing we do is 100 per cent successful,” notes Dr. Richards, an orthopedic surgeon who specializes in shoulders. “There is a significant percentage who don’t get better.”

The rotator cuff is a thick tendon that surrounds the upper end of your arm bone, medically referred to as the humerus. Its job is to initiate movements of the shoulder and to hold the ball in the socket of your shoulder, allowing you to use the big muscles in your arms. It can be damaged through repetitive use, age-related changes and in rare cases, trauma. When damaged, patients feel pain from the swollen, inflamed tendon, which can be particularly intense at night or when lifting overhead.

The most common need for surgery is to decompress painful chronic rotator cuff tendonopathy, a wear and tear process or to repair a tear of the cuff. “The tendon can become thin and develop a tear,” said Dr. Richards. “When a patient doesn’t get better after surgery you have to ask: ‘Did the repair fall apart?’”

When surgery is unsuccessful, the surgeon will look first for complications such as infection and then try to determine if the surgery was done for the correct diagnosis, if the decompression of the cuff was adequate and if the cuff repair healed. The surgeon will do a physical examination, take a medical history and order investigational procedures such as an MRI and X-rays. From there, the surgeon will form a diagnosis and determine whether a revision surgery is likely to work.

“If the MRI shows a re-tear, the repair had failed, then we would think about surgery again,” according to Richard Holtby, an orthopedic and shoulder surgeon at Holland Orthopaedic & Arthritic Centre, which is part of Sunnybrook. “Usually the MRI accurately diagnoses a retear but it is not perfect and sometimes the only way to know if a repair failed is to look at it again surgically.”

Typically, surgeons will do a revision if it is medically indicated.

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