Sunday, December 9, 2012

I had brain surgery, what's your excuse? My Review

I Had Brain Surgery, What's Your Excuse?I Had Brain Surgery, What's Your Excuse? by Suzy Becker
My rating: 3 of 5 stars

I found the earlier parts of the book somewhat irksome and it took me a little while to identify with the author, who I initially viewed as a bit melodramatic. However, it is likely that each of us experience health concerns in our own unique ways, and I am one who prefers to remain positive instead of thinking that I’m going to drop down dead at any instant, despite the severity of a disorder.

Another irritation was her lack of knowledge of pituitary disease, which resulted in her flippant rejection of pituitary tumors as being “real tumors” (page 67), simply because some of them can now be removed through the nose due to their location via improved technologies. Within the same calendar year, I underwent a transsphenoidal resection for a pituitary tumor AND a craniotomy for another separate lesion in my temporal lobe. Although neither operation is without risk, I admit that the latter surgery was more challenging in terms of both hospital recovery and surgical risk. Nevertheless, my pituitary disease has proved to be far more problematic and debilitating than the TL lesion, which merely necessitates anti-seizure medication at the present time. I understand that Becker was trying to affiliate with someone who has a tumor “with some odds of being malignant” but her dismissive attitude can be viewed as offensive to those with pituitary tumors. Another point to note is that all tumors have the potential to grow and to cause damage in the brain, and malignancy isn’t the only fact to consider. The location and type of tumor is also important due to the fact that different parts of the brain are used for higher cognitive functioning. Also, some pituitary tumors can grow as large as a plum before a diagnosis has been made, and some may secrete too much or too little of a critical hormone, which can cause a myriad of physical and psychological problems or even death (e.g. cortisol).

That being said, as a whole, the book is very readable and the author deserves credit for portraying such a distressing personal journey with a great deal of frankness and entertainment value. I also appreciate the fact that Becker included a few useful tidbits throughout the narrative, such as information about a clinical paper (page 242) regarding mild brain damage. It is also good to know that by the end of the book she is recovering well and is able to resume her career and many of her other life passions.

I’m not sure if I would recommend the book to anyone I know in particular, but I will certainly find a place on my bookshelf on which to keep it, if not only to remind me of the hilarious title!

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Monday, July 30, 2012

The DHEA Breakthrough: Look younger, live longer, feel better: My Review

The DHEA BreakthroughThe DHEA Breakthrough by Stephen A. Cherniske
My rating: 3 of 5 stars

Although somewhat outdated and a little oversimplified in parts, Stephen Cherniske, does provide some useful information about the therapeutic potential of DHEA when used in conjunction with a healthy lifestyle, such as good nutrition, stress reduction techniques, exercise and supplementation to increase energy and to protect bone and joint health. One must note, however, that many findings are not based on any long-term double blind clinical studies, which Cherniske does objectively declare throughout the book.

It is incorrect that by the age of 50, growth hormone production in most individuals is too low to measure, as stated on page 57. Indeed, recent work demonstrates that some patients around this age actually suffer from adult growth hormone deficiency - due to pituitary gland damage - and thus require prescription supplementation via daily injections (obviously, not all people of this age are shown to be deficient via GH stimulation testing).

I also wonder where the author draws his evidence for stating that women were the primary inventors up until recently. Although he may have used some ethnographic evidence, one cannot apply such a sweeping notion to the whole of the Paleolithic and Mesolithic periods. Indeed, the statement on p 107, “the first tools, it turns out, were not the weapons of men but the implements of women, which clothed, fed, and transported us through the ages.” is not backed up with any anthropological/archaeological credibility. Indeed, the first archaeological evidence we have for tools relate to those created by our predecessor Homo habilis, and not by modern humans at all. Additionally, many experiments and modern analyses conducted on Paleolithic stone tools have shown that many may have been used for butchering purposes. This would suggest a hunting or more male dominated role. Similarly, the subsequent Mesolithic period (following the last Ice Age) shows that modern humans invented a whole new stone tool tradition (called microliths), where tiny tools were adapted and utilized in order to hunt smaller woodland animals (e.g., deer). I could go on but I am veering off course. However, the author really needs to be more precise about what he is referring to.

All that aside, Cherniske has provided some compelling arguments about why one should consider DHEA as an important facet of good health and longevity. I, for one, shall be discussing this issue with my endocrinologist at my next appointment.

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Tuesday, April 10, 2012

Smoking & Health: Just the Facts!

 "Sometimes I just sit in front of a mirror and watch myself inhaling that poison gas. If I was in a concentration camp and someone tried to make me do that, I'd want to kill them."

Everyone knows that smoking is bad for one's health. The intention of this post is not to get on my podium and rant about the contentious issues that have long been smoldering between smokers and non-smokers, and I apologize in advance for any unintentional conflict that may ensue. Instead, I merely aim to present some basic facts about smoking in order to help those wishing to make informed decisions about protecting their health from unsafe exposure.

Is smoking really as dangerous as they say?

A preliminary study in 1950 by epidemiologists Richard Doll and Austin Bradford Hill showed a strong and real association between smoking and lung cancer. The study also indicates that the more one smokes, the higher the risk of developing carcinoma of the lung. Further, the act of smoking appears to cause the same amount of harm whether the smoke is being inhaled or not!

Above the age of 45, the risk of developing [lung cancer] increases in simple proportion with the amount smoked,
and that it may be approximately 50 times as great among those who smoke 25 or more cigarettes a day as among non-smokers.
~ Doll & Hill, 1950, p747

In 1951, the British doctors study began, which charted the smoking habits and health conditions of about 40,000 physicians over a period of about 50 years. The first report appeared in 1954, which confirmed an increase in mortality with the amount smoked, with a significantly increased likelihood of lung cancer death amongst those who smoked 25 or more cigarettes a day. The report also proved that there was an increased risk of death from coronary thrombosis as the amount of cigarettes smoked increased.

The results of many decades’ follow-up were published in a final paper in 2004, which confirmed that the hazards of long term smoking had previously been significantly underestimated. About a half of the people who continue to smoke may ultimately die from their addiction. Typically, cigarette smokers shorten their lives by about 10 years. The risks continue to be high with low tar cigarettes.

On average, cigarette smokers die about 10 years younger
than non-smokers

The risk of being killed by tobacco is doubled with persistent smoking

Other cancers that are linked to smoking are mouth, larynx, oesophagus, kidney, pancreas, uterus and bladder. Studies also suggest that smoking causes heart disease as well as numerous other diseases. The World Health Organisation (WHO) estimate that in 2025 to 2030 there will be 7 million tobacco deaths. Half are likely to die in middle age, between 35 and 69 years old.

Secondhand smoke

Secondhand smoke (also known as passive smoking) can also have serious consequences on the health of children and adults who do not smoke, as it contains many of the same chemicals as the smoke that is breathed in by smokers. Secondhand smoke involves the inhalation of the smoke released either directly from a burning cigarette or from the smoke exhaled by the smoker. It holds a poisonous cocktail of at least 4,000 chemicals (e.g., arsenic used in pesticides, formaldehyde used to embalm dead bodies, and hydrogen cyanide used in chemical weapons), many of which cause a variety of major medical disorders. In fact, because it is created through different temperatures and conditions, the smoke that comes off a cigarette between puffs may even contain more toxins than directly inhaled smoke.

Experts agree that there is no safe level of exposure to secondhand smoke. Even brief contact can increase the risk of heart attack and lung cancer. According the the U.S. Surgeon General, a nonsmoker’s risk of getting heart disease is likely to be increased by 25 to 30 percent by secondhand smoke, and the risk of developing lung cancer in nonsmokers is increased by 20 to 30 percent. Endeavoring to smoke in a separate area from family or ventilating the home are not successful methods at removing these dangers. The only way to protect yourself and your loved ones to is keep your environment smoke-free.

Exposure to secondhand smoke at home or at work increases a nonsmoker’s risk of developing heart disease by 25 to 30 percent
and lung cancer by 20 to 30 percent
~ U.S. Surgeon General’s Report 2006

No if’s, ands, or butts - It’s never too late to burn that habit!

Good news! The follow-up 2004 Britsh doctors study showed that there is decreased risk of dying prematurely when cigarette smoking is stopped…  And the most benefit can be gained by stopping sooner rather than later. If you need help in quitting, you may wish to visit your general physician for appropriate advice and resources or you can refer to some of the links below.

Cessation at age 60, 50, 40, or 30 years gained,
respectively, about 3, 6, 9, or 10 years of life expectancy.
~ Doll et. al., 2004, p1


Thursday, March 15, 2012

The History of Medicine: A Very Short Introduction: My Review

The History of Medicine: A Very Short IntroductionThe History of Medicine: A Very Short Introduction by W.F. Bynum
My rating: 5 of 5 stars

This book was the recommended course textbook for the University of Oxford’s “History of Medicine” introductory program. Don’t be fooled by its tiny size – It’s jam-packed full of well-researched information pertaining to the history of Western medicine, beginning with the ancient Greeks of the fifth century BCE and continuing up to the present day. Bynum methodically breaks down the chronology by way of examining five kinds of medicine: Bedside, Library, Hospital Community and Laboratory, and his assessments are provided in a well-written and instructive manner. I highly recommend this book to anyone who has a starting interest in the subject.

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Wednesday, October 26, 2011

After the Diagnosis: My Review

After the Diagnosis: Transcending Chronic IllnessAfter the Diagnosis: Transcending Chronic Illness by Julian Seifter

My rating: 5 of 5 stars

I loved this book and found it difficult to put down! After the Diagnoses is written by a doctor battling with his own chronic condition (diabetes). He examines the challenges involved with chronic illness and includes thoroughly enjoyable stories pertaining to real life patient case histories. The book is packed with compassion, insight and humor and is a fascinating read. I would recommend this book to anyone who is concerned with chronic illness, including patients and their loved ones, physicians and medical students.

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Saturday, October 1, 2011

Talking Back to Prozac: My Review

Talking Back to ProzacTalking Back to Prozac by Peter R. Breggin

My rating: 4 of 5 stars

A thoroughly enjoyable read, rich with useful information. The book provides a helpful explanation about how antidepressants affect the brain and compares the dangers or “side effects” of these drugs to those of amphetamines. I found the data to be a real eye opener, especially when discussing the dubious protocols that were used for FDA approval, and the lack of pertinent facts that are accessible to medical providers to enable them to make reasonable judgments in their prescribing practices. The book contains many typographical errors though, which slightly spoils its credibility.

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Thursday, June 16, 2011

PNA Webinar: Prolactinoma: A Patient's Perspective

The Pituitary Network Association (PNA) is offering a free webinar relating to prolactinomas. Further information about the event and registration details are as follows:

Title: Prolactinoma: A Patient's Perspective

Date: Thursday, June 23, 2011

Time: 12:00 PM – 1:00 PM PDT


Many pituitary patients have had the frustrating, demoralizing experience of suffering physical and mental health issues - that are then dismissed or improperly treated by doctors who are supposed to show compassion and find the answers. Christina O'Neil-Bourne's story is unique, but it is also similar to that of many patients worldwide. Ms. Bourne is not only talented and beautiful (a former Miss Nevada), she will also present a captivating story we all can learn from!

The Webinar Presenter

Christina O'Neil-Bourne, M.M.E.
Music Teacher
PNA Board Member
Pituitary Patient

Christina O'Neil-Bourne holds both a bachelor's and master's degree in Music Education. She teaches general music and band for the Carson City School District. Christina was named Carson City School District Teacher of the Year 2009, and Carson City Rotary Teacher of the Year 2010. She was awarded the President’s Volunteer Service Award by President George W. Bush in 2003 for her efforts.

Christina is a former Miss Nevada and competed in the Miss America Pageant. She volunteers her time for organizations aimed at bettering the lives of others through education.

In 2005, Christina was diagnosed with a pituitary tumor. For nearly two years, she struggled to find a doctor to help her. She found the PNA website and within months was able to get the medical attention she so desperately needed. Thanks to the PNA, she is now able to live an active and healthy life.

Presentation Description

The webinar Prolactinoma: A Patient’s Perspective, will be hosted by Christina O'Neil-Bourne, M.M.E. She will share the story of her struggle with a prolactinoma, and also provide information on how she has coped with the effects of pituitary disease on her physical appearance, mental health, and relationships.

 •  Introduction: Christina O'Neil-Bourne
 •  Personal story
 •  Discussion of physical, mental, and relationship changes
 •  Discussion of how she coped with these changes
 •  Life today
 •  Advice for others

For those who have not registered,
please reserve your free webinar seat now at:
Space is limited.
After registering you will receive a confirmation email containing information about joining the webinar.

System Requirements:
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server

Macintosh®-based attendees
Required: Mac OS® X 10.4.11 (Tiger®) or newer

Pituitary Network Association (PNA)

Thursday, December 2, 2010

Diabetes Insipidus & Desmopressin Shortage

Desmopressin: Two doses a day keeps the urine away!

I was shocked and disappointed to recently discover that there was a national shortage of desmopressin acetate, a medication commonly used to treat diabetes insipidus (DI). After undergoing transsphenoidal surgery to remove a pituitary tumor this year, pathology revealed that the offending mass had damaged part of my pituitary gland. As a result, I was diagnosed with DI and prescribed desmopressin therapy to manage my symptoms.

What is diabetes insipidus?

Although there is more than one type of DI, for the purpose of this blog post, I am referring specifically to CENTRAL diabetes insipidus, which can result from a head injury, infection, tumor or neurosurgery. DI is a relatively uncommon condition where the patient’s body is unable to retain enough water. This can result in excessive thirst and frequent urination, which is very diluted and pale or colorless instead of being the usual yellow, and does not reduce in volume even if the patient decreases fluid intake. DI symptoms can also include nocturia (the need to get up from sleep at night in order to urinate). Indeed, before being given desmopressin therapy, I often visited the bathroom about three or four times every night…. Certainly not something that is conducive to a good night’s sleep, which is necessary to aid the recovery process. Another one of my symptoms included a strong craving for icy cold water and I literally drank liters of water faster than I could chill it (thank goodness for the bags of ice cubes kept in the freezer). Although the word “diabetes” generally refers to diabetes mellitus (“sugar diabetes”), diabetes insipidus is not specifically related, although both conditions are characterized by extreme thirst and polyuria (excretion of considerable quantities of urine). For this reason, it is sometimes called “water diabetes”.

Some science behind diabetes insipidus

DI generally occurs because of a deficiency of an important antidiuretic hormone called vasopressin (also known as ADH), which is responsible for controlling the release of urine from the kidneys. Vasopressin is made by the hypothalamus in the brain and is stored by the pituitary gland (the master gland of the endocrine system). When the amount of water in the body becomes too low, ADH is released from the pituitary gland – This helps to maintain water by instructing the kidneys to produce less urine (and to instead return water into the bloodstream). When there is insufficient vasopressin, the kidneys are unable to properly conserve water whilst they carry out their function of filtering blood, and too much fluid gets passed from the body in the form of diluted urine. A shortage of vasopressin is usually caused from damage to the hypothalamus or the posterior (back part) of the pituitary gland.

The good news

The good news is that DI can usually be managed effectively with the synthetic antidiuretic hormone replacement therapy of vasopressin (desmopressin, DDAVP), which may be taken in nasal spray (intranasal), tablet (pill), or intravenous (injection) form. The manufactured version of ADH works similarly to natural ADH in your body by preventing the kidneys from producing urine when the level of water in the body is low. When treated, DI does not cause any major problems or reduced life expectancy. However, if fluids aren’t replaced DI can cause severe dehydration and other serious conditions (especially in children, the elderly or in those who have other complicating health issues). It is therefore, important to have your electrolytes monitored to ensure that you are on the correct dose of medication and to carry an adequate supply with you when you are away from home. I have also read on many medical websites that it would be pertinent to wear a medical alert ID bracelet or necklace to inform caregivers of your condition in an emergency situation.

I was prescribed the tablet form of DDAVP, although some patients prefer the nasal spray because it can be more quickly absorbed into the bloodstream. The spray, however, may not be suitable for some patients, such as those who have recently undergone transsphenoidal or sinus surgery, or for those who have a cold, as the nasal passages will likely be congested or blocked. In some cases, patients may switch to the intravenous method (e.g., those who have poor intranasal absorption or because they are undergoing surgery). Since taking desmopressin, my DI symptoms have improved dramatically and I no longer need to lug a large flask of water around with me, as if it were an oxygen tank. I am also able to enjoy a good night’s sleep and don’t seem to experience any significant or bothersome side effects (although I must admit that it is difficult to isolate some of the side effects from some other conditions and medications that I am currently encountering).

The bad news

The bad news is that there currently appears to be a national shortage of the drug desmopressin. The U.S. Food and Drug Administration (FDA) recently announced that such a shortage was due to increased demand and manufacturing delays (See here for more information). Although this shortage is said to specifically relate to the intravenous (IV) form, a few patients also seem to be having trouble obtaining other types of the drug. I contacted my own pharmacy and the person I spoke to appeared oblivious to any shortages. However, I’m not overly confident in the information (or lack thereof) provided by this particular individual. Despite the fact that he had said he was a qualified pharmacist, he’d never actually heard of the medication desmopressin and was unresponsive when I asked if he would check with their supplier for availability of the drug. I did, however, directly contact Ferring Pharmaceuticals who said that desmopressin vials were indeed on back order, although the nasal spray was still available (Ferring do not have any dealings with the tablet form).


Diabetes insipidus can be a serious medical condition and often needs to be treated with desmopressin therapy. It is important that you see your general physician if you think you may have DI. He or she will ask you about your symptoms and carry out the appropriate tests (which should include the water retention test) or refer you to an endocrinologist for further examination. If you have already been diagnosed with DI and are having problems obtaining your medication, you may find it helpful to contact your own pharmacy for additional information. The Pituitary Network Association (PNA) are advocating on behalf of DI patients who are unable to obtain desmopressin and request that those in difficulty contact them accordingly (See PNA link below for more instructions). 


Thursday, November 4, 2010

Pituitary Surgery & Sinus Infection: Why you may want to consult your ENT doctor prior to surgery

The practice of medicine is a thinker’s art, the practice of surgery a plumber’s.” ~ Martin H. Fisher

In my last post, I briefly mentioned some of the complications that may be associated with transsphenoidal surgery (see here for more information). Although not serious, one of the more common concerns involves a sinus infection, which may cause a number of bothersome symptoms such as: facial pressure (in the eyes, nose and cheek area), stuffy nose, headache, fatigue, brain fog and thick nasal discharge. Transsphenoidal means “through the sphenoid sinus” (one of the facial air spaces behind the nose), and so the neurosurgeon essentially inserts his surgical instruments (such as a microscope, endoscope, nasal speculum, and so on) through the nose and sphenoid bone, in order to access and remove the pituitary tumor. This procedure may lead to inflammation of the sinuses, which can ultimately block the nasal passage and inhibit the normal drainage of bacteria. These bacteria multiply and therefore frequently result in a sinus infection.

Treating my sinus infection

Prior to my transsphenoidal surgery this year, I was suitably advised of the risk of sinus infection and told that in such an event I should visit my general practitioner in order to get a prescription for antibiotics. In most cases, where the blockage is caused solely by post-op inflammation, this may be a sufficient means of relieving sinus congestion. I informed my neurosurgeon of the fact that I had already undergone three previous sinus surgeries (the last one only being carried out at the end of 2009) and he assured me that this would not pose any problems. So, when I discovered I had a sinus infection, I readily went to see my GP and completed ten days of Amoxicillin antibiotics, along with almost three boxes of over-the-counter Mucinex (it was only after I’d finished ingesting the second box that I discovered my GP had been remiss in establishing that Mucinex-*D* was the correct form). Unfortunately, I observed no noticeable changes in my symptoms and a follow-up appointment with my neurosurgeon reassured me that due to post-operative inflammation, it would likely take several months for the infection to clear up. My surgeon also recommended sinus rinses (such as the neti pot), and I ardently commenced with the NeilMed sinus rinses on a twice a day basis. For more than a month, I optimistically continued with the rinses, and although some improvement was shown, it seemed minimal.

If you have previously undergone sinus surgery, it may be worthwhile consulting your ENT doctor BEFORE undergoing transsphenoidal surgery.

The ENT doctor

A fellow patient’s wife (and now friend) thoughtfully recommended an Ear, Nose and Throat (ENT) doctor who had experience in cleaning out the material from the sinus cavities following pituitary surgery. I eagerly made an appointment with him and underwent a CT scan, before regrettably discovering that all my previous sinus surgeries had been completely destroyed by my relatively recent transsphenoidal surgery. I was astounded. It seems that as my neurosurgeon entered my sinus cavity, he inadvertently crushed my septum and rearranged the superior turbinates via his speculum. Nasal turbinates are bony prominences that structure the inside of the nose. My neurosurgeon had pushed them outwards, so that they ended up plugging up my sinuses. My ENT doctor therefore explained that I would need a fourth sinus surgery in order to reconstruct all the damage and alleviate my symptoms. Unfortunately, in my case it is likely that I shall need to undergo another transsphenoidal surgery at some point in the future (post-operative blood work suggests there is another microscopic tumor or residual tumor)…. Which will ultimately lead to yet ANOTHER sinus surgery. For now, therefore, my doctor recommended Prednisone steroids and 6 weeks of AMOX-CLAV. I am hoping that I will soon establish when my next pituitary surgery will likely be, so that I can make a suitable decision about when to undergo my next sinus surgery. Hopefully, both my ENT doctor and neurosurgeon can work together in taking care of both the brain and sinus issues associated with my next transsphenoidal surgery. I believe that such a situation should have indeed arisen with my last transsphenoidal surgery, and I am perturbed that my surgeon did not take extra measures to ensure that the structure of my nose facilitated normal function after undergoing such a rigorous procedure.


This post is not intended to criticize my neurosurgeon. After all, his priorities are to remove the pituitary tumor safely and effectively, without causing any serious long-term damage. He is an excellent surgeon, and I am sufficiently confident in his work and hope that he will carry out my next transsphenoidal surgery. A family member used a clever analogy in order to describe his efforts: “He saved the house from burning in the fire, but broke down the front door in the process!”

Further information

Sinus Infection Information from emedicinehealth

Saturday, October 9, 2010

Prolactinoma and Pituitary Surgery

“Most of my prolactinoma patients suffer from poor health” 
~ Nurse practitioner (undisclosed) from a specialist U.S. pituitary clinic.

The treatment of prolactin-secreting pituitary tumors with dopamine agonist therapies is not always as straightforward as originally presumed. Indeed, many patients with prolactinomas feel unwell, despite the fact that related symptoms such as profound fatigue, cognitive defects and malaise are often excluded from the majority of medical publications and websites. Additionally, a number of prolactinoma patients may be intolerant to drug therapy or are concerned about the long-term safety of pharmacotherapy. In fact, some specialists are even beginning to consider surgery as a feasible first line treatment for some prolactinoma patients.

What is a prolactinoma?

A prolactinoma is a noncancerous or benign pituitary tumor (also called an adenoma) that secretes too much prolactin (also referred to as hyperprolactinemia). Prolactinomas are the most common type of pituitary tumor. In women, common symptoms may include: breast milk production (lactation), irregular or total loss of menstrual periods not related to menopause, infertility, and decreased libido. Since men don’t have the full range of signs or symptoms as women and are often too embarrassed to tell their physician about symptoms such as impotence or enlargement of breast tissue, they are more likely to go undiagnosed until the tumor becomes large with higher prolactin levels. In such cases, symptoms can include headache and visual loss due to mass effect on the optic nerves or optic chiasm. For more detailed information about pituitary tumors in general, please refer to my previous posts here and here.

Traditional treatment for prolactinomas

When I was first diagnosed with a prolactin-secreting tumor in 2000 (via blood work and an MRI), my endocrinologist followed the usual protocol in prescribing pharmacotherapy. Surgery was never discussed as an option, and at that time I knew nothing about pituitary disease. Like many prolactinoma patients, I was initially prescribed the more cost-effective dopamine agonist called Parlodel® (also known as bromocriptine), but due to unbearable side effects, I soon switched to cabergoline (Dostinex®). Although I still suffered with some dizziness and nausea, I believed it in my best interest to continue with this treatment, so that the tumor would shrink in size and my prolactin levels would reduce. This worked reasonably well for several years until my health started to decline drastically, resulting in my inability to continue with everyday tasks, such as work, leisure activities or social events. Although I had discussed my poor quality of life with numerous medical professionals over the years, no one really seemed to put the pieces together - If your endocrinologist tells you that the prolactinoma is not the cause of your incapacitating symptoms, then this must surely be correct… Right?  I was given a number of medications to help with chronic symptoms, such as overwhelming fatigue, post-exertional malaise and headaches, and thus began my frantic and desperate search to find the cause of my poor health situation. My eagerness to retrieve some sort of semblance of normal life led to innumerable highs and lows with various consultations and lab tests from infectious disease specialists, neurologists, sleep experts, ear nose and throat surgeons, and many more. All practically led to a dead end and I became increasingly disillusioned with the ability of the medical profession to help me get back on to the road to better health.

Dopamine agonists can sometimes be ineffective
or not tolerated, and side effects to these drugs may be so severe that patients are unable to function.

It wasn’t until I revisited my primary health issues and did some in-depth research on pituitary disease that I realized how uninformed many medical professionals were about pituitary tumors. I recognized that I wasn’t the only one whose life had been hijacked by the seemingly inconspicuous prolactinoma. For example, several PNA (Pituitary Network Association) forum members responded to my question about microprolactinomas, cabergoline and debilitating fatigue, and stated that they or their family members had suffered from a poor quality of life (QOL) before embarking upon transsphenoidal surgery in order to remove the prolactinoma. Also, dopamine agonists can sometimes be ineffective or not tolerated by patients. In some patients, side effects to these drugs are so severe that they are hardly able to function. Major side effects of such drugs include: nausea, dizziness, headache, mental fogginess, fatigue, abdominal pain and more (see here for more information). Further, cabergoline has been associated with cardiac valve disease in people with Parkinson’s disease (see here and here for further details relating to cabergoline and cardiac valve disease ). It is believed that the smaller doses used for hyperprolactinemia are safer, although it is not really known whether the long-term use of such drugs would cause a similar outcome. As a precaution, some doctors follow patients who require long-term treatment with cabergoline with careful echocardiographic evaluation – But not all do. In my own situation, a Doppler study revealed that I already had ”slight and physiologic insufficiency of the mitral and tricuspid valves”. I may never know for sure whether cabergoline was the cause of my valvular heart disease, but it is a serious concern in the decision of whether or not to continue pharmacotherapy. Women who plan to become pregnant are also advised to discontinue dopamine agonists (due to unknown risk of birth defects). Without appropriate treatment, there is the potential for regrowth of the pituitary mass, leading to further problems, particularly due to mass effect. Contrary to what many medical professionals believe (except for pituitary specialists), the fact that the tumor is no longer visible on MRI due to shrinkage, does not mean that it has gone. If a patient still requires medication to treat elevated prolactin levels then the tumor must still be functioning. Some prolactinoma patients may, therefore, wish to consider surgical resection as an alternative treatment.

Several PNA forum members stated that they or their family members had suffered from a poor quality of life before embarking upon transsphenoidal surgery in order to remove the microprolactinoma.

Pituitary surgery

Due to recent developments in modern technology, pituitary surgery is becoming more straightforward (for microadenomas that are <1 cm in size) and increasingly safer. The surgery itself takes approximately an hour to complete, with the average hospital stay only lasting a day. Surgery is done with the intention of removing the tumor, whilst keeping the normal pituitary gland intact.  Most pituitary tumors can be removed by transsphenoidal resection. This entails going through the sphenoid sinus (one of the facial air spaces behind the nose), as opposed to opening the skull to reach the adenoma (craniotomy). The principal approach is the direct transnasal, which involves making an opening in the back wall of the nose so that the sphenoid sinus can be directly entered. In this case, there is no need for postoperative packing, as the surgeon can use the patient’s belly fat to prevent spinal fluid leakage. It is also feasible to make a cut along the front of the nasal septum (transseptal) or via an incision under the lip/upper gum (sublabial), although these procedures would necessitate postoperative packing and have a longer recovery time than the direct endonasal or endoscopic approach used for transnasal surgery. The success rate for patients with microprolactinoma is extremely high and many patients who decide to undergo pituitary surgery feel a great deal better as a consequence.

Some complications associated with surgery

Although many patients have been shown to do well with pituitary resection, success is dependent upon the amount of experience the surgeon has at carrying out pituitary surgical procedures. A surgeon who is well versed in such matters will generally enable a better likelihood of complete tumor removal and minimal complications thereafter. It is important, however, to take some things into consideration, as like all surgical procedures, this operation carries some risks. Obviously, surgery would be more complicated for some macroadenomas that invade the cavernous sinus. The following list is not exhaustive but it provides some of the main points:

·         Post-operative sinus infection: After undergoing three separate sinus surgeries over the past ten years (for chronic sinusitis), I was perturbed to discover that many patients experience sinus infection after pituitary surgery. Common symptoms include: facial discomfort, stuffy nose, headache, fatigue, brain fog and dark nasal discharge. Although some medical professionals prefer to treat the infection with medications such as prescribed antibiotics and over-the-counter Mucinex-D, not all are in agreement. Antibiotics can be problematic, as they tend to destroy good bacteria along with the bad. In my case, I took Amoxicillin for 10 days, along with almost three whole boxes of Mucinex-D, but my infection hadn’t noticeably improved. My neurosurgeon explained that due to post-operative inflammation, it would likely take several months for the infection to completely clear up. He recommended using the neti pot twice a day in order to keep the area clean. Although I didn’t specifically have a neti pot, I immediately started using the NeilMed sinus rinses, which enabled more pressure and positive results. Although I still have an infection - which has persisted since July - my symptoms are gradually improving. If you really can’t bear the thought of nursing the infection for months on end, you may choose to visit a doctor that specializes in cleaning out the material from the sinus cavities after pituitary surgery.

·         Damage to the pituitary gland: Although normally unanticipated, such a situation is more likely to occur with macroadenomas than with microadenomas. In my case, I was told that damage to the gland was most probably caused by the tumor itself (I assume that long-term growth and shrinkage of the tumor eventually led to the injury). In the event that damage to the anterior (or front portion) of the pituitary has occurred, new hormone replacements may be required, including: growth hormone, cortisol and thyroid hormone. Damage to the posterior (or back part) of the pituitary gland may lead to diabetes insipidus (see below).

·         Diabetes insipidus (DI): Diabetes insipidus occurs when there is damage to the posterior part of the pituitary gland, and as a result the kidneys are no longer able to adequately conserve water. This causes the patient to frequently urinate large volumes, which in turn leads to excessive thirst in order to prevent dehydration. DI can be diagnosed through symptom history and laboratory testing, which may include the water retention test. This test can be quite a lengthy undertaking and can take a day or even longer before any conclusions can be made. So, make sure you take some good reading material with you (but no fluids or food!) My own recent experience involved sitting in a comfortable chair and being requested to produce a urine sample and to undergo lab work every hour. Although many post-operative patients experience DI initially after surgery, it is important to be aware of your symptoms during the whole recovery period. For instance, it wasn’t until about six weeks after surgery that I was diagnosed with DI. In most cases, DI is temporary after pituitary surgery, and can be treated with the oral medication, DDAVP (Desmopressin). Your electrolytes should also be monitored to make sure that you are on the right dose.

·         Electrolyte imbalance: The balance of electrolytes in the human body is necessary for normal function of our cells and organs. Electrolytes include: potassium, chloride, sodium, magnesium and bicarbonate. Common symptoms of electrolyte imbalance include: confusion, nausea and vomiting. Electrolyte imbalance can be diagnosed through blood testing and can be treated with electrolyte replacement.

·        Cerebral spinal fluid (CSF) leak: A CSF leak is an abnormal drainage of the fluid that surrounds the brain and spinal cord. Common signs and symptoms include: a positional headache (that is worse when sitting up but better when laying down), a clear watery liquid or bloody discharge from the nose, or a dripping down the back of the throat that leaves a salty taste in the mouth. Depending on the severity of the CSF, it can be resolved with as little as bed rest and a substantial intake of fluids, or as much as repeat surgery. To prevent CSF leakage, a small piece of fat (about 2 cm) is taken from the abdomen and packed into the pituitary cavity.

·         Meningitis: This is a rare complication from pituitary surgery. Common symptoms include: high fever, severe headache, stiff neck, nausea or vomiting, flu-like feeling, confusion and difficulty concentrating. Meningitis is usually a result of CSF leak and is normally treated with antibiotics.

·         Visual loss: The optic chiasm may be damaged during surgery. Although rare, post-operative bleeding may flow into the area around the pituitary gland or into any tumor tissue that remains. This can put pressure on the optic nerves and cause vision loss. In such circumstances, an additional procedure may be needed to remove any blood clots.

·         Stroke: There is a very small chance of damage being caused to the carotid arteries that are located close to the pituitary gland, in an area known as the cavernous sinus. This can cause and interruption of blood supply to the brain, potentially leading to stroke, severe blood loss or even death. Such a situation is, however, highly unlikely when surgery is performed by an experienced surgeon.

·         Tumor regrowth: Even after having surgery, there remains a chance that post-operative blood work may reveal another (microscopic) tumor or residual tumor that the neurosurgeon was unable to see during the procedure. In such cases, the patient may be required to receive further treatments, such as pharmacotherapy, an additional pituitary surgery or radiation therapy. For instance, my post-operative PRL level was above 10 mg/ml and it is continually rising, so with my next MRI we shall be looking out for another adenoma. I have become intolerant to medical therapy, so will inevitably have to undergo a second transsphenoidal surgery at some point in time.

Final comments

While most medical professionals continue to prescribe dopamine agonists for the treatment of prolactinomas, surgery may be a good option for some patients. The list of complications associated with pituitary surgery may seem daunting, but many of these are rare occurrences. As pituitary surgery has evolved technologically over the past few years, in the hands of a specialist it is a minimally invasive and low-risk procedure. Total surgical removal of the tumor results in complete “cure” (or what many doctors prefer to call remission), although this cannot be guaranteed. Success after surgery is based on an individual case, and it is important that you do your own research. Please talk to your pituitary endocrinologist and neurosurgeon for information about the likely outcome of you having surgery.