Using a so-called femtosecond laser, her device emits ultrafast light pulses that don't have enough time to damage surrounding tissue. While femtosecond lasers themselves aren't exactly new—they're standard gear for laser eye surgery—Ben-Yakar is the first to figure out how to make one small enough to be used inside a person. Her blaster fits in a 15-mm surgical probe that shoots the laser's light through a crystal fiber (similar to a fiber-optic strand).
Paired with another fiber for microimaging, it lets surgeons work through a small incision and burn off individual cells in places like the pituitary gland (normally accessed rather awkwardly through the nose) and the spinal cord, which is hidden behind bundles of sensitive neurons and axons.
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Saturday, November 29, 2008
Rocket Scientist's Laser Scalpel Targets Individual Cells
Rocket Scientist's Laser Scalpel Targets Individual Cells
Saturday, November 22, 2008
New technology for the removal of pituitary and brain tumors
According to Advocate Lutheran General Hospital, "[t]he intra-operative Magnetic Resonance Imaging (MRI) system improves the accuracy of brain surgery for children and adults by providing real-time, high-quality images of the brain before, during and after surgery." Due to the shift of the brain and other structures during surgery, the tumor may not be exactly where the pre-surgical MRI showed it. This technology allows the surgeons to check during and post-surgery for accurate and adequate removal of a tumor.
Cushing's patients are notorious for having hard-to-find-and-remove pituitary tumors. Factor in hyperplasia and extension into the adjacent sella and sinus areas, and the problem is magnified. This technology is helping surgeons remove pituitary tumors with a better outcome because surgeons can view detailed, three-dimensional images of the brain in real time during an operation .
The video below tells about one patient's story.
To read more:
Medtronic
Advocate Lutheran General Hospital
University of California, Irvine
Cushing's patients are notorious for having hard-to-find-and-remove pituitary tumors. Factor in hyperplasia and extension into the adjacent sella and sinus areas, and the problem is magnified. This technology is helping surgeons remove pituitary tumors with a better outcome because surgeons can view detailed, three-dimensional images of the brain in real time during an operation .
The video below tells about one patient's story.
To read more:
Medtronic
Advocate Lutheran General Hospital
University of California, Irvine
Saturday, November 1, 2008
Parathyroid glands removed without incision or scar
"Surgeons at the University of Illinois Medical Center at Chicago have performed an innovative robotic-assisted procedure to remove parathyroid glands without an incision or scar on the patient's neck."To read more: Robotic Assisted Neck Surgery Spares Incision, Scar
Friday, October 17, 2008
MDA Surgeons Advocate Early Surgical Treatment for Elderly Patients with Hyperactive Parathyroid Gland
Elderly patients with an overactive parathyroid gland (hyperparathyroidism) should receive surgical treatment before they begin to exhibit the advanced objective consequences of the disease, such as osteoporosis (brittle or fragile bones caused by a loss of calcium deposition in underlying bone), according to surgeons from M. D. Anderson Cancer Center in Houston, TX...To read more......Hyperparathyroidism occurs when the parathyroid glands produce excessive amounts of parathyroid hormone and lose the ability to autoregulate. The result is a high serum calcium level. The parathyroid glands reside in the front of the neck behind the thyroid gland and they secrete parathyroid hormone (PTH), which regulates the amount of calcium to be deposited in bones and blood.
Approximately 100,000 new cases of hyperparathyroidism are diagnosed each year. Hyperparathyroidism is more common in the elderly, and particularly in women. The disease affects nearly 13 percent of women over the age of 65. It can be diagnosed on the basis of results from from routine blood sample. Serum calcium and intact parathyroid hormone tests are not expensive.
Tuesday, September 9, 2008
A Cushie Champion: Dr. Ian McCutcheon (M. D. Anderson)
Dr. McCutcheon has helped countless Cushing's patients with anything from a second opinion on an MRI to transsphenoidal surgery to remove a pituitary tumor. He is a champion in many ways to the Cushie community for his relentless endeavors in awareness and treatment for Cushing's. In the following article, published on the PNA site, he continues the same:
Pituitary Tumors in Women
by Ian E. McCutcheon, M.D., FRCSC
Professor of Neurosurgery
The University of Texas M.D. Anderson Cancer Center
by Ian E. McCutcheon, M.D., FRCSC
Professor of Neurosurgery
The University of Texas M.D. Anderson Cancer Center
Pituitary tumors represent a special clinical problem in women. Although their diagnosis is relatively straight forward once the suspicion has been raised, patients with pituitary tumors can go undiagnosed for years in spite of symptoms that should raise such suspicion and lead to definitive testing. This article seeks to highlight the symptoms that such tumors produce, to describe the best way of confirming the presence of the tumor, and the most appropriate ways of treating such lesions.
Diagnosis
Pituitary tumors can cause symptoms by either of two methods. In some, they compress the adjacent normal pituitary gland, and thereby impair hormone secretion and produce a lack of one or more of the hormones produced by the gland. Alternatively, the tumor can itself produce hormones in excess, leading to high levels of hormones, each of which produces a specific clinical syndrome. Others symptoms of significance include visual loss, caused by a tumor large enough to reach from the pituitary to the optic chiasm running above the sella. Typically a tumor must be greater than 1.5 cm in diameter to create loss of vision, and many patients with tumors larger than that have intact vision. In addition, headache is commonly seen in patients with pituitary tumors. In some of them the tumor causes the headache by local dural compression or infiltration. In many, however, headache represents a second, unrelated issue which will not necessarily clear if the tumor is eliminated.
The most common pituitary tumor is the "clinically nonfunctional" adenoma, representing 40-45% of cases. Such tumors make no clinically significant hormone and are usually found incidentally, by virtue of low hormone levels they produce, or because of visual loss when a tumor is relatively large. The second most common is the prolactin producing tumor "prolactinoma" representing 30% of cases. These are the tumors most likely to be seen in a gynecological practice, given their impact on reproductive function, the menstrual cycle, and the libido. Prolactinomas tend to be relatively small and to exert their effects by virtue of the raising of serum prolactin levels that accompanies them. To be secure in the diagnosis of prolactinoma, a patient should have a prolactin >100 ng/ml. Because certain drugs (e.g., Respirtol or other phenothiazines) raise prolactin levels to a similar degree, they must be excluded by history before concluding that the patient with a high prolactin level has a pituitary tumor. Patients with lower levels of prolactin that are still super normal (i.e., >25 ng/ml) may have either a prolactinoma or a nonfunctional tumor exerting "stalk effect", namely a distortion of the gland from local pressure which blocks the tonic hypothalamic inhibition of prolactin secretion and thus allows prolactin levels to rise. The distinction is important because prolactin excess caused by tumor secretion is treated in the majority of patients with Dopamine agonist therapy, whereas prolactin elevation due to stalk effect suggests that such therapy will be ineffective. The distinction is not always an easy one and an endocrinologist should be involved for any patient suspected of having a pituitary tumor. They can offer help in deciding whether a tumor is nonfunctional (with stalk effect) versus a true prolactinoma, and can in addition perform hormonal screening for all areas of pituitary function. It is not sufficient simply to check prolactin and perhaps thyroid hormone levels, as is often done in women in whom a pituitary tumor is suspected. A full hormone panel should be drawn and the new onsets in interpreting this make involvement of an endocrinologist very helpful.
Other tumor types include those which secrete growth hormone (causing acromegaly), those secreting ACTH (causing Cushing's disease), and those rare tumors secreting TSH (producing a hyperthyroid state commonly misdiagnosed as primary hyperthyroidism and often treated inappropriately with thyroid ablation). Three quarters of all pituitary tumors will, however, be either nonfunctional or prolactin secreting adenomas, and understanding of which is vital in any gynecological practice.
The hormone system most vulnerable to extrinsic pressure is the pituitary gonadal axis. Minor disturbances of the pulsatile rhythms of FSH or LH production can affect fertility and libido and can disrupt the menstrual cycle. Thus, any pituitary tumor can cause infertility, and the search for such tumors should be part of any infertility workup, particularly when low levels of FSH and/or LH can be shown. Low levels of prolactin are not considered to be significant or to require intervention. High levels of prolactin will cause galactorrhea, which can be the presenting symptom of this condition. Here, too, menstrual irregularity is common as are infertility and loss of libido. If the excess production of prolactin is prolonged, osteoporosis becomes an issue as well. Thus, endocrinologists will typically perform bone density testing on patients with incompletely treated prolactinomas and intervene pharmacologically if density is shown to be insufficient.
Psychosocial Aspects
Patients with pituitary tumors routinely express symptoms consistent with psychological disruption and with impaired quality of life. The most profoundly affected are those with Cushing's disease in whom excess cortisol can produce a host of psychological symptoms ranging from moderate depression to frank mania. Psychiatric disorders per se are not more common in patients with pituitary tumors than in the general population. Nonetheless, their often overwhelming sense of malaise is expressed either as a direct emotional dysphoria or is somaticized into any number of physical symptoms. These include (but are not limited to) headache, tenderness, tingling or numbness, memory loss, and impairment of cognition. Depression, anxiety, behavioral disturbance, and personality change may reflect the adjustments that pituitary tumor patients must make to deal with the physical symptoms caused by alterations in the various hormonal axes affected by the tumor. However, it is equally possible (although at this time unprovable) that the pituitary tumor may itself not be the direct cause of the emotional or cognitive changes experienced by the patient. It is entirely possible or even likely that disruption within the hypothalamus on a molecular rather and structural level may trigger the formation of the pituitary tumor and concomitantly may directly produce the psychosocial disruption the patient feels. Connections from the hypothalamus to other limbic structures (e.g. prefrontal cortex) may cause alternations in personality and mood. Intervention for this constellation of psychological disruption is feasible but may require intervention by
psychiatrists in those most profoundly affected. Generally treatment begins with optimization of hormone levels but may in addition require drug therapy including antidepressants. Psychological testing can yield a detailed profile of the specific areas of impairment and suggest compensatory strategies. In particular, pituitary tumor patients complainof depression, fatigue, and poor memory function. These are real symptoms of physical disease, but the treatment for them is complex and often requires multidisciplinary input.
Radiology
The best way of diagnosing pituitary disease is radiographically by an MRI focused on the sella. CT scan has insufficient resolution to show small tumors and does not confer the anatomic detail found in MRI. A standard MRI of the brain is also inadequate for showing pituitary disease, as it may result in the pituitary being shown by only 1 or 2 slices that are too thick and too spaced to show a pituitary lesion properly. Therefore, if a pituitary tumor is suspected, it is wise to order an MRI of the sella upfront to avoid having to send the patient back for repeat scanning.
Treatment
Once a diagnosis has been made or is at least entertained with a strong level of suspicion, the referral to an endocrinologist and a neurosurgeon is advisable. Even a "simple" prolactinoma may have ramifications on the pituitary - an organ axis that are not immediately obvious from the gynecological perspective. In our practice all patients referred for pituitary tumors are seen by both the endocrinologist and the neurosurgeon to provide opinions from a medical and surgical perspective respectively. A further word of caution is important here. Most endocrinologists can perform an effective workup of a pituitary tumor and make appropriate diagnosis and, where appropriate, medical treatment recommendations from that workup. However, within the neurosurgical community a wide spectrum of expertise in pituitary disorders exists. Patients with resources tend to consult a relatively small cadre of nationally prominent subspecialists in this area while many neurosurgeons with the theoretical ability to do pituitary surgery actually see only 1 or 2 patients per year, an insufficient number to develop true facility with such procedures. Statistics have been compiled that show true expertise (as judged by success in achieving cure and in avoiding complications) comes only when a surgeon has completed 500 or more transsphenoidal surgeries. Thus, for optimal care, referral to a known center of excellence is advisable. The referral practice at The University of Texas MD Anderson Cancer Center is the largest within the state of Texas or any neighboring state.
Medical therapy generally consists of replacing hormones when levels are low or of suppressing them when they are high. Prolactinomas are generally treated with medical therapy as the first line approach due to the fairly good success achievable with Dopamine agonists such as Bromocriptine (Parlodel) or Cabergoline (Dostinex). These drugs will not be effective in patients with pituitary tumor types other than prolactinoma, but in the prolactinoma category they do have excellent success in lowering prolactin levels and reasonable (but lesser) success in causing tumor shrinkage. Patients with prolactinomas come to surgery for several reasons. In some, the drug is ineffective or produces debilitating side effects, typically gastrointestinal in nature. In others, drug therapy has been successful but not completely so, and debulking the tumor is felt to be helpful in allowing medical therapy a better chance to work on a smaller volume of disease. Finally, a number of patients present for surgery because of what one might term "medication fatigue," namely a desire to free themselves of the necessity for taking what may amount to lifelong medication requirement. For patients with Cushing's disease or acromegaly, the first line treatment is almost always surgical; and for patients with nonfunctional tumors causing hypopituitarism or large enough to endanger vision by compressing the optic chiasm, surgery is also the first line choice. Radiation therapy is used mainly as a backup for tumors that have been treated by other means and yet have recurred, are that small group of invasive, hormonally functional tumors that surgery cannot cure and which have proven refractory to medical therapy.
Transsphenoidal surgery is the most common method of removing a pituitary tumor today. Over 95% of pituitary tumors will prove amendable to that approach, of which there are several variations (endonasal versus sublabial, endoscopic versus microscopic, etc.). The transsphenoidal approach is popular because it provides a relatively direct route of access that travels along the septum of the nose, through the sphenoid sinus, to the sella just behind it. When properly performed, this method avoids the brain altogether and is a very safe procedure. Craniotomy is only necessary for tumors that show special features such as persistent recurrence in the
suprasellar space, lateral extension in the cavernous sinus or around the supraclinoid carotid artery, or for tumors too large to be dealt with by transsphenoidal surgery. Because the brain must be retracted somewhat to expose the sella during a craniotomy for pituitary tumor, the
transsphenoidal approach tends to be safer.
Summary of Important Points
Diagnosis
Pituitary tumors can cause symptoms by either of two methods. In some, they compress the adjacent normal pituitary gland, and thereby impair hormone secretion and produce a lack of one or more of the hormones produced by the gland. Alternatively, the tumor can itself produce hormones in excess, leading to high levels of hormones, each of which produces a specific clinical syndrome. Others symptoms of significance include visual loss, caused by a tumor large enough to reach from the pituitary to the optic chiasm running above the sella. Typically a tumor must be greater than 1.5 cm in diameter to create loss of vision, and many patients with tumors larger than that have intact vision. In addition, headache is commonly seen in patients with pituitary tumors. In some of them the tumor causes the headache by local dural compression or infiltration. In many, however, headache represents a second, unrelated issue which will not necessarily clear if the tumor is eliminated.
The most common pituitary tumor is the "clinically nonfunctional" adenoma, representing 40-45% of cases. Such tumors make no clinically significant hormone and are usually found incidentally, by virtue of low hormone levels they produce, or because of visual loss when a tumor is relatively large. The second most common is the prolactin producing tumor "prolactinoma" representing 30% of cases. These are the tumors most likely to be seen in a gynecological practice, given their impact on reproductive function, the menstrual cycle, and the libido. Prolactinomas tend to be relatively small and to exert their effects by virtue of the raising of serum prolactin levels that accompanies them. To be secure in the diagnosis of prolactinoma, a patient should have a prolactin >100 ng/ml. Because certain drugs (e.g., Respirtol or other phenothiazines) raise prolactin levels to a similar degree, they must be excluded by history before concluding that the patient with a high prolactin level has a pituitary tumor. Patients with lower levels of prolactin that are still super normal (i.e., >25 ng/ml) may have either a prolactinoma or a nonfunctional tumor exerting "stalk effect", namely a distortion of the gland from local pressure which blocks the tonic hypothalamic inhibition of prolactin secretion and thus allows prolactin levels to rise. The distinction is important because prolactin excess caused by tumor secretion is treated in the majority of patients with Dopamine agonist therapy, whereas prolactin elevation due to stalk effect suggests that such therapy will be ineffective. The distinction is not always an easy one and an endocrinologist should be involved for any patient suspected of having a pituitary tumor. They can offer help in deciding whether a tumor is nonfunctional (with stalk effect) versus a true prolactinoma, and can in addition perform hormonal screening for all areas of pituitary function. It is not sufficient simply to check prolactin and perhaps thyroid hormone levels, as is often done in women in whom a pituitary tumor is suspected. A full hormone panel should be drawn and the new onsets in interpreting this make involvement of an endocrinologist very helpful.
Other tumor types include those which secrete growth hormone (causing acromegaly), those secreting ACTH (causing Cushing's disease), and those rare tumors secreting TSH (producing a hyperthyroid state commonly misdiagnosed as primary hyperthyroidism and often treated inappropriately with thyroid ablation). Three quarters of all pituitary tumors will, however, be either nonfunctional or prolactin secreting adenomas, and understanding of which is vital in any gynecological practice.
The hormone system most vulnerable to extrinsic pressure is the pituitary gonadal axis. Minor disturbances of the pulsatile rhythms of FSH or LH production can affect fertility and libido and can disrupt the menstrual cycle. Thus, any pituitary tumor can cause infertility, and the search for such tumors should be part of any infertility workup, particularly when low levels of FSH and/or LH can be shown. Low levels of prolactin are not considered to be significant or to require intervention. High levels of prolactin will cause galactorrhea, which can be the presenting symptom of this condition. Here, too, menstrual irregularity is common as are infertility and loss of libido. If the excess production of prolactin is prolonged, osteoporosis becomes an issue as well. Thus, endocrinologists will typically perform bone density testing on patients with incompletely treated prolactinomas and intervene pharmacologically if density is shown to be insufficient.
Psychosocial Aspects
Patients with pituitary tumors routinely express symptoms consistent with psychological disruption and with impaired quality of life. The most profoundly affected are those with Cushing's disease in whom excess cortisol can produce a host of psychological symptoms ranging from moderate depression to frank mania. Psychiatric disorders per se are not more common in patients with pituitary tumors than in the general population. Nonetheless, their often overwhelming sense of malaise is expressed either as a direct emotional dysphoria or is somaticized into any number of physical symptoms. These include (but are not limited to) headache, tenderness, tingling or numbness, memory loss, and impairment of cognition. Depression, anxiety, behavioral disturbance, and personality change may reflect the adjustments that pituitary tumor patients must make to deal with the physical symptoms caused by alterations in the various hormonal axes affected by the tumor. However, it is equally possible (although at this time unprovable) that the pituitary tumor may itself not be the direct cause of the emotional or cognitive changes experienced by the patient. It is entirely possible or even likely that disruption within the hypothalamus on a molecular rather and structural level may trigger the formation of the pituitary tumor and concomitantly may directly produce the psychosocial disruption the patient feels. Connections from the hypothalamus to other limbic structures (e.g. prefrontal cortex) may cause alternations in personality and mood. Intervention for this constellation of psychological disruption is feasible but may require intervention by
psychiatrists in those most profoundly affected. Generally treatment begins with optimization of hormone levels but may in addition require drug therapy including antidepressants. Psychological testing can yield a detailed profile of the specific areas of impairment and suggest compensatory strategies. In particular, pituitary tumor patients complainof depression, fatigue, and poor memory function. These are real symptoms of physical disease, but the treatment for them is complex and often requires multidisciplinary input.
Radiology
The best way of diagnosing pituitary disease is radiographically by an MRI focused on the sella. CT scan has insufficient resolution to show small tumors and does not confer the anatomic detail found in MRI. A standard MRI of the brain is also inadequate for showing pituitary disease, as it may result in the pituitary being shown by only 1 or 2 slices that are too thick and too spaced to show a pituitary lesion properly. Therefore, if a pituitary tumor is suspected, it is wise to order an MRI of the sella upfront to avoid having to send the patient back for repeat scanning.
Treatment
Once a diagnosis has been made or is at least entertained with a strong level of suspicion, the referral to an endocrinologist and a neurosurgeon is advisable. Even a "simple" prolactinoma may have ramifications on the pituitary - an organ axis that are not immediately obvious from the gynecological perspective. In our practice all patients referred for pituitary tumors are seen by both the endocrinologist and the neurosurgeon to provide opinions from a medical and surgical perspective respectively. A further word of caution is important here. Most endocrinologists can perform an effective workup of a pituitary tumor and make appropriate diagnosis and, where appropriate, medical treatment recommendations from that workup. However, within the neurosurgical community a wide spectrum of expertise in pituitary disorders exists. Patients with resources tend to consult a relatively small cadre of nationally prominent subspecialists in this area while many neurosurgeons with the theoretical ability to do pituitary surgery actually see only 1 or 2 patients per year, an insufficient number to develop true facility with such procedures. Statistics have been compiled that show true expertise (as judged by success in achieving cure and in avoiding complications) comes only when a surgeon has completed 500 or more transsphenoidal surgeries. Thus, for optimal care, referral to a known center of excellence is advisable. The referral practice at The University of Texas MD Anderson Cancer Center is the largest within the state of Texas or any neighboring state.
Medical therapy generally consists of replacing hormones when levels are low or of suppressing them when they are high. Prolactinomas are generally treated with medical therapy as the first line approach due to the fairly good success achievable with Dopamine agonists such as Bromocriptine (Parlodel) or Cabergoline (Dostinex). These drugs will not be effective in patients with pituitary tumor types other than prolactinoma, but in the prolactinoma category they do have excellent success in lowering prolactin levels and reasonable (but lesser) success in causing tumor shrinkage. Patients with prolactinomas come to surgery for several reasons. In some, the drug is ineffective or produces debilitating side effects, typically gastrointestinal in nature. In others, drug therapy has been successful but not completely so, and debulking the tumor is felt to be helpful in allowing medical therapy a better chance to work on a smaller volume of disease. Finally, a number of patients present for surgery because of what one might term "medication fatigue," namely a desire to free themselves of the necessity for taking what may amount to lifelong medication requirement. For patients with Cushing's disease or acromegaly, the first line treatment is almost always surgical; and for patients with nonfunctional tumors causing hypopituitarism or large enough to endanger vision by compressing the optic chiasm, surgery is also the first line choice. Radiation therapy is used mainly as a backup for tumors that have been treated by other means and yet have recurred, are that small group of invasive, hormonally functional tumors that surgery cannot cure and which have proven refractory to medical therapy.
Transsphenoidal surgery is the most common method of removing a pituitary tumor today. Over 95% of pituitary tumors will prove amendable to that approach, of which there are several variations (endonasal versus sublabial, endoscopic versus microscopic, etc.). The transsphenoidal approach is popular because it provides a relatively direct route of access that travels along the septum of the nose, through the sphenoid sinus, to the sella just behind it. When properly performed, this method avoids the brain altogether and is a very safe procedure. Craniotomy is only necessary for tumors that show special features such as persistent recurrence in the
suprasellar space, lateral extension in the cavernous sinus or around the supraclinoid carotid artery, or for tumors too large to be dealt with by transsphenoidal surgery. Because the brain must be retracted somewhat to expose the sella during a craniotomy for pituitary tumor, the
transsphenoidal approach tends to be safer.
Summary of Important Points
- Prolactin levels allow the important distinction between a true
prolactin producing adenoma and a nonfunctional adenoma with stalk
effect to be made with relative security in most patients. - Patients with prolactin secreting pituitary tumors (prolactinomas)
should be treated as first line with Dopamine agonist therapy, while
nonfunctional or other tumors should not. - Surgery may still be necessary in a prolactinoma and is almost always
needed as first line treatment in patients with other functional
pituitary tumor types. - Because the hormonal systems of the pituitary are complex, a wide
variety of clinical syndromes can be caused by tumors.
However, because the majority of pituitary tumors are either
prolactinomas or nonfunctional tumors, the symptoms of those two
types (menstrual disruption, infertility, galactorrhea, headache,
and/or visual disturbance) should raise the issues of a pituitary tumor
in patients who complain of one or more elements of that constellation. - The cognitive and psychosocial disruption exhibited by patients with
pituitary tumors is real and should be viewed as manifestation of
physical disease that can be amenable to appropriately directed
therapies. - Although women with pituitary tumors may be diagnosed by their
obstetrician/gynecologist, ultimate treatment of such tumors should be
carried out under the joint care of an endocrinologist and
neurosurgeon.
Saturday, August 23, 2008
One Good Thing - by Steve Owens
....
.
I have a dear friend, Steve, who is suffering with Cushing's. I met Steve first online at cushings-help.com's message boards over 2 years ago where he was seeking help for a known adrenal tumor. He was passed around to multiple specialists and no one would do anything.
Steve was suffering mightily from the symptoms of Cushing's, yet no one would even test him for that. He persisted and pursued with two Cushing's specialists all the way across the country and was eventually diagnosed with ACTH-dependent Cushing's due to pituitary tumors. (Since many adrenal tumors are due to high ACTH stimulating the adrenals, it was hoped his would go away with the remission of the high ACTH.) He was referred by one for surgery which was done by a top-notch neurosurgeon at M. D. Anderson. Two tumors were removed, one from his pituitary and one from the sella floor.
Steve was not cured. The hopeful demise of the adrenal tumor did not happen, and he is now facing a bilateral adrenalecomy. It will happen next month. In the meantime, he as been on ketoconazole.
Not only does Steve face this after years of his body failing him due to the high ACTH, but his younger daughter is being tested for Cushing's, too. I've met Steve's family in person, and they are as dear as they come. His wife and girls are so supportive of him, and he continues to support others as much as he can in his fight for his life.
All of the above was simply to preface the story below. Steve wrote it and gave me permission to post it. (Love ya, my friend. I know how difficult this was.)
.I have a dear friend, Steve, who is suffering with Cushing's. I met Steve first online at cushings-help.com's message boards over 2 years ago where he was seeking help for a known adrenal tumor. He was passed around to multiple specialists and no one would do anything.
Steve was suffering mightily from the symptoms of Cushing's, yet no one would even test him for that. He persisted and pursued with two Cushing's specialists all the way across the country and was eventually diagnosed with ACTH-dependent Cushing's due to pituitary tumors. (Since many adrenal tumors are due to high ACTH stimulating the adrenals, it was hoped his would go away with the remission of the high ACTH.) He was referred by one for surgery which was done by a top-notch neurosurgeon at M. D. Anderson. Two tumors were removed, one from his pituitary and one from the sella floor.
Steve was not cured. The hopeful demise of the adrenal tumor did not happen, and he is now facing a bilateral adrenalecomy. It will happen next month. In the meantime, he as been on ketoconazole.
Not only does Steve face this after years of his body failing him due to the high ACTH, but his younger daughter is being tested for Cushing's, too. I've met Steve's family in person, and they are as dear as they come. His wife and girls are so supportive of him, and he continues to support others as much as he can in his fight for his life.
All of the above was simply to preface the story below. Steve wrote it and gave me permission to post it. (Love ya, my friend. I know how difficult this was.)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
One Good Thing
If there was ever any hope it is the hope that someday Cushing's will be easier to diagnose and to treat. That doctors will recognize the symptoms and tests are developed that lead from diagnosis to a cure in weeks, not years. If there is one thing I could want to come of all this, it is that. Not just for me, but for all of you, and especially my daughter. It is the hardest thing in the world looking into her eyes. I just want one good thing to come of all this.
These past few weeks have been filled with a lot of emotions, feelings, and just plain being scared. The closer the BLA gets, the more I don't like it. I have no extra spoons to spare to try and conquer the fear, because I am using them to get through each day. The days have been filled with doctors visits, testing for me and Brooke, and work. Nothing out of the ordinary, other than having an infection we cant seem to clear up.
It was at one doctor visit, with Doctor VJ, my family doc, that is the reason of my story. You see, I haven't seen her in a year. My weekly and bi-weekly visits have all been to endo's who are taking care of everything. Well, since they were out of town, I needed to see my family doctor. This is the doctor who wrote tests and she didn't know why, other than we asked for them. She couldn't read results because Cushing's isn't so black and white. This is the doctor who looked at me and knew I had Cushing's, once she read about the physical and not so physical symptoms. This is the doctor who told us my daughter has Cushing's, like her father. This is the doctor who scoured the medical books, talked to other doctors, and researched the internet to learn what she could to help her patients.
We would learn that Dr VJ would have a new patient come to her, one she suspected had Cushing's. Because the doctor took the time to care about me, she would notice the signs and symptoms and be able to run some tests. Because she was able to see a patient that had Cushing's in the past, she was able to see it in her new one. She was able to send her to my endo because she remembered she was helping us and others. This new patient is on the road to recovery already. She is going to be alright.
This made me stop and think. I found this doctor because of the goodwill of a lawyer. This lawyer spent 10's of thousands of dollars of his own money helping me fight and beat the insurance company. This is money he doesnt want back and will not take from us. He did it out of the goodness of his heart. His words were that "there are some things that are so fundamentally wrong in the world and I am just happy that I can help you right one of them." When our family doctor gave up on us, like so many others, he sent us to Dr VJ's office. From there, the doctor and our family grew into a team to help me get better.
I feel so humbled to meet people like these. There are good people in the world. I wanted to give credit to where it is due as well. It would be easy to say that the doctors learned because I did this....or I did that...and that would NOT be true. I know in my heart that I was led to people who could help me at the time I needed it most because I believed and we prayed. I feel humbled that God put me in these doctor's offices so that I could be an instrument of learning.
I believe that every thing we say or do can be remembered, for good or bad, by those around us. Sure, we remember the big things of our lives, but I have so many vibrant memories of the little things. It isn't the big presents I remember most and hold on to dearly. It is the small random acts of kindness that I cherish the most. Everyday, we have the ability to leave a mark on someone's life, even in the smallest of ways. None of us know God's will, but I believe that in that moment of time, when I was sick and out of options, He put me where He wanted me to be and that was the that doctor's office. I had never thought of it that way. I had ALWAYS prayed that something good would come from this to help the next person. If something good was going to come from it all, it was going to come from the powers of up above, not through my works or anything I could do.
My prayer was answered. I know that something good has come from this all, even if it has helped one single person. For that, I am thankful for my blessings. I am thankful for the brief clarity of mind to write it all down.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Thursday, August 21, 2008
We are the champions in this race......
Carrin has had surgery twice to remove a pituitary adenoma. She just recently found out she again has tumor growing on her pituitary and still has Cushing's. She was not surprised, but obviously a bit sad. However, when she shared her thoughts with the Cushie community at cushings-help.com, they were not negative at all. They were inspiring to me and I wanted to share them with you (with her permission):I am now at a point where I never thought I'd be. I am content with where my life has taken me and although the road has been long and sometimes difficult I wouldn't change a thing. I have been changed by all the people along the way and I am learning how to live my life. Sure maybe it isn't the plan that I had originally, but that is what makes it an adventure.
We have an advantage over people who have never been ill. We move slower to enable us to see more around us, enjoy it, learn from it and pass that knowledge on. Remember Aesop's tortoise and the hare? The hare moved so quickly that he decided he could take a nap. In the meantime the tortoise slowly and steadily won the race. What do you think the hare enjoyed in his hurried need to finish first? I always imagine this tortoise who Aesop says was ridiculed for his short feet and slow pace -- I imagine him enjoying the feel of the grass beneath his feet, the smells, the sounds and the view!
Cindy* your lighthouse post really made me happy. I imagined the hundreds of tourist and hikers who begrudingly climed the steps of that lighthouse just to finish. Just to do it. You on the other hand understood the value of each of those steps, and relished in a victory.
This disease changes us, during this illness we become so angry and upset that we begin to measure our worth on the amount of steps we take in the day... we are just like the hare. We want to finish first. Now I realize that it isn't the amount of steps I take in the day... it truly is the quality of those steps. I'm slower and weaker than most, but I do have the power to win the race. Slow and Steady. Somedays I may only get out of bed a couple times, but from my bed I am able to dream. On good days I may walk my kids into their classroom and be a huge part of their world. I can hold the hand of someone who is hurting. I can be a friend. I can bake a cake for my elderly neighbor. I can pray. I used to see those things as limitations... I can only.... I can only.... You see, just because people can doesn't mean they do. We are those people who CAN do.
We are the champions in this race.
*Cindy recently had a bilateral adrenalectomy after a failed surgery to remove all tumor tissue from her pituitary. She shared her recovery with us, including pictures of a hike made to a lighthouse while on vacation. It was very inspiring.
Gals, I just want you to know that you inspire me. Thank you so much for sharing.
Monday, July 14, 2008
Tamera's story of hope: Cushing's, pituitary surgery, and remission
Tamera is a nurse in Alaska. She and her husband also own and run a B&B there. Tamera had Cushing's caused by a pituitary adenoma which was removed by surgery in Fl (where her daughters live). She posted an update on the cushings-help boards, and I asked her if I could share it on my blog. She gave me the green light, which I very much appreciate. Tamera, thank you for sharing, and thank you for the ray of sunshine.
Tamera's story exactly as she wrote it:
Tamera's story exactly as she wrote it:
I can understand how you feel because I was once there as well. I'm a nurse and had lost all ability to practice due to the multitude of symptoms. I won't go into the details, because we all know the crazy symptoms that go hand in hand with Cushing's. But I want to give you hope. I know there are those who end up without a cure after surgery and others who have trouble with recovery, but every now and then something good happens and I was one of the lucky ones. Now here is the good part:
I had surgery on Dec. 19, 2007 since then:
I have lost 71 pounds.
I have regained sight, memory, ability to use my right side, I feel good about myself again. I have no headaches, female problems resolved, back pain GONE, foot pain GONE, bones healing, more energy, skin cleared up, hump gone, subclavial fat pads GONE, hair improved, nails growing again, I can walk straight AND actually make it up the stairs without feeling like I will pass out...AND I can walk down the stairs like a normal person. Not going one step at a time and clinging to the rail for support due to the extreme weakness. I can do housework again and am capable of running my bed and breakfast which can have up to 16 guests at a time. I'm not cowering in the corner wishing I could disappear, I'm more social again, I don't bite people's heads off, or wish to. I care about my appearance again and enjoy hearing from family and friends about how great I look. I'm no longer wishing I could end my life in some way...yes, I had gotten to that point when I felt everything had been taken from me and I could not get doctors to believe me. I'm forever grateful to Dr. K and Dr. R at Shands in Gainesville for giving me back my life. I still have some days when I'm a bit nauseated, days when my muscles and bones ache from the damage the high levels of cortisol did. But, I'm back on the river catching salmon, making smores around the firepit with the guests, exercising at Curves, doing all the things I could not do last year. In fact, the week before my surgery, I finally broke down and allowed my son to push me in a wheelchair so I could go to Disney with the kids. He thought it was pretty cool that we got in lines first, but me, I was mortified! I've always been in control, the nurse and supervisor. To have all that taken away just about did me in. But here I am, just over six months later and living life again as I never thought I would. I can't wait to see what a year brings.
My advise: HAVE FAITH IN YOURSELF. IF A DOC TELLS YOU THAT YOU DON'T, CAN'T HAVE CUSHING'S THEN FIND ANOTHER DOCTOR WHO WILL LISTEN TO YOU. THERE IS ONE WHO WILL. DO NOT GIVE UP ON YOURSELF, YOU OWE IT TO YOUR FAMILY, FRIENDS AND ALL THOSE WHOSE LIVES YOU ARE LEFT TO TOUCH, MOST OF ALL, YOU OWE IT TO YOURSELF.
AND STAY HERE! HERE YOU WILL FIND THOSE WHO WILL CARE, LISTEN, AND UNDERSTAND. THOSE WHO WILL WORRY ABOUT YOU AND ALWAYS BE THERE FOR YOU. IF I CAN EVER BE OF HELP, PLEASE FEEL FREE TO PM ME OR WRITE ME DIRECT AT TACHINRN@AOL.COM. I AM SO INDEPTED TO THIS GROUP AND TO MARY WHO CREATED THIS PLACE FOR US TO MEET. I ONLY WANT TO BE ABLE TO GIVE IN RETURN.
Tamera
Monday, July 7, 2008
Friday's News
Update again(most recent on top): The 256 was a 24-hour urinary free cortisol (UFC), so the pre-op serum level is still not known. I apologize for the misleading information.
...I posted the following last week. I'm moving it up to update it. We now know that Mike had a pre-op serum cortisol of 256. I cannot "say" that calmly. 256!!! Suzy had a tough time tracking that down. Too tough of a time. Someone needed to know that in the hospital. She says they want to do a bilateral adrenalectomy (otherwise known as a BLA and pronounced "blah" in jest/fun...) and radiation on the remaining tumor area.
Mike is in trouble:
My name is Susan and I am writing this bio for my husband Michael. He had a lot of health issues that were misdiagnosed and unanswered for several years. He developed osteoparosis, diabetes, high blood pressure and other problems over night it seems. He also had several features of cushings such as the moon face and buffalo hump.
He was finally diagnosed with Cushing's about three months ago. November 2007 he went into the hospital with backpain and he was unable to stand. Within days of being admitted I was told he had a compression fracture that paralyzed him from the waist down. [Robin's note: high cortisol from Cushing's Disease causes osteoporosis]
He had transphenoidal pituitary surgery June 23. The tumor was approximately 20 cm which had doubled in size since November. Only part of it was removed because it was in the nerve center of brain and "wrapped" around carotid artery. Neurosurgeon was able to remove more than thought, but he might need another surgery or radiation treatment.
Robin's Note: Since this was posted on the cushings-help.com website, Mike has had a turn for the worse. Gracie, who has been in touch with Suzy, writes:
...I posted the following last week. I'm moving it up to update it. We now know that Mike had a pre-op serum cortisol of 256. I cannot "say" that calmly. 256!!! Suzy had a tough time tracking that down. Too tough of a time. Someone needed to know that in the hospital. She says they want to do a bilateral adrenalectomy (otherwise known as a BLA and pronounced "blah" in jest/fun...) and radiation on the remaining tumor area.
Mike is in trouble:
My name is Susan and I am writing this bio for my husband Michael. He had a lot of health issues that were misdiagnosed and unanswered for several years. He developed osteoparosis, diabetes, high blood pressure and other problems over night it seems. He also had several features of cushings such as the moon face and buffalo hump.
He was finally diagnosed with Cushing's about three months ago. November 2007 he went into the hospital with backpain and he was unable to stand. Within days of being admitted I was told he had a compression fracture that paralyzed him from the waist down. [Robin's note: high cortisol from Cushing's Disease causes osteoporosis]
He had transphenoidal pituitary surgery June 23. The tumor was approximately 20 cm which had doubled in size since November. Only part of it was removed because it was in the nerve center of brain and "wrapped" around carotid artery. Neurosurgeon was able to remove more than thought, but he might need another surgery or radiation treatment.
Robin's Note: Since this was posted on the cushings-help.com website, Mike has had a turn for the worse. Gracie, who has been in touch with Suzy, writes:
I was in chat with a new member the other night ... Her name is Suzy...and her husband's name is Mike. She told me that Mike had pituitary surgery about 11 days ago. He is in a hospital in Philadelphia, PA. Mike is in serious condition! He is on a ventilator, and it had to be turned back up to 100% last night. He is paralysed from the waist down (I'm not sure if this was before or after surgery), when his PICC line was removed, a blood clot shot straight to one of his lungs. The other lung is in threat of collapse. The list goes on and on.
...I asked Suzy which type of replacement [hormone] he was on, and how much. She said he is not on ANY!!!! I asked why and the doctor told her he is more concerned with his breathing problem right now!! ...I explained the whole replacement thing to her and how this is crucial for life. His tumor was around an inch in size. It was rapidly growing, and it was wrapped around his artery, so they did not get all of it with that surgery. I truely believe that is the only thing still giving him enough cortisol to keep him out of a coma right now.
For those of you who don't know, if the body is used to high levels of cortisol, it goes into shock when those levels are rapidly dropped even if some is being produced. Updates as I get them.
Saturday, June 21, 2008
A neverending story....
.....
I really am not a doctor basher. Oh dangit...I don't want to be, anyhow. But I know I'm not the only one who seldom finds a doctor who sees the whole picture. Yes, it's "just" a sinus infection. But it's more than that to me. Here is the letter I wrote today about my experience, with names hidden to protect the not-so-innocent:
I am a patient of Dr. M. This is not about her. However, I did see her on June 13 for a sinus infection which included a very bad headache and sore, painful areas below and above my eyes which worsened when I chewed, plus pain all the way to the back of my head. She did concur and prescribed 5 days of levaquin. Since I had transsphenoidal endoscopic surgery to remove a pituitary adenoma several months ago, a sinus infection is doubly concerning. I have fought sinus infections for years, and use preventative measures. However, I feel I need to be seen by a professional when I can’t get rid of it or control it with no antibiotics.
The levaquin did work for me, but it took about 4 days before my sinuses loosened up enough for a little of the “crud” to start coming out. I went out of town for several days, and returned late yesterday (Friday). My sinuses have closed back up, are very painful, and my terrible headache is back. I thought it would be better to see someone today rather than wait until Monday to try to catch this before it got worse. I felt like, and still feel I did not have a long enough course of antibiotics. I am not trying to play doctor, but I do know how my body acts and am not stupid.
I saw Dr. X at the urgent care on ***** Avenue. I went there because it is also where Dr. M works during the week and thought it would be a continuance of care rather than starting all over. Dr. X said my right sinus was very congested and my left was fairly congested. However, since the levaquin didn't work, he said it had to be viral and I needed to use Flonase. I refused the Flonase and told him I knew I could not use it but could not remember why. He then wanted to put me on sudafed and steriods. I politely refused both telling him I could not take the sudafed due to blood pressure issues and I was already on steroids due to adrenal insufficiency from my pituitary surgery. I am trying to wean off of those, but adrenal insufficiency, especially when magnified by an infection, makes it tough. Well, he was very unfriendly/antagonistic, did not want to listen to my explanation, and told me I could just wait and see Dr. M. I was in tears. I told him the levaquin was starting to work, but I just needed a longer dose, I thought. He said I didn't need to "just be taking antibiotics to see if they might work". I was furious but courteous. I told him that I never "just took antibiotics" and took very few of them compared to most folks. He was not interested in any of my history. He walked out on me! He said, "You can get dressed and leave." I was never discourteous and I did not deserve that type of management.
As for the Flonase, GlaxoSmithCline, Inc. include the following in their studies:
Like any other nasally administered corticosteroid, acute overdosing is unlikely
in view of the total amount of active ingredient present. However, when used
chronically in excessive doses or in conjunction with other corticosteroid
formulations, systemic corticosteroid effects such as hypercorticism and
adrenal suppression may appear. If such changes occur, the dosage of
fluticasone propionate should be discontinued slowly, consistent with accepted
procedures for discontinuation of chronic steroid therapy (see DOSAGE AND
ADMINISTRATION).
(As a sidenote: All the studies of the effects of Flonase on the HPA-axis have been done with “normal” patients, not those with a compromised HPA-axis and/or Cushing’s Disease.)
I do not want to mess with my HPA-axis more than I have to. The repercussions are enormous and obviously not understood by Dr. X. I am already dealing with a tenuous balancing act trying to replace all the hormones lost due to a pituitary adenoma that was not caught for over 20 years. (Thank you, Dr. M for saying “endocrine” to me when I first saw you.) Each of these affects the other, and adrenal insufficiency is just one price I pay if these aren’t balanced properly. I realize this is a lot to understand in one office visit, but he should have treated me with more dignity and understanding. And he could have listened.
GlaxoSmithCline also says that Flonase is contraindicated with viral infections (which Dr. X said I probably had), yet he wanted to put me on it. I am at a loss to explain this, but perhaps would understand if he had taken the time to explain.
To summarize, I am in pain, will have no treatment until Monday when I can reach Dr. M, and I feel Dr. X was out of line.
I really am not a doctor basher. Oh dangit...I don't want to be, anyhow. But I know I'm not the only one who seldom finds a doctor who sees the whole picture. Yes, it's "just" a sinus infection. But it's more than that to me. Here is the letter I wrote today about my experience, with names hidden to protect the not-so-innocent:
I am a patient of Dr. M. This is not about her. However, I did see her on June 13 for a sinus infection which included a very bad headache and sore, painful areas below and above my eyes which worsened when I chewed, plus pain all the way to the back of my head. She did concur and prescribed 5 days of levaquin. Since I had transsphenoidal endoscopic surgery to remove a pituitary adenoma several months ago, a sinus infection is doubly concerning. I have fought sinus infections for years, and use preventative measures. However, I feel I need to be seen by a professional when I can’t get rid of it or control it with no antibiotics.
The levaquin did work for me, but it took about 4 days before my sinuses loosened up enough for a little of the “crud” to start coming out. I went out of town for several days, and returned late yesterday (Friday). My sinuses have closed back up, are very painful, and my terrible headache is back. I thought it would be better to see someone today rather than wait until Monday to try to catch this before it got worse. I felt like, and still feel I did not have a long enough course of antibiotics. I am not trying to play doctor, but I do know how my body acts and am not stupid.
I saw Dr. X at the urgent care on ***** Avenue. I went there because it is also where Dr. M works during the week and thought it would be a continuance of care rather than starting all over. Dr. X said my right sinus was very congested and my left was fairly congested. However, since the levaquin didn't work, he said it had to be viral and I needed to use Flonase. I refused the Flonase and told him I knew I could not use it but could not remember why. He then wanted to put me on sudafed and steriods. I politely refused both telling him I could not take the sudafed due to blood pressure issues and I was already on steroids due to adrenal insufficiency from my pituitary surgery. I am trying to wean off of those, but adrenal insufficiency, especially when magnified by an infection, makes it tough. Well, he was very unfriendly/antagonistic, did not want to listen to my explanation, and told me I could just wait and see Dr. M. I was in tears. I told him the levaquin was starting to work, but I just needed a longer dose, I thought. He said I didn't need to "just be taking antibiotics to see if they might work". I was furious but courteous. I told him that I never "just took antibiotics" and took very few of them compared to most folks. He was not interested in any of my history. He walked out on me! He said, "You can get dressed and leave." I was never discourteous and I did not deserve that type of management.
As for the Flonase, GlaxoSmithCline, Inc. include the following in their studies:
Like any other nasally administered corticosteroid, acute overdosing is unlikely
in view of the total amount of active ingredient present. However, when used
chronically in excessive doses or in conjunction with other corticosteroid
formulations, systemic corticosteroid effects such as hypercorticism and
adrenal suppression may appear. If such changes occur, the dosage of
fluticasone propionate should be discontinued slowly, consistent with accepted
procedures for discontinuation of chronic steroid therapy (see DOSAGE AND
ADMINISTRATION).
(As a sidenote: All the studies of the effects of Flonase on the HPA-axis have been done with “normal” patients, not those with a compromised HPA-axis and/or Cushing’s Disease.)
I do not want to mess with my HPA-axis more than I have to. The repercussions are enormous and obviously not understood by Dr. X. I am already dealing with a tenuous balancing act trying to replace all the hormones lost due to a pituitary adenoma that was not caught for over 20 years. (Thank you, Dr. M for saying “endocrine” to me when I first saw you.) Each of these affects the other, and adrenal insufficiency is just one price I pay if these aren’t balanced properly. I realize this is a lot to understand in one office visit, but he should have treated me with more dignity and understanding. And he could have listened.
GlaxoSmithCline also says that Flonase is contraindicated with viral infections (which Dr. X said I probably had), yet he wanted to put me on it. I am at a loss to explain this, but perhaps would understand if he had taken the time to explain.
To summarize, I am in pain, will have no treatment until Monday when I can reach Dr. M, and I feel Dr. X was out of line.
Sunday, June 15, 2008
Fast forward...
.....
I meant to get back here before now to add more information. Right now, all I can do is try to not get sick from the sinus infection that is pulling me down. Yep, went to the doctor, got the antibiotic, and you'd think it would be simple as that. Not.
Since the removal of my pituitary adenoma involved transsphenoidal endoscopic surgery which went through said sinuses to the base of my brain, it is a tad worrisome. Not mention the fact that any stress on the body (good, bad, or indifferent) causes some degree of adrenal insufficiency (AI). This includes infections. In fact, it often is the first indication I have of any infection.
Back to the doctor. My doctor. She is a sweet person. In fact, she was the only one in all these years of suffering with Cushing's Disease who realized I had something "endocrine" going on until I saw Dr. Friedman in Los Angeles. However, that's about as far as she went with the understanding of the disease. Since she is willing to listen and work with me, I don't hold it against her. I do hold it against medical schools who don't teach their doctors enough about this disease. She doesn't understand AI. She doesn't understand what the tumor did or how it messed up my system even beyond removal. She doesn't get "stress dosing" to combat the AI. But she does understand a sinus infection. Just not how bad it can be. At least she now asks "what works" and then prescribes it. And she cares. There's a lot to be said for that. A whole lot.
I wish I could get rid of the headache. It won't go away.
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