Acromalagy Brain Tumour.

My story.

GENERAL SYMPTOMS

Headaches are the most common initial symptom and the majority of patients experience headaches sometime during the course of their disease.

Typical brain tumor headaches come and go and do not throb. They are worse in the morning and improve gradually during the day. They may rouse the person from sleep. These headaches may worsen with coughing or exercise, or with a change in body position - such as bending or kneeling.

Headaches are due to pressure in the brain. Some people experience neck pain as well.

Seizures are another common symptom of brain tumors. About half of all patients experience some form of seizure during the course of their illness.

Seizures are caused by a disruption in the normal flow of electricity in the brain. Those sudden bursts of electricity can cause a variety of symptoms including convulsions, unusual sensations, and loss of consciousness.

Mental changes frequently occur. These changes include problems with memory, speech and communication, reasoning, or concentration. Changes in behavior, temperament, interests or a state of confusion are other indications of mental change.

Mental changes may be caused directly by the tumor or by the increased pressure within the skull (intracranial pressure) it creates.

Nausea and vomiting; drowsiness; vision problems, such as blurred or double vision, or loss of some visual fields; as well as the headaches and mental changes already mentioned, are symptoms often caused by increased intracranial pressure (IICP).

This IICP is due to
1) the tumor's growth within the skull - an area enclosed by bone which cannot expand, and/or
2) blockage of the fluid that flows around and through the brain (hydrocephalus), and/or
3) swelling of the brain around the tumor due to an accumulation of fluid.
These all cause what is called mass effect. Mass effect may cause further damage by compressing and displacing delicate brain tissue.

In addition to the common, but non-specific symptoms listed above, other more specific symptoms frequently occur. They help identify the tumor's location.

These symptoms include: hearing problems such as ringing or buzzing sounds or hearing loss, decreased muscle control and lack of coordination, decreased sensation, weakness or paralysis, difficulty with walking or speech, balance problems and crossed eyes.

Pituitary Tumor:

The pituitary is called the "master gland". It secretes several important hormones.

Headache, vision changes, and diabetes insipidus (a type of hormone disturbance) are common symptoms of this. Because these tumors often secrete hormones inappropriately, other symptoms vary depending on the type of hormone secreted.

This Information found at http://www.abta.org/symptoms.htm

Pituitary Adenoma

The pituitary gland is a small oval structure located at the base of the brain in the center of the head, behind the eyes and optic nerve. It is about the size of a pea but is very important because it secretes several chemical messengers known as hormones, which help control the body's other glands and regulate growth, metabolism, maturation and other essential body processes.

A tiny tumor located just next to the gland, pituitary adenomas account for about 10% of brain tumors. Doctors classify pituitary tumors into two groups ­ secreting and non-secreting.

Secreting tumors release unusually high levels of pituitary hormones, triggering a constellation of symptoms. They are usually much smaller than the gland when they begin to cause symptoms and the symptoms depend on the tumor's size and the kind of hormone the tumor secretes.

Prolactin­secreting adenomas affect sexual characteristics and cause impotence in men. Adenomas secreting growth hormone cause acromegaly abnormal body growth, enlarged facial features, hands and feet) and gigantism (excessive size and stature). The less common adrenocorticotropic hormone­secreting adenoma causes Cushing's disease.

Some adenomas secrete a combination of these or other hormones and some secrete none. Almost all adenomas are benign, but their slow expansion compresses normal structures that surround it, suppressing normal pituitary function and sometimes causing headaches or problems with vision.

Pituitary adenomas rarely metastasize or spread to other areas of the body. They are removed in an operation using microsurgical techniques, a very successful form of treatment for the majority of patients.

This information found at http://www.braintumor.org/nonglioma.html

Pituitary Tumors

by John R. Mangiardi, M.D. and Howard Kane, Wm.

The pituitary gland is a half-breed in many ways. It is not really a part of the brain, but rather hangs beneath it. Half of the gland comes down from the brain (the posterior lobe which controls the body's water levels and secretes the hormone ADH - anti-diuretic hormone).

The other half comes from tissues originating from the roof of the embryonic mouth, the anterior lobe which controls sex hormone levels, lactation, growth hormone, body steroids, and the thyroid gland).

The pituitary is responsible for almost all of the body's hormonal systems, taking all of its cues from the hypothalamus, the hidden and very deeply located Grand Wizard of the brain. The hypothalmus also controls such activities as body temperature, sexual drive, appetite, blood glucose levels, and sleep/arousal behavior patterns.

As elsewhere in the brain, tumors of the pituitary gland behave according to their cell of origin. Most of these tumor are truly benign, although on occasion they may prove to be malignant (pituitary carcinomas).

The list of cells of the pituitary determines the tumor types, as well as the clinical syndromes related to each. Almost all have the good prognosis which calls for total removal. On the other hand, almost all can eventually become "malignant by position".

This is especially true when the tumors grow off to either side, involving the jam packed structures behind both eyeballs, called the "cavernous sinuses". The pituitary gland is located exactly between these two structures, which contain the nerves that control eye movement and the major arteries that feed the brain (carotid arteries, the veins that drain the eyes and other nerve related structures).

Therefore, these tumors may occasionally present the patient with double vision, or even something called "Pituitary Apoplexy" (severe sudden headache, loss of and/or double vision, protruding eyeball).

Each tumor, because of its extraordinarily high hormonal output, creates a characteristic clinical syndrome that brings attention to the tumor. Because the pituitary gland is located directly beneath the place where the nerves cross, coming from the eyes to the brain (the optic chiasm), many tumors also present - along with the hormonal problems listed below - loss of peripheral vision.

Hormonal Problems

Gigantism: This syndrome is caused by pituitary tumors on the growth hormone secreting cells of the pituitary gland. Remember Lurch from the James Bond movie - large hands, protruding jaw, severe arthritis, huge size, protruding eyebrows, plus other systemic problems - a classic example of gigantism.

Cushings Disease: This syndrome is caused by tumors on the ACTH (Adrenal Corticotrophin Hormone) secreting cells of the pituitary gland. Patients with this problem develop fat deposits in strange places (Moon face, Buffalo hump on the back of the neck), spontaneous scarring of the skin along the belly that look striated, pimples in adults, high blood pressure and elevated body temperature.

These tumors are usually so small that the surgeon might have a difficult time finding the little "bad pearl" in the gland during surgery. This is the one time when small can be bad, especially if the surgeon is unable to locate and remove the tumor! ACTH secreting tumors, although small and troublesome, are readily cured by surgery alone.

Prolactin Syndrome: This syndrome is caused by tumors on the prolactin secreting cells of the pituitary gland. The tumors are the most common of all the pituitary tumors. Production of breast milk in women who are not pregnant, loss of menstrual cycle, and loss of bone calcium are all hallmarks of this tumor.

When small, it may be cured; when large, it may cause visual problems and require other (e.g. radiation) therapy. Many women with this tumor visit their gynecologist thinking that they might be pregnant.

Growth hormone secreting tumors may very occasionally be treated with drugs, but most often must be removed surgically.

Non-Secreting Tumors: Can be treated by surgery and/or radiation. These patients almost always have problems with vision, as the hormonally quiet tumor grows to over-sized proportions, actually growing to the point of lifting up and stretching the optic nerves (especially where the nerves from both eyes cross as they travel to the brain).

The treatment of these tumors is variable. Prolactinomas are most often treated non-surgically with drugs that inhibit prolactin production (parlodil). Microprolactinomas sometimes never really grow over long periods of time, and do not require surgery.

All pituitary tumors can be treated by radiation, especially with the improvements brought on by focused beam radiation (liner accelerator and proton beam). The idea of radiosurgery originated in this venue.

One serious problem with radiation has been loss of function in the remainder of the pituitary gland, requiring patients to depend on hormone supplements for the continuation of their lives. Another has been the inability to quickly reverse visual loss in large tumors using radiation. On the other hand, radiation has been used as a very successful adjunct in larger tumors that pose a threat to long term survival.

Surgery on Pituitary Tumors

The pituitary gland lies just above the air spaces in the nose (if you'd stick a pencil through your nose hard enough, you'd end up in your pituitary gland).

In fact, the word "pituita" refers to the not so delicate production of "snot". In medieval times in Europe, and in China today, it is thought that "pituita" was something good to get rid of, serving as a relief valve for bad humors of the brain. In other words, spitting was good for the soul as well as one's health.

Thus, by traversing the structures just beneath the skull through the nasal cavities, brain surgery can be avoided and the risk of approaching the pituitary gland can be enormously reduced.

Decision Making for Pituitary Tumor Surgery

It's an Emergency: Patients who have a large pituitary tumor (and often don't even know about it) will occasionally develop a kind of pituitary "stroke", called pituitary apoplexy.

This occurs after the tumor outgrows its blood supply and suddenly enlarges (due to swelling) after it infarcts (a type of local stroke), or begins bleeding within the tumor. The enlargement causes severe headache and/or double vision, because the nerves that control the eye located next to the gland are pressed upon.

It can also cause loss of vision (because the gland swells upward, pressing from beneath the optic nerves above). Surgical decompression is an emergency procedure because permanent blindness may result if left untreated.

Surgery Is the Best Way to Go

Cushing's Disease: Because the tumor is so small, a cure is possible when removed. Thus, surgery is the best way to go. Moreover, the remainder of the gland is left intact, and will function normally thereafter.

Large tumors with liquified (necrotic) centers: In these cases, the surgery is easy, and the improvement is immediate. Any remaining tumor beyond the confines of the surgical field can be safely treated by other standard therapies (e.g. radiation therapy).

Medium sized tumors: Still within the confines of the pituitary gland. As with the Cushing's tumors, the tumor can be completely removed and the gland saved for normal function.

A 'Hold' on the Surgery

Prolactinomas: Should always be treated initially with medication (anti-DOPA agents such as Parlodil, Bromocriptin, etc.). Even large tumors that most need to be treated by either surgery or radiosurgery should be pretreated with these drugs to shrink the tumor away from vital brain structures before surgery should be contemplated.

Microprolactinomas: Surgically, nothing need be done for as long as possible. Some of these tumors appear to just sit there for years, even decades.

Extremely large tumors that cause little visual or other brain problems: In treating these tumors, particularly in older people, the physician should consider radiation therapy to stop the progression of these tumors. A surgical cure is usually not an option, for the substantial surgical risk entailed.

This information found at http://www.brain-surgery.com/pituitary.html


STAGE INFORMATION

The presence of a pituitary tumor is most readily determined by magnetic resonance imaging, although it may also be established by radiographic studies including skull films, tomograms, and computer tomography.

Appropriate endocrine studies will help exclude non-pituitary causes of Cushing's syndrome. Pituitary tumors are commonly classified according to cell type. One staging system that is used for pituitary tumors is Leavens.


TREATMENT OPTION OVERVIEW

Treatment depends on the type of pituitary tumor and whether it extends into the brain around the pituitary.

The hormone-secreting tumors may be treated with surgery or radiation therapy. Drug therapy with bromocriptine has been used with success in patients with prolactin-secreting tumors. Growth hormone-secreting tumors can also be treated by somatostatin analogues, such as Sandostatin, with success.

The development of transsphenoidal hypophysectomy represents a major development in the safe surgical treatment of both hormonally-active and non-functioning tumors. Transsphenoidal surgery is the usual treatment of choice for lesions confined within the sella turcica.

Lesions extending beyond the confines of the pituitary are most frequently the non-functioning chromophobe adenomas and require additional radiation therapy. Rapid deterioration of vision is an immediate indication for surgery (to relieve pressure produced by the growing tumor mass).

The natural history of GH-secreting and ACTH-secreting pituitary tumors is usually one of slowly progressive enlargement. Prolactin-secreting tumors, however, often stabilize and may improve with time, although some of these tumors may grow beyond the confines of the sella turcica.


PROLACTIN-PRODUCING PITUITARY TUMOR

When the pituitary tumor secretes prolactin, treatment will depend on tumor size and the symptoms which result from excess hormone production.

Bromocriptine has been used with considerable benefit in the treatment of prolactin-secreting tumors, along with surgery and radiation therapy. The drug CV205-502 given once daily has been used successfully with minimal side effects in relapsing or refractory cases after bromocriptine failure.

  • Treatment options:
  • Standard: Surgery: - transsphenoidal - frontal craniotomy (rarely)
  • Radiation therapy: standard photon radiation therapy.
  • Bromocriptine/Dostinex: to shrink the tumor.
  • Combinations of the above.

    This information found at http://noah.cuny.edu/cancer/nci/cancernet/101273.html


    Brain Tumors.

    Approximately 44 percent of all primary brain tumors are benign.

    Unlike most benign tumors found elsewhere in the body, benign brain tumors may recur and may result in death.

    Currently, brain tumors cannot be prevented because their cause is still unknown.

    Brain tumors are difficult to treat. Surgery and radiation therapy are effective but limited, due to the risk each places on the surrounding normal brain tissue. Chemotherapy has had only minimal success.

    A "good" surgical result can still leave the patient with severe physical incapacity. "Successful" radiation therapy to the brain can have deleterious long-term side effects

    In most parts of the body, benign tumors are not particularly harmful. This is not necessarily true in the brain. Because the brain is housed within the rigid, bony confines of the skull, any abnormal growth can place pressure on sensitive tissues and impair functions.

    Also, any tumor located near vital brain structures can seriously threaten health. A benign tumor growing next to an important blood vessel in the brain does not have to grow very large before it can block blood flow.

    Or, if a benign tumor is found deep inside the brain, surgery to remove it may be very risky because of the chances of damaging vital brain centers. On the other hand, a tumor located near the brain's surface can often be removed surgically.


    How are Brain Tumors Diagnosed?

    Research has made major strides in the ability to detect and diagnose brain tumors. When a doctor suspects a brain tumor because of a patient's medical history and symptoms, they can turn to a number of specialized tests and techniques to confirm the diagnosis. However, the first test is often a traditional neurological exam.

    Neurological Exam: A neurological exam checks eye movement; eye reflexes and pupil reactions; reflexes; hearing; sensation; movement; balance and coordination.

    The next step in diagnosing brain tumors often involves special imaging techniques and laboratory tests that can detect the presence of a tumor and provide clues about its location and type.

    Computed Tomography (CT): CT uses a sophisticated X-ray machine and a computer to create a detailed picture of the body's tissues and structures. Often, doctors will inject an iodine dye into the patient before performing a CT scan.

    The dye, also called contrast material, makes it easier to see abnormal tissue. A CT scan often gives doctors a good idea of where the tumor is located and can sometimes help them determine the tumor's type. It can also help doctors detect swelling, bleeding and other associated conditions. In addition, CT scans can help doctors check the results of treatment and watch for tumor recurrence.

    Magnetic Resonance Imaging (MRI): MRI uses a magnetic field rather than X-rays, and can often distinguish more accurately between healthy and diseased tissue. MRI gives better pictures of tumors located near bone than CT, does not use radiation as CT does, and provides pictures from various angles that can enable doctors to construct a three-dimensional image of the tumor. Contrast material is often injected as in CT.

    Pituitary Adenomas

    The pituitary gland, a small oval-shaped structure located at the base of the brain, releases several chemical messengers known as hormones, which help control the body's other glands and influence the body's growth, metabolism, and maturation.

    Tumors that affect the pituitary gland account for about 10% of brain tumors. Doctors classify pituitary adenomas into two groups-secreting and non-secreting.

    Secreting tumors release unusually high levels of pituitary hormones, triggering a constellation of symptoms, which can include impotence, amenorrhea, galactorrhea, abnormal body growth, Cushing's syndrome, or hyperthyroidism depending on which hormone is involved. Surgery or the drug bromocriptine is used to treat prolactin secreting pituitary adenomas while larger, non-secreting adenomas are treated with surgery and radiation therapy.

    This information from http://www.tbts.org/


    Treatment With Bromocriptine / Dostinex:

    Bromocriptine (Parlodel) and Dostinex (Cabergoline) are used in the treatment of pituitary adenomas (especially hyperllrolactinemia and acromegaly).

    Bromocriptine is now considered less effective for this purpose - short term side effects tend to be nausea, headache, vertigo, fatigue and abdominal complaints. Dostinex - short term side effects tend to be nausea, dizziness, sleepiness, headache, or stuffy nose.

    *I took Bromocriptine at first, but now take a low dose of Dostinex, it works more consistently.

    This info from http://www.druginfonet.com/faq/faqbromo.htm and http://www.mydr.com.au/medicines/cmis/dostinex-tablets

    ...

    Links

    For a good overall look at treatment, symptoms etc check out this page : "Treatment of Prolactinomas" http://ca.geocities.com/chris_anthistle/prolactinoma/index.html

     

    For a place to get support from fellow sufferers, try this excellent "Guest Book". http://neurosurgery.mgh.harvard.edu/guest/pit/guest.htm


     

    Scan me!

    Scan me!

    MRI scans picked up my 5mm tumor.

     

    Picture on the left is side on.

     

    Picture to the right is face on.

    I can see 2 Afghan hounds facing each other in it. Can you?

     

     

     

    The second set of MRI's show no improvement, or deterioration.

    Left is side on.

    Right is from above.

    Makes my eyes look pretty, no?

     

     

     

    Books

    "Understanding your Pituitary Problems". By Lyn Taylor. Published by Health Books.

     

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