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Welcome to the new Cushing's Help and Support FAQ (frequently asked questions) page. This new area will be a compilation of our visitors most frequent questions. Questions and answers are still being added.

Please select either a category on the left, or type in a keyword to search the database of questions and answers. Please note that there are several questions waiting to be answered at this time. Your question will be answered as soon as possible. If your question is very urgent, you might want to check the message boards to see if your question has been answered, or add it yourself.

IMPORTANT: The information and material posted on this Web site is intended as general reference information only. Specific facts and circumstances may alter the concepts and applications of materials and information described herein. The information provided is not a substitute for professional advice and should not be relied upon in the absence of such professional advice specific to whatever facts and circumstances are presented in any given situation.



Post Surgery     List of Categories







  • I have had pit surgery over 5 years ago, since then I have had a child, she is one and a half now and I think my Cushing's is recuring, is this possible? when I was first diagnosed I had a son approximatedly the same age!!

    Yes, it is possible for Cushing's to return. There are many people on the message boards who have had recurrences. If you haven't see the message boards, click here for the Recurrences Board. People have different choices for treating recurrences. Some opt for another pituitary surgery, radiation or adrenal removal. Best of luck, whatever you decide to do about this!

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  • I went to endo today. Having so much pain. I am 10 weeks post op. He says he thinks I have rhuematoid arthritis. Is this common amongst us cushies?? What about pain clinics for the withdrawal symptoms?? Has any one had luck with those??

    Many Cushie's experience pain and arthritis. Some people have had good luck with pain clinics. Here are some quotes about these experiences from the message boards.

    "Hi Everyone, Great News! I went to Pain Management Clinic for some help with Cushing's rib pain, withdrawal pain and pain from the fractured vertebrae. I think I finally found the right place to go!! ....

    There should be a Pain Management Clinic in your area. I found mine in the Good Old Yellow Pages, or Ask your Endo. At these clinics they also offer other means of Pain Management such as bio-feedback, injections, non-narcotic med's, acupuncture, dietary classes, and counseling. Anyway, I hope this might help someone, I was at my wit's end and thought I would give it a shot, nothing ventured nothing gained!! I will keep you posted on My Venture."

     


    "I have been to two different pain clinics in my area. Both of those doctors are anesthesiologists. Therefore, they are more informed about drugs and know how they interact with other drugs and know what to do if you have a reaction to something. They are more apt to prescribe the drugs needed to control pain and enough of them. It's bad enough to have pain and even worse when your pc is afraid to prescribe the medications you need to control it or doesn't have enough knowledge in this area to do it. I would recommend a pain clinic for anyone who is in chronic pain."

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  • I am post-op pit surg 8 weeks. Gone from 50mg cortef per day to 15 mg per day. Not losing weight. Shouldn't I be?? Today face looks red, feeling edgie.

    People usually don't start losing weight right away after pituitary surgery - generally that happens around 6 months. If you get that far along and haven't lost anything, you should let your endocrinologist know.

    You probably have post-surgery appointments, too. Let him/her know of your concerns. It might be that you're going off the cortef too quickly and need to slow that down a bit - but check with your endo first.

    There are others on the message boards that voice these same concerns. You can read those - and participate, if you like - at Post Surgery Message Board

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  • I've finally been diagnosed and am going to have a transsphenoidal. What can I expect post-surgery?

    After Your Transsphenoidal Surgery

    After your physicians have determined that it is reasonably safe to discharge you from the hospital following transsphenoidal pituitary surgery there are a number of important situations that may arise. Most people feel well after discharge. However, you should be aware of these possible problems, just in case. The following general guidelines are provided to promote your health and safety.

    Headache, facial, and sinus pain are not uncommon following pituitary surgery. As you may have noted, the pain and discomfort typically improve on a daily basis following surgery. If you should experience a worsening of your pain or discomfort, please contact your neurosurgeon immediately.

    Worsening headache, fever, chills, yellowish green nasal discharge, and neck stiffness may all signify an infectious process complicating your surgery. You should notify either your neurosurgeon, endocrinologist, or primary physician immediately should any of these symptoms and signs develop.

    Persistent bloody, clear watery, or yellowish green nasal discharge should prompt an immediate call to one of your physicians.

    Development of abnormalities in your vision should prompt an urgent call to your neurosurgeon, neuroopthalmologist, or any other one of your physicians.

    Chest pain or discomfort, shortness of breath, swelling of one or both of your legs, and passage of dark black tarry stools may represent medical complications in patients who undergo surgery of any type. Contact your physicians should any of these symptoms or signs occur.

    Some patients develop disorders of salt and water metabolism following pituitary surgery. Headache, nausea, vomiting, confusion, impaired concentration, and muscle aches might be due to hyponatremia (low blood sodium levels). This disorder typically occurs 7 to 10 days after surgery and is more common in patients who have had surgery for Cushing's disease. If you develop these symptoms, contact your endocrinologist or one of your other physicians immediately. Excessive urination, thirst, and the need to ingest large quantities of fluids might be related to the onset of diabetes insipidus or diabetes mellitus. These disorders put you at risk for dehydration. The symptoms require urgent evaluation and determination of the underlying cause so that appropriate treatment may be given. Thus, if these symptoms develop, contact your endocrinologist or one of your other physicians immediately.

    You may or may not have been prescribed hormones at the time of discharge. If so, you should take these medications, without interruption, as prescribed by your physician. Adjustments in your glucocorticoid hormone dosage may be required. Please consult the instructions for patients with adrenal insufficiency for general recommendations. You may be asked to withhold your dose of glucocorticoid replacement at the time of your first postoperative follow-up visit. Contact your endocrinologist for advice on this matter if specific instructions have not been provided. The instructions for patients with hypothyroidism on thyroxine replacement may be consulted for advice regarding thyroid hormone medication. You should consult the instructions for patients with diabetes insipidus treated with vasopressin if you have been diagnosed with diabetes insipidus or suspect that you may have developed the disorder. Above all, contact your physicians if you have any questions whatsoever about any one of your medications.

    In general, the first postoperative follow-up visit will be scheduled to occur four weeks after surgery. If problems develop prior to that time, you will be asked to return to the office for evaluation. Subsequent follow-up is tailored to the individual needs of each patient and in part depends upon the diagnosis, presence of residual disease, likelihood of recurrent disease, extent and type of hormonal disorders, and other complications of pituitary disease.

    In most cases, lifelong follow-up is necessary. You should ensure that you receive appropriate follow-up by physicians knowledgeable regarding the diagnosis and management of pituitary disorders.

    From http://www.cushings-help.com/after_surgery.htm

    For other post surgery help, visit the Post Surgery Message Board

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  • I had pituitary surgery a while ago. Now my endo tells me I might need Growth Hormone. Can you tell me more about that?

    Adults need growth hormone too!

    Growth hormone (GH) is a protein hormone made by the pituitary, a hormone producing gland located at the base of the skull. The pituitary gland not only produces GH, but releases (secretes) GH into the bloodstream. After entering the bloodstream, GH attaches to certain tissues, especially bones, and results in height increase in children. Damage to the pituitary gland in children results in low GH secretion in children, resulting in poor growth and resultant short stature. GH can be given to children to restore their normal growth and development.

    Over the last ten years, it has been discovered that adults need GH too. Like children, adults can be given this hormone if deficient. The approval by the FDA to give GH to deficient adults has been in place for the last two years. Since adults have already achieved their genetically determined height, loss of GH does not impact height, but it does affect the body in many other ways. If adults have a deficiency of GH, major changes to the composition of the body results. These changes include loss of muscle, accumulation of fat, especially in the abdomen, and a decrease in the density (but not the length) of bones. Because GH is also necessary for normal brain function, adults without this hormone have psychological changes in addition. This article will focus on describing the GH deficiency syndrome as it applies to adults, and how it is currently diagnosed and treated.

    From GH Deficiency

    This information was developed by David Cook, M.D. It is not intended to substitute for a full and frank consultation with qualified medical personnel, which is the primary means for a patient to obtain care and treatment. The information was believed to be current on November 5, 1998 and with the lapse of time, certain of this material will be outdated.

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  • I have had pituitary surgery, why do I still have a problem and have to take radiation treatment and take medication?

    Some patients are not cured with surgery. The reasons for this are most commonly related to the size of the tumor: the larger the tumor, the less likely it can be removed completely.

    Additionally, the tumor may have spread to nearby structures such as bone, the cavernous sinus (location of carotid artery and nerves controlling eye movements) and the membrane surrounding the gland. In this situation, the surgeon removes all that can be safely removed, but if the tumor has invaded surrounding structures such as bone or the cavernous sinus or the membrane covering the pituitary, excessive growth hormone production may persist. Surgery is still the first step, since the medical treatments are not optimally effective in shrinking the tumor and if present, relieving pressure on the optic nerve.

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