***
Hi everyone. Day 4 in the hospital, and I am doing well. I'm really sleepy, so I will post the highest of highlights, then I'll scoot.
From Neurosurgeon Jukebox Hero:
---NS found a 3 millimeter tumor on the left, just like he saw on both 3T MRIs. My IPSS in November 2007 confirmed the pituitary as the source of excess ACTH production, which is the purpose of the IPSS test. IPSS show lateralization, or which side of the pituitary the tumor is on--only 85% of the time. In my case, my IPSS showed the tumor on the right; but since my NS saw the tumor on the left, just like in the higher powered 3T MRIs. So my IPSS fell in the 15% category of the IPSS failing to show accurate lateralize. The NS located a tumor only on the left. He did explore all around the gland, looking for any other tumors, but he said "my anterior and posterior pituitary lobes were easily separated" and it's why he thinks I didn't face diabetes insipidis or DI. This is different from sugar diabetes. Both the NS and e endocrinologist say that DI usually shows up in the first 48 post op. It is now nearly 72 hours post up. Yay!! Endo did mention that if I started getting up 3 to 4 times a night to urinate, it could be DI. I am supposed to notify her and she will call in the prescription for oral DVAPT.
[BLOGGER'S NOTE: In April 2011, another neurosurgeon at MD Anderson Cancer Center in Houston removed a 3 millimeter tumor on the right side of my pituitary. So, IPSS was correct after all.]
--- NS did not use a fat plug.
--- NS said there is less than 1% chance that I will develop a CSF leak or cerebral spinal fluid leak.
---he said my tumor was the classic Cushing's tumor. It was encapsulated nicely but when he resected or cut it open, there was a milky liquid inside. It even ran out of tumor some. He scooped out tumor, milky liquid, and a little bit of normal tissue to ensure he got all of the dastardly Cushing's cells. Pathology report is expected within a week or so. Surgeon is confident it was Cushing's aka ACTH-secreting pituitary tumor.
--- he worked with the ENT during surgery. ENT cut through the sinus, then the neurosurgeon punched through the sella turcica on to the pituitary. So, after NS removed tumor, ENT placed stitches to close off incision sites in sinus, then stitched in stints to keep my nose aligned, then placed tampon-like packing into both nostrils to catch blood coming from incision. After only 12 hours post op, the neuro critical care nurse removed the bloody cotton tampon things the next morning after a quick hit of 2mg morphine. Not too bad, really.
---he said he bets I have been educating all the nurses. I told him he was correct. Then he said they should put me out on the conference circuit so I can present my story to educate more doctors. I told him I would love to do that. I see Vanna White booth time and waving in my future!
Showing posts with label post-op. Show all posts
Showing posts with label post-op. Show all posts
Sunday, June 14, 2009
Saturday, June 6, 2009
TAPERING YOUR DOSE OF CORTISOL REPLACEMENT POST OP
I have not actually done the wean itself yet. It comes after pituitary surgery!!
I found this helpful in explaining the overall hormone replacement process, and why it is "common" for Cushies to end up in the ER after pituitary surgery. I cannot attest to the tapering schedule and amounts of hydrocortisone to take and when. Please consult with your doctor. ~Melissa
******************
TAPERING YOUR DOSE OF CORTISOL REPLACEMENT POST OP: From Oregon Health and Science University
The experience of cortisol withdrawal during the first several months after being cured of Cushing's can be very unpleasant. During this period, cortisol must be given back to the patient and then tapered off over time. Classic symptoms of this withdrawal process include fatigue, aching, and depression. Abdominal pain, nausea and vomiting, and dizziness are indicators that the cortisol withdrawal is occurring too quickly (adrenal insufficiency is occurring) and the hydrocortisone taper should be slowed.
There are two main phases that a cured patient will go through after surgery. The first is the cortisol withdrawal phase. The features of Cushing's disease are due to cortisol excess and the body reacts to having the cortisol withdrawn. To make the process tolerable (and safe), large doses of glucocorticoids are given to the postoperative patient and then tapered over a month or so as symptoms allow. This can be an awful experience for the patient marked by fatigue, depression, and body aches. Headache may be present but if severe (especially if accompanied by nausea and dizziness) may indicate that the taper is happening to quickly. After the initial withdrawal phase, the second phase is marked by the temporary need for continued glucocorticoid replacement (typically 20 mg hydrocortisone or 5 mg prednisone) until the hypothalamic/pituitary/adrenal (HPA) axis awakens. This phase may last many months and may last over a year. Until this axis awakens, the patient is adrenally insufficient and should be treated accordingly.
Assessment of Cure
Just as the initial diagnosis of Cushing's disease can be difficult to make, "proving" someone has been cured of Cushing's can be very challenging as well. One early indicator of biochemical cure is the measurement of very low (or undetectable) post-operative morning cortisol levels (typically measured 72 hours after surgery). In this post-operative setting, morning cortisol levels are typically low because normal ACTH producing cells in the pituitary have been suppressed by elevated serum cortisol levels. Therefore, the removal of the ACTH secreting tumor leaves no source of ACTH, the adrenal glands are no longer stimulated and cortisol levels plummet. It is important to note that as high as 30% of patients with long term cure of cushing's disease do not have a history of undetectable 72 hour post-operative serum cortisol levels. Therefore, if 72-hour post-operative cortisols are not below 5 ug/dl, further evidence should be obtained to confirm the presence or absence of cure.
After a patient has been tapered off replacement glucocorticoids post-operatively, it is important to demonstrate the normalization of the tests that were initially used to diagnose Cushing's disease. For example if a patient had a significantly elevated 24-hour UFC pre-operatively, it should normalize if a cure was obtained. Other evidence of cure is the dramatic resolution of the features of Cushing's disease. For example, many patients note a dramatic weight reduction in the first few months after surgery. By contrast, even in the context of a biochemical cure, features may resolve slowly. Even in the context of a biochemical cure, the symptoms of fatigue and depression can persist for many months since they are also the symptoms of cortisol withdrawal. It is important to note that even with an incomplete cure (i.e., not all the pituitary tumor was removed), many symptoms will begin to resolve at first but they usually return over time.
In general, when a cure is obtained, most of the features of Cushing's disease will reverse over time. Some of these changes can be dramatic. Some may take years. Of note, the need for medical treatment for high blood pressure and diabetes should be evaluated closely and will likely need to be tapered.
Finally, even in the hands of an excellent neurosurgeon, there is a recurrence rate of about 10% over time for Cushing's disease. Therefore, even in the context of a "biochemical cure", Cushing's patients should be monitored by history, physical, and biochemistry over time for possible recurrence of their disease. Work up and treatment are similar to those done at initial presentation.
Long-term Course and Potential Complications
Cured Cushing's are typically delighted with the resolution of most of their Cushing's symptoms. This can, however, take from months to even years to fully happen. As stated above, recurrence does occur and should be watched for by the patient and their clinician. Associated diseases such as diabetes mellitus, hypertension, and osteoporosis should be followed (and treated if necessary) although each may resolve fully over time as well.
************************************
TAPERING YOUR DOSE OF CORTISOL REPLACEMENT POST OP, Cushing's Research and Support Foundation
Question: I have been trying to taper my replacement dose of hydrocortisone following pituitary surgery, and I have ended up in the Emergency Room several times due to adrenal insufficiency. I have been told that for my adrenal gland to start producing cortisol and working properly again, I need to be this low. Is that true? What tapering protocol would you recommend and what tests should be performed during the tapering phase?
Answer: These are very good questions. Tapering of hydrocortisone following the removal of an ACTH-producing pituitary tumor, bilateral adrenalectomy or a single Cortisol secreting adrenal tumor results in profound hypothalamic pituitary adrenal suppression, especially when it is successful. The reawakening of this axis may take six to nine months, sometimes longer.
In the interim, patients need to be replaced with glucocorticoid therapy. There is an additional confounding problem and that is when you have Cushing's, your body gets used to higher doses of glucocorticoids; therefore, such high doses need to be continued above replacement doses immediately after surgery and then slowly tapered.
Right after surgery we replace with Hydrocortisone 60 to 80 mg a day for two weeks and start a taper, diminishing 10 to 20 mg every 10 to 14 days, until you are down to physiologic, which is in the neighborhood of 15 to 20 mg per day.
We like to do a Cortrosyn stimulation test every two months to plot the hypothalamic pituitary adrenal recovery. Morning plasma cortisol before taking oral cortisone may also be useful, but we prefer the cortrosyn test. Once the Cortrosyn stimulation test is in the normal range, then Hydrocortisone can be safely discontinued, or tapered to a lower dose, then discontinued.
We do not suggest longer acting steroids, such as Prednisone, which might further prolong pituitary adrenal suppression. The use of Hydrocortisone alone is what is suggested immediately after successful surgery. There is not only a need for Glucocorticoid replacement to avoid adrenal insufficiency, there is a withdrawal from the high endogenous levels. When you withdraw from steroids, even though you are in the normal range for replacement, you will have symptoms of steroid withdrawal which include fatigue, depression, and muscle and joint aching. This is why endocrinologists will tell you that you will feel worse from steroid withdrawal after successful surgery than you felt with the Cushing's syndrome. The steroid withdrawal symptoms can last up to two years and they are again, fatigue, depression, and aching.
There is no good evidence that taking less steroid, or no steroid, accelerates the hypothalamic pituitary adrenal axis recovery. Certainly you cannot use high doses without continuing to suppress the pituitary adrenal axis, but in general, completely stopping steroids is not suggested, since adrenal insufficiency would be predicted under those sets of circumstances and also aggravation of severe withdrawal symptomatology.
In summary, it is important to treat adrenal insufficiency symptoms of lightheadedness and nausea, and also distinguish that from steroid withdrawal symptoms, which are fatigue, depression, and achiness, even though you might be protected from adrenal insufficiency.
I found this helpful in explaining the overall hormone replacement process, and why it is "common" for Cushies to end up in the ER after pituitary surgery. I cannot attest to the tapering schedule and amounts of hydrocortisone to take and when. Please consult with your doctor. ~Melissa
******************
TAPERING YOUR DOSE OF CORTISOL REPLACEMENT POST OP: From Oregon Health and Science University
The experience of cortisol withdrawal during the first several months after being cured of Cushing's can be very unpleasant. During this period, cortisol must be given back to the patient and then tapered off over time. Classic symptoms of this withdrawal process include fatigue, aching, and depression. Abdominal pain, nausea and vomiting, and dizziness are indicators that the cortisol withdrawal is occurring too quickly (adrenal insufficiency is occurring) and the hydrocortisone taper should be slowed.
There are two main phases that a cured patient will go through after surgery. The first is the cortisol withdrawal phase. The features of Cushing's disease are due to cortisol excess and the body reacts to having the cortisol withdrawn. To make the process tolerable (and safe), large doses of glucocorticoids are given to the postoperative patient and then tapered over a month or so as symptoms allow. This can be an awful experience for the patient marked by fatigue, depression, and body aches. Headache may be present but if severe (especially if accompanied by nausea and dizziness) may indicate that the taper is happening to quickly. After the initial withdrawal phase, the second phase is marked by the temporary need for continued glucocorticoid replacement (typically 20 mg hydrocortisone or 5 mg prednisone) until the hypothalamic/pituitary/adrenal (HPA) axis awakens. This phase may last many months and may last over a year. Until this axis awakens, the patient is adrenally insufficient and should be treated accordingly.
Assessment of Cure
Just as the initial diagnosis of Cushing's disease can be difficult to make, "proving" someone has been cured of Cushing's can be very challenging as well. One early indicator of biochemical cure is the measurement of very low (or undetectable) post-operative morning cortisol levels (typically measured 72 hours after surgery). In this post-operative setting, morning cortisol levels are typically low because normal ACTH producing cells in the pituitary have been suppressed by elevated serum cortisol levels. Therefore, the removal of the ACTH secreting tumor leaves no source of ACTH, the adrenal glands are no longer stimulated and cortisol levels plummet. It is important to note that as high as 30% of patients with long term cure of cushing's disease do not have a history of undetectable 72 hour post-operative serum cortisol levels. Therefore, if 72-hour post-operative cortisols are not below 5 ug/dl, further evidence should be obtained to confirm the presence or absence of cure.
After a patient has been tapered off replacement glucocorticoids post-operatively, it is important to demonstrate the normalization of the tests that were initially used to diagnose Cushing's disease. For example if a patient had a significantly elevated 24-hour UFC pre-operatively, it should normalize if a cure was obtained. Other evidence of cure is the dramatic resolution of the features of Cushing's disease. For example, many patients note a dramatic weight reduction in the first few months after surgery. By contrast, even in the context of a biochemical cure, features may resolve slowly. Even in the context of a biochemical cure, the symptoms of fatigue and depression can persist for many months since they are also the symptoms of cortisol withdrawal. It is important to note that even with an incomplete cure (i.e., not all the pituitary tumor was removed), many symptoms will begin to resolve at first but they usually return over time.
In general, when a cure is obtained, most of the features of Cushing's disease will reverse over time. Some of these changes can be dramatic. Some may take years. Of note, the need for medical treatment for high blood pressure and diabetes should be evaluated closely and will likely need to be tapered.
Finally, even in the hands of an excellent neurosurgeon, there is a recurrence rate of about 10% over time for Cushing's disease. Therefore, even in the context of a "biochemical cure", Cushing's patients should be monitored by history, physical, and biochemistry over time for possible recurrence of their disease. Work up and treatment are similar to those done at initial presentation.
Long-term Course and Potential Complications
Cured Cushing's are typically delighted with the resolution of most of their Cushing's symptoms. This can, however, take from months to even years to fully happen. As stated above, recurrence does occur and should be watched for by the patient and their clinician. Associated diseases such as diabetes mellitus, hypertension, and osteoporosis should be followed (and treated if necessary) although each may resolve fully over time as well.
************************************
TAPERING YOUR DOSE OF CORTISOL REPLACEMENT POST OP, Cushing's Research and Support Foundation
Question: I have been trying to taper my replacement dose of hydrocortisone following pituitary surgery, and I have ended up in the Emergency Room several times due to adrenal insufficiency. I have been told that for my adrenal gland to start producing cortisol and working properly again, I need to be this low. Is that true? What tapering protocol would you recommend and what tests should be performed during the tapering phase?
Answer: These are very good questions. Tapering of hydrocortisone following the removal of an ACTH-producing pituitary tumor, bilateral adrenalectomy or a single Cortisol secreting adrenal tumor results in profound hypothalamic pituitary adrenal suppression, especially when it is successful. The reawakening of this axis may take six to nine months, sometimes longer.
In the interim, patients need to be replaced with glucocorticoid therapy. There is an additional confounding problem and that is when you have Cushing's, your body gets used to higher doses of glucocorticoids; therefore, such high doses need to be continued above replacement doses immediately after surgery and then slowly tapered.
Right after surgery we replace with Hydrocortisone 60 to 80 mg a day for two weeks and start a taper, diminishing 10 to 20 mg every 10 to 14 days, until you are down to physiologic, which is in the neighborhood of 15 to 20 mg per day.
We like to do a Cortrosyn stimulation test every two months to plot the hypothalamic pituitary adrenal recovery. Morning plasma cortisol before taking oral cortisone may also be useful, but we prefer the cortrosyn test. Once the Cortrosyn stimulation test is in the normal range, then Hydrocortisone can be safely discontinued, or tapered to a lower dose, then discontinued.
We do not suggest longer acting steroids, such as Prednisone, which might further prolong pituitary adrenal suppression. The use of Hydrocortisone alone is what is suggested immediately after successful surgery. There is not only a need for Glucocorticoid replacement to avoid adrenal insufficiency, there is a withdrawal from the high endogenous levels. When you withdraw from steroids, even though you are in the normal range for replacement, you will have symptoms of steroid withdrawal which include fatigue, depression, and muscle and joint aching. This is why endocrinologists will tell you that you will feel worse from steroid withdrawal after successful surgery than you felt with the Cushing's syndrome. The steroid withdrawal symptoms can last up to two years and they are again, fatigue, depression, and aching.
There is no good evidence that taking less steroid, or no steroid, accelerates the hypothalamic pituitary adrenal axis recovery. Certainly you cannot use high doses without continuing to suppress the pituitary adrenal axis, but in general, completely stopping steroids is not suggested, since adrenal insufficiency would be predicted under those sets of circumstances and also aggravation of severe withdrawal symptomatology.
In summary, it is important to treat adrenal insufficiency symptoms of lightheadedness and nausea, and also distinguish that from steroid withdrawal symptoms, which are fatigue, depression, and achiness, even though you might be protected from adrenal insufficiency.
PITUITARY SURGERY: Post-Op FAQs
After surgery FAQs, from Cushing's Help and Support
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.
********
Once again, MaryO has done a wonderful job organizing the Cushing's Help and Support website to help us Cushies access info when we need it. Thanks, Mary!
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.
********
Once again, MaryO has done a wonderful job organizing the Cushing's Help and Support website to help us Cushies access info when we need it. Thanks, Mary!
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