Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 In a message dated 2/12/06 6:23:54 PM, mancoff@... writes: Talked to my surgeon about my AVS reaadings. Clearly the right adrenal is bad and the sampling on the left adrenal was not successful. He told me that there is a less than 5% chance that both adrenals are bad given the data on the right side and the fact that there is a tumor also on the right side. CEG: Without the data from both sides there is no way to back up this statement that I know of. Ask him for the published data on this statement. Ask him how many pts he has followed for 20 years? How may were cured with this set of findings? By cured we mean BP was normal after 20 years and renin and aldos were normal. My choices are: 1. Take the right adrenal out. Low risk of surgery. <5% chance that the left is bad and I have to go on drugs. Suggest he read the literature. No additional AVS with the associated risk (10% chance of problems according to one contributor) There is a team in Australia that has published results in 800 AVS but I don't have orig article to look at compilation rate. In experienced hands it seems to be low. How many has your guy done. Experienced in my book would mean he has done at least 30 AVS but the more the better. It is not an easy procedure as your first study documents. 2. Repeat the AVS. Could be bad data again. If the left is defective, go on drugs (same as #1). 3. Go on drugs. Lots of bad side affect with Spiro; may have bad side affects with Inspra in addition to lack of long term data. What is the long term data in his hands and others with surgery-esp in patients with incomplete AVS studies. The best data is from Australia and the Mayo clinic. We have prev had the abstracts in our past discussions. If you want to do this analysis yourself and with your Dr. you both will need to read: Clinical Epidemiology: A Basic Science for Clinical Medicine by Sackett et al. (Boston: Little, Brown and Co, 1992). You can get this from your local library or order used at Amazon perhaps. I have used this book to teach these concepts since it first came out. It is a paper and pencil book that takes a lot reading and thinking but with about 6 weeks of work you will up and ready to do this pretty well and if you work with your health care team they will learn how to do this as well. I have an old publication on this but have not updated it. Will look into it in fact as it is time to do it again. Perhaps your case can serve as the teaching point for this. Here is the only cost benefit I found but have not read the complete article. I did find about 1800 articles on surgery in PA. in PUB MED so there is a lot of data to be compiled. Long-term follow-up and cost benefit of adrenalectomy in patients with primary hyperaldosteronism. Sywak M, Pasieka JL. Tom Baker Cancer Center and University of Calgary, and Division of General Surgery and Division of Surgical Oncology, University of Calgary, Calgary, Alberta, Canada. BACKGROUND: The purpose of this study was to evaluate the long-term efficacy of adrenalectomy on blood pressure control in patients with primary hyperaldosteronism (HA), and to analyse the cost of adrenalectomy compared with non-surgical management of HA over the patient's lifetime. METHODS: All patients who underwent an adrenalectomy for HA were recalled to the endocrine surgical clinic. Data gathered included blood pressure, aldosterone : renin ratios and medication. Total costs for adrenalectomy and ongoing medications were compared with the estimated costs of lifelong medical therapy alone. RESULTS: Twenty-four adrenalectomies were performed for HA, with one death. CEG Comments; This seems like a high death rate to me 1/25, but maybe that is just in Canada. The mean follow-up was 42 (range 13-97) months. Long term, there was a significant decrease in both the mean diastolic and systolic blood pressure. The aldosterone : renin ratio decreased in 21 patients. Of these patients, 20 were either off all antihypertensives (eight) or had a reduction in medication (12). CEG comments: So 8/24 were cured. An increased aldosterone : renin ratio occurred in two patients, both of whom required an increase in antihypertensive medication. Using the predicted life expectancy, the mean estimated cost savings over the lifetime of each patient undergoing adrenalectomy compared with medication alone was Canadian $31 132. CONCLUSION: Adrenalectomy for HA resulted in significant long-term reduction in blood pressure. Adrenalectomy for HA is a significantly less expensive than long-term medical therapy alone. IT is basically a branching process in which one needs data at each branch point. It would start like this Pt has AVS that only sampled the side with a "tumor" on it by CT. and the patient and Dr wants to know what is the best (on the average) course of action. Surgery or medical therapy? So now the outcome of the decision begins and we need to know the estimated probablities of each outcome from the literature or trials. There are no trials in this area we will need to know the literature. Note that I am giving a knowledge based estimates (based on my 40 years of experience in this area and my memory at this point) without a current systematic review of the worlds published literature on PA. Decision: Sugery Outcome1: Bad: dead-we need to know the prob of dying form this type of surgery. Must be rare but lets say 1 in 10,000. You need to decide what risk of dying am I and my family are willing to accept to estimate what is called the utility of dying or not dying. Good Not dead: the probablity of this is 1- prob of being dead. For cost analysis we need cost of surgery: I dont know what this is on the average, but your Dr should be able to tell you. Ask for all related costs for the first year. The insurance company should be able to give you an average as well one would think but probably won't. One could do a Medicare analsysis of this but no one has that I know of. Outcome 2: BAD: Severe complication of surgery: (stroke, MI, renal failure, etc) again rare but not zero. Need costs for each severe out come. Renal failure for example costs $60,000 per year to treat. GOOD: no severe complicaiton of surgery: the probabilty of this is 1- prob of bad outcome Outcome 3: BAD: not cured. Figure lifetime costs of Rx in $ and side effects based on the literature. cured no further costs need prob of this given what we started with. As you can see while this is a realtively straight forward process it takes a lot of review to do it right. I dont have time to do it now-for example one would want to look at most of the 1800 publications on surgery in PA. If one had a big team this could be done in say several months. One the other had if we have 400 members on our site and each one reviewede say 4 articles over the next week we could do this part in a week. We would need to train everyone on how to scan the article, which data to tabulate etc. and there are rules on how to do this. Anyway lets see if we can work on this more later. CE Grim MD Hypertension Consulting not cured serious complication die Medical Rx Might but the current data suggests that drug Rx is at least as good as surgery. There has never been a proper trial to compare surgery to no surgery. So we really have no hard data on what is the best. Suggest you and he read Dr. Bravo's long term drug Rx experience from the Cleveland Clinic. I very much do not like option 3. Balancing the risks of surgery vs. addional one or more AVS procedure(s), surgery seems to be the best choice for me. The choice is between you and your Dr. What you need to ask for is a cost benefit analysis so that you can work out what is the best choice-on the average. When it comes down to the individual pt past experience only gives us an estimate of how things will turn out-not a guarantee. Comments?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 > FWIW. Surgury is always risky, and you can't reverse a proceedure once done. You really are not it a rush situation. Take the Inspra. It was developed specificly as an aldosterone blocker, unlike all the mineral corticoids, like spiro. I've been on it for better than three year, after being on spiro with the typical side effects. No side effects on Inspra, and BP is 120/80 on 50 mg. If you don't do well on it long term, schedual the operation. There's nothing wrong with a step by step approach. Wayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Your suggestion of a data search is a good idea. One can do an analysis based on cost (my HMO would be interested). However, my interest is not on cost but on quality of life. With data on death rate, non-fatal surgery/AVS screw ups, side effects, cost, availability of qualified personnel, etc., one may make conclusions based on either quality of life or cost. It seems worth the time of a group of grad students. Right now we all seem to be making fairly uninformed decisions. > > > In a message dated 2/12/06 6:23:54 PM, mancoff@... writes: > > > > Talked to my surgeon about my AVS reaadings. Clearly the right adrenal > > is bad and the sampling on the left adrenal was not successful. He > > told me that there is a less than 5% chance that both adrenals are bad > > given the data on the right side and the fact that there is a tumor > > also on the right side. > > > CEG: Without the data from both sides there is no way to back up this > statement that I know of. Ask him for the published data on this statement. > > Ask him how many pts he has followed for 20 years? How may were cured with > this set of findings? > > By cured we mean BP was normal after 20 years and renin and aldos were > normal. > > > > > > My choices are: > > 1. Take the right adrenal out. Low risk of surgery. <5% chance that the > > left is bad and I have to go on drugs. > > > Suggest he read the literature. > > > No additional AVS with the > > associated risk (10% chance of problems according to one contributor) > > > There is a team in Australia that has published results in 800 AVS but I > don't have orig article to look at compilation rate. In experienced hands it > seems to be low. How many has your guy done. Experienced in my book would > mean he has done at least 30 AVS but the more the better. It is not an easy > procedure as your first study documents. > > > > 2. Repeat the AVS. Could be bad data again. If the left is defective, > > go on drugs (same as #1). > > > > > 3. Go on drugs. Lots of bad side affect with Spiro; may have bad side > > affects with Inspra in addition to lack of long term data. > > > What is the long term data in his hands and others with surgery- esp in > patients with incomplete AVS studies. The best data is from Australia and the Mayo > clinic. We have prev had the abstracts in our past discussions. > > If you want to do this analysis yourself and with your Dr. you both will need > to read: > > Clinical Epidemiology: A Basic Science for Clinical Medicine by > Sackett et al. (Boston: Little, Brown and Co, 1992). You can get this from > your local library or order used at Amazon perhaps. > > I have used this book to teach these concepts since it first came out. It is > a paper and pencil book that takes a lot reading and thinking but with about 6 > weeks of work you will up and ready to do this pretty well and if you work > with your health care team they will learn how to do this as well. > > I have an old publication on this but have not updated it. Will look into > it in fact as it is time to do it again. Perhaps your case can serve as the > teaching point for this. > > Here is the only cost benefit I found but have not read the complete article. > I did find about 1800 articles on surgery in PA. in PUB MED so there is > a lot of data to be compiled. > > Long-term follow-up and cost benefit of adrenalectomy in patients with > primary hyperaldosteronism. > > Sywak M, Pasieka JL. > > Tom Baker Cancer Center and University of Calgary, and Division of General > Surgery and Division of Surgical Oncology, University of Calgary, Calgary, > Alberta, Canada. > > BACKGROUND: The purpose of this study was to evaluate the long- term efficacy > of adrenalectomy on blood pressure control in patients with primary > hyperaldosteronism (HA), and to analyse the cost of adrenalectomy compared with > non-surgical management of HA over the patient's lifetime. > > METHODS: All patients who underwent an adrenalectomy for HA were recalled to > the endocrine surgical clinic. Data gathered included blood pressure, > aldosterone : renin ratios and medication. Total costs for adrenalectomy and ongoing > medications were compared with the estimated costs of lifelong medical therapy > alone. > > RESULTS: Twenty-four adrenalectomies were performed for HA, with one death. > > CEG Comments; This seems like a high death rate to me 1/25, but maybe that is > just in Canada. > > The mean follow-up was 42 (range 13-97) months. Long term, there was a > significant decrease in both the mean diastolic and systolic blood pressure. > > The aldosterone : renin ratio decreased in 21 patients. Of these patients, 20 > were either off all antihypertensives (eight) or had a reduction in > medication (12). > > CEG comments: So 8/24 were cured. > > An increased aldosterone : renin ratio occurred in two patients, both of whom > required an increase in antihypertensive medication. Using the predicted life > expectancy, the mean estimated cost savings over the lifetime of each patient > undergoing adrenalectomy compared with medication alone was Canadian $31 132. > > > CONCLUSION: Adrenalectomy for HA resulted in significant long-term reduction > in blood pressure. Adrenalectomy for HA is a significantly less expensive than > long-term medical therapy alone. > > > IT is basically a branching process in which one needs data at each branch > point. > > > It would start like this > > Pt has AVS that only sampled the side with a " tumor " on it by CT. and the > patient and Dr wants to know what is the best (on the average) course of > action. Surgery or medical therapy? > > > So now the outcome of the decision begins and we need to know the estimated > probablities of each outcome from the literature or trials. There are no > trials in this area we will need to know the literature. > > Note that I am giving a knowledge based estimates (based on my 40 years of > experience in this area and my memory at this point) without a current > systematic review of the worlds published literature on PA. > > Decision: Sugery > > Outcome1: Bad: dead-we need to know the prob of dying form this > type of surgery. Must be rare but lets say 1 in 10,000. You need to decide > what risk of dying am I and my family are willing to accept to estimate what is > called the utility of dying or not dying. > > Good Not dead: the probablity of this is 1- prob of > being dead. > > For cost analysis we need cost of surgery: I dont know what this is on the > average, but your Dr should be able to tell you. Ask for all related costs > for the first year. The insurance company should be able to give you an > average as well one would think but probably won't. One could do a Medicare > analsysis of this but no one has that I know of. > > > > Outcome 2: BAD: Severe complication of surgery: (stroke, MI, renal > failure, etc) again rare but not zero. Need costs for each severe out come. > Renal failure for example costs $60,000 per year to treat. > GOOD: no severe complicaiton of surgery: the probabilty of > this is 1- prob of bad outcome > > Outcome 3: BAD: not cured. Figure lifetime costs of Rx in $ and side > effects based on the literature. cured no further costs need prob of this > given what we started with. > > As you can see while this is a realtively straight forward process it takes a > lot of review to do it right. I dont have time to do it now-for example one > would want to look at most of the 1800 publications on surgery in PA. If > one had a big team this could be done in say several months. One the other had > if we have 400 members on our site and each one reviewede say 4 articles over > the next week we could do this part in a week. We would need to train > everyone on how to scan the article, which data to tabulate etc. and there are > rules on how to do this. > > Anyway lets see if we can work on this more later. > > CE Grim MD > > Hypertension Consulting > > > > > > > > > not cured > serious complication > die > > Medical Rx > > Might but the current data suggests that drug Rx is at least as good as > surgery. There has never been a proper trial to compare surgery to no surgery. So > we really have no hard data on what is the best. Suggest you and he read > Dr. Bravo's long term drug Rx experience from the Cleveland Clinic. > > > > > > I very much do not like option 3. Balancing the risks of surgery vs. > > addional one or more AVS procedure(s), surgery seems to be the best > > choice for me. > > > The choice is between you and your Dr. What you need to ask for is a cost > benefit analysis so that you can work out what is the best choice- on the > average. > > When it comes down to the individual pt past experience only gives us an > estimate of how things will turn out-not a guarantee. > > > > Comments?? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hi , I live in Oakville and my son's surgery was performed by Dr. Pashby at 8 weeks old. Dr. Pashby rushed the surgery date given the severity of my son's bleph and was concerned about the vision stimulation he was receiving. (We're Korean and Chinese so the eye opening was even smaller than usual). Follow up visit was a Thursday and surgery was booked for the next Monday or Tuesday, (i forget). You'll read a lot of postings that say the surgery date is very dependant upon the amount of vision the individual is receiving right now. Waiting can be a good thing as it allows the face to grow as long as the brain's ability to teach the eyes to see, by way of visual stimulation, is not being impaired. It's difficult to know how much to 'pull up' the eye lids, artificial vs own tissue for the slings, dry eyes, etc. Push the doctors for some kind of determination if your son's ability to see is being impacted. If so, push for the surgery sooner than later and try to go with the doctor who has performed this the most, preferably pediatric. If vision is not being impacted, another parent has used surgical tape to lift the eyelids for a few hours a day to ensure vision is not being impacted. Go with your gut instinct and be a strong advocate for your son's vision as what you do and don't do now will impact him later. I hope this helps as I know how frustrating it is not to have answers and not knowing what to do. Feel free to contact me separately if you like. Evergreen Lee 397 Freeman Crescent, Oakville, ON L6H 4R4 Phone: 905 338-8762 Fax: 905 338-1157 Cell: 416 526-7581 blepharophimosis From: kathryn.milner@...Date: Thu, 18 Dec 2008 15:30:46 +0000Subject: blepharophimosis Surgery Decision Hello All..Our son will be 1 year old on January 3rd, 2009. We have been to see three surgeons over the past year. Dr. Pashby in Toronto, Dr. Deangelis in Toronto and Dr. Gilberg at CHEO in Ottawa. We are unsure as to who is the best person to do 's surgery. We were told it would take over 1 year to get a surgery booked at Sick Kids in Toronto. Ottawa would take him right away.We look forward to hearing any recommendations.Sincerely, Share your holiday memories for free with Windows LiveT Photos. Get started now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Dr. Pashby was my son's surgeon 18 years ago. He has a lot of experience with BEPS children. If is seeing fairly well, it may not hurt to wait. Clay > > Hello All.. > Our son will be 1 year old on January 3rd, 2009. We have been > to see three surgeons over the past year. Dr. Pashby in Toronto, Dr. > Deangelis in Toronto and Dr. Gilberg at CHEO in Ottawa. We are unsure > as to who is the best person to do 's surgery. We were told it > would take over 1 year to get a surgery booked at Sick Kids in > Toronto. Ottawa would take him right away. > We look forward to hearing any recommendations. > Sincerely, > > Quote Link to comment Share on other sites More sharing options...
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