Guest guest Posted July 11, 2012 Report Share Posted July 11, 2012 Hi Monika, you sound like me - " Mischa " kept an eye on me after all of my procedures. He walks on 4 legs and is pretty darned smart, but even if he could dial 911, all he could have said would have been " meow " I'll let the experts speak to the right adrenal issue before I make any comments on that. But as for not being able to stand, sit or walk for any length of time after AVS - I had no restrictions beyond the first 24 hours, both times. Each time I had it done on a Friday, took it easy on Saturday, and by Sunday I was back to my normal activity. I can't imagine that walking wouldn't be a good thing - even after my adrenalectomy, they had me up and walking as soon and as much as I was able. > > Hi All, > The hospital was not going to release me yesterday if I was going to be home alone. I told them " Annie " would be keeping an eye on me for the night. They didn't need to know that Annie is a basset hound and doesn't know how to dial 911 or drive me to a hospital. LOL. > The doctor doing the AVS was not able to go into my right adrenal. She said the vein to the right side was so small the catheter either came out or the blood clotted. I could be mis-quoting here, I was still kind of loopy when she came to see me. So she took sample from the veina cava. Sample from the left she got easily. She said if level from left (with tumor) and from the veina cava are very off, then it would mean yes, tumor is causing levels to be off. If levels are only off a little between the two--then no it's not the tumor. So, I wasn't happy to hear about her not being able to get a sample from the right side. > Does discrepancy in size of veins from one side of glands to the other indicate anything or is this type of variety in vein size common? At different times I was present enough that I could hear her asking for what sounded like different sizes of something (I guess tubing?). Then they would give me more sedative and I'd fade off again. She said my BP went up a bit during procedure. But during post-op it was in the usual " normal " for me--in the 116/60s range. Yes, they did ACTH. I asked. > Now I wait TWO WEEKS (!) for results because they have to send out the sampling for analysis. The waiting game. > Also, AVS doctor said no one in my county does laproscopic or robotic adrenalectomies. Only place around here is down in LA at UCLA, USC, or Cedars-Sinai. So, if that is the route, I would have to take it up with my insurance to go outside of my IPA. > I was in post-op with the angiogram patients. Said I can't lift anything over 10 lbs. or stand or sit at a chair for more than an hour for three days? I'm dieing of boredom and inactivity! Isn't it better to do some walking if the idea is to avoid blood clots/hematomas? > Thanks for all the good feedback! > Monika > P.S. naturopathic doctor recommended eating Vitamin C/anti-oxidant rich foods after the AVS to scavenge free radicals from the radiation/contrast dye. Have been enjoying my raspberries and blueberries. Just a tip to pass on to others getting AVS or CT/MRI scans. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2012 Report Share Posted July 11, 2012 I would avoid the naturopathic recommendation as it is mostly humbug.But nothing wrong with eating rass and blues.So what country are you in that they do not do laps?The AVS Dr was trying to get a catheter to find the right adrenal vein which is always the most difficult to the uninitiated or unskilled. How many had she done?Let us see your results before you make any decision.Did she use 2 caths at the same time so one can draw both sides at the same time. I have recommended this since the 80s, but not always done.CE Grim MD On Jul 11, 2012, at 3:21 PM, Monika Del Bosque wrote: Hi All,The hospital was not going to release me yesterday if I was going to be home alone. I told them "Annie" would be keeping an eye on me for the night. They didn't need to know that Annie is a basset hound and doesn't know how to dial 911 or drive me to a hospital. LOL.The doctor doing the AVS was not able to go into my right adrenal. She said the vein to the right side was so small the catheter either came out or the blood clotted. I could be mis-quoting here, I was still kind of loopy when she came to see me. So she took sample from the veina cava. Sample from the left she got easily. She said if level from left (with tumor) and from the veina cava are very off, then it would mean yes, tumor is causing levels to be off. If levels are only off a little between the two--then no it's not the tumor. So, I wasn't happy to hear about her not being able to get a sample from the right side. Does discrepancy in size of veins from one side of glands to the other indicate anything or is this type of variety in vein size common? At different times I was present enough that I could hear her asking for what sounded like different sizes of something (I guess tubing?). Then they would give me more sedative and I'd fade off again. She said my BP went up a bit during procedure. But during post-op it was in the usual "normal" for me--in the 116/60s range. Yes, they did ACTH. I asked.Now I wait TWO WEEKS (!) for results because they have to send out the sampling for analysis. The waiting game. Also, AVS doctor said no one in my county does laproscopic or robotic adrenalectomies. Only place around here is down in LA at UCLA, USC, or Cedars-Sinai. So, if that is the route, I would have to take it up with my insurance to go outside of my IPA. I was in post-op with the angiogram patients. Said I can't lift anything over 10 lbs. or stand or sit at a chair for more than an hour for three days? I'm dieing of boredom and inactivity! Isn't it better to do some walking if the idea is to avoid blood clots/hematomas?Thanks for all the good feedback!MonikaP.S. naturopathic doctor recommended eating Vitamin C/anti-oxidant rich foods after the AVS to scavenge free radicals from the radiation/contrast dye. Have been enjoying my raspberries and blueberries. Just a tip to pass on to others getting AVS or CT/MRI scans. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 I think all her Drs are full of humbug. They did AVS without doing any bloodtests to see what her aldo/renin was. No test was done to see what her renin was. Now AVS wasn't done right as right adrenal blood not taking. Instead they are going to compair blood from left adrenal and veina cava. From Wikipedia The superior vena cava (also known as the cava or cva) is a large diameter, yet short, vein that carries deoxygenated blood from the upper half of the body to the heart's right atrium. It is located in the anterior right superior mediastinum. How is going to tell right side is not making to much Aldo? If there is right side blood clot can this kill right adrenal? > > > Hi All, > > > > The hospital was not going to release me yesterday if I was going to > > be home alone. I told them " Annie " would be keeping an eye on me > > for the night. They didn't need to know that Annie is a basset > > hound and doesn't know how to dial 911 or drive me to a hospital. > > LOL. > > > > The doctor doing the AVS was not able to go into my right adrenal. > > She said the vein to the right side was so small the catheter either > > came out or the blood clotted. I could be mis-quoting here, I was > > still kind of loopy when she came to see me. So she took sample > > from the veina cava. Sample from the left she got easily. She said > > if level from left (with tumor) and from the veina cava are very > > off, then it would mean yes, tumor is causing levels to be off. If > > levels are only off a little between the two--then no it's not the > > tumor. So, I wasn't happy to hear about her not being able to get a > > sample from the right side. > > > > Does discrepancy in size of veins from one side of glands to the > > other indicate anything or is this type of variety in vein size > > common? At different times I was present enough that I could hear > > her asking for what sounded like different sizes of something (I > > guess tubing?). Then they would give me more sedative and I'd fade > > off again. She said my BP went up a bit during procedure. But > > during post-op it was in the usual " normal " for me--in the 116/60s > > range. Yes, they did ACTH. I asked. > > > > Now I wait TWO WEEKS (!) for results because they have to send out > > the sampling for analysis. The waiting game. > > > > Also, AVS doctor said no one in my county does laproscopic or > > robotic adrenalectomies. Only place around here is down in LA at > > UCLA, USC, or Cedars-Sinai. So, if that is the route, I would have > > to take it up with my insurance to go outside of my IPA. > > > > I was in post-op with the angiogram patients. Said I can't lift > > anything over 10 lbs. or stand or sit at a chair for more than an > > hour for three days? I'm dieing of boredom and inactivity! Isn't > > it better to do some walking if the idea is to avoid blood clots/ > > hematomas? > > > > Thanks for all the good feedback! > > > > Monika > > > > P.S. naturopathic doctor recommended eating Vitamin C/anti-oxidant > > rich foods after the AVS to scavenge free radicals from the > > radiation/contrast dye. Have been enjoying my raspberries and > > blueberries. Just a tip to pass on to others getting AVS or CT/MRI > > scans. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 It is county not country. And the question should be where in the US do they not do laps? > > > Hi All, > > > > The hospital was not going to release me yesterday if I was going to > > be home alone. I told them " Annie " would be keeping an eye on me > > for the night. They didn't need to know that Annie is a basset > > hound and doesn't know how to dial 911 or drive me to a hospital. > > LOL. > > > > The doctor doing the AVS was not able to go into my right adrenal. > > She said the vein to the right side was so small the catheter either > > came out or the blood clotted. I could be mis-quoting here, I was > > still kind of loopy when she came to see me. So she took sample > > from the veina cava. Sample from the left she got easily. She said > > if level from left (with tumor) and from the veina cava are very > > off, then it would mean yes, tumor is causing levels to be off. If > > levels are only off a little between the two--then no it's not the > > tumor. So, I wasn't happy to hear about her not being able to get a > > sample from the right side. > > > > Does discrepancy in size of veins from one side of glands to the > > other indicate anything or is this type of variety in vein size > > common? At different times I was present enough that I could hear > > her asking for what sounded like different sizes of something (I > > guess tubing?). Then they would give me more sedative and I'd fade > > off again. She said my BP went up a bit during procedure. But > > during post-op it was in the usual " normal " for me--in the 116/60s > > range. Yes, they did ACTH. I asked. > > > > Now I wait TWO WEEKS (!) for results because they have to send out > > the sampling for analysis. The waiting game. > > > > Also, AVS doctor said no one in my county does laproscopic or > > robotic adrenalectomies. Only place around here is down in LA at > > UCLA, USC, or Cedars-Sinai. So, if that is the route, I would have > > to take it up with my insurance to go outside of my IPA. > > > > I was in post-op with the angiogram patients. Said I can't lift > > anything over 10 lbs. or stand or sit at a chair for more than an > > hour for three days? I'm dieing of boredom and inactivity! Isn't > > it better to do some walking if the idea is to avoid blood clots/ > > hematomas? > > > > Thanks for all the good feedback! > > > > Monika > > > > P.S. naturopathic doctor recommended eating Vitamin C/anti-oxidant > > rich foods after the AVS to scavenge free radicals from the > > radiation/contrast dye. Have been enjoying my raspberries and > > blueberries. Just a tip to pass on to others getting AVS or CT/MRI > > scans. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right?In the spirit of health and wholeness,Monika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Something you may want to think about. This is what one member of this group posted in photos. This is what you will have if they do surgery where you now live. Think about how long it will take to recover. hyperaldosteronism/photos/album/2044170190/pic/193\ 5259948/view?picmode= & mode=tn & order=ordinal & start=1 & count=20 & dir=asc > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > In the spirit of health and wholeness,Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Monika, I'm not sure if this has been suggested to you before but - now that you know you have PA, can you get into the NIH program? A couple people here can give you the details I'm sure. Basically once accepted it's free, you just have to get to land on your own dime. Seriously - you do not want the non-laparoscopic adrenalectomy, and I'm shocked that your medical team is proposing it and your insurance wants to cover it. The recovery is so much longer and so much more complex, the risks are higher, and there are many more things that can go wrong. I know there are sometimes reasons why open surgery is the only option, but unless you meet that criteria, I cannot understand why they would want to put you through that. > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > In the spirit of health and wholeness,Monika > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 I do not think she has been confirmed she has PA renin has never been checked. Need to know this > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > In the spirit of health and wholeness,Monika > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Oh, for clarification: medical team is not proposing I have non laparoscopic surgery. AVS doc just let me know that no one in my area does laparoscopic surgery for adrenalectomy. So she suggested that if results come back that tumor is causing low K and high Aldos, I should go where I can have laparoscopic surgery since it is safer and less invasive. For person who is saying I don't have PA be/c they haven't done other tests--Yes, that is true. All I know is I have low K and high aldos and a tumor on my left adrenal. I'm sure you can imagine what it has been like to go like this for a long time, wondering what all this means, but no closer to a Dx. I TRIED to get them to do the other tests prior to AVS, but dr didn't want to know more about my levels, they wanted to know if the tumor is causing the levels to be off. Believe me, I did not want to do the AVS, that's why I sought out and joined this group in the first place. I wanted more information.Having worked in a research museum and lab for many years, I find I'm rather impervious to photos like the one posted here on what none laparoscopic surgery for adrenalectomy looks like. Perhaps other people in the forum will find the graphic photo posted helpful in their decision making process as to what they will do when presented with having to do surgery. Sometimes they are good for shock value, but other times, they just frighten people at a tough time in their life. I hope it wasn't done to do that to people here. We are all going through quite a lot.Monika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Francis, do you really think that is normal or are you just trying to upset someone? Dr. explained it would require about a 6inch incision on the right side (he prefers not to do laproscopic on the right side.) I was NOT impressed and I told Dr. Webster we would check options in Boston once I got clearence from Dr. Bauman > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > In the spirit of health and wholeness,Monika > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Reason to see what renin is If low you most likely have PA and possible cause is tumor on adrenal gland. But if you read current main line medical information only about 20% of of adrenal tumor are thought to be over producing. Note Dr grim thinks that they just don't test right so miss most that that are over producing. If renin is high then possible cause is related to blood supply to kidneys Photo is meant to inform one what they may be facing if they don't have the choice of laparoscopic surgery. > > Oh, for clarification: medical team is not proposing I have non laparoscopic surgery. AVS doc just let me know that no one in my area does laparoscopic surgery for adrenalectomy. So she suggested that if results come back that tumor is causing low K and high Aldos, I should go where I can have laparoscopic surgery since it is safer and less invasive. > For person who is saying I don't have PA be/c they haven't done other tests--Yes, that is true. > All I know is I have low K and high aldos and a tumor on my left adrenal. I'm sure you can imagine what it has been like to go like this for a long time, wondering what all this means, but no closer to a Dx. > I TRIED to get them to do the other tests prior to AVS, but dr didn't want to know more about my levels, they wanted to know if the tumor is causing the levels to be off. Believe me, I did not want to do the AVS, that's why I sought out and joined this group in the first place. I wanted more information. > Having worked in a research museum and lab for many years, I find I'm rather impervious to photos like the one posted here on what none laparoscopic surgery for adrenalectomy looks like. Perhaps other people in the forum will find the graphic photo posted helpful in their decision making process as to what they will do when presented with having to do surgery. Sometimes they are good for shock value, but other times, they just frighten people at a tough time in their life. I hope it wasn't done to do that to people here. We are all going through quite a lot. > Monika > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Another damn good reason she should consider NIH if she can figure it out and get accepted. One heck of a deal and experience - It cost me $375 total including coffee on the way home! I'll be happy to scrape up the info and fill you in if you wnat to check it out. ..... > > > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Go read posting 18594. Note date was Dec 2009. > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > In the spirit of health and wholeness,Monika > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Really Doesn't look like her MD is following the published studies very well. > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > > In the spirit of health and wholeness, > > Monika > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 I didn't say it didn't happen but I feel it is a very poor example of an open surgery! They sometimes remove the wrong body part but that is the exception not the rule. In fact after my TIA they did an ultrasound and reported " I did not have a tumor in my uterus " ! Thank God it was negative, I really would have a scar if they went looking for one of those! > > > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 I can not say if this is poor example for this surgery. I think it is up to the surgeon how they choose to do it. Some just like to see what is going on. > > > > > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 Monika, let me take a stab at what is going on. (Remember, I am not a doctor, just a researcher who has been researching for a year and a half. Great to be retired so I can research 70 hours a week if I want!) I suggest you start by looking at the vein structure of the adrenals: http://radiographics.rsna.org/content/25/suppl_1/S143/F3.expansion.html Notice the size of the veins and you will see why the right is so difficult. Now if you note the vena cava is where both adrenals flow into and if she has any chance at all it depends exactly where she stuck the cathe, which way the blood is flowing and which vein from the right is the correct one (I understand there are often extra veins just to make it interesting!) Now if the left vein has already dumped into the V.C. they will be measuring the same blood twice and tell you that you have bilateral. If they are prior to both they will tell you it is unilteral to the left and that may be true but they really don't know what the right is doing. Now they may be comfortable telling you it is the left because that is where your tumor is and you are slightly under the 40 y/o cutoff! I say they are no closer than they were before the AVS and they should back up and do proper testing. Obviously if using the V.C. was an option to measure the right somebody would have figured it out already, IMHO! The other option since you are already on an MCB is to try it for say a year and then decide if you want to do the testing. If you leave the adenoma in I would think it should be rechecked atleast once. You could do the whole test at that point. (I can't believe I just said that as hard as I am working to get mine removed but it is the cortisol I am worried about! Spiro worked very well for me except I had side effects which I now know was due to pre-existing low testosterone. Epler is showing real good BP and BS, I have not had any K+ issues on either.) Good Luck and let me know if I can help. ..... >> Oh, for clarification: medical team is not proposing I have non laparoscopic surgery. AVS doc just let me know that no one in my area does laparoscopic surgery for adrenalectomy. So she suggested that if results come back that tumor is causing low K and high Aldos, I should go where I can have laparoscopic surgery since it is safer and less invasive. > For person who is saying I don't have PA be/c they haven't done other tests--Yes, that is true. > All I know is I have low K and high aldos and a tumor on my left adrenal. I'm sure you can imagine what it has been like to go like this for a long time, wondering what all this means, but no closer to a Dx. > I TRIED to get them to do the other tests prior to AVS, but dr didn't want to know more about my levels, they wanted to know if the tumor is causing the levels to be off. Believe me, I did not want to do the AVS, that's why I sought out and joined this group in the first place. I wanted more information.> Having worked in a research museum and lab for many years, I find I'm rather impervious to photos like the one posted here on what none laparoscopic surgery for adrenalectomy looks like. Perhaps other people in the forum will find the graphic photo posted helpful in their decision making process as to what they will do when presented with having to do surgery. Sometimes they are good for shock value, but other times, they just frighten people at a tough time in their life. I hope it wasn't done to do that to people here. We are all going through quite a lot.> Monika> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 And you also can not say that you actually know anything about the background or even if it is authentic! It could actually be a hoax or there could be something else going on. Did you notice the scars on both sides on the lower abdomen? (Look at it in original size.) Maybe you should do a survey of how long the scar is on anyone who has had open surgery. I know Dr. told me 6 inches. > > > > > > > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2012 Report Share Posted July 12, 2012 But the thing is, they can say " six inches " but they never know what they will find once they are in there. Before my adrenalectomy, I asked my surgeon to tell me everything, including the absolute worst outcome (other than the obvious " sleeping the big sleep " ). She said there was always the chance of having to convert to open surgery; when I asked her how large of an incision that would be, she said it would depend on the reason why it was done in the first place. But she didn't imply anything as extreme as the photograph. She told me that the main reasons to do open surgery are scar tissue from previous abdominal surgeries, and obesity, and that even in those cases, it is always preferable to consider laparoscopic surgery from the back (instead of the front like mine was). I really got the impression from her that open surgery for adrenalectomy was a thing of the past, reserved now only for very special cases when there is no other option. > > > > > > > > > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right? > > > > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 I was immediately concerned when he said he had to do open because of the small veins on the right, not my size! I then asked about the excess cortisol and he said we would have to "wait and see". I took that to mean I would have to crash before they did something. My understanding is most doctors start you on replcement cortisol as a precaution since too little cortisol is not good, really not good!! I then asked Dr. Webster if there were any real surgeons in Boston! She sid she didn't think Dr. really liked doing adrenals! Now that's who I want chopping into me!!! > > > > > > > >> > > > > > > > Well, this just makes me feel great! At this point, all I can do is wait and hope for the best because it is obviously out of my hands. I wish I had the option to choose a different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > > > > > Regarding the advice of the naturopath, yes, some of the alternative stuff out there is total bunk and we should be cautious. Remember that some of our current modern medicine is based upon ancient and alternative medicine. I prefer to look at our bodies as a system that works holistically as a unit, not as separate entities that don't interact with each other. So, do I see it as humbug? Not at all. I like to look at ways alternative and allopathic medicine can work together to reach optimum health. > > > > > > > > We do get into trouble when every Tom, Dick and Harry think they can be an armchair herbalist for their ailments. It is a form of medicine and it can be dangerous if done wrong or carelessly. But under the guidance of a well-trained practitioner, I am of the opinion that it can augment and support the regular medical care someone is receiving. > > > > > > > > I am under the impression that the spirit of this forum is to support us in our process of dealing with PA, not to dis or put down what we do during this journey if it differs from someone else's way of doing things. Right?> > > > > > > > In the spirit of health and wholeness,Monika> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 With all that is available today for proper testing I would hope one would do proper testing and not have to do scanvager hunt! > > > > > > > >> > > > > > > > Well, this just makes me feel great! At this point, > > all I can do is wait and hope for the best because it is obviously > > out of my hands. I wish I had the option to choose a different > > doctor, site for AVS, etc. Due to my darn IPA, I did not.> > > > > > > > Regarding the advice of the naturopath, yes, some of the > > alternative stuff out there is total bunk and we should be > > cautious. Remember that some of our current modern medicine is > > based upon ancient and alternative medicine. I prefer to look at > > our bodies as a system that works holistically as a unit, not as > > separate entities that don't interact with each other. So, do I see > > it as humbug? Not at all. I like to look at ways alternative and > > allopathic medicine can work together to reach optimum health.> > > > > > > > We do get into trouble when every Tom, Dick and Harry > > think they can be an armchair herbalist for their ailments. It is a > > form of medicine and it can be dangerous if done wrong or > > carelessly. But under the guidance of a well-trained practitioner, > > I am of the opinion that it can augment and support the regular > > medical care someone is receiving.> > > > > > > > I am under the impression that the spirit of this forum > > is to support us in our process of dealing with PA, not to dis or > > put down what we do during this journey if it differs from someone > > else's way of doing things. Right?> > > > > > > > In the spirit of health and wholeness,Monika> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 Understand if an emergency but it would be one hell of a slip if they had to go from pelvis to breast bone. Might even require 16 pints of blood! > > > > > > > > > > > > > > > > > > Well, this just makes me feel great! At this > > point, all I can do is wait and hope for the best because it is > > obviously out of my hands. I wish I had the option to choose a > > different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > > > > > > Regarding the advice of the naturopath, yes, some of > > the alternative stuff out there is total bunk and we should be > > cautious. Remember that some of our current modern medicine is > > based upon ancient and alternative medicine. I prefer to look at > > our bodies as a system that works holistically as a unit, not as > > separate entities that don't interact with each other. So, do I see > > it as humbug? Not at all. I like to look at ways alternative and > > allopathic medicine can work together to reach optimum health. > > > > > > > > > We do get into trouble when every Tom, Dick and Harry > > think they can be an armchair herbalist for their ailments. It is a > > form of medicine and it can be dangerous if done wrong or > > carelessly. But under the guidance of a well-trained practitioner, > > I am of the opinion that it can augment and support the regular > > medical care someone is receiving. > > > > > > > > > I am under the impression that the spirit of this > > forum is to support us in our process of dealing with PA, not to dis > > or put down what we do during this journey if it differs from > > someone else's way of doing things. Right? > > > > > > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2012 Report Share Posted July 13, 2012 Being DXed w/subclinical Cushing's and the AVS showing high cortisol lateralized to the same side as the adenoma I would think a crash is likely. I didn't go any further with him, I'm pretty sure he is not going to do it! > > > > > > > > > > > > > > > > > > > > Well, this just makes me feel great! At this > > point, all I can do is wait and hope for the best because it is > > obviously out of my hands. I wish I had the option to choose a > > different doctor, site for AVS, etc. Due to my darn IPA, I did not. > > > > > > > > > > Regarding the advice of the naturopath, yes, some of > > the alternative stuff out there is total bunk and we should be > > cautious. Remember that some of our current modern medicine is > > based upon ancient and alternative medicine. I prefer to look at > > our bodies as a system that works holistically as a unit, not as > > separate entities that don't interact with each other. So, do I see > > it as humbug? Not at all. I like to look at ways alternative and > > allopathic medicine can work together to reach optimum health. > > > > > > > > > > We do get into trouble when every Tom, Dick and > > Harry think they can be an armchair herbalist for their ailments. > > It is a form of medicine and it can be dangerous if done wrong or > > carelessly. But under the guidance of a well-trained practitioner, > > I am of the opinion that it can augment and support the regular > > medical care someone is receiving. > > > > > > > > > > I am under the impression that the spirit of this > > forum is to support us in our process of dealing with PA, not to dis > > or put down what we do during this journey if it differs from > > someone else's way of doing things. Right? > > > > > > > > > > In the spirit of health and wholeness,Monika > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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