New Member -

Posted February 13, 2011 · February 13, 2011

Hi All~

I just discovered this group a few weeks ago and I'm so glad I did!

I've found some great resources and your past messages have been very

encouraging. In looking at past posts, I know you like specific

information about your new members and the extent of their achalasia

symptoms and medical procedures, so here goes (this might be a little

long)...

I just turned 47, am active, and in good health. I live in SE Michigan,

between Ann Arbor and Detroit. I first noticed something " wrong "

several years ago (maybe 2005-ish) when I started gagging when brushing

my teeth. My dr. and dentist said it was just a strong gag reflex. I

knew it wasn't, since it was a sudden onset, but let it go. In August

of 2007, I had my first regurgitation (is this too much information?

ick!) - at a company picnic. Nice. My Dr. referred me to an ENT from

the University of Michigan Hospital. He ordered the barium swallow

test, followed with another one with a " swallow specialist " , who had me

swallow different textured foods with the barium. I had the manometric

test the same day, which was most uncomfortable (I notice most of you

agree with me on that!). The ENT said there was nothing wrong with my

swallowing, peristalsis, or esophagus, so he referred me to a

gastroenterologist (Dr. Laurel Fisher at UM Hospital). Dr. Fisher did

an upper endoscopy. Between the endoscopy and the manometrics, she gave

me the diagnosis of achalasia. By then it was March of 2008.

Dr. Fisher suggested the balloon dilation as a first step. After

researching the condition (I don't like the word " disease " ), and knowing

what I know about tearing muscle and scar tissue - also NOT knowing how

bad this condition can progress, along with having new self-paid,

high-deductible health insurance, I decided to hold off on the

procedure. I figured I could live with my symptoms, and considered them

a minor inconvenience. My LES is not closed 100% of the time - so

sometimes I can eat/drink just fine, and other times nothing will stay

down. I have not been able to pinpoint a specific category of food or

drink, or time of day, or stress level, etc. when things are worse. Red

meat, poultry, fish, vegetables,water, juice, pop, bread, popcorn,

chocolate, etc. all have inconsistent effects - sometimes they stay

down, sometimes they don't. I never have a problem swallowing, but can

tell when things get stuck. So then I wait. Quietly, since breathing

takes all my focus. Eventually, whatever is stuck either goes down or

comes up.

Typically, I don't have pain, but I occasionally get severe pain

originating from my xiphoid process, and referring up posterior to both

sides of my jaw - just anterior to my ears at the styloid processes.

That's extremely uncomfortable/painful, nothing seems to help, it tends

to occur when I'm resting or sleeping, and tends to last about 20

minutes. Not sure if that's related or not.

Things that seem to help: someone suggested drinking something warm

before eating. When I remember, I heat up water and put a lemon slice

in the plain hot water and drink a little before and during my meals. I

don't know if there's a cause/effect relationship, but so far when I've

done that, everything stays down. I typically order beverages with no

ice, as the extreme cold makes my symptoms worse. Something else I've

noticed: if I drink pop (aka " soda " ;o), plain, it bubbles and froths,

and makes gurgling sounds, and I have lots of burping noises coming from

my throat. However, if I add alcohol to the mix, no issue. Coke?

Issue. Rum and Coke? No issue. Straight alcohol? No issue.

Hmmm....perhaps is the nervous system depressant aspect of alcohol that

is the difference?

My AHA! moment was this past Christmas: I was visiting family, and my

uncle mentioned that his mother was at UM Hospital because her achalasia

had progressed so badly (I believe she was diagnosed in 1986) that her

esophagus was stretched to the size of her stomach, and she was going to

need either (a) to have her esophagus removed or, ( to get a feeding

tube inserted directly into her stomach through her abdomen, or else ©

she would die from malnutrition. Wow! I had NO IDEA things could get

that bad. All the research I'd done told me what achalasia is - nothing

said " get this taken care of quickly, or else. " As a side note, this

woman is my aunt's mother-in-law, not a blood relative of mine.

Needless to say, her situation prompted me to get back in touch with Dr.

Fisher. I saw her last Wednesday, and am scheduled for the balloon

dilation this Tuesday, the 15th. Dr. Fisher explained the procedure

very well to me, I like and trust her, and I'm actually excited that I

may be able to eat a meal without making sure I have an extra cup nearby

to spit up in if I need to. She did explain that it can take doing the

dilation 2-3 times a couple of months apart to see long-term results -

she has only one patient who only needed one dilation. She also said

she didn't believe botox was a good solution for me (which I'm glad she

mentioned, because I do NOT want that). I'm very comfortable with Dr.

Fisher, but I also feel that if I need surgery, I would like to switch

to Dr. Mark Orringer, who has not only been my uncle's mother's Dr. at U

of M, he is a leading esophageal surgeon there and has developed two of

the surgical procedures. Here's his bio:

(http://surgery.med.umich.edu/thoracic/clinical/faculty/morrin.shtml).

Has anyone had any experiences with Dr. Fisher and/or Dr. Orringer you'd

like to share?

So that's my story. I'm looking forward to Tuesday and a future of

eating without a spittoon!

Oh, one more thing...I noticed that UM Hospital is is one of the few

hospitals that has a support group for patients who have had (or are

going to have) the esophagectomy

(http://surgery.med.umich.edu/thoracic/clinical/support_group.shtml).

There is also a good explanation of the surgery, with pictures, that

some newer people might find helpful on the UM site, as well as a video:

(http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy\

_faq.shtml).

Thank you again for your willingness to share your experiences on this

group site - it has been very helpful, and I look forward to continuing

getting to know you all!

~

Posted February 15, 2011 · February 15, 2011

Hi ,

First of all I hope all went well with your dilatation. Iâ€™ve am a non-active

member on this wonderful, informational board. I read that you are interested

in Dr. Mark Orringer. I was diagnosed for achalasia in 1982, had many

dilatations, and in 1990 Dr. Orringer did my open surgery when I was 26 years

old. I underwent a transthoracic esophagomyotomy and modified belsey hiatal

hernia repair for achalasia. To date I have not had any problems other than the

occasional sticking of food, being my fault for not eating slower and (what I

use to call heartburn or spasms) which is now referred to as NCCPâ€™s. I eat

normally everyday and say my surgery was a great success. My surgery was almost

21 years ago, obviously surgeries have changed since then. Iâ€™m not sure what

type of surgery Dr. Orringer is doing these days. I see a GI doctor here in

Saginaw, MI once a year for a checkup and every 5-6 years he does a scope (EGD)

to check the esophagus/stomach with great results.

I hope some of this helps in your decision. I would be glad to answer any

questions you have. In my opinion since I have not had any issues I would

recommend Dr. Orringer. May you do well with your dilatation and not have to

worry about surgery for awhileâ€¦

Take Care, Michele in Michigan

Posted February 17, 2011 · February 17, 2011

Hi

How lovely you discovered this group. I did myself only a couple of weeks ago

and it has already made such a difference. I relate to your story in the way

that no-one explained to me how serious it can become untreated. i was basically

told go away and get on with it.

I learned the hard way that this isn't true. I had many dilations before finding

a consultant surgeon I trusted enough to have a myotomy. They mentioned that

scar tissue from the dilations could be a problem but as it turned out it was

fine. I would recommend you consider the Heller myotomy. The dilataions usually

need to be repeated (mine were at 2 year intervals) and although the myotomy is

not a cure all for the symptons it has really helped me that I don't have these

repeated hospital treatments which I found so unpleasant.

I too call it a condition not a disease - better for me and everyone else.

all the best and good luck with everything.

very best wishes, Kay

>

> Hi ,

>

> Many of us can relate to your experiences.Â I too waited a LONG time before I

> got proper help.Â I wish you all the best, my only concern is that after

> repeated dilations, if you do decide to have surgery it could be more

difficult

> to get a successful outcome because dilations produce or can produce scar

> tissue, which makes the surgery more complicated.Â I am 52, and just had

surgery

> (never had the balloon dilation), my surgery worked really well so far.Â I

know

> it's a personal decision, so I hope it works well for you and keeps working

for

> many years.Â Glad you found this group!

>

> Julee So Calif.

>

> ________________________________

> From: lisaf5678 <lferrari@...>

> achalasia

> Sent: Sun, February 13, 2011 1:07:21 PM

> Subject: New Member -

>

> Â

> Hi All~

>

> I just discovered this group a few weeks ago and I'm so glad I did!

> I've found some great resources and your past messages have been very

> encouraging. In looking at past posts, I know you like specific

> information about your new members and the extent of their achalasia

> symptoms and medical procedures, so here goes (this might be a little

> long)...

>

> I just turned 47, am active, and in good health. I live in SE Michigan,

> between Ann Arbor and Detroit. I first noticed something " wrong "

> several years ago (maybe 2005-ish) when I started gagging when brushing

> my teeth. My dr. and dentist said it was just a strong gag reflex. I

> knew it wasn't, since it was a sudden onset, but let it go. In August

> of 2007, I had my first regurgitation (is this too much information?

> ick!) - at a company picnic. Nice. My Dr. referred me to an ENT from

> the University of Michigan Hospital. He ordered the barium swallow

> test, followed with another one with a " swallow specialist " , who had me

> swallow different textured foods with the barium. I had the manometric

> test the same day, which was most uncomfortable (I notice most of you

> agree with me on that!). The ENT said there was nothing wrong with my

> swallowing, peristalsis, or esophagus, so he referred me to a

> gastroenterologist (Dr. Laurel Fisher at UM Hospital). Dr. Fisher did

> an upper endoscopy. Between the endoscopy and the manometrics, she gave

> me the diagnosis of achalasia. By then it was March of 2008.

>

> Dr. Fisher suggested the balloon dilation as a first step. After

> researching the condition (I don't like the word " disease " ), and knowing

> what I know about tearing muscle and scar tissue - also NOT knowing how

> bad this condition can progress, along with having new self-paid,

> high-deductible health insurance, I decided to hold off on the

> procedure. I figured I could live with my symptoms, and considered them

> a minor inconvenience. My LES is not closed 100% of the time - so

> sometimes I can eat/drink just fine, and other times nothing will stay

> down. I have not been able to pinpoint a specific category of food or

> drink, or time of day, or stress level, etc. when things are worse. Red

> meat, poultry, fish, vegetables,water, juice, pop, bread, popcorn,

> chocolate, etc. all have inconsistent effects - sometimes they stay

> down, sometimes they don't. I never have a problem swallowing, but can

> tell when things get stuck. So then I wait. Quietly, since breathing

> takes all my focus. Eventually, whatever is stuck either goes down or

> comes up.

>

> Typically, I don't have pain, but I occasionally get severe pain

> originating from my xiphoid process, and referring up posterior to both

> sides of my jaw - just anterior to my ears at the styloid processes.

> That's extremely uncomfortable/painful, nothing seems to help, it tends

> to occur when I'm resting or sleeping, and tends to last about 20

> minutes. Not sure if that's related or not.

>

> Things that seem to help: someone suggested drinking something warm

> before eating. When I remember, I heat up water and put a lemon slice

> in the plain hot water and drink a little before and during my meals. I

> don't know if there's a cause/effect relationship, but so far when I've

> done that, everything stays down. I typically order beverages with no

> ice, as the extreme cold makes my symptoms worse. Something else I've

> noticed: if I drink pop (aka " soda " ;o), plain, it bubbles and froths,

> and makes gurgling sounds, and I have lots of burping noises coming from

> my throat. However, if I add alcohol to the mix, no issue. Coke?

> Issue. Rum and Coke? No issue. Straight alcohol? No issue.

> Hmmm....perhaps is the nervous system depressant aspect of alcohol that

> is the difference?

>

> My AHA! moment was this past Christmas: I was visiting family, and my

> uncle mentioned that his mother was at UM Hospital because her achalasia

> had progressed so badly (I believe she was diagnosed in 1986) that her

> esophagus was stretched to the size of her stomach, and she was going to

> need either (a) to have her esophagus removed or, ( to get a feeding

> tube inserted directly into her stomach through her abdomen, or else ©

> she would die from malnutrition. Wow! I had NO IDEA things could get

> that bad. All the research I'd done told me what achalasia is - nothing

> said " get this taken care of quickly, or else. " As a side note, this

> woman is my aunt's mother-in-law, not a blood relative of mine.

> Needless to say, her situation prompted me to get back in touch with Dr.

> Fisher. I saw her last Wednesday, and am scheduled for the balloon

> dilation this Tuesday, the 15th. Dr. Fisher explained the procedure

> very well to me, I like and trust her, and I'm actually excited that I

> may be able to eat a meal without making sure I have an extra cup nearby

> to spit up in if I need to. She did explain that it can take doing the

> dilation 2-3 times a couple of months apart to see long-term results -

> she has only one patient who only needed one dilation. She also said

> she didn't believe botox was a good solution for me (which I'm glad she

> mentioned, because I do NOT want that). I'm very comfortable with Dr.

> Fisher, but I also feel that if I need surgery, I would like to switch

> to Dr. Mark Orringer, who has not only been my uncle's mother's Dr. at U

> of M, he is a leading esophageal surgeon there and has developed two of

> the surgical procedures. Here's his bio:

> (http://surgery.med.umich.edu/thoracic/clinical/faculty/morrin.shtml).

> Has anyone had any experiences with Dr. Fisher and/or Dr. Orringer you'd

> like to share?

>

> So that's my story. I'm looking forward to Tuesday and a future of

> eating without a spittoon!

>

> Oh, one more thing...I noticed that UM Hospital is is one of the few

> hospitals that has a support group for patients who have had (or are

> going to have) the esophagectomy

> (http://surgery.med.umich.edu/thoracic/clinical/support_group.shtml).

> There is also a good explanation of the surgery, with pictures, that

> some newer people might find helpful on the UM site, as well as a video:

>

(http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.sht\

ml).

>

> Thank you again for your willingness to share your experiences on this

> group site - it has been very helpful, and I look forward to continuing

> getting to know you all!

>

> ~

>

Posted May 8, 2012 · May 8, 2012

As you can see form other stories here your delayed Dx is classic for those who end up here.My assessment is that with two on one side there are almost certainly others on the other side but too small to be seen. I would think about surgery till you have failed DASH and MCBs and then after AVS.You may want to go to NIH for their 10 day study which is free but you will need to take off 10 days and pay way.attached in the welcome in case you did not get it. Please let me know if you did not get it when you signed on.CE Grim MD Welcome to the exciting world of Hyperaldosteronism You are in the right place! I am Dr. CE Grim a retired (well semi-retired) Professor of Medicine and Endocrinology. I have had a long standing interest is Primary Aldosteronism since medical school days when I saw my first patient with Primary Aldosteronism in 1963 as a 4th year medical student. I did a Nephrology Fellowship at Duke and an Endocrinology and Metabolism Fellowship with Dr. Conn (1969-70). I have been on the faculty of the University of MO, Indiana Univ, UCLA/ R. Drew, and the Medical College of Wisconsin in Divisions of Nephrology, Endocrinology, Hypertension, Cardiology and Epidemiology. I have published over 240 papers and book chapters in most areas of the broad discipline of High Blood Pressure. My CV is in our files for details. The GOAL of our group is to teach you and your health care team about the ins and outs of the causes, diagnosis and control of the many forms of hyperaldosteronism. The steps below will introduce you into the fascinating world of high blood pressure, salt and potassium and the role of the adrenal hormone aldosterone in health and disease. Doing these in sequence will save you time and effort in getting up to speed in taking control of you health and educating your own health care team. While we can’t make you a doctor we will make you into a pretty good BP doctor-a skill that you will have for life. 1. Overview: Read my article in our files on the evolution of PA (Evolution_of_PA-Grim.pdf ) and take to all members of health care team. Tell us what stage you believe you are in. This is a brief review of most causes of hyperaldosteronism, high blood pressure, and low potassium (K). Be certain that you and your health care team understand the key role of excess diet salt in HTN and especially in PA. Without excess salt in the diet, aldosterone cannot do most of its damage. Go to: http://www.worldactiononsalt.com/evidence/treatment_trials.htm For a state of the art and science discussion of salt and health. 2. Conn's Stories. Other patients with hyperaldosteronism (Conn’s syndrome). Read our Conn's stories in our files and then give us your own in as much detail as you can. Dr. Conn was the first to describe this disease process and the syndrome is named after him. I trained with him and his team in Ann Arbor, MI in 1969-70. To see others' stories on the Hyperaldosteronism home page, go to Files/Conn’s Stories. You'll find instructions in "A - How to put your story here.doc "Then send us your story in an email and then we will likely ask more questions and make suggestions before you upload it to our files. 3. Hyperaldosteronism and Salt: The Deadly Duo. In oder for aldosterone to cause its damage one must also eat excess salt in the diet. Thus much of the damage can be controlled/reversed by lowering salt (sodium) intake and increasing potassium intake. This is the essence of the low sodium DASH eating plan. Eating Plan to control high blood pressure due to hyperaldosteronism and most others with high blood pressure. This will reduce your need for medications and in many will get your BP and K to goal without meds.. Get the DASH diet book by T. et al, read it and use it: $8 in paperback at your local bookstore. If they don’t have it ask them to order it for you. Learning to eat the DASH way will play a major role in your road to good BP and K control and, in many of our folks here, will revolutionize your life. Go to chapter 9 and do the 14 day challenge. Tell your Dr you are doing this as your BP may plummet if you are on other meds in only 2-3 days. or go to http://www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf download this 64 page booklet free and do the Week on the DASH Diet for 2 weeks. If you are on BP meds be prepared for a large fall in BP and let your Dr. know you are doing this. Or go to (but costs money) DASH Diet for Health ProgramThe DASH Diet for Health Program is designed to help you improve your eating and exercise habits. Twice each week we will provide you with information on our website about food, food preparation, eating out, losing weight, getting fit and much more. In addition to providing new information each week on our website, we create a web page specially for you where you can track progress in areas such as your weight, blood pressure, and exercise.http://www.dashforhealth.com/ I strongly recommend you get the book and read it now! 4. Measure your own BP and insist that your health care team always measures BP correctly with an recently calibrated device: Measure your BP daily so you can see if it is getting better. If you are taking meds be sure to tell your health care team you are doing this as your BP may plummet to normal quickly. We recommend you use a device you listen to and will help you learn how to do this. If this is not something you want to do we can teach a significant other how to do it. See sharedcareinc.com or email to sharedcare@... to order a video on how to do this. If you already have one we will teach you how to teach your health care team how to validate your device. Your life and health depends on accurate BP measurements. Go to the amricanheart.org and download the Guidelines for Human Blood Pressure Measurement. Insist the your health care team do BP the AHA way. Your life is in the hands of those who measure your BP. Never trust your life to an automatic BP machine unless you know it is accurate on YOU. Most devices will read at least 25 mm Hg too high or too low is some people. The only way to know if you are one is to have your and any other automatic devices checked for accuracy in you. Instructions for doing this are in our files. 5. Genetics and your BP: Go to familyhistory.hhs.gov and do your detailed family medical history so we can review with you to help Dx familial causes of high blood pressure and heart disease. If BP runs in your family you may save lives in your family by checking their BP yourself. There is a brief discussion of this in my Evolution Article. 6. How to DX and treat PA: Go to our file/Conn's Articles of Note/Medications/Bravo spir 1973.pdf and read this article and take to your health care team. It is old but still one of the best in the medical management of PA. Also see our file from the Endocrine Society Guidelines on PA. Dr. Grim's Perfect Primary Aldosteronism Blood and Urine Testing to diagnose PA in one day with the testing for Pheochromocytoma and Cushing's thrown in. 1. Eat a high salt diet for 2 weeks-at least 4000 mg of Na a day. 2. No BP meds in last 4-12 weeks depending on meds and Drs advice. 3. Collect accurate 24 hr urine for Na, K and creatinine, aldosterone, urinary free cortisol and catecholamines. See which ones your lab can do all in the same sample. Do not lose a drop of this liquid gold. It is impossible to interpret the plasma renin and aldosterone and urine aldosterone and cortisol without this information. 4. The morning you finish the 24 hr urine have fasting blood drawn for renin, aldosterone and K using our guidelines to get an accurate K. Try to get this done about 1-4 hours after you have been out of bed. Be sure the laboratory orders and does aldosterone NOT aldolase. 5. Send us the results with the normal values for your lab. 6. If you ever have a salt (saline) infusion test for PA be certain to ask them to measure how much you pee during the 4 hours of the infusion. If it is 1-1.5 liter of urine it strongly suggests that you may have PA. If more tha 1.5 L you almost certainly have PA. I call this Dr. Grim’s “Quick Pee Test” for PA. 7. Our PA Registry: If you have been Dxed with PA already and are on Rx or have had surgery please go to http://www.kwiksurveys.com/online-survey.php?surveyID=HIJIO_f2685379 and complete our survey with as much information as you know. If there is some information you don't know ask us and we will help. If you need to update this as you journey thru the diagnostic/treatment process you can add another entry but label it as Nameyymmdd. For example today 5/1/12 for me would be Grim120521. This way of writing the date is an ever increasing number and will allow us and you to sort your multiple entries into a dated order. We are working on a more extensive database. 8. Learn the language: If you are new to medical lingo then download the acroyms from bloodpressureline/message/291869. Salt and high blood pressure: To learn the state of the science of salt and blood pressure please spend some time looking at http://www.worldactiononsalt.com/evidence/treatment_trials.htm10. Become a HBP expert consumer: Expect that it will take at least several weeks to get all this digested and to learn the new language of high blood pressure health care. As most doctors and nurses in practice have had very little training in high blood pressure you must become an expert yourself. For example most have never had anyone listen with them with a double stethoscope to verify that they can hear BP sounds. We cannot make you a doctor but we will make you a pretty good BP doctor.11. Learn as much as you can about how High Blood Pressure should be diagnosed and managed: Go to nih.gov and download and read the latest Joint National Commission (JNC) Report to get an overview on current guidelines. I have always asked all my staff (including secretaries) to read this so they can communicate the importance of high blood pressure to my patients. Then: get (and study) the Hypertension Primer from americanheart.org. This is the most up-to-date compendium of what is known about high blood pressure and what every Dr. should know when they graduate from Medical School. Every chapter is only 2-3 pages. Read one chapter every week-night and you will finish it in about a year. I am working on a reading guide for lay people for the Primer. Stay tuned.12. Ask us questions: Ask any questions about high blood pressure you want answered. That is what we are here for.13. One-on-one Consulting: I can provide individual consulting if you do not want to go public. If you want individual one-on-one consulting for you and your medical care team contract me directly at lowerbp2@.... My consulting fee is $500 for one year access to my expertise e-mail or by iChat or Skype or snail mail. May your pressure be low!Clarence E. Grim BS, MS, MD, FACP, FACC, FASH.Board Certified in Internal Medicine, Geriatrics, and High Blood Pressure Specializing in Primary Aldosteronism and Difficult to Control High Blood Pressure. On May 7, 2012, at 9:02 PM, ww_engineer wrote: Greetings all:I recently had a diagnosis of hyperaldosteronism confirmed, and wanted to share a little and ask for advice. I've had hypertension for about 14 years. It kept getting worse, and I kept changing and adding medications. In early 2009 my family Doc had previously tested and found I had low K, and put me on a supplement. Later in 2009 I went to an endocrinologist, mainly for help with blood glucose control. The Endo was more concerned with my BP, as he thought is was more likely to kill me than the high blood glucose. He had a blood test for aldosterone (and I presume rennin) done. The results came back showing high aldosterone. (I don't have the test results). He had me start on sprionolactone, which did reduce my BP. He also suggested doing a follow up 24 hour urine test as the next step. Shortly after that I lost my job and was out of work for the better part of a year, with some, but not good health insurance, and a very tight budget. I eventually moved (from Nevada to Pennsylvania) to take a new job in April of last year, with insurance starting in July. I found a new family doc, and got a referral to a new Endo. The New Endo had the 24-hour urine test run, along with other blood work, and confirmed the hyperaldosteronism. (I do not have the lab results available, but will attempt to get the results). Last month I had a CT scan which showed two adnomas on my left adrenal gland, one 1 cm and one 1.3 cm. My right adrenal gland was clear. When I met with the Endo to review the CT results, he told me that I needed to have my left adrenal gland removed, and referred me to a surgeon. I had studied up a bit and asked about AVS, and he stated that he did not think it was necessary, but I surgeon would review my history and could make a recommendation. Today I met with the surgeon. He is fairly experienced with adrenalectomy's and primarily does laproscopic surgery. I asked about AVS and expressed concern with removing the "right" gland. The surgeon was against me having the AVS, and did not think it was necessary. He did state th at he was basin this on the Endo's findings. He did recommended an MRI for further evaluation. Based on some of the other "cases" I've read about here and a more online research, I'm not sure if I want to proceed with surgery without the AVS. As best I can tell the current guidelines for someone over 40 with an identified adnoma is to have the AVS to be certain. I'm also concerned that my Endo is not well educated in hyperthyroidism as he may think he is. Unfortunately endo options where I live are limited. I have not discussed the potential surgery with my insurance company yet, So I don't know what their position will be regarding any additional testing. Thanks for reading, I would apreciate any comments. Regards,Mike My Background:Male, 51 years old, 6'3" tall, 295 lbs.Conditions: Hypertension, Diabetes Type II, Obstructive Sleep ApneaAverage PB: 140/90, highs to 160/100, occasional low to 130/75Medications:Coreg CR 40 mgDiovan 320 mg Amlopidine 5 mgLisinopril 40 mgSprionolactone 25 mgasprin 325 mgJanumet 50/1000 mg x2Novolog 70/30 60 units x2

Posted May 8, 2012 · May 8, 2012

Mike, first you must get all test results and maintain your own records. I would never have an adrenal removed without AVS. We had a guy here (remember Dave, Dr. Grim?) who had an obvious adrenal adenoma on CT. He had it removed and still had PA. I'll let Dr. Grim comment further since you have two visible adenomas on one adrenal. Why the MRI? You know you need to be off spiro for six weeks to have AVS? Has anyone talked to you about DASH? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of ww_engineerGreetings all:I recently had a diagnosis of hyperaldosteronism confirmed, and wanted to share a little and ask for advice. I've had hypertension for about 14 years. It kept getting worse, and I kept changing and adding medications. In early 2009 my family Doc had previously tested and found I had low K, and put me on a supplement. Later in 2009 I went to an endocrinologist, mainly for help with blood glucose control. The Endo was more concerned with my BP, as he thought is was more likely to kill me than the high blood glucose. He had a blood test for aldosterone (and I presume rennin) done. The results came back showing high aldosterone. (I don't have the test results). He had me start on sprionolactone, which did reduce my BP. He also suggested doing a follow up 24 hour urine test as the next step. Shortly after that I lost my job and was out of work for the better part of a year, with some, but not good health insurance, and a very tight budget. I eventually moved (from Nevada to Pennsylvania) to take a new job in April of last year, with insurance starting in July. I found a new family doc, and got a referral to a new Endo. The New Endo had the 24-hour urine test run, along with other blood work, and confirmed the hyperaldosteronism. (I do not have the lab results available, but will attempt to get the results). Last month I had a CT scan which showed two adnomas on my left adrenal gland, one 1 cm and one 1.3 cm. My right adrenal gland was clear. When I met with the Endo to review the CT results, he told me that I needed to have my left adrenal gland removed, and referred me to a surgeon. I had studied up a bit and asked about AVS, and he stated that he did not think it was necessary, but I surgeon would review my history and could make a recommendation. Today I met with the surgeon. He is fairly experienced with adrenalectomy's and primarily does laproscopic surgery. I asked about AVS and expressed concern with removing the " right " gland. The surgeon was against me having the AVS, and did not think it was necessary. He did state th at he was basin this on the Endo's findings. He did recommended an MRI for further evaluation. Based on some of the other " cases " I've read about here and a more online research, I'm not sure if I want to proceed with surgery without the AVS. As best I can tell the current guidelines for someone over 40 with an identified adnoma is to have the AVS to be certain. I'm also concerned that my Endo is not well educated in hyperthyroidism as he may think he is. Unfortunately endo options where I live are limited. I have not discussed the pot ential surgery with my insurance company yet, So I don't know what their position will be regarding any additional testing. Thanks for reading, I would apreciate any comments. Regards,Mike My Background:Male, 51 years old, 6'3 " tall, 295 lbs.Conditions: Hypertension, Diabetes Type II, Obstructive Sleep ApneaAverage PB: 140/90, highs to 160/100, occasional low to 130/75Medications:Coreg CR 40 mgDiovan 320 mg Amlopidine 5 mgLisinopril 40 mgSprionolactone 25 mgasprin 325 mgJanumet 50/1000 mg x2Novolog 70/30 60 units x2

Posted May 8, 2012 · May 8, 2012

Dr. Grim:

Thanks for the prompt response. I think at this point I need to get a second

opinion and possibly find another Endo. I've severely restricted my salt

intake recently, and will see what that does to the BP.

If an AVS showed it to be unilateral, I'd think I'd favor surgery as I assume it

would also help with my blood glucose control, (which is marginal at best).

Also, I did receive the welcome when I originally signed up. I'll get a copy of

the DASH material and try to stick with the guidelines.

Mike

>

> > Greetings all:

> >

> > I recently had a diagnosis of hyperaldosteronism confirmed, and

> > wanted to share a little and ask for advice. I've had hypertension

> > for about 14 years. It kept getting worse, and I kept changing and

> > adding medications. In early 2009 my family Doc had previously

> > tested and found I had low K, and put me on a supplement. Later in

> > 2009 I went to an endocrinologist, mainly for help with blood

> > glucose control. The Endo was more concerned with my BP, as he

> > thought is was more likely to kill me than the high blood glucose.

> > He had a blood test for aldosterone (and I presume rennin) done.

> > The results came back showing high aldosterone. (I don't have the

> > test results). He had me start on sprionolactone, which did reduce

> > my BP. He also suggested doing a follow up 24 hour urine test as

> > the next step.

> >

> > Shortly after that I lost my job and was out of work for the better

> > part of a year, with some, but not good health insurance, and a very

> > tight budget. I eventually moved (from Nevada to Pennsylvania) to

> > take a new job in April of last year, with insurance starting in

> > July. I found a new family doc, and got a referral to a new Endo.

> >

> > The New Endo had the 24-hour urine test run, along with other blood

> > work, and confirmed the hyperaldosteronism. (I do not have the lab

> > results available, but will attempt to get the results). Last month

> > I had a CT scan which showed two adnomas on my left adrenal gland,

> > one 1 cm and one 1.3 cm. My right adrenal gland was clear.

> >

> > When I met with the Endo to review the CT results, he told me that I

> > needed to have my left adrenal gland removed, and referred me to a

> > surgeon. I had studied up a bit and asked about AVS, and he stated

> > that he did not think it was necessary, but I surgeon would review

> > my history and could make a recommendation.

> >

> > Today I met with the surgeon. He is fairly experienced with

> > adrenalectomy's and primarily does laproscopic surgery. I asked

> > about AVS and expressed concern with removing the " right " gland.

> > The surgeon was against me having the AVS, and did not think it was

> > necessary. He did state th at he was basin this on the Endo's

> > findings. He did recommended an MRI for further evaluation.

> >

> > Based on some of the other " cases " I've read about here and a more

> > online research, I'm not sure if I want to proceed with surgery

> > without the AVS. As best I can tell the current guidelines for

> > someone over 40 with an identified adnoma is to have the AVS to be

> > certain. I'm also concerned that my Endo is not well educated in

> > hyperthyroidism as he may think he is. Unfortunately endo options

> > where I live are limited.

> >

> > I have not discussed the potential surgery with my insurance company

> > yet, So I don't know what their position will be regarding any

> > additional testing.

> >

> > Thanks for reading, I would apreciate any comments.

> >

> > Regards,

> >

> > Mike

> >

> > My Background:

> > Male, 51 years old, 6'3 " tall, 295 lbs.

> > Conditions: Hypertension, Diabetes Type II, Obstructive Sleep Apnea

> > Average PB: 140/90, highs to 160/100, occasional low to 130/75

> > Medications:

> > Coreg CR 40 mg

> > Diovan 320 mg

> > Amlopidine 5 mg

> > Lisinopril 40 mg

> > Sprionolactone 25 mg

> > asprin 325 mg

> > Janumet 50/1000 mg x2

> > Novolog 70/30 60 units x2

> >

>

Posted May 8, 2012 · May 8, 2012

Val,

Thanks for the comments. I'm not having surgery till I'm 100% certain in the

correct gland. Till then I'm going to start working of getting copies of my

records.

The surgeon recommend the MRI, I think he thought it might confirm the that

there was nothing on the right side.

Mike

>

> Mike, first you must get all test results and maintain your own records.

>

> I would never have an adrenal removed without AVS. We had a guy here

> (remember Dave, Dr. Grim?) who had an obvious adrenal adenoma on CT. He had

> it removed and still had PA. I'll let Dr. Grim comment further since you

> have two visible adenomas on one adrenal. Why the MRI?

>

> You know you need to be off spiro for six weeks to have AVS? Has anyone

> talked to you about DASH?

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of ww_engineer

>

> Greetings all:

>

> I recently had a diagnosis of hyperaldosteronism confirmed, and wanted to

> share a little and ask for advice. I've had hypertension for about 14

> years. It kept getting worse, and I kept changing and adding medications.

> In early 2009 my family Doc had previously tested and found I had low K, and

> put me on a supplement. Later in 2009 I went to an endocrinologist, mainly

> for help with blood glucose control. The Endo was more concerned with my

> BP, as he thought is was more likely to kill me than the high blood glucose.

> He had a blood test for aldosterone (and I presume rennin) done. The

> results came back showing high aldosterone. (I don't have the test results).

> He had me start on sprionolactone, which did reduce my BP. He also

> suggested doing a follow up 24 hour urine test as the next step.

>

> Shortly after that I lost my job and was out of work for the better part of

> a year, with some, but not good health insurance, and a very tight budget. I

> eventually moved (from Nevada to Pennsylvania) to take a new job in April of

> last year, with insurance starting in July. I found a new family doc, and

> got a referral to a new Endo.

>

> The New Endo had the 24-hour urine test run, along with other blood work,

> and confirmed the hyperaldosteronism. (I do not have the lab results

> available, but will attempt to get the results). Last month I had a CT scan

> which showed two adnomas on my left adrenal gland, one 1 cm and one 1.3 cm.

> My right adrenal gland was clear.

>

> When I met with the Endo to review the CT results, he told me that I needed

> to have my left adrenal gland removed, and referred me to a surgeon. I had

> studied up a bit and asked about AVS, and he stated that he did not think it

> was necessary, but I surgeon would review my history and could make a

> recommendation.

>

> Today I met with the surgeon. He is fairly experienced with adrenalectomy's

> and primarily does laproscopic surgery. I asked about AVS and expressed

> concern with removing the " right " gland. The surgeon was against me having

> the AVS, and did not think it was necessary. He did state th at he was

> basin this on the Endo's findings. He did recommended an MRI for further

> evaluation.

>

> Based on some of the other " cases " I've read about here and a more online

> research, I'm not sure if I want to proceed with surgery without the AVS.

> As best I can tell the current guidelines for someone over 40 with an

> identified adnoma is to have the AVS to be certain. I'm also concerned that

> my Endo is not well educated in hyperthyroidism as he may think he is.

> Unfortunately endo options where I live are limited.

>

> I have not discussed the pot ential surgery with my insurance company yet,

> So I don't know what their position will be regarding any additional

> testing.

>

> Thanks for reading, I would apreciate any comments.

>

> Regards,

>

> Mike

>

> My Background:

> Male, 51 years old, 6'3 " tall, 295 lbs.

> Conditions: Hypertension, Diabetes Type II, Obstructive Sleep Apnea

> Average PB: 140/90, highs to 160/100, occasional low to 130/75

> Medications:

> Coreg CR 40 mg

> Diovan 320 mg

> Amlopidine 5 mg

> Lisinopril 40 mg

> Sprionolactone 25 mg

> asprin 325 mg

> Janumet 50/1000 mg x2

> Novolog 70/30 60 units x2

>

Posted May 8, 2012 · May 8, 2012

The only way to do that is to do AVS. But even that is not a guarantee May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 8, 2012, at 18:52, ww_engineer <mfaeth01@...> wrote:

Val,

Thanks for the comments. I'm not having surgery till I'm 100% certain in the correct gland. Till then I'm going to start working of getting copies of my records.

The surgeon recommend the MRI, I think he thought it might confirm the that there was nothing on the right side.