Comments on: Insulinoma & Whipple triad – Surgery (update) http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/ A med blog about health, news, surgery, urology and medicine as it must be, unlimited. Mon, 23 Jan 2012 21:46:59 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-532982 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-532982 Vanessa, I think most people that get really low sugars after an overnight fast sometimes talk their doctor into an overnight hospital stay to put the glucose drip in. I had an EUS along with an upper endoscopy. It is a breeze. They knock you out and then you come to. I had a very slight feeling in my lower chest that i could tell where maybe they spent more time or something, but it went away by the next day. I'm never hungry, but was able to eat. Vanessa, I think most people that get really low sugars after an overnight fast sometimes talk their doctor into an overnight hospital stay to put the glucose drip in. I had an EUS along with an upper endoscopy. It is a breeze. They knock you out and then you come to. I had a very slight feeling in my lower chest that i could tell where maybe they spent more time or something, but it went away by the next day. I’m never hungry, but was able to eat.

]]> By: Vanessa http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-531029 Vanessa Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-531029 Hi, I was diagnosed last July with an insulinoma and referred to Hammersmith Hospital. I had a galium PET scan in December which showed it was just the one tumour. I am having an EUS on Monday as the surgeon is concerned about the proximity to the duct of my tumour. I am very fearful of the whole experience - mainly due to having to fast. I am to get to hospital for 8am and be put on a glucose drip for an afternoon procedure. I am also very concerned about making the 18 mile trip across London to get there in time. I would be grateful if anyone could tell me of their EUS procedures for some reassurance. Were you sick afterwards, have a sore throat etc? How long did it take? Are you able to eat afterwards or don't you feel like it? I am very grateful for all Hammersmith are doing, but just wish I knew at the time of initial diagnosis there were many other hurdles to get over. It seems such a long process. I also didn't realise once diagnosed you are not able to drive. I had been driving since July until a few weeks ago when the endocrinologist told me I was basically uninsurable. Any good luck to everyone with their journeys to a healthier life! Hi, I was diagnosed last July with an insulinoma and referred to Hammersmith Hospital. I had a galium PET scan in December which showed it was just the one tumour. I am having an EUS on Monday as the surgeon is concerned about the proximity to the duct of my tumour. I am very fearful of the whole experience – mainly due to having to fast. I am to get to hospital for 8am and be put on a glucose drip for an afternoon procedure. I am also very concerned about making the 18 mile trip across London to get there in time. I would be grateful if anyone could tell me of their EUS procedures for some reassurance. Were you sick afterwards, have a sore throat etc? How long did it take? Are you able to eat afterwards or don’t you feel like it? I am very grateful for all Hammersmith are doing, but just wish I knew at the time of initial diagnosis there were many other hurdles to get over. It seems such a long process. I also didn’t realise once diagnosed you are not able to drive. I had been driving since July until a few weeks ago when the endocrinologist told me I was basically uninsurable. Any good luck to everyone with their journeys to a healthier life!

]]> By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-524577 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-524577 Any people still checking in? Kim, I just realized your surgery was today! Please let us know how you are when you feel up to it. Hope everything went as well as it could! Any people still checking in?

Kim, I just realized your surgery was today! Please let us know how you are when you feel up to it. Hope everything went as well as it could!

]]> By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-512171 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-512171 I know I've been hanging out here for a few years and still no diagnosis related to my hypos. But, y'all are the only place I can get help and info related to severe hypoglycemia! I had my EUS and they didn't find anything back in September. The problem is, for all these years of hypos, I would get adrenergic symptoms as my warning that I was going low. In the last six months, I find I get very solemn at first, without realizing that I am. Then all the sudden, I feel lightheaded. Now, I've noticed my vision gets VERY odd, kind of like blurry and bright at the same time. I get very focused on getting glucose, as I feel like I might pass out if I don't hurry. Then the shaking sets in and I'm dropping things as I try to open this or that. Can someone explain why my symptoms are changing from adrenergic to neuroglycopenic? Did anyone have experience with this happening? I know I’ve been hanging out here for a few years and still no diagnosis related to my hypos. But, y’all are the only place I can get help and info related to severe hypoglycemia!

I had my EUS and they didn’t find anything back in September. The problem is, for all these years of hypos, I would get adrenergic symptoms as my warning that I was going low. In the last six months, I find I get very solemn at first, without realizing that I am. Then all the sudden, I feel lightheaded. Now, I’ve noticed my vision gets VERY odd, kind of like blurry and bright at the same time. I get very focused on getting glucose, as I feel like I might pass out if I don’t hurry. Then the shaking sets in and I’m dropping things as I try to open this or that.
Can someone explain why my symptoms are changing from adrenergic to neuroglycopenic? Did anyone have experience with this happening?

]]> By: Kim http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-502564 Kim Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-502564 I recently went through the 72 hour fast..although I only made it about 24 hours before my levels dropped to 42. After the test they performed an MRI of my pancreas and found a 2 cm tumor on the head of my pancreas. I am scheduled for surgery on Jan. 5 and scared to death. The surgeon says he has only done two of these surgeries but he is performing it with a partner. I am sick to my stomach about the whole thing. He says he has to do an open surgery because he does not feel the laproscopic would work. He also said he does not think I will need the whipple because it is not on the duct..close but not on. About how long is the recovery time for this type of surgery and about how long is the hospital stay? I recently went through the 72 hour fast..although I only made it about 24 hours before my levels dropped to 42. After the test they performed an MRI of my pancreas and found a 2 cm tumor on the head of my pancreas. I am scheduled for surgery on Jan. 5 and scared to death. The surgeon says he has only done two of these surgeries but he is performing it with a partner. I am sick to my stomach about the whole thing. He says he has to do an open surgery because he does not feel the laproscopic would work. He also said he does not think I will need the whipple because it is not on the duct..close but not on. About how long is the recovery time for this type of surgery and about how long is the hospital stay?

]]> By: Tina http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-497241 Tina Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-497241 Hi Jack A few months after I had my Whipple in 2009 I also lost a lot of hair. Luckily I have a lot of long, curly hair so nobody but me and my hairdresser noticed. After about a month it stoppet and my hair began to grow back out. Strangely enought the new hair is straight unlike my otherwise curly hair. But never mind that.... So this is just to tell you not to worry, this is not unusual after big operations or long time of illness. Tina Hi Jack

A few months after I had my Whipple in 2009 I also lost a lot of hair. Luckily I have a lot of long, curly hair so nobody but me and my hairdresser noticed. After about a month it stoppet and my hair began to grow back out. Strangely enought the new hair is straight unlike my otherwise curly hair. But never mind that….

So this is just to tell you not to worry, this is not unusual after big operations or long time of illness.

Tina

]]> By: Jack http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-495720 Jack Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-495720 Just checking in with post whipple stuff: Abdominal pains/spasms have decreased in intensity and duration - I'd say around eight or nine weeks after the surgery they got noticeably better. I still get them occasionally but they are much more manageable. What I've noticed lately, though, over the past three weeks (I'm currently just short of three months out of surgery) is that my hair is falling out dramatically. They say this happens in a percentage of patients and that it should stop before four months and that it grows back. I checked some other blogs and read some anecdotal evidence to match that... jack Just checking in with post whipple stuff:

Abdominal pains/spasms have decreased in intensity and duration – I’d say around eight or nine weeks after the surgery they got noticeably better. I still get them occasionally but they are much more manageable.

What I’ve noticed lately, though, over the past three weeks (I’m currently just short of three months out of surgery) is that my hair is falling out dramatically. They say this happens in a percentage of patients and that it should stop before four months and that it grows back. I checked some other blogs and read some anecdotal evidence to match that…

jack

]]> By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491864 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491864 April, thanks so much for letting me know about your A1c. I have told my last endo if 4.5 was low(via email) and she never responded about the low A1c. Not one comment on it. I am seeing a new endo this coming week, so hope to have this all looked at with fresh eyes. I have NO idea how I'd get throught the 4 hours of lying still! I cannot lay flat on my back even, I have to lay on my side. I feel like my blood is cut off in my abdomen if I lay on my back without being propped up somehow. April, thanks so much for letting me know about your A1c. I have told my last endo if 4.5 was low(via email) and she never responded about the low A1c. Not one comment on it. I am seeing a new endo this coming week, so hope to have this all looked at with fresh eyes.

I have NO idea how I’d get throught the 4 hours of lying still! I cannot lay flat on my back even, I have to lay on my side. I feel like my blood is cut off in my abdomen if I lay on my back without being propped up somehow.

]]> By: April http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491135 April Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491135 Sue, My A1c was 4.9 prior to surgery and this was considered a red flag to my doctors. I had two endooscopics that did show something but nobody could say for sure that it was a tumor. During the 72 hour fast my sugar started dropping fast at about 12 hours or so. I would consider 62 low but mine would have gone a lot lower than that. I ended up having to have a calcium stim. test to verify the presence of a tumor. I was at Mayo also. It is a very involved test and not much fun afterwards as they make you lay still for four hours. Sue,

My A1c was 4.9 prior to surgery and this was considered a red flag to my doctors. I had two endooscopics that did show something but nobody could say for sure that it was a tumor. During the 72 hour fast my sugar started dropping fast at about 12 hours or so. I would consider 62 low but mine would have gone a lot lower than that. I ended up having to have a calcium stim. test to verify the presence of a tumor. I was at Mayo also. It is a very involved test and not much fun afterwards as they make you lay still for four hours.

]]> By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491122 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491122 Nicolai, I did do one 72-hour fast and made it through without going lower than 62. However, I have read in a Mayo article that roughly 5% of their insulinoma patients over a 30-year period passed the 72-hour fast and were responsive to glucose only. I feel I fit into that category. Nicolai, I did do one 72-hour fast and made it through without going lower than 62. However, I have read in a Mayo article that roughly 5% of their insulinoma patients over a 30-year period passed the 72-hour fast and were responsive to glucose only. I feel I fit into that category.

]]> By: laura http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491120 laura Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491120 I agree with Nicolai, has anyone out there who has been diagnosed with an insulinoma made it thru a 72 hour fast and not gone too low? I agree with Nicolai, has anyone out there who has been diagnosed with an insulinoma made it thru a 72 hour fast and not gone too low?

]]> By: Nicolai http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491118 Nicolai Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491118 Hi Sue. I went through all the various scans, and although they actually saw a tumour during my first EUS, this actually proved to be wrong. The tumour was in a completely different location than what they thought. In total I've had 2 EUS, 4 CTs, 3 MRIs, 1 Octreotide, 1 Calcium stimulation and 1 angiography. The angiography, which was done after many other scans, eventually showed the tumour - and once they knew where to look it was actually visible on all the old scans! I put my a descriptions of all the scans on my site (www.insulinomas.com). However, I still believe that the diagnosis should be gained by blood work, specifically the 72h fasting test. Even if you have an insulinoma you might be able to go through many scans without the doctors actually finding anything. On the other hand, a 72h test can definitively establish the diagnosis of an insulinoma, and then the doctors can try all the various scans to find it as step two. I can't remember if you already had a 72h test? I hope you are able to find some answers soon. Best of luck! Nicolai Hi Sue.

I went through all the various scans, and although they actually saw a tumour during my first EUS, this actually proved to be wrong. The tumour was in a completely different location than what they thought. In total I’ve had 2 EUS, 4 CTs, 3 MRIs, 1 Octreotide, 1 Calcium stimulation and 1 angiography. The angiography, which was done after many other scans, eventually showed the tumour – and once they knew where to look it was actually visible on all the old scans! I put my a descriptions of all the scans on my site (www.insulinomas.com).

However, I still believe that the diagnosis should be gained by blood work, specifically the 72h fasting test. Even if you have an insulinoma you might be able to go through many scans without the doctors actually finding anything. On the other hand, a 72h test can definitively establish the diagnosis of an insulinoma, and then the doctors can try all the various scans to find it as step two.

I can’t remember if you already had a 72h test?

I hope you are able to find some answers soon. Best of luck!

Nicolai

]]> By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491112 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491112 Wheeww! Thanks Robin for your story! I was feeling a little "thrown to the curb" by my doctors. An A1C is a test usually done on diabetics, and it shows their average glucose level for the last 3 months. It is measured on the hemoglobin somehow. According to my 4.5 level, my average glucose is 75(?)ish. So, for everytime that I eat and might rise 30-40 points, I have at some time also dipped 30-40 points from that 75. I really feel I dip while I sleep, along with after meals if I don't eat often. I honestly feel a calcium stim. test is what I need to definitively show it or not. I either have a single insulinoma, or my pancreas just has too many insulin-producing cells. Either way, it needs to be addressed. Wheeww! Thanks Robin for your story! I was feeling a little “thrown to the curb” by my doctors.

An A1C is a test usually done on diabetics, and it shows their average glucose level for the last 3 months. It is measured on the hemoglobin somehow. According to my 4.5 level, my average glucose is 75(?)ish. So, for everytime that I eat and might rise 30-40 points, I have at some time also dipped 30-40 points from that 75. I really feel I dip while I sleep, along with after meals if I don’t eat often.

I honestly feel a calcium stim. test is what I need to definitively show it or not. I either have a single insulinoma, or my pancreas just has too many insulin-producing cells. Either way, it needs to be addressed.

]]> By: Robin http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491081 Robin Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491081 Hi Sue, You came to the right place because I am one that unfortunately went thru numerous EUS procedures (3 I think) and none of them ever detected anything. Even onve I went to the Mayo Clinic the doctor there didn't see it. I also had a calcium stimulation test and that is what reassurred them that there was definitely something going on in the pancreas and we moved forward to exploratory surgery. My 1 year anniversary of the removal of the Insulinoma is coming up next month and I've been doing great and had no issues. I am not sure what AC1 is? Is there another name for it? I tried to look thru many of my lab reports/test results and didn't see anything by that name. Hi Sue,
You came to the right place because I am one that unfortunately went thru numerous EUS procedures (3 I think) and none of them ever detected anything. Even onve I went to the Mayo Clinic the doctor there didn’t see it. I also had a calcium stimulation test and that is what reassurred them that there was definitely something going on in the pancreas and we moved forward to exploratory surgery. My 1 year anniversary of the removal of the Insulinoma is coming up next month and I’ve been doing great and had no issues.
I am not sure what AC1 is? Is there another name for it? I tried to look thru many of my lab reports/test results and didn’t see anything by that name.

]]> By: sue http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491077 sue Thu, 01 Jan 1970 00:00:00 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-491077 Robin, Yes. The doctor said he didn't see anything. I wanted to ask here if others here had their first EUS show nothing, but they did end up with an insulinoma. I am making an appt. with another endo, just to get someone to take a fresh view of the situation. Insulinoma or not, something needs to be done about my low blood sugar swings. As I asked earlier, did anyone here have an A1c done while they had their insulinoma? Just curious what it was. I think my old doctor was just assuming it is pre-diabetes, but to me, that makes no sense. My fasting sugar this morning was 73. My A1c, done a few months ago, was down to 4.5. A few years ago it was at 4.9. None of these numbers even suggest diabetes. I wasted 2 years with that doctor, and am trying to find someone who will figure it out. Robin,

Yes. The doctor said he didn’t see anything. I wanted to ask here if others here had their first EUS show nothing, but they did end up with an insulinoma.

I am making an appt. with another endo, just to get someone to take a fresh view of the situation. Insulinoma or not, something needs to be done about my low blood sugar swings.

As I asked earlier, did anyone here have an A1c done while they had their insulinoma? Just curious what it was.

I think my old doctor was just assuming it is pre-diabetes, but to me, that makes no sense. My fasting sugar this morning was 73. My A1c, done a few months ago, was down to 4.5. A few years ago it was at 4.9. None of these numbers even suggest diabetes. I wasted 2 years with that doctor, and am trying to find someone who will figure it out.

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