Comments on: Insulinoma & Whipple triad - Surgery (update) http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/ Medicine as it must be: Unlimited Thu, 28 Aug 2008 19:02:50 +0000 http://wordpress.org/?v=2.6.1 By: Nicky http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-295671 Nicky Thu, 21 Aug 2008 03:25:20 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-295671 Hello everyone I'm back! My surgery was on the 5th August and was a success. Obviously the powers that be were keeping an eye on me because the team that worked on me were outstanding.I had an appointment with the surgeon Prof. Andrew Biankin at Bankstown/Lidcombe Hospital Medical Centre Sydney,on the morning before the surgery.This was the first time I had met him,we had previously spoken by phone.We discussed what the scans had shown and he drew us some images of what he'd planned to remove.I already knew that a whipple was planned and he told me that unless he was surprised at what he saw when they opened me up that I shouldn't expect anything less. Prof.Biankin has an affiliation with the Cancer Council Australia and has a dedicated team of surgeons that specialise in pancreatic cancer surgery. So given this information I had to leave myself in his capable hands and pray for the best. On the morning of the surgery I'd be lying if I said I wasn't scared,I didn't know if when I woke that I would be diabetic and what my quality of life was going to be like so the nerves did get the better of me for a time.By the time I was being wheeled off to be prepped I had regained my composure and focussed on my recovery and thought about my wonderful husband an beautiful girls. I had an epidural put in to help with pain and was ready to rock an roll.Next thing I remember was asking someone for help but I don't really remember the pain,apparently the eppidural wasn't working when I awoke and it took a half hour or so to fix. Then I was in ICU. Ideveloped an intollerance to the octreotide injections they gave me every 6 hours to help with the healing and was violently ill but we soon figured out a regime of anti nausea meds to go with it and it was bareable.I spent the first 4 days in ICU and was then tranfered to surgical ward for a further 7. When I became alert in Icu I could hear my husband say "it's 5 o'clock" and my relief was indescribable, I was expecting a longer op. for a full whipple and it had only been around 5-6hrs so I was sure I would be OK.As it turned out the tumour was 10mm and in the lower head of the pancreas.The took my gallbladder and put a balloon down the duct to see how close to the pancreatic duct the tumour lay.There was enough room to safely excise the tumour so they did. The hole was too large though to stitch back up so a piece of bowel further down than the duodenum was grafted up to cover the hole and the plumbing was rewired a bit so I had a partial whipple leaving my stomach intact.I have up to 85% of the pancreas intact and have no diabetes. I have had a bit of diarrhoea and wind but now 2 weeks later can eat small meals without too much hassel.I'm still figuring out the fat/oil issues.I've lost 7 kilos from my 19 I gained which is encouraging.The wound looks a bit like the Sydney harbour bridge following the line of the bottom of my ribs and isn't anymore painful at this point then when I had my c-sections, I'm only taking paracetemol for pain. I am truly lucky and grateful to my team for giving me my life back.I'd forgotten how it felt to be hypo free.If anyone in the Southern hemesphere needs a referal to my doctors don't hesitate to ask for details they really were the best. Susie Thanks for the info it was very helpful I'm sure my eating habits will have to change just not as drastically as yourself,best wishes to you. Hazel Goodluck with your up coming surgery,it's a pity you have to travel so far but it will be worth it. Sorry this was so long but I wanted to give details and let you all know I'm well. Nicky Hello everyone I’m back! My surgery was on the 5th August and was a success.
Obviously the powers that be were keeping an eye on me because the team that worked on me were outstanding.I had an appointment with the surgeon Prof. Andrew Biankin at Bankstown/Lidcombe Hospital Medical Centre Sydney,on the morning before the surgery.This was the first time I had met him,we had previously spoken by phone.We discussed what the scans had shown and he drew us some images of what he’d planned to remove.I already knew that a whipple was planned and he told me that unless he was surprised at what he saw when they opened me up that I shouldn’t expect anything less.
Prof.Biankin has an affiliation with the Cancer Council Australia and has a dedicated team of surgeons that specialise in pancreatic cancer surgery. So given this information I had to leave myself in his capable hands and pray for the best.
On the morning of the surgery I’d be lying if I said I wasn’t scared,I didn’t know if when I woke that I would be diabetic and what my quality of life was going to be like so the nerves did get the better of me for a time.By the time I was being wheeled off to be prepped I had regained my composure and focussed on my recovery and thought about my wonderful husband an beautiful girls.
I had an epidural put in to help with pain and was ready to rock an roll.Next thing I remember was asking someone for help but I don’t really remember the pain,apparently the eppidural wasn’t working when I awoke and it took a half hour or so to fix. Then I was in ICU. Ideveloped an intollerance to the octreotide injections they gave me every 6 hours to help with the healing and was violently ill but we soon figured out a regime of anti nausea meds to go with it and it was bareable.I spent the first 4 days in ICU and was then tranfered to surgical ward for a further 7.
When I became alert in Icu I could hear my husband say “it’s 5 o’clock” and my relief was indescribable, I was expecting a longer op. for a full whipple and it had only been around 5-6hrs so I was sure I would be OK.As it turned out the tumour was 10mm and in the lower head of the pancreas.The took my gallbladder and put a balloon down the duct to see how close to the pancreatic duct the tumour lay.There was enough room to safely excise the tumour so they did. The hole was too large though to stitch back up so a piece of bowel further down than the duodenum was grafted up to cover the hole and the plumbing was rewired a bit so I had a partial whipple leaving my stomach intact.I have up to 85% of the pancreas intact and have no diabetes.
I have had a bit of diarrhoea and wind but now 2 weeks later can eat small meals without too much hassel.I’m still figuring out the fat/oil issues.I’ve lost 7 kilos from my 19 I gained which is encouraging.The wound looks a bit like the Sydney harbour bridge following the line of the bottom of my ribs and isn’t anymore painful at this point then when I had my c-sections, I’m only taking paracetemol for pain. I am truly lucky and grateful to my team for giving me my life back.I’d forgotten how it felt to be hypo free.If anyone in the Southern hemesphere needs a referal to my doctors don’t hesitate to ask for details they really were the best.
Susie
Thanks for the info it was very helpful I’m sure my eating habits will have to change just not as drastically as yourself,best wishes to you.
Hazel
Goodluck with your up coming surgery,it’s a pity you have to travel so far but it will be worth it.
Sorry this was so long but I wanted to give details and let you all know I’m well.
Nicky

]]> By: Janet http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294545 Janet Tue, 19 Aug 2008 18:24:41 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294545 That message entitled Laura was meant for Angelique! But its also for Laura and everyone else. Sorry! That message entitled Laura was meant for Angelique! But its also for Laura and everyone else. Sorry!

]]> By: Janet http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294543 Janet Tue, 19 Aug 2008 18:22:03 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294543 Homa, Hi there. Thanks for your loving reply. My first operarion was in 1974 whenI was 17 tears old at Dudley Road Hospital in Birmingham UK, the surgeon was Professor Bevan. I had an insulinoma and half of my pancreas, my spleen and appendix removed. I had a recurrent insulinoma in 1995, and have been seen by several endrocrinolgists since then, and a surgeon, Mr Da Silva. An further operation was recomended by the endro but when I saw the surgeon he advised that because of the previous surgery he had serious concerns. I have had other opinions and decided to be treated by medication for as long as possible. I take a lot of diazoxide, 650 mg per day. Thanks for your encorougement it is very much appreciated. am very blessed as despite my problems I had a baby in 1985, before the second insulinoma. Laura, Congratulations on your pregnancy and Laura too. I had my son 11 years after partial pancrectomy, spenectomy and appendectomy. My pregnancy was really ok, I only had the usual preganancy pains. However, following surgery for about 10 years I occasionally had days when I had horrendous abdominal pain that was only relieved by going to bed and actually sleeping. This was no worse during pregnancy. Very very very occasionally I still get these pains but not quite so severe, it is a small cross to bear and I am so blessed to have a healthy son, as durin prenancy I had been advised by medic to have a termination because of the medication I was taking. My prayers are with you and everyone. LOve Janet xx Homa,
Hi there. Thanks for your loving reply. My first operarion was in 1974 whenI was 17 tears old at Dudley Road Hospital in Birmingham UK, the surgeon was Professor Bevan. I had an insulinoma and half of my pancreas, my spleen and appendix removed. I had a recurrent insulinoma in 1995, and have been seen by several endrocrinolgists since then, and a surgeon, Mr Da Silva. An further operation was recomended by the endro but when I saw the surgeon he advised that because of the previous surgery he had serious concerns. I have had other opinions and decided to be treated by medication for as long as possible. I take a lot of diazoxide, 650 mg per day. Thanks for your encorougement it is very much appreciated. am very blessed as despite my problems I had a baby in 1985, before the second insulinoma.

Laura,
Congratulations on your pregnancy and Laura too. I had my son 11 years after partial pancrectomy, spenectomy and appendectomy. My pregnancy was really ok, I only had the usual preganancy pains. However, following surgery for about 10 years I occasionally had days when I had horrendous abdominal pain that was only relieved by going to bed and actually sleeping. This was no worse during pregnancy. Very very very occasionally I still get these pains but not quite so severe, it is a small cross to bear and I am so blessed to have a healthy son, as durin prenancy I had been advised by medic to have a termination because of the medication I was taking. My prayers are with you and everyone.

LOve Janet xx

]]> By: Laura http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294489 Laura Tue, 19 Aug 2008 16:24:01 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294489 Angelique, I am also pregnant, fun huh? I had my surgery last summer August 2007 and I got pregnant in Feb 2008 so I am about 28 weeks. I have not had any strange pains, but I did discover that I have a hernia at my incision which means I have a huge bump right in the middle of my belly, very attractive. Of course, they can't fix it till after the baby comes so I am sure it will continue to get more and more attractive. the only thing I was experiencing was the constipation, but I have been eating a ton of salads and prunes and now that is pretty under control. I have to tell you, I have been pregnant with the tumor before 3 times (this is my fourth baby), and for once, I am really looking forward to nursing. In the past, it was nursing that really triggered the hypoglycemia for me. The first time I ever had any symptoms was when I started nursing my second child and the symptoms always went away when I got pregnant again until the last time. Good luck! Laura Angelique, I am also pregnant, fun huh? I had my surgery last summer August 2007 and I got pregnant in Feb 2008 so I am about 28 weeks. I have not had any strange pains, but I did discover that I have a hernia at my incision which means I have a huge bump right in the middle of my belly, very attractive. Of course, they can’t fix it till after the baby comes so I am sure it will continue to get more and more attractive. the only thing I was experiencing was the constipation, but I have been eating a ton of salads and prunes and now that is pretty under control. I have to tell you, I have been pregnant with the tumor before 3 times (this is my fourth baby), and for once, I am really looking forward to nursing. In the past, it was nursing that really triggered the hypoglycemia for me. The first time I ever had any symptoms was when I started nursing my second child and the symptoms always went away when I got pregnant again until the last time. Good luck!

Laura

]]> By: Angelique http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294475 Angelique Tue, 19 Aug 2008 15:48:22 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-294475 Hi everyone! Homa, its nice to hear from you again. I read all of everyone's mail but never seem to have time to reply. I had a partial - well, neck, body and tail removed as well as my spleen and I do take creons (enzymes) when I eat a big meal. Question, has anyone been pregnant after surgery? I am almost 6 months and get a really bad pain on my upper left side towards the back. Also, I am always very constipated. Anyone out there with this experience? xxx Angelique xxx Hi everyone!

Homa, its nice to hear from you again. I read all of everyone’s mail but never seem to have time to reply. I had a partial - well, neck, body and tail removed as well as my spleen and I do take creons (enzymes) when I eat a big meal.

Question, has anyone been pregnant after surgery? I am almost 6 months and get a really bad pain on my upper left side towards the back. Also, I am always very constipated. Anyone out there with this experience?

xxx Angelique xxx

]]> By: Homa http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293392 Homa Mon, 18 Aug 2008 01:11:05 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293392 Dear Janet thank you so very much for your sweet and touching responce. you are too kind. Sounds like you have been through a lot too. I can't imagine going through all that you have been through and having the insulinoma coming back again, bless your heart. I have not been able to go through all the comments here, so if you don't mind telling me. when did you have your first operation and insulinoma removed, when did you discover about the second insulinoma? what are they planning on doing about it? what hospital did you have your surgery done? My experience has thought me that going to the best hospital is the most important thing one can do. God knows it is a hassel to travel. I got so sick of flying to Houston every month. not to mention the expense of travel and all that good stuff. but in the end it was so worth it. I hope you don't have to have another operation, but even if you do, it is not the end of the world. It would be hard and long recovery but it will pass. There is something positive in everything. during those dark days that I was recovering, I kept telling myself, at least it is not cancer. I will keep you in my prayers. and stay strong and god bless you love homa Dear Janet
thank you so very much for your sweet and touching responce. you are too kind. Sounds like you have been through a lot too. I can’t imagine going through all that you have been through and having the insulinoma coming back again, bless your heart. I have not been able to go through all the comments here, so if you don’t mind telling me. when did you have your first operation and insulinoma removed, when did you discover about the second insulinoma? what are they planning on doing about it? what hospital did you have your surgery done? My experience has thought me that going to the best hospital is the most important thing one can do. God knows it is a hassel to travel. I got so sick of flying to Houston every month. not to mention the expense of travel and all that good stuff. but in the end it was so worth it. I hope you don’t have to have another operation, but even if you do, it is not the end of the world. It would be hard and long recovery but it will pass. There is something positive in everything. during those dark days that I was recovering, I kept telling myself, at least it is not cancer.
I will keep you in my prayers. and stay strong and god bless you
love homa

]]> By: Janet http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293209 Janet Sun, 17 Aug 2008 21:01:04 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293209 Hi Homa! And I thought I had had a bad time!! I too had my spleen removed when I had half of my pancreas removed with myfirst insulinoma. Still have the other half but have another insulinoma which I am taking diazoxide long term. However, I can imagine that going from one end of the spectrum to h other must be horrendous. I was told that if I have this second insulinoma removed I would have to have total pancrectomy and since I have already had pancreas op things would be quite complicated. You sound like you have really been through it. You are so so brave and I am honestly in awe of you, as I fear another operation as I had such a bad time. Its great that you are trying to be postivive, its the only way forward and I admire you so much. God bless you and your brave outlook. Love Janet xx Hi Homa!
And I thought I had had a bad time!! I too had my spleen removed when I had half of my pancreas removed with myfirst insulinoma. Still have the other half but have another insulinoma which I am taking diazoxide long term. However, I can imagine that going from one end of the spectrum to h other must be horrendous. I was told that if I have this second insulinoma removed I would have to have total pancrectomy and since I have already had pancreas op things would be quite complicated. You sound like you have really been through it. You are so so brave and I am honestly in awe of you, as I fear another operation as I had such a bad time.
Its great that you are trying to be postivive, its the only way forward and I admire you so much. God bless you and your brave outlook.

Love Janet xx

]]> By: Homa http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293101 Homa Sun, 17 Aug 2008 17:01:24 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293101 Dear Kim So good to hear from you and thank you for the sweet responce. it means a lot. My doctor didn't know why my spleen was enlarged. he told me about it the day before surgery. I was going through information overload at the time, just to digest the fact that I was going to have pancreatectomy. so having the spleen removed was the least of my worries. yes I have been through a lot, but I managed to overcome it. whatever doens't kill you makes you stronger, right, smile. It was difficulty coming to terms with diabetes. my poor little body went from having too much insulin to having none. I have always been horrified of needles, and suddenly I had to give myself insulin injections four times a day. that was the hardest part I went though the stages of adjustment, getting upset, angry, depressed. I have come to accept it now. My husband is diabetic, so he understood what I was going through. His love and support and guidance made the world of difference. I did have to learn a lot about what to eat and what to do. I was blessed to have worked with people who are diabetic, so i had a good head start on it. It was just overwhelming in the hospital, with all this people coming to see you to teach you things. I wanted to say, leave me alonnee. I just went on insulin pomp last week. it is the greatest thing. no more injections. I am loving it. It is the latest pump so there is no tubing attached to me. the wedding was wonderful. it was not just the celebration of our union. It was a celebration of overcoming all the things that we had gone though for the last six month. I have lost so much wight, my dress actually looked good on me, if I say so myself. lol. that was the best part. How are you doing? I bet it is nice to go back to a normal routine keep in touch and take care love homa dear susie. I didn't know I was going to have the wipple until the day before surgery. in a way it is good that I didn't know, didn't have it looming over my head and didn't have to worry about it until right before surgery. that is good that you don't have to take creon, the enzyme to help digest the food. I have been very lucky in regards to not having too many indigestions and upset stomachs. I did have it after surgery though, oh boy did I ever. the smell of food did bother me, and food had no taste. I have just started to get my appetite back after almost seven month. Are you still loosing weight? I guess this is a question for everyone who had surgery. for how long did you guys keep loosing weight? I think mine is starting to level off. I have not been able to buy clothes since surgery because I keep shedding the extra weight. I could be in one of those weight loss comertials like before and after. I had a bulging stomach because of the hernia. I looked like I was four month pregnent. My belly looks really good right now though. I am taking nexium probably have to take it indefinately. I am trying to look at things in the positive way. eating right and not eating much fat is something all of us need to do. in a way it is good that your body and mine doesn't digest the fat, since it is not good for us anyways, right, take care Homa Dear Kim
So good to hear from you and thank you for the sweet responce. it means a lot. My doctor didn’t know why my spleen was enlarged. he told me about it the day before surgery. I was going through information overload at the time, just to digest the fact that I was going to have pancreatectomy. so having the spleen removed was the least of my worries. yes I have been through a lot, but I managed to overcome it. whatever doens’t kill you makes you stronger, right, smile. It was difficulty coming to terms with diabetes. my poor little body went from having too much insulin to having none. I have always been horrified of needles, and suddenly I had to give myself insulin injections four times a day. that was the hardest part I went though the stages of adjustment, getting upset, angry, depressed. I have come to accept it now. My husband is diabetic, so he understood what I was going through. His love and support and guidance made the world of difference. I did have to learn a lot about what to eat and what to do. I was blessed to have worked with people who are diabetic, so i had a good head start on it. It was just overwhelming in the hospital, with all this people coming to see you to teach you things. I wanted to say, leave me alonnee. I just went on insulin pomp last week. it is the greatest thing. no more injections. I am loving it. It is the latest pump so there is no tubing attached to me. the wedding was wonderful. it was not just the celebration of our union. It was a celebration of overcoming all the things that we had gone though for the last six month. I have lost so much wight, my dress actually looked good on me, if I say so myself. lol. that was the best part.
How are you doing? I bet it is nice to go back to a normal routine
keep in touch and take care
love
homa

dear susie.
I didn’t know I was going to have the wipple until the day before surgery. in a way it is good that I didn’t know, didn’t have it looming over my head and didn’t have to worry about it until right before surgery. that is good that you don’t have to take creon, the enzyme to help digest the food. I have been very lucky in regards to not having too many indigestions and upset stomachs. I did have it after surgery though, oh boy did I ever. the smell of food did bother me, and food had no taste. I have just started to get my appetite back after almost seven month. Are you still loosing weight? I guess this is a question for everyone who had surgery. for how long did you guys keep loosing weight? I think mine is starting to level off. I have not been able to buy clothes since surgery because I keep shedding the extra weight. I could be in one of those weight loss comertials like before and after. I had a bulging stomach because of the hernia. I looked like I was four month pregnent. My belly looks really good right now though. I am taking nexium probably have to take it indefinately. I am trying to look at things in the positive way. eating right and not eating much fat is something all of us need to do. in a way it is good that your body and mine doesn’t digest the fat, since it is not good for us anyways, right,
take care
Homa

]]> By: Susie http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293082 Susie Sun, 17 Aug 2008 16:21:04 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293082 To Homa, Oh my G-d! You have really been through the wringer. I thought I had it bad. My surgeon always says to me we have been through the war together. My abdomen looks like a war zone. Having Diabetes is difficult but manageable. Millions of people have it and live very long lives, look at Mary Tyler Moore, she has Type 1 diabetes and is in her 70's now. I didn't know you were going to have a Whipple. Did food gross you out after having the surgery? Odors of food reallly bothered me especially garlic to this day. And I can't eat like I used too. I'm on Prevacid for the rest of my life to handle the stomach acids. I'm glad you are doing better and on the road to recovery. Take care. Susie To Homa,
Oh my G-d! You have really been through the wringer. I thought I had it bad. My surgeon always says to me we have been through the war together. My abdomen looks like a war zone.
Having Diabetes is difficult but manageable.
Millions of people have it and live very long lives, look at Mary Tyler Moore, she has Type 1 diabetes and is in her 70’s now. I didn’t know you were going to have a Whipple.
Did food gross you out after having the surgery? Odors of food reallly bothered me especially garlic to this day. And I can’t eat like I used too. I’m on Prevacid for the rest of my life to handle the stomach acids. I’m glad you are doing better and on the road to recovery. Take care.
Susie

]]> By: Kim http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293060 Kim Sun, 17 Aug 2008 15:09:28 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-293060 Dear Homa, So glad to hear from you at long last. I am relieved to hear that you're OK but it sounds like you have had a very difficult time and I am so sorry to hear about that. I guess you will be in all the medical journals. Why did they think your spleen was enlarged and have to remove it? Have you been able to handle the diabetes? Was it hard to learn how? You are very courageous and have a tremendous attitude to be able to be thankful - you have been thrown quite a curveball. I am so glad to hear that you finally had your wedding! I'm sure it was lovely. Take care of yourself and keep in touch. Kim Dear Homa,

So glad to hear from you at long last. I am relieved to hear that you’re OK but it sounds like you have had a very difficult time and I am so sorry to hear about that. I guess you will be in all the medical journals. Why did they think your spleen was enlarged and have to remove it? Have you been able to handle the diabetes? Was it hard to learn how? You are very courageous and have a tremendous attitude to be able to be thankful - you have been thrown quite a curveball. I am so glad to hear that you finally had your wedding! I’m sure it was lovely.

Take care of yourself and keep in touch.

Kim

]]> By: Homa http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292768 Homa Sun, 17 Aug 2008 05:01:39 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292768 Hi Everyone It has been a very long time since I have posted a blog here. For those of you who remember me, my surgery was successful. For those of you who are new and do not know me, I had insulinoma for six years. I was diagnosed three years a go. I had an unsucessful exploratory surgery done in 2006. I went to MD Anderson Cancer Center in Houston and had my surgery on January 16th. I had an angigram done the week before the surgery. When I went to talk to my surgon the day before the surgery I found out that I had multiple tumors. He said that he probably had to do a total pancreatectomy. You can imagine my shock. He also said that my spleen was larger than it should be so he was going to remove it. I was also scheduled to have an incisional hernia repair operation done right after the operation for insulinoma. I developed the incisional hernia after my first operation. My surgery lasted 12 hours. I had a total pancreatectomy, spleenectomy, had my galbladder removed and of course part of the stomach and duodenom, I can't remember how to spell that one. the pathology result showed that I had 22 tumors all over the pancreas. My doctor was only able to see seven or eight of them the rest were too small to see. Dr. Evens, my surgon said that there has only been two cases documented of multiple tumors like mine. He said this before the operation. I don't even know that those documented cases had as many tumors as I did. As a result of surgery I became diabetic I was in the hospital for two weks. My recovery period was very long and not pleasant. As susie said it, no one tells you about thie nausea and vomiting that folows. I was on anti nausea medicine for three month after surgery. It was quite an adjustment mentally and physically to come to terms with becoming a diabetic. I went from one extream to another. talk about drastic change in the diat. what killed me was everyone saying, well, this is better than what you had. I don't see it that way, I went from one bad illness to another. granted I have more control over this, but diabetes has more of long term effect on the body. I stayed home for six month. I was supposed to go to work after two month, but I developed comlocations. I had a bile leakage. I had a cathedar put in for 4 month. I went back and forth to MD Anderson five more time after surgery for the leakage. considering what a huge operation I had, some kind of complication was to be expected. it could have been worse. I did manage to have my big beautiful wedding finally in June. Susan you were right, I had to get my wedding dress ultered again. I lost a total of 40 pounds. I just went back to work and I have an insulin pump now. which is great. I am starting to accept things and be thankful. because it could have been worse. I thought about you gusy a lot. I wanted to put a post, but my computer crashed. I have adaptive software that makes the font bigger and I lost that and had to wait to get a new software. so I am just now able to write to you gusy. I don't want anyone who have not had their surgery be afraid of getting what happened to me. insulinoma is rare and what I had was the rarest of the rare. I always get weird things happen to me. Peggy I am glad your surgery went well. How are youfeeling now. Susie I am curiouse about something. After having the wipple, do you have to take enzymes to help digest the food like I do. they really help in digesting the fatty food, even though I don't eat too much fatty food. has anyone else in here became daibetic after surgery or anyone had pancreatectomy? I would love to hear about your experience. I still experience twinges of pain here and there. Lauren How are you doing? I thought of you everytime I went to Houston. Angie and Kim I hope you guys are doing great. nice to be back here agian Homa. Hi Everyone
It has been a very long time since I have posted a blog here. For those of you who remember me, my surgery was successful. For those of you who are new and do not know me, I had insulinoma for six years. I was diagnosed three years a go. I had an unsucessful exploratory surgery done in 2006. I went to MD Anderson Cancer Center in Houston and had my surgery on January 16th. I had an angigram done the week before the surgery. When I went to talk to my surgon the day before the surgery I found out that I had multiple tumors. He said that he probably had to do a total pancreatectomy. You can imagine my shock. He also said that my spleen was larger than it should be so he was going to remove it. I was also scheduled to have an incisional hernia repair operation done right after the operation for insulinoma. I developed the incisional hernia after my first operation. My surgery lasted 12 hours. I had a total pancreatectomy, spleenectomy, had my galbladder removed and of course part of the stomach and duodenom, I can’t remember how to spell that one. the pathology result showed that I had 22 tumors all over the pancreas. My doctor was only able to see seven or eight of them the rest were too small to see. Dr. Evens, my surgon said that there has only been two cases documented of multiple tumors like mine. He said this before the operation. I don’t even know that those documented cases had as many tumors as I did. As a result of surgery I became diabetic I was in the hospital for two weks. My recovery period was very long and not pleasant. As susie said it, no one tells you about thie nausea and vomiting that folows. I was on anti nausea medicine for three month after surgery. It was quite an adjustment mentally and physically to come to terms with becoming a diabetic. I went from one extream to another. talk about drastic change in the diat. what killed me was everyone saying, well, this is better than what you had. I don’t see it that way, I went from one bad illness to another. granted I have more control over this, but diabetes has more of long term effect on the body. I stayed home for six month. I was supposed to go to work after two month, but I developed comlocations. I had a bile leakage. I had a cathedar put in for 4 month. I went back and forth to MD Anderson five more time after surgery for the leakage. considering what a huge operation I had, some kind of complication was to be expected. it could have been worse. I did manage to have my big beautiful wedding finally in June. Susan you were right, I had to get my wedding dress ultered again. I lost a total of 40 pounds. I just went back to work and I have an insulin pump now. which is great. I am starting to accept things and be thankful. because it could have been worse. I thought about you gusy a lot. I wanted to put a post, but my computer crashed. I have adaptive software that makes the font bigger and I lost that and had to wait to get a new software. so I am just now able to write to you gusy. I don’t want anyone who have not had their surgery be afraid of getting what happened to me. insulinoma is rare and what I had was the rarest of the rare. I always get weird things happen to me.
Peggy I am glad your surgery went well. How are youfeeling now.
Susie
I am curiouse about something. After having the wipple, do you have to take enzymes to help digest the food like I do. they really help in digesting the fatty food, even though I don’t eat too much fatty food.
has anyone else in here became daibetic after surgery or anyone had pancreatectomy? I would love to hear about your experience. I still experience twinges of pain here and there.
Lauren
How are you doing? I thought of you everytime I went to Houston.
Angie and Kim
I hope you guys are doing great.
nice to be back here agian
Homa.

]]> By: Janet http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292415 Janet Sat, 16 Aug 2008 20:03:23 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292415 Persephonie! What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow. Love to all on this forum. Janet xx Persephonie!
What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow.

Love to all on this forum.
Janet xx

]]> By: Janet http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292416 Janet Sat, 16 Aug 2008 20:03:23 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292416 Persephonie! What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow. Love to all on this forum. Janet xx Persephonie!
What Pegy says is absoloutely right. We all sympathise with the loss of control that this illness brings. I was first wrongly diagnosed with epilepsy and at one stage, before they located my first insulinoma I thought I was losing my mind, being out of control of your body is so awful. Some of your symptons do sound very typical, but Peggys advice of seeing an endrocrinologist is spot on. I used to have to have food in the middle of the night to hope that I would wake up in the morning. Even now on all the medication I still have night hypos but not as severe as before. I so hope you grt sorted. My prayers are with you. Thank you for your wishes for my son and his new wife. Thet return from their honeymoon in Lanzarote tommorrow.

Love to all on this forum.
Janet xx

]]> By: Susie http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292308 Susie Sat, 16 Aug 2008 15:15:13 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292308 To Nicky, This website is strange. I wrote a long email to you and hit the submit button and it never went through. I did have a whipple done, on Feb 15 of this year. Make sure your surgeon has done many of these. My surgeon has done the most Whipples in the U.S. Actually his speciality is repeat surgeries on the pancreas. Be prepared for a long recovery. Make sure you have someone to prepare your meals, watch the kids, clean your house. I couldn't do anything for a very long time. You have to relearn to eat again. No more regular size portions. You will get very sick and throw-up if you eat too much. The nausea & vomiting, no one tells you about this is very unpleasant. I would wake up feeling fine and about noon time start feeling nausea the rest of the day. It does finally pass though. The biggest thing with this surgery is eating very small portions and cutting out foods that contain lots of fat. No fried foods, foods containing mayo, use low-fat or fat free versions, When I order Chinese food I ask for them to make it with no fat. The fat will give you horrible indigestion and dirrahea. If I wasn't throwing up, I was having dirrahea. After 6 months my digestive system has calmed down. But I'll never be able to eat like I used to before the surgery. When we go out to dinner I split an entree or I just eat off my husband and kids plates. My surgeons say I'll live longer by eating less. Another side effect to this surgery is losing lots of weight. I have lost 40lbs. My insulinoma caused me to gain so much weight so the weight loss has been the one good thing coming out of this surgery and of course not having an insulinoma anymore. I'll be honest with you, I have had 2 C-sections, a hysterectomy and the first pancreas operation, the whipple is by far the worse procedure for recovery. It is a big surgery and usually lasts about 7 hours. The doctors don't tell you about the side effects to the surgery, I guess they don't want to scare us. But now I'm swimming 3miles a week, walking and lifting light weights. I'm so trim, and feel great. Good luck with your surgery you'll be fine. Let me know how it goes. Susie To Nicky,
This website is strange. I wrote a long email to you and hit the submit button and it never went through. I did have a whipple done, on Feb 15 of this year. Make sure your surgeon has done many of these. My surgeon has done the most Whipples in the U.S. Actually his speciality is repeat surgeries on the pancreas. Be prepared for a long recovery. Make sure you have someone to prepare your meals, watch the kids, clean your house. I couldn’t do anything for a very long time. You have to relearn to eat again. No more regular size portions. You will get very sick and throw-up if you eat too much. The nausea & vomiting, no one tells you about this is very unpleasant. I would wake up feeling fine and about noon time start feeling nausea the rest of the day. It does finally pass though. The biggest thing with this surgery is eating very small portions and cutting out foods that contain lots of fat. No fried foods, foods containing mayo, use low-fat or fat free versions, When I order Chinese food I ask for them to make it with no fat. The fat will give you horrible indigestion and dirrahea. If I wasn’t throwing up, I was having dirrahea.
After 6 months my digestive system has calmed down. But I’ll never be able to eat like I used to before the surgery. When we go out to dinner I split an entree or I just eat off my husband and kids plates. My surgeons say I’ll live longer by eating less.
Another side effect to this surgery is losing lots of weight. I have lost 40lbs. My insulinoma caused me to gain so much weight so the weight loss has been the one good thing coming out of this surgery and of course not having an insulinoma anymore.
I’ll be honest with you, I have had 2 C-sections, a hysterectomy and the first pancreas operation, the whipple is by far the worse procedure for recovery. It is a big surgery and usually lasts about 7 hours.
The doctors don’t tell you about the side effects to the surgery, I guess they don’t want to scare us.
But now I’m swimming 3miles a week, walking and lifting light weights. I’m so trim, and feel great.
Good luck with your surgery you’ll be fine. Let me know how it goes.
Susie

]]> By: Rachelle http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292003 Rachelle Sat, 16 Aug 2008 05:11:05 +0000 http://www.unboundedmedicine.com/2006/01/15/insulinoma-whipple-triad-surgery/#comment-292003 Peggy, Thanks for writing back. I thought my post was deleted. I am going to a new endocrinologist on August 29th per the advice of my gastroenterologist . I have had the appointment since May 12th. My stomach doctor insisted that I see him. Hopefully, I will have a better experience with this doctor he referred me to. It just took so long to get into him. Thank you for your info regarding the reliability of CT Scans, octreiotide scan, and endoscopy. My gastroenterologist shared that same info with me the last time I was in......that is why he really wants me to see the new specialist. I have heard that the 72 hour fast is usually what helps to confirm it. I am keeping my fingers crossed! If this post makes it through I will give you an update after my appointment on August 29th. Thanks again for taking the time to write back. I thought I was deleted. I promise I won't send any more novel length posts:). Peggy,

Thanks for writing back. I thought my post was deleted. I am going to a new endocrinologist on August 29th per the advice of my gastroenterologist . I have had the appointment since May 12th. My stomach doctor insisted that I see him.
Hopefully, I will have a better experience with this doctor he referred me to.
It just took so long to get into him. Thank you for your info regarding the reliability of CT Scans, octreiotide scan, and endoscopy. My gastroenterologist shared that same info with me the last time I was in……that is why he really wants me to see the new specialist. I have heard that the 72 hour fast is usually what helps to confirm it.
I am keeping my fingers crossed! If this post makes it through I will give you an update after my appointment on August 29th. Thanks again for taking the time to write back. I thought I was deleted. I promise I won’t send any more novel length posts:).

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