Has anyone experienced paralyzing abdominal pain after having the Whipple along with Chemo and Radiation?

I am a two year survivor of pancreatic cancer. It was stage 3 when I had the whipple procedure done November 2, 2010. I had six months of chemo and thirty five rounds of radiation after the surgery. They removed the tumor and fourty four lymph nodes, of which 12 were cancerous. I am cancer free, but paying the price from the aggressive after treatment. I am a fourty seven year old, very active and athletic man. Over the last 8 months, as I am recovering very nicely, I will have paralyzing pain in my abdominal area that goes to my upper right back. It literally takes my breath away and buckles me to my knees and then it passes. I am not eating well or sleeping as a result. The Dr's don't know why (one thought is nerves severed during the surgery are still healing...) or what I can do to prevent these episodes from occuring. Has anyone heard or experienced this type of pain I am describing? I would be so grateful to hear any thoughts you have. It is debilitating and affecting my quality of life in a huge way. Thanks for any input.

I have heard others refer to this as whipple pain.  The doctors don't really know what is going on with it, which is frustrating.  I experience all kinds of mystery, or "whipple" pains, mostly sharp ones that come and go like you described. However, mine lack the back involvement. Maybe I will have to life with it, but it's better than the alternative.  :)

I am 40 years old and WAS active and athletic.  Now not so much.  I am glad you have recovered your fitness, I am striving to do the same. 

I have serious pain from whipple 2 years ago I am having hernia surgery and then referal to pain management drs don't know why the pain I have tried nerve pain meds,fentanyl patches .oxy norm and contin slow release nothing has helped looking forward till after surgery for help so I know how you feel mine is constant does not suddenly attack

bushy

I have had that sharp pain only once. It happened when I was trying to rake the leaves. It does bring you down fast, but lasts only minutes which seems to go on forever.

But I am like bushy, I have constant pain day in, day out since my whipple 9/1/2011. Some days worse than others. Doctor doesn't seem to understand it. He claims no one else has this pain. It starts out as a dull pain on my right side going around to the back. If I don't get a jump on it it continues to worsen to the whole region of the whipple. It sometimes feels like a huge gaping wound inside, or sometimes the pulling of what feels like stitches. But it is there everyday. I did not have this pain befor the whipple. I had turned jaundice and they DX the tumor from there. I was DX with stage II andrencarsinmoa (sp?). No lymph node involved.

I sometimes wish I was told about different types of surgery, ie, nanoknife? And then my six months of chemo. so far my last scan came back NED. Still the thought of being on pain meds for the rest of my life......... I can relate to bushy, is this the pain you have?  As for the sharp pains of that one attack......... I advoid any push, pull kind of activity. 

Candy

lucky2Bhere

I have Two pains one like you on the right hand side just under my rib cage about the size of a fist it also radiates around to my kidneys the pain feel like a brick is there but the radiating around to the back is only occasionally.while the fist pain never goes, all my pains are made worse by sitting which makes it a bit awkard so I have practically worn out our couch by laying down I also wear a back support that seems to help, walking is more pain without the support, I would not be mobile,Please don't think I am complaining to much as this is not my intention just stating so maybe someone else can try a back support and it may help them

I have more pain under the length of the incision which as the day goes on the pain gets worse also my muscles tighten up like a bow string but I am very lucky I have a great relationship with my surgeon and GP and they believe about the pain,I am having waiting for surgery to have a double hernia repaired he said that may partly be causing a problem so we will wait and see I have read of lots of whipple survivors needing hernia surgery so it must be a problem after surgery,If I find out anymore about relief lucky2bhere I will certainly let you know feel free to PM any time

bushy

Thanks for the reply bushy, hopefully alot of your pain is from the hernias. How long do you have to wait for the surgery? Walking for me is good.....sometimes I feel better. But I am much slower of a walker now, & I tire faster. Is your incision vertical, up & down? Mine is from side to side just under my ribs. No hernia. I wonder about scare tissue or in my last scan it mentioned how visible my "multiple clips" are. I was surprised, I didn't know they put multiple clips in there!

But to tell the truth, any pain makes you wonder!! And more than a year after the Whipple?? Really, still pain, still tire so fast?? I was very active before....... now not so much. I will be anxious to hear how you are doing after the hernia surgery.  I too do not want to complain, I think that everyday past the year mark is a blessing to be with my family. Just when Drs. can't explain why the pain........ I wonder, if their are others out there who have chronic pain too. 

To the others who have the bouts of sharp pain occasionally, I do believe we all get this. And the good doctors know about it too!

God Bless & comfort all!!

Candy

On Oct 30, 2012 12:09 AM shayman wrote:

I am a two year survivor of pancreatic cancer. It was stage 3 when I had the whipple procedure done November 2, 2010. I had six months of chemo and thirty five rounds of radiation after the surgery. They removed the tumor and fourty four lymph nodes, of which 12 were cancerous. I am cancer free, but paying the price from the aggressive after treatment. I am a fourty seven year old, very active and athletic man. Over the last 8 months, as I am recovering very nicely, I will have paralyzing pain in my abdominal area that goes to my upper right back. It literally takes my breath away and buckles me to my knees and then it passes. I am not eating well or sleeping as a result. The Dr's don't know why (one thought is nerves severed during the surgery are still healing...) or what I can do to prevent these episodes from occuring. Has anyone heard or experienced this type of pain I am describing? I would be so grateful to hear any thoughts you have. It is debilitating and affecting my quality of life in a huge way. Thanks for any input.

Thank you all for your thoughts and experience. It's good to know that I'm not the only one who feels these debilitating pains. I hope for a more definitive reason as to why this happens and what can be done to prevent it. It seems as though this is simply part of the "recovery" process and that it will take time for these episodes of pain to stop completely. I will remain hopefull that this is not for the rest of my life...what other choice is there?

lucky2behere

I don't know how long to surgery i have  be paitient my scar also runs the same as you and the pain runs the length of the scar sorry so long for reply i have a chest infection that has flattened me your pain under the scar sounds very much like my pain i am hoping surgery will help but don't know at least my surgeon will have a good look around