Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 Birgit: As I have posted, there are specialized nerve blocks that have had some success with chronic pancreatitis. Unlike those done around the spine, these are performed via an upper endoscope that is guided by ultrasound. The endoscopist locates the bundle of nerves in the actual gut wall (celiac plexus) and quickly injects it with a small amount of Bupivicaine. That's simply a local anesthetic. The goal is for it to " tell " the nerves to stop sending the pain message to the brain. These blocks have had a 70% success rate of giving some or full pain relief for an average of fourteen weeks. I've undergone several. Honestly, the first one did nothing. But subsequent ones lasted from three months to now almost two years! Each person's pain level responds differently. Since undergoing the blocks, I've not needed the heavy narcotics. I do, however, take Ultram and Prozac for the residual pain. I know that the blocks are performed in Indianapolis. That's where my doctor trained. He does his magic work here on Long Island, NY. He is Gress, MD of Winthrop-University Hospital in Mineola, NY. You can reach his office at 516 663-2066. I have referred others to him. -Ellen Grove Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 I completely agree. I try to get to the chat room as often as possible but sometimes I am unable to attend. We are in the chat room right now if you would like to come in. :-) Mark E. Armstrong www.top5plus5.com Oregon State Chapter Rep Pancreatitis Association, International Re: pain,functioning > Hey Mark....I think it would be really great if we could everyone together in > the chat room....at the same time! What do you think about asking everyone > what a good time for them to meet would be? I log on every night and find > that I have to talk to myself, not that this is unusual, but I have already > heard all of my stories > Maybe having chats 2 or three nights a week would make it easier for everyone > to get there and stay there. Just a thought from someone sick of just > chatting amongst myself. Any thoughts? > Holly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2001 Report Share Posted November 29, 2001 Dear Birgit, Most of us here have been where you are now or are there right now. I too,rarely leave my house. I do do home schooling and have little energy left over. I don't have a social life for the reasons you described. Many healthy people don't have time to be bothered with someone so ill and in pain. I have come to accept that and that's why I socialize here among people like me who understand without me having to say anything. I was in severe daily pain until the doctor ordered pain control on a regular basis. Since I've had fairly good pain control I can eat better than before. Without pain treatment,I hardly ate at all. Mostly drank pedialyte,gatorade,and ate cream of rice now and then. That may be part of the reason that I'm in the beginning stages of osteoporosis. I am only 33 years old. I don't really have advice,just support for you. Perhaps your meds should be increased or changed because no one should have to live in agony 24 hours a day. Don't give up,stay encouraged. We have to have the hope that things will get better eventually. Your pancreatic symptoms may go up and down. They're worse for awhile,better for awhile and so on. You may just be going through an especially hard time right now,but things may improve. Don't give up hope! I'll keep you in my prayers, Your friend, Amy > > Hello, > I am quite desperate since I have constant pain and really cannot > eat. I understand that some of you are functioning well inspite and even go > to work.How do you do this? What is your paincontrol and what do you eat? I > am on Oxy contin and Vicodin or Oxy ir prn.I am totally consumed by this > daily pain and really could not work even though I would love to.Does the > pain ever go away?I am confined to my house and dont socialize anymore,my > friends do not want to hear about this constant pain anymore.How do you get > out of this slump? Do you have painfree intervals?What do you eat for > breakfast,lunch and dinnr? > > I envy the ones that are working,I need to go to work badly since all my > money has run out.How do you do it,are you able to eat and pain controlled/ > I would appreciate any help or advise.my life is just miserable now and i > am getting really malnourised.Was already on TPN but develope a nextensive > thrombosis in this arm,taking bloodthinners. > Help! Birgit Belcher > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Ellen - I had no idea that Prozac could be used for pain control. I have taken it for quite some time for depression but never realized that it might have that benefit as well. Thanks. TTFN, Re: pain,functioning > Birgit: > > As I have posted, there are specialized nerve blocks that have had some > success with chronic pancreatitis. > > Unlike those done around the spine, these are performed via an upper > endoscope that is guided by ultrasound. > > The endoscopist locates the bundle of nerves in the actual gut wall (celiac > plexus) and quickly injects it with a small amount of Bupivicaine. That's > simply a local anesthetic. > > The goal is for it to " tell " the nerves to stop sending the pain message to > the brain. > > These blocks have had a 70% success rate of giving some or full pain relief > for an average of fourteen weeks. > > I've undergone several. Honestly, the first one did nothing. > But subsequent ones lasted from three months to now almost two years! > > Each person's pain level responds differently. > > Since undergoing the blocks, I've not needed the heavy narcotics. > > I do, however, take Ultram and Prozac for the residual pain. > > I know that the blocks are performed in Indianapolis. > That's where my doctor trained. > He does his magic work here on Long Island, NY. > > He is Gress, MD of Winthrop-University Hospital > in Mineola, NY. You can reach his office at 516 663-2066. > > I have referred others to him. > > -Ellen Grove > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: PancreatitisYahoogroups > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeYahoogroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Birgit - Know that you have my sympathy and support. I have only had this since July of this year so am a real novice when it comes to this stuff. I do work, take care of my twin granddaughters overnight once a month (their only 5 months old but I hope to continue this practice for a very long time), keep house (with help) and try to go about my daily life as usual. Pain control for me consists mostly of tylenol although I do end up using vicodan for the more intense episodes - the doctor told me no ibuprofen or naproxin ever but that might just be for me because I know others can use them. Eating consists mostly of about 30 grams of fat per day - and believe me that is my personal max because if I go over that I pay for it - and 15 pills a day (not counting the pain killers) so I am pretty sure that I rattle when I walk. I find that low fat also tends to be high carbohydrate because most things like bread, pasta, etc., are 0 or low fat. I find I eat 3 times a day and don't dare skip a meal or be late because those have their own consquences for me - usually a wheat bagel with light or fat free cream cheese for breakfast, a Subway meal for lunch (Subway ought to receive some sort of special award for those of us that work to far away from home to go home for meals and have to eat out everyday) and then dinner varies. I can tell you that I have eaten more turkey and chicken in the last 6 months than I probably ever ate in my life before CP. Others will probably send you a lot of good suggestions as well but if you are not hospitalized and still in that much pain I would be for jumping all over a doctor to get something going. TTFN, pain,functioning > > Hello, > I am quite desperate since I have constant pain and really cannot > eat. I understand that some of you are functioning well inspite and even go > to work.How do you do this? What is your paincontrol and what do you eat? I > am on Oxy contin and Vicodin or Oxy ir prn.I am totally consumed by this > daily pain and really could not work even though I would love to.Does the > pain ever go away?I am confined to my house and dont socialize anymore,my > friends do not want to hear about this constant pain anymore.How do you get > out of this slump? Do you have painfree intervals?What do you eat for > breakfast,lunch and dinnr? > > I envy the ones that are working,I need to go to work badly since all my > money has run out.How do you do it,are you able to eat and pain controlled/ > I would appreciate any help or advise.my life is just miserable now and i > am getting really malnourised.Was already on TPN but develope a nextensive > thrombosis in this arm,taking bloodthinners. > Help! Birgit Belcher > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: PancreatitisYahoogroups > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeYahoogroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2001 Report Share Posted December 1, 2001 Dear Birgit: Are you seeing specialist for your paincontrol? My doc put me on a new painkiller yesterday....Actiq. It is a lollipop! It is the same med in duragesic patch, but it is a sucker. It still isn't touching the pain, but I am titrating it to find a dose that works well for me. Your story sounds so much like mine! I too get itching real bad with oxy's. I was on 20 mg 3x day. I see the doc on Thursday and will tell him I still need a med for full time pain control and use the suckers for breakthrough pain. This disease is horrible! Well, I'm going to have to get off of here. I am so tired and all my muscles are in spasm! Take care and please write soon. Always, Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 hi, this disease is mean and hard to fight. i completely understand your situation. i am the mother of 2 i am 33 and i have chronic pancreatitis. i too was on tpn a few times now my treatment is mearly nutrition, enzymes and mepregan.. the good news..its working for now my good days are becoming more frequent. my best advise right now.. just listen to your body.. fight the pain as best as you can.. rest, cautiously eat and try not to worry about work until you are healthier.. many of the members on this site have similar situations and lots of good advice. i hope you find relief and lots of comfort and support. talk with you soon michelle in ga --- birgit belcher wrote: > > Hello, > I am quite desperate since I have constant > pain and really cannot > eat. I understand that some of you are functioning > well inspite and even go > to work.How do you do this? What is your > paincontrol and what do you eat? I > am on Oxy contin and Vicodin or Oxy ir prn.I am > totally consumed by this > daily pain and really could not work even though I > would love to.Does the > pain ever go away?I am confined to my house and dont > socialize anymore,my > friends do not want to hear about this constant pain > anymore.How do you get > out of this slump? Do you have painfree > intervals?What do you eat for > breakfast,lunch and dinnr? > > I envy the ones that are working,I need to go to > work badly since all my > money has run out.How do you do it,are you able to > eat and pain controlled/ > I would appreciate any help or advise.my life is > just miserable now and i > am getting really malnourised.Was already on TPN but > develope a nextensive > thrombosis in this arm,taking bloodthinners. > Help! Birgit Belcher > > _________________________________________________________________ > Get your FREE download of MSN Explorer at > http://explorer.msn.com/intl.asp > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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