Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Maybe there's some mistake, Lynn (and I hope the mistake wasn't to take out your spleen and not tell you). Wow! Maybe they wrote splenectomy and they meant gastrectomy? Let us know what the GI doctor says. [ ] test back > Hi, > Well my cat scan and GI x-rays are in and it was I thought it would > be. I am still waiting for the GI doctor to call. But they didn't find > anything. At least no blockages or anything like that. So I guess all > the problems are scar tissue. This is what the GI doctor told me, she > thought they would find. However, when I had these test done a year ago > the reports only said post whipple. Now the reports say post whipple > including a spenectomy. My question is when did they take out my > spleen????? I don't know why it was taken out, or when. I was thinking > that since bleeding became such a problem after the second surgery, they > removed it but I don't know. I an waiting for the GI doctor. , you > know to is going to get a call. Would have been nice if he had told > me about this. From what I read there are a few precautions I need to > take, not having a spleen. I am absolutely floored about all this. If > I hadn't had to go for these test I would never have known about this > spleen thing. Hope everyone is having a good day. > Lynn (MeMom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Hi , I talked with the GI doctor and she feels a mistake has been made. She does not recall anything about taking out the spleen. I am going to call the hospital tomorrow and ask that they reread the x-ray and look for a spleen. On the other hand she told me there is nothing she can do for me. She is recommending pain management and wants me to go see them. She said there is no doubt that all the pain is scar tissue and that it would not show up on the test. I feel like I am between a brick and a hard place. I will talk to my primary and see what he thinks. I am suppose to go back to the GI doc in July but I will cancel that. She did say there is nothing more she can do. My primary will just take over. Really I don't want anyone touching the scar tissue if it can be helped. Some mess huh, I didn't think it would all turn out like this. Lynn wrote: > Maybe there's some mistake, Lynn (and I hope the mistake wasn't to take > out your spleen and not tell you). Wow! Maybe they wrote splenectomy and > they meant gastrectomy? > > Let us know what the GI doctor says. > > > > [ ] test back > > > Hi, > > Well my cat scan and GI x-rays are in and it was I thought it > would > > be. I am still waiting for the GI doctor to call. But they didn't > find > > anything. At least no blockages or anything like that. So I guess > all > > the problems are scar tissue. This is what the GI doctor told me, she > > thought they would find. However, when I had these test done a year > ago > > the reports only said post whipple. Now the reports say post whipple > > including a spenectomy. My question is when did they take out my > > spleen????? I don't know why it was taken out, or when. I was > thinking > > that since bleeding became such a problem after the second surgery, > they > > removed it but I don't know. I an waiting for the GI doctor. , > you > > know to is going to get a call. Would have been nice if he had > told > > me about this. From what I read there are a few precautions I need to > > take, not having a spleen. I am absolutely floored about all this. > If > > I hadn't had to go for these test I would never have known about this > > spleen thing. Hope everyone is having a good day. > > Lynn (MeMom) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Maybe now is the time for a trip to s Hopkins or Mayo, Lynn? Re: [ ] test back > Hi , > I talked with the GI doctor and she feels a mistake has been made. She does > not recall anything about taking out the spleen. I am going to call the hospital > tomorrow and ask that they reread the x-ray and look for a spleen. On the other > hand she told me there is nothing she can do for me. She is recommending pain > management and wants me to go see them. She said there is no doubt that all the > pain is scar tissue and that it would not show up on the test. I feel like I am > between a brick and a hard place. I will talk to my primary and see what he > thinks. I am suppose to go back to the GI doc in July but I will cancel that. > She did say there is nothing more she can do. My primary will just take over. > Really I don't want anyone touching the scar tissue if it can be helped. Some > mess huh, I didn't think it would all turn out like this. > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 I hope it was a mistake Lynn. I wish you had other options besides pain management. Has your doctors mentioned taking digestive enzymes to help you digest food? a > Hi , > I talked with the GI doctor and she feels a mistake has been made. She does > not recall anything about taking out the spleen. I am going to call the > hospital > tomorrow and ask that they reread the x-ray and look for a spleen. On the > other > hand she told me there is nothing she can do for me. She is recommending pain > management and wants me to go see them. She said there is no doubt that all > the > pain is scar tissue and that it would not show up on the test. I feel like I > am > between a brick and a hard place. I will talk to my primary and see what he > thinks. I am suppose to go back to the GI doc in July but I will cancel that. > She did say there is nothing more she can do. My primary will just take over. > Really I don't want anyone touching the scar tissue if it can be helped. Some > mess huh, I didn't think it would all turn out like this. > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hi a, No she didn't mention the enzymes. She told me there is really nothing she can do for me. That is why she suggested pain management. But since it is scar tissue wouldn't it at some point have to be dealt with. I wouldn't want anyone operating on me at this point. I have had all the surgery I want but with the pain and scar tissue seems to me it will only get worse. I think I will get more answers when I see the primary on Saturday. He was not in favor of pain management, he told me, we needed to talk. I always feel better after I talk to him. I will be calling the hospital tomorrow to ask that they reread the x-rays. If they don't find a spleen, the surgeon gets a phone call. I won't deal with his residents either, he will have to be the one to answer the questions. When I talked to the GI doctor I could almost feel her frustration, when she said there is nothing to be done. I really believe she doesn't know what to do. How are you feeling? Is the pain any better in your jaw? Lynn a wrote: > I hope it was a mistake Lynn. I wish you had other options besides pain > management. Has your doctors mentioned taking digestive enzymes to help you > digest food? > a > > > > Hi , > > I talked with the GI doctor and she feels a mistake has been made. She does > > not recall anything about taking out the spleen. I am going to call the > > hospital > > tomorrow and ask that they reread the x-ray and look for a spleen. On the > > other > > hand she told me there is nothing she can do for me. She is recommending pain > > management and wants me to go see them. She said there is no doubt that all > > the > > pain is scar tissue and that it would not show up on the test. I feel like I > > am > > between a brick and a hard place. I will talk to my primary and see what he > > thinks. I am suppose to go back to the GI doc in July but I will cancel that. > > She did say there is nothing more she can do. My primary will just take over. > > Really I don't want anyone touching the scar tissue if it can be helped. Some > > mess huh, I didn't think it would all turn out like this. > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Dearest Lynn...I am so sorry you are going through all this. You have had your share of bumps in the road and then some! Please know you're in my heart & in my prayers. ((((((((((((((Lynn)))))))))))) Much Love..... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hi , I am not sure what to do. I see my primary on Saturday so I hope he has some suggestions. This pain I am in is just getting worse and worse. Today it is terrible. This is all so frustrating. I called the hospital and should know this afternoon if a mistake has been made. I explained that I have had a whipple and they may have to look around for the spleen. It is probably not in the right place. I will let you know what they tell me. I can't believe it is raining here again. It is raining so hard that Laurie called and her very short walk to the train from the parking lot left her soaked. It seems to be never ending rain. Lynn wrote: > Maybe now is the time for a trip to s Hopkins or Mayo, Lynn? > > > > Re: [ ] test back > > > Hi , > > I talked with the GI doctor and she feels a mistake has been made. > She does > > not recall anything about taking out the spleen. I am going to call > the hospital > > tomorrow and ask that they reread the x-ray and look for a spleen. On > the other > > hand she told me there is nothing she can do for me. She is > recommending pain > > management and wants me to go see them. She said there is no doubt > that all the > > pain is scar tissue and that it would not show up on the test. I feel > like I am > > between a brick and a hard place. I will talk to my primary and see > what he > > thinks. I am suppose to go back to the GI doc in July but I will > cancel that. > > She did say there is nothing more she can do. My primary will just > take over. > > Really I don't want anyone touching the scar tissue if it can be > helped. Some > > mess huh, I didn't think it would all turn out like this. > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Hi Tess, I am so frustrated, I really try not to let all this get to me. But that is getting hard to do. I should know today if it is a mistake or not. I think maybe the doctor just didn't see the spleen. But boy if it is gone is that surgeon getting a call from me. He would have major explaining to do. Sorry to read you can't go to the conference. Maybe they will decide to pay for you, you would think they would do that anyway. Hope you day is good, Lynn tess_northwest@... wrote: > Dearest Lynn...I am so sorry you are going through all this. You have > had your share of bumps in the road and then some! Please know you're > in my heart & in my prayers. > > ((((((((((((((Lynn)))))))))))) > > Much Love..... > > Tess > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Lynn, the doctors you have seen, with the exception of to, have probably never had a Whipple patient before (especially one without pancreatic cancer). At both s Hopkins and Mayo, they have experience performing the Whipple procedure and undoubtedly have advised Whipple patients who have had the operation done elsewhere. I believe going to either institution would be very worthwhile. They could also advise what to do about your RA. Wouldn't it be nice to have a rheumatologist and gastroenterologist (and any other specialists they may recommend to you) work together, with the collective experience of their colleagues and the institution behind them, to help you? You deserve the most expert advice you can get. Re: [ ] test back > > > > > Hi , > > > I talked with the GI doctor and she feels a mistake has been made. > > She does > > > not recall anything about taking out the spleen. I am going to call > > the hospital > > > tomorrow and ask that they reread the x-ray and look for a spleen. On > > the other > > > hand she told me there is nothing she can do for me. She is > > recommending pain > > > management and wants me to go see them. She said there is no doubt > > that all the > > > pain is scar tissue and that it would not show up on the test. I feel > > like I am > > > between a brick and a hard place. I will talk to my primary and see > > what he > > > thinks. I am suppose to go back to the GI doc in July but I will > > cancel that. > > > She did say there is nothing more she can do. My primary will just > > take over. > > > Really I don't want anyone touching the scar tissue if it can be > > helped. Some > > > mess huh, I didn't think it would all turn out like this. > > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Dearest Lynn...you betcha I would be frustrated about all that, too! You are a brave and tenacious lady, and have every right to how you feel! I just pray you get news that will help. In any event, we are all here for you, dear Lynn. Much love, always... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 , I wish I could go to one of these hospitals. But right now finances won't permit me to do this. We are on a really strict budget. Thank you for the suggestion. I think if I could go to one of these places it would be a help. Lynn wrote: > Lynn, the doctors you have seen, with the exception of to, have > probably never had a Whipple patient before (especially one without > pancreatic cancer). At both s Hopkins and Mayo, they have experience > performing the Whipple procedure and undoubtedly have advised Whipple > patients who have had the operation done elsewhere. > > I believe going to either institution would be very worthwhile. They > could also advise what to do about your RA. Wouldn't it be nice to have > a rheumatologist and gastroenterologist (and any other specialists they > may recommend to you) work together, with the collective experience of > their colleagues and the institution behind them, to help you? You > deserve the most expert advice you can get. > > > > Re: [ ] test back > > > > > > > Hi , > > > > I talked with the GI doctor and she feels a mistake has been > made. > > > She does > > > > not recall anything about taking out the spleen. I am going to > call > > > the hospital > > > > tomorrow and ask that they reread the x-ray and look for a spleen. > On > > > the other > > > > hand she told me there is nothing she can do for me. She is > > > recommending pain > > > > management and wants me to go see them. She said there is no > doubt > > > that all the > > > > pain is scar tissue and that it would not show up on the test. I > feel > > > like I am > > > > between a brick and a hard place. I will talk to my primary and > see > > > what he > > > > thinks. I am suppose to go back to the GI doc in July but I will > > > cancel that. > > > > She did say there is nothing more she can do. My primary will > just > > > take over. > > > > Really I don't want anyone touching the scar tissue if it can be > > > helped. Some > > > > mess huh, I didn't think it would all turn out like this. > > > > Lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Thanks Tess, it is all frustrating. However as I wrote they did find the spleen. You know when I had the test done, I told them I had, had a whipple. You would think they would have looked a little harder before writing what they did. Oh well at least it is straightened out. How are you feeling today? I hope all is well. Lynn tess_northwest@... wrote: > Dearest Lynn...you betcha I would be frustrated about all that, too! > You are a brave and tenacious lady, and have every right to how you > feel! I just pray you get news that will help. In any event, we are > all here for you, dear Lynn. > > Much love, always... > > Tess > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Well maybe we should start talking about a creative solution to that problem, Lynn. I'll write you privately about this later. I believe they could offer better suggestions than you've gotten so far. Re: [ ] test back > , > I wish I could go to one of these hospitals. But right now finances won't > permit me to do this. We are on a really strict budget. Thank you for the > suggestion. I think if I could go to one of these places it would be a help. > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2003 Report Share Posted June 6, 2003 Oh Lynn, good grief! At least they " found " your spleen. I'm so sorry for all you have and are going through. Today I am just exhausted, hard to even walk. That usually happens after being " sun sick " . I will perk up in a few days. Much Love to You... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2006 Report Share Posted October 8, 2006 Gretchen, My heart goes out to you. I cannot advise you to do anything... I can tell you to research and test for the known causes of PFS and then go with your gut. When ph was little (just 2) I made the decision to go ahead with the tonsil surgery after his DNA came back negative and BECAUSE his throat involvement was INTENSE. He has grade IV tonsillitis each episode and he would dehydrate from inability to drink each month leading us to ER visits. I was not honestly thinking of a cure just a treatment to rid him of a terrible symptom that came along with his fevers. For US it did not work for the fevers however the terrible sore-throats and pus on his tonsils never returned. In the end the NIH did isolate new genes and a couple years AFTER his surgery they isolated one in ph... YET Kastner still feels ph has ANOTHER UNKNOWN mutation causing his symptoms. THe mutation he has causes NOMID and ph does not present in NOMID fashion. He is NOT blind nor is he losing his vision and he is not deaf nor losing his hearing and he does not have brain pressure etc.... No boney deformities either. So we fall in an unknown category still at this point. Would I remove his tonsils again... YES... it took away a big portion of pain and allowed ph to drink more readily lessening our visits to the ER! So go with your gut.... even if it does NOT rid the fevers it may help with the pharyngitis and discomfort allowing to attend school easier. Hope that helps you determine your plan. God Bless Fran Fran Bulone RN Mom to ph 7yr CIAS1 mutation 11/05 Waxhaw NC / Quote Link to comment Share on other sites More sharing options...
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