Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hi , Yes, my surgery failed due to the tortuosity in my duct. What a let down. I thought the madness would be over after that 5 hour surgery. I really don't know what to recommend for you. My surgeon really went back and forth on the sphincteroplasty and the Whipple. She really decided that the sphincteroplasty would help and decided, at surgery, not to do the Whipple. I am glad she didn't because I have damage to my whole pancreas and have been told by my GI specialists that the Whipple would not have helped me at all. My only surgical option now is the IC-TPT. Prior to the surgery I had had 4 ERCP's with stenting that only gave me benefit about 6 weeks each time. Have you had this done? Also, what kind of damage to you have to your pancreas? If you know that you have damage " all over " I would recommend not doing the Whipple. Now, this is only my recommendation, but most likely you would be in the same shoes as I am and they are not good shoes!!!! Let me know about your damage, surgeries, etc. and I would be very glad to help you in any way that I can. Thoughts and prayers. T. (Ohio) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2005 Report Share Posted March 21, 2005 My Address is 18045 Raymer ST. Northridge, CA 91325. I cannot say anything more except I tried my best as a mom. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: jayvelde@... Sent: Monday, March 21, 2005 1:04 PM To: Mito Subject: Re: TO SUHAD Suhad I don't think any of us has the right words to say to you right now. Your pain must be incredibly unbearable. I have been combing my emails for days, looking for an update on Leanna. When I saw your post today, I prayed so hard it was good news before I opened it. I was devastated to read that Leanna lost her battle, and is no longer with you. I wish there was something I could do for you, but know there is nothing. My heart breaks for you and your family and the losses you have gone thru these past few years. I will keep you in my prayers, and hope that peace and comfort find you soon. Please keep us updated on how you are doing, when you feel up to it. You know we are always here for you! If at all possible, could I have your snail mail address to send you a note or card? You can send it to me privately. Hang in there. . . . e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2005 Report Share Posted March 22, 2005 Suhad: You did more than be a mom. You were a nurse, cheerleader, advocate and the list can go on and on. It is difficult being a mom with our children because we need to think of so many things. I admire you for your courage and your words of wisdom to many of us. As I spoke to a group of girls in a group home I told them of this wonderful support group and what being a parent to a child with special needs. I thought of you briefly during my talk because I told them the chances of Leah dying is higher than other kids. But I also pointed out to them we all will die; but we never know when our time will be. But I treasure each day with Leah and my family. I know you treasured each second with Leanna and before that with Samya. And now you will treasure those memories. Never doubt you didn't do your best. Because you did. Know that we are ALL thinking and praying for you and your family at this time. Shalom, Nerenhausen mom to Leah suhad1970@... wrote: My Address is 18045 Raymer ST. Northridge, CA 91325. I cannot say anything more except I tried my best as a mom. Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna with same disease. Samya's Memorial Site: www.samyahaddad.com/.org/.net Email: Suhad1970@... Alt Email: Suhad@... AiM Chat: Suhad1970 From: jayvelde@... Sent: Monday, March 21, 2005 1:04 PM To: Mito Subject: Re: TO SUHAD Suhad I don't think any of us has the right words to say to you right now. Your pain must be incredibly unbearable. I have been combing my emails for days, looking for an update on Leanna. When I saw your post today, I prayed so hard it was good news before I opened it. I was devastated to read that Leanna lost her battle, and is no longer with you. I wish there was something I could do for you, but know there is nothing. My heart breaks for you and your family and the losses you have gone thru these past few years. I will keep you in my prayers, and hope that peace and comfort find you soon. Please keep us updated on how you are doing, when you feel up to it. You know we are always here for you! If at all possible, could I have your snail mail address to send you a note or card? You can send it to me privately. Hang in there. .. . . e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito) Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. This message scanned for viruses by CoreComm Quote Link to comment Share on other sites More sharing options...
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