Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 He also worries that liver problems > have not been ruled out as a side effect.I would also like to know more about the liver problems, I just got done reading on the www.regence.com/trgmedpol/surgery/sur58.htmlsite, and it had mentioned it several times due to different procedures, but it didn't ever say what causes it. I would also like to know what can be done to make it less a risk or outcome for the DS? in Pa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 Murray: The idea of dumping as a feedback mechanism is one which lots of people who have the RNY count on. And sometimes it works very well. But sometimes it doesn't even from the start. And it almost always doesn't after a year or two goes by. So I'd recommend against counting on the dumping syndrome as a feedback. And the thing that dumping won't help with is grazing on complex carbohydrates, the primary way most RNYs that fail do so. Of course that is also the way that you could conceivably defeat a DS but it is FAR rarer for that to happen with the DS. IMO the advantages of the DS are primarily two. First, the odds of long term weight loss and maintenance are better. Secondly, you can eat anything and the quality of life is better with the DS. The RNY is an excellent surgery and it may well be your choice as the risks of complication are less and the cost is more reasonable. My wife and I went for the DS and are elated about our choice and would make it again in a heart beat. As to age, and I assume that is the 60 you are referring to and not your BMI, I am 60 and had the DS almost 5 months ago. I have just gotten a load of tests back and have no problem with my liver. I have lost a hair over 90 pounds so far and the end is not in sight. I need to lose another 70 pounds or so. I know of no raised incidence of liver problems of DS patients versus RNY patients. I do know that it is STRONGLY advised that you avoid drinking alcohol for a good period of time while losing your weight. There is no sense tempting fate by overstressing your liver. If you aren't sure you can do that you are probably better advised to skip weight loss surgery all together. As far as lap versus open, I had lap and had severe complications. My wife had open and had no complications. You can read about my complications in my story at the site shown in my signature. It seems intuitive to me that complications would be more common with lap versus open but the actual numbers don't seem to bear that out. They seem about the same with either. I know that Dr. Rabkin in San Francisco does the surgery lap but don't know about Southern California surgeons. Go to www.duodenalswitch.com and click on the physicians tab. That will give you the names and contact information of everyone doing the DS. And it tells which of them do it lap. Hope that helps. Joe Frost, old gentleman, not old fartSan , TX, 60 years oldSurgery 11/29/00 by Dr. Welker Lateral Gastrectomy with Duodenal Switch340 starting weight, currently 250http://www.duodenalswitch.com/Patients/Joe/joe.html Questions > I have reached the point where I realize that surgery is my only > option for losing a humungous amount of weight. In looking over the > information on the internet on the surgical options, the DS seems > like the most logical choice. There may be a problem, though, and I > thought I'd get some reaction from some of you.> > The doctor who I have worked with for the past three or four years > handles his cases medically and is also involved in doing clinical > trials. He has suggested surgery as my only remaining option. > However, he suggested a Roux-en-Y as it seems that he is fond of the > idea of dumping as a biofeedback mechanism. He also voiced concerns > about long-term weight loss, especially for someone over 60 (like his > pill pushing really works!). He also worries that liver problems > have not been ruled out as a side effect.> > Does anyone have any ideas about any of this? I'd appreciate your > feedback. I'd also like to hear about your feedback on the open vs. > laparoscopic procedure. I'm in S. California. Where is the > laparoscopic DS surgery available nearby?> > Murray > > > ----------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2001 Report Share Posted April 23, 2001 Murray: The idea of dumping as a feedback mechanism is one which lots of people who have the RNY count on. And sometimes it works very well. But sometimes it doesn't even from the start. And it almost always doesn't after a year or two goes by. So I'd recommend against counting on the dumping syndrome as a feedback. And the thing that dumping won't help with is grazing on complex carbohydrates, the primary way most RNYs that fail do so. Of course that is also the way that you could conceivably defeat a DS but it is FAR rarer for that to happen with the DS. IMO the advantages of the DS are primarily two. First, the odds of long term weight loss and maintenance are better. Secondly, you can eat anything and the quality of life is better with the DS. The RNY is an excellent surgery and it may well be your choice as the risks of complication are less and the cost is more reasonable. My wife and I went for the DS and are elated about our choice and would make it again in a heart beat. As to age, and I assume that is the 60 you are referring to and not your BMI, I am 60 and had the DS almost 5 months ago. I have just gotten a load of tests back and have no problem with my liver. I have lost a hair over 90 pounds so far and the end is not in sight. I need to lose another 70 pounds or so. I know of no raised incidence of liver problems of DS patients versus RNY patients. I do know that it is STRONGLY advised that you avoid drinking alcohol for a good period of time while losing your weight. There is no sense tempting fate by overstressing your liver. If you aren't sure you can do that you are probably better advised to skip weight loss surgery all together. As far as lap versus open, I had lap and had severe complications. My wife had open and had no complications. You can read about my complications in my story at the site shown in my signature. It seems intuitive to me that complications would be more common with lap versus open but the actual numbers don't seem to bear that out. They seem about the same with either. I know that Dr. Rabkin in San Francisco does the surgery lap but don't know about Southern California surgeons. Go to www.duodenalswitch.com and click on the physicians tab. That will give you the names and contact information of everyone doing the DS. And it tells which of them do it lap. Hope that helps. Joe Frost, old gentleman, not old fartSan , TX, 60 years oldSurgery 11/29/00 by Dr. Welker Lateral Gastrectomy with Duodenal Switch340 starting weight, currently 250http://www.duodenalswitch.com/Patients/Joe/joe.html Questions > I have reached the point where I realize that surgery is my only > option for losing a humungous amount of weight. In looking over the > information on the internet on the surgical options, the DS seems > like the most logical choice. There may be a problem, though, and I > thought I'd get some reaction from some of you.> > The doctor who I have worked with for the past three or four years > handles his cases medically and is also involved in doing clinical > trials. He has suggested surgery as my only remaining option. > However, he suggested a Roux-en-Y as it seems that he is fond of the > idea of dumping as a biofeedback mechanism. He also voiced concerns > about long-term weight loss, especially for someone over 60 (like his > pill pushing really works!). He also worries that liver problems > have not been ruled out as a side effect.> > Does anyone have any ideas about any of this? I'd appreciate your > feedback. I'd also like to hear about your feedback on the open vs. > laparoscopic procedure. I'm in S. California. Where is the > laparoscopic DS surgery available nearby?> > Murray > > > ----------------------------------------------------------------------> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2004 Report Share Posted February 10, 2004 Lori, You should not have to have a scheduled C-section. It is very possible for you to go VBAC. It all depends on the incision on your uterus, not the cut on the outside of your stomach. If it is a transverse or horizontal incision, there should be no problem with them letting you try. I had large babies, my first was C-section 9 pounds 14 oz. With my daughter which I had VBAC she was 9 pounds 4 oz. So it's very possible for you to go VBAC. I would definitely ask their reasons and if they are just being overly cautious, I'd put my foot down and tell them I'd like to try! It was the most awesome experience of my life. I think it's worth a talk to the dr.! I don't have any other advice to give, if they want you to eat so much try and at least make it healthy carbs. There are plenty of carbs in fruit, so take advantage of that. Good luck! 9 months post op -107 pounds 9 weeks pregnant with number 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2004 Report Share Posted February 11, 2004 > Some background information on the situtation Some background on myself.. I got pregnant 5.5 months after having an open roux en Y...I had lost 100 pounds, had 100 left that I wanted to lose. Previous pregnancy I had a cesarean due to complications during delivery. I have also been attending births for 9 years...I'm a student midwife, childbirth educator, and doula. > > 1. They want me to gain 15-25 pounds by the end of the pregnancy. > They want a minimum of 15, but hope for 25. Okay, simple enough > except that I have lost 5 1/2 pounds since last Tuesday! I thought > that people continue to lose and still have healthy babies?? > and my care provider didn't care that I lost 15 pounds the first trimester and didn't gain anything at all the second and third. None of my care providers did...because they much more cared about what I was eating (was it healthy or was it junk?) and amounts (was it an appropriate amount or was I not eating all day every day? ie. was I spilling large amounts of ketones..) than anything the scale said. In fact, to weigh myself was my choice..I never even had to weigh myself because, as my care providers said, there's nothing that can be found out through weighing you on a scale that can't be found out better in other ways.... > 2. I have to eat a minimum of 180 grams of carbs each day. HOW can I > do this?? Has anyone else had to eat this much? > I never counted carb grams...just made sure I wasn't in ketosis which meant eating healthy foods all day long. =) was much more concerned with protein...and if I had a client like yourself, I'd be much more concerned about protein intake since you had preeclampsia before. (emergency cesarean? You sure it wasn't HELLLP syndrome? usually with preeclampsia it doesn't warrant an emergency cesarean...an unplanned cesarean, sure...but not an emergency cesarean.) > 3. They have already decided that I will have to have a scheduled > C-section. Is this routine? Has anyone had an open RNY and been able > to deliver vaginally? I didn't get to do this with my son and was so > looking forward to the experience. > It may be routine if you had a vertical incision from your last cesarean rather than a low horizontal incision. But it's not routine because you'd had bariatric surgery...absolutely not. I had a very smooth uneventful (other than giving birth! heh..) homebirth. Soderblom CCCE CD(DONA) CLD Student Midwife - Mesa, AZ CAPPA Board of Directors Doula/CBE/Pregnancy/Birth Photography Owner: Birth Story Diaries - real births, real photos http://www.birthdiaries.com Owner: SouthwestDoulas.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Here's the quick test to check circulation: squeeze the toe and it will turn white where you squeezed- when you let go, watch to see how fast the blood fills it back up...it should be fairly quick (seconds). (make sure the foot is warm when you do this!) You can try it on his non-clubfoot (I'm assuming he only has one cast from your post) to get a feel for what's " normal " . You can pick/cut away at the plaster around the toes if you think it's squishing them at all. If your gut is telling you that something is wrong- then go ahead and get back in to the doctor and make them check him out (or take it off and reschedule for another cast)! Better to be safe and lose correction than sorry.... it's completely possible for the cast to be too tight or that his foot slipped. Hope this helps! & (3-16-00), left clubfoot > My son got his first cast on Friday and his toes are red and kind of > swollen, is this normal? I called his doctor and did what was > suggested, but I just feel so overwhelmed I don't know what's OK and > what isn't . Anyway any kind of advice is greatly appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 I would touch the tip of the toes with your fingertips and make sure there is still good circulation there. The toes will white up with touch if there is. > >Reply-To: nosurgery4clubfoot >To: nosurgery4clubfoot >Subject: questions >Date: Mon, 20 Sep 2004 19:55:42 -0000 > >My son got his first cast on Friday and his toes are red and kind of >swollen, is this normal? I called his doctor and did what was >suggested, but I just feel so overwhelmed I don't know what's OK and >what isn't . Anyway any kind of advice is greatly appreciated. Thanks > > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! hthttp://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 What did the dr. suggest you do? There may be a certain amount of this that's normal, but not to any large degree. Does your baby seem to be in an unreasonable amount of discomfort? If you press the toe, does it turn white then pink again quickly? It should, as a sign of good circulation. If they do swell a lot though, turn purplish/blueish, that's a bad sign. Maybe try to elevate his feet with pillows. Hope it goes well with you, let us know. s. questions My son got his first cast on Friday and his toes are red and kind of swollen, is this normal? I called his doctor and did what was suggested, but I just feel so overwhelmed I don't know what's OK and what isn't . Anyway any kind of advice is greatly appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 Hello, May I ask, where are you located? What doctor are you seeing? Sally (Logan's & Meegan's Grandma " Boo " ) > My son got his first cast on Friday and his toes are red and kind of > swollen, is this normal? I called his doctor and did what was > suggested, but I just feel so overwhelmed I don't know what's OK and > what isn't . Anyway any kind of advice is greatly appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 I'm in Las Vegas, Nevada. The doctor I'm seeing isn't on the website, but he is certified and learned from Dr Ponseti. The doctor's name is Camp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2004 Report Share Posted September 21, 2004 I'm in Las Vegas, Nevada. The doctor I'm seeing isn't on the website, but he is certified and learned from Dr Ponseti. The doctor's name is Camp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Good Morning, My daughter & son-in-law are at Camp Pendleton CA. Their little boy was born with bilateral club foot on June 5, 2004. He is out of the casts as of Labor Day weekend. Seems to be adjusting quite well to his shoes and braces. He sees Dr. Cassiday in San Diego. Anyway, back to the subject, which was the swollen toes etc. He banged his casts together all the time so that the toe areas were always getting crushed and squeezing his toes, so my daughter put socks on over top of the casts to help cushion the banging and it seemed to help. Good luck with your little angel. Sally (Logan's & Meegan's Grandma " Boo) -- In nosurgery4clubfoot , " hwcutie " wrote: > I'm in Las Vegas, Nevada. The doctor I'm seeing isn't on the website, > but he is certified and learned from Dr Ponseti. The doctor's name is > Camp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2004 Report Share Posted September 22, 2004 Good Morning, My daughter & son-in-law are at Camp Pendleton CA. Their little boy was born with bilateral club foot on June 5, 2004. He is out of the casts as of Labor Day weekend. Seems to be adjusting quite well to his shoes and braces. He sees Dr. Cassiday in San Diego. Anyway, back to the subject, which was the swollen toes etc. He banged his casts together all the time so that the toe areas were always getting crushed and squeezing his toes, so my daughter put socks on over top of the casts to help cushion the banging and it seemed to help. Good luck with your little angel. Sally (Logan's & Meegan's Grandma " Boo) -- In nosurgery4clubfoot , " hwcutie " wrote: > I'm in Las Vegas, Nevada. The doctor I'm seeing isn't on the website, > but he is certified and learned from Dr Ponseti. The doctor's name is > Camp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Yes, he put me on a daily Potassium pill yesterday. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Hi , Can't answer your questions about the drugs but wonder if they are giving you potassium supplements? Low potassium can have profound effects. I take Klor-Con EF 100 meq. Without it I am vegetative. I hope the CC visit is productive and that your doctors will be able to arrive at a decision. Prayers and hugs, Barbara _____ From: LILQT4U1984@... Sent: Tuesday, December 28, 2004 10:22 AM To: Subject: Questions Question for you experts. I went for labwork yesterday morning and then to an appt with my PCP. My Potassium was very low. My doc. is contributing it to the Florinef that I'm on for low BP. My BP is still running very low around 78/60. He added ProAmatine to the mix now. Anyways my question is I have lab orders for next week to check my Potassium as well as Magnesium. What is the correlation between the two? I also have a repeat echo of my heart on Wed. afternoon to see if the 40% EF reading was correct. If it truly is that low then my PCP wants me to go on Lanoxin. Anyone used this medication? I'll be going to Cleveland Clinic on Mon to see my mito specialist and meet with my surgeon about my colon. it will be a turnaround trip as far we know. Thanks in advance! Hope you all had a great holiday! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Hello Alison, I can't answer any of your question about the meds the doc has you on, but I can say that I have had low Pottasium several times requiring IV Fluids with added Potassium. When I get ill, mostly with Viral Bugs, I tend to start the cyclic vomiting cycle that seems to only be stopped with fluids and potassium. I have had several bouts of low Potassium as a younger kid and the doc attributed it the fact that I was taking cortisone for Asthma. I know now that it was just another manifestation of Mito showing it's ugly head way before my sons and I were diagnosed. I hope your trip to see CCF is helpful. I can honestly say that Dr Cohen saved my son 's life. He was so ill as a baby and no doctor here in Melbourne or Orlando FL. could tell us what was wrong. Dr Cohen spoke to me several times on the phone before our first visit and immediately began the " cocktail " and carnitor. I am sure that is here to today because of him. He is one special doctor who really cares about his patients. That is tough to find these days. I feel that what Dr Cohen tells me about our care is more important than any local doc we see here in FL. I am sure that the docs at CCF will better explain what you are dealing with than I could. Be well and have a safe trip, > Question for you experts. > > I went for labwork yesterday morning and then to an appt with my PCP. My > Potassium was very low. My doc. is contributing it to the Florinef that I'm > on > for low BP. My BP is still running very low around 78/60. He added > ProAmatine > to the mix now. Anyways my question is I have lab orders for next week to > check my Potassium as well as Magnesium. What is the correlation between > the two? > > I also have a repeat echo of my heart on Wed. afternoon to see if the 40% > EF > reading was correct. If it truly is that low then my PCP wants me to go on > Lanoxin. Anyone used this medication? > > I'll be going to Cleveland Clinic on Mon to see my mito specialist and meet > > with my surgeon about my colon. it will be a turnaround trip as far we know. > > Thanks in advance! Hope you all had a great holiday! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Potassium and Magnesium have to be in balance (both in normal range) to each do their work. I have major cramping when mine ore out of balance. Calcium and phosphorus enter into the picture as well. When my magnesium and potassium were low, my doc sent me to a kidney doc. He tested my 24 hour urine and blood levels when I turned it in. My blood levels were very low and my urine levels were very high. This meant that my kidneys weren't returning stuff back into my blood and therefore my blood levels were low. I have to take 40 MEQ of potassium and 3000 mg of magnesium per day, to keep them in the low normal range. You might want to ask if your kidneys might be spilling, unless you have gone the route of 24 hour plus blood work to rule it out. I hope you have a safe trip to CCF. laurie > From: LILQT4U1984@... > Reply-To: > Date: Tue, 28 Dec 2004 11:22:21 EST > To: > Subject: Questions > > Question for you experts. > > I went for labwork yesterday morning and then to an appt with my PCP. My > Potassium was very low. My doc. is contributing it to the Florinef that I'm > on > for low BP. My BP is still running very low around 78/60. He added > ProAmatine > to the mix now. Anyways my question is I have lab orders for next week to > check my Potassium as well as Magnesium. What is the correlation between > the two? > > I also have a repeat echo of my heart on Wed. afternoon to see if the 40% > EF > reading was correct. If it truly is that low then my PCP wants me to go on > Lanoxin. Anyone used this medication? > > I'll be going to Cleveland Clinic on Mon to see my mito specialist and meet > > with my surgeon about my colon. it will be a turnaround trip as far we know. > > Thanks in advance! Hope you all had a great holiday! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 a Unspecified mito is a diagnosis of mito without knowing what genetic defect there is. Some of us have a diagnosis of a " complex " defect. Mine is a complex I defect following a fresh muscle biopsy. Very few people get a diagnosis of MELAS, MERFF, ect. Unless the genetic defect for one of these is found, it really is just a name for a group of symptoms. Have you looked at the UMDF (umd.org) and ( ) for the list of tests. You should be able to find it in both places. The list tells what the first tier of tests should be and then further testing. If you can't find them, let me know and I will see what I can do. laurie > > > > > Hello, > > Being very new to all of this and without a diagnoses I had a few > questoins. > > I see alot of emails with unspecific mito as a diagnosis, can someone > explain what that means? > > I visit my PCP this week to discuss what testing we should pursure as > far as mito goes. Can someone suggest lab tests that I should be > discussing with my docotor? My symptoms are listed on a previous > post under the topic Adult Mito?. > > Any thoughts would be great! > > a > > Serenity is not freedom from the storm, but peace amid the storm " > -unkown > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 a Unspecified mito is a diagnosis of mito without knowing what genetic defect there is. Some of us have a diagnosis of a " complex " defect. Mine is a complex I defect following a fresh muscle biopsy. Very few people get a diagnosis of MELAS, MERFF, ect. Unless the genetic defect for one of these is found, it really is just a name for a group of symptoms. Have you looked at the UMDF (umd.org) and ( ) for the list of tests. You should be able to find it in both places. The list tells what the first tier of tests should be and then further testing. If you can't find them, let me know and I will see what I can do. laurie > > > > > Hello, > > Being very new to all of this and without a diagnoses I had a few > questoins. > > I see alot of emails with unspecific mito as a diagnosis, can someone > explain what that means? > > I visit my PCP this week to discuss what testing we should pursure as > far as mito goes. Can someone suggest lab tests that I should be > discussing with my docotor? My symptoms are listed on a previous > post under the topic Adult Mito?. > > Any thoughts would be great! > > a > > Serenity is not freedom from the storm, but peace amid the storm " > -unkown > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 a I forgot to tell you that at the site, go to " files " . laurie > a > > Unspecified mito is a diagnosis of mito without knowing what genetic > defect there is. Some of us have a diagnosis of a " complex " defect. > Mine is a complex I defect following a fresh muscle biopsy. Very few > people get a diagnosis of MELAS, MERFF, ect. Unless the genetic defect > for one of these is found, it really is just a name for a group of > symptoms. > > Have you looked at the UMDF (umd.org) and > ( ) for the list of tests. You should be able > to find it in both places. The list tells what the first tier of tests > should be and then further testing. If you can't find them, let me > know and I will see what I can do. > > laurie > > > > > > > > > > > > > Hello, > > > > Being very new to all of this and without a diagnoses I had a few > > questoins. > > > > I see alot of emails with unspecific mito as a diagnosis, can someone > > explain what that means? > > > > I visit my PCP this week to discuss what testing we should pursure as > > far as mito goes. Can someone suggest lab tests that I should be > > discussing with my docotor? My symptoms are listed on a previous > > post under the topic Adult Mito?. > > > > Any thoughts would be great! > > > > a > > > > Serenity is not freedom from the storm, but peace amid the storm " > > -unkown > > > > > > > > > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein > > are not necessarily those of the list moderators. The author of this e > mail > > is entirely responsible for its content. List members are reminded of > their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one > is > > automatically moderated or removed depending on the severity of the > attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 a, I would just add that some doctors use the label " non-specific mito " for patients who have a history and/or microscopic findings in muscle tissue that are highly suggestive of a mito disorder---such as mitochondrial proliferation, ragged red fibers, crystalline inclusions in mitochondria or other obvious abnormalities in the mitochondria---but do not have any identified deficiencies in the enzymes of the respiratory chain complexes. In some cases, the enzyme assays simply weren't performed or in other cases the enzyme activities were normal or near normal, in spite of abnormal microscopic findings in the mitochondria. I know least one patient who has been given a diagnosis of " mitochondrial encephalopathy " without any enzyme measurements performed and others who have been given a " non-specific mito " diagnosis on the basis of mitochondrial proliferation and history. In these cases, the diagnosis carries credibility if offered by an expert who sees many mito patients and can evaluate the whole history, as well as test results. Some experts prefer to call these cases " likely mito " rather than " non-specific mito. " If a biopsy yields a deficiency in one (or several) of the complexes, some experts regard that as " specific, " in that the defect is localized to particular enzymes, even if the genetic mutation is not identified. The terminology is still evolving and probably will be for quite a few years. This is confusing for patients and primary care physicians alike! Here is one expert's comment on the likelihood of identifying the genetic mutation in a patient known to have a deficiency in one or more of the mitochondrial respiratory chain enzymes: " I predict that only in a minority of cases will we be fortunate enough to find a single gene defect (mitochondrial DNA or nuclear DNA) that is causative. In fact, in a http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u ids=9632169&dopt=Abstract> published study of 2,000 specimens referred for mtDNA mutation analysis, Dr. Lee-Jun Wong's laboratory found a causative mutation in under 7%. This ballpark yield in large-scale studies has been echoed in at least 2 other laboratories. " Barbara _____ From: [mailto: ] On Behalf Of Laurie Fitzgerald Sent: Sunday, April 24, 2005 8:20 AM To: Subject: Re: questions a Unspecified mito is a diagnosis of mito without knowing what genetic defect there is. Some of us have a diagnosis of a " complex " defect. Mine is a complex I defect following a fresh muscle biopsy. Very few people get a diagnosis of MELAS, MERFF, ect. Unless the genetic defect for one of these is found, it really is just a name for a group of symptoms. Have you looked at the UMDF (umd.org) and ( ) for the list of tests. You should be able to find it in both places. The list tells what the first tier of tests should be and then further testing. If you can't find them, let me know and I will see what I can do. laurie > > > > > Hello, > > Being very new to all of this and without a diagnoses I had a few > questoins. > > I see alot of emails with unspecific mito as a diagnosis, can someone > explain what that means? > > I visit my PCP this week to discuss what testing we should pursure as > far as mito goes. Can someone suggest lab tests that I should be > discussing with my docotor? My symptoms are listed on a previous > post under the topic Adult Mito?. > > Any thoughts would be great! > > a > > Serenity is not freedom from the storm, but peace amid the storm " > -unkown > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 Hi - I think most people stay in the hospital overnight the day of their sugery and go home the next day, my doctor kept me two nights. I felt sore and tired but happy i had done it. I was very tired the first week and walked a few blocks each day about twice a day. I was never really hungry most of the time, i liked warm stuff better than cold stuff. chicken broth ( home made rocked) I was never into pudding much, i did have some low sugar applesauce, the protein shakes helped me. cottage cheese helped. low carb yougurt. I did like the strained cream of chicken soup. warm teas were good also. after sugery i have not been able to handle sugar free jello. cream of wheat was good. I guess i was on pureed foods a few weeks. Now i can eat things easily, some things i cant do like hamburger patty's. thick type steaks. You just have to remember to eat small amounts on small plates with small utensils.and to chew and chew and chew. I went back to work after one month, wished i had taken six weeks off but i did ok. i dont have my total energy back but i feel good and know i am getting healthier every day. colleenda6bearz wrote: HI All,Ok lets say I've had the surgery what should I expect. What is the normal hospital stay? How do you feel? How long before you start noticing you've lost weight? Tell me a little about your eating habits? How are the pureed foods? What's the best tasting one and the worst tasting food you've tried? How long did you really stay on the pureed food diet? Anything else you can tell me will help.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2005 Report Share Posted July 11, 2005 Hi - I think most people stay in the hospital overnight the day of their sugery and go home the next day, my doctor kept me two nights. I felt sore and tired but happy i had done it. I was very tired the first week and walked a few blocks each day about twice a day. I was never really hungry most of the time, i liked warm stuff better than cold stuff. chicken broth ( home made rocked) I was never into pudding much, i did have some low sugar applesauce, the protein shakes helped me. cottage cheese helped. low carb yougurt. I did like the strained cream of chicken soup. warm teas were good also. after sugery i have not been able to handle sugar free jello. cream of wheat was good. I guess i was on pureed foods a few weeks. Now i can eat things easily, some things i cant do like hamburger patty's. thick type steaks. You just have to remember to eat small amounts on small plates with small utensils.and to chew and chew and chew. I went back to work after one month, wished i had taken six weeks off but i did ok. i dont have my total energy back but i feel good and know i am getting healthier every day. colleenda6bearz wrote: HI All,Ok lets say I've had the surgery what should I expect. What is the normal hospital stay? How do you feel? How long before you start noticing you've lost weight? Tell me a little about your eating habits? How are the pureed foods? What's the best tasting one and the worst tasting food you've tried? How long did you really stay on the pureed food diet? Anything else you can tell me will help.Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Don't worry about not being able to eat as much as they tell you to. Right now, you are swollen, so your tummy is smaller than it will be in a week or so (or it may take you even longer) Try to get liquids in, but at my appt., they said that you can't really get all 64 oz. in until four or six weeks or so. So, don't worry too much..just make a concerted effort to drink (or eat popsicles) whenever you can. I was sent home with a stomach coater...and a little liquid codeine or vicodin. Nothing for the gallstones. I'm going to ask about that at my next appt. I had no trouble burping. I was even burping when I was coming out of the anesthesia. But, I couldn't release any gas through the other end for several days. I think I was four days or five days out before I was able to do that...and that helped a lot, actually. The burping helped, too...but not quite as much. As for stool softeners...make sure you look at the OK and not OK medication list that is in your folder. I used Dulcolux...but that's because the pills are very small...and I didn't use it until about a week and a half or two ago (i.e. four weeks out.) Remember...you have plenty of fat stores to live off of...so it isn't like you'll be disappearing if you don't get the food in the next few weeks. Water is a different story. So, just try hot herbal tea or sugar-free popsicles if the water is really hard to take. I found that hotter or frozen made it easier to take small sips, and that helped me avoid the pain of the overly large water swallow. Right now, you are in the early stages of healing...and while it's good to get in protein..I just wouldn't worry that muchh about it. i did, but I was reassured by the doctors that it is all normal. You're fine. Robynn wrote: I have a few question...Hope ya'll dont mind.A)What meds did you get sent home with?I was sent home with Tylonol with Codene and a pill that helps you NOT get gallstones...Ive been told I was supposed to get a stomach coater and a stool softner.Should I look into this or just go with what I got?B)Should I be burping??I have head and read about everybody burping and god I wish I could!! It sure would make me feel a whole lot better! But right now I cant..does it take a while to burp again?C)How long till I eat all the dosages(ozs) recomended of the meal plan(Stage II)?Im trying to eat all the stuff they want me to eat on the take away they gave me but its nearly impossible for me to get that much food in right now.I feel full most of the time or bloated with just half of what they recomend. I make sure im doing the protien shakes and the all the vitamins we're supposed to but the liquids dont want to go in.Now with all that said....remember im only 3 day out of surgery and have been on Stage II diet for 1 and a half days. Im a newbie so im a lilil nervous that i wont get enough in me. So guys and gals.....whats the deal>> Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2005 Report Share Posted July 23, 2005 Hi , I was sent home with a huge bottle of tylenol w/codine and two huge bottles of carafate that coats your stomach. That was it. The stool softener I chose to use was benefiber. I just added a tablespoon to all three of my 2oz meals once on stage II. It worked great. I had my surgery at Richmond though. Once you get really going with your walks, you will start to burp. I wouldn't burp until I was walking like 10 mintues. Then I would turn around and start back home. I took walks every 4 hours I was awake. Stage II you get advanced from by your nutritionalist. At least that happened for me at Richmond since I wasn't going to see my surgeon again for another week. Maybe you have your follow up appt in two weeks? He will advance you. Don't worry about not getting in enough protien at this time. It is expected that you won't. You can't eat enough at this time. Just a side note, I haven't done any protien shakes at all and my surgeon said I was doing fine. I have been healing just fine. So don't worry. It also takes a while to get back up to taking in more than 30oz of water a day. I am just now up to 60oz a day and that is over 3 weeks out from surgery. It will happen. You are doing good. Before you know it you will be feeling better. Kay > I have a few question...Hope ya'll dont mind. > > A)What meds did you get sent home with? > > I was sent home with Tylonol with Codene and a pill that helps you NOT > get gallstones...Ive been told I was supposed to get a stomach coater > and a stool softner.Should I look into this or just go with what I got? > > B)Should I be burping?? > > I have head and read about everybody burping and god I wish I could!! > It sure would make me feel a whole lot better! But right now I cant.. > does it take a while to burp again? > > > C)How long till I eat all the dosages(ozs) recomended of the meal plan > (Stage II)? > > Im trying to eat all the stuff they want me to eat on the take away > they gave me but its nearly impossible for me to get that much food in > right now.I feel full most of the time or bloated with just half of > what they recomend. I make sure im doing the protien shakes and the > all the vitamins we're supposed to but the liquids dont want to go in. > > > Now with all that said....remember im only 3 day out of surgery and > have been on Stage II diet for 1 and a half days. Im a newbie so im a > lilil nervous that i wont get enough in me. So guys and gals.....whats > the deal>> > Thanks > Quote Link to comment Share on other sites More sharing options...
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