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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.

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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 > > > ---------------------------------------------------------------------->

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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 > > > ---------------------------------------------------------------------->

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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

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> 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

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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

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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!

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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

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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

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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.

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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.

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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.

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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.

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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!

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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!

>

>

>

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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!

>

>

>

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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.

>

>

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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.

>

>

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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.

> >

> >

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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.

>

>

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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,

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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,

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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

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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

>

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