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,

I read this and can only say I empathize with your life. It must be awful to have been the products of ignorant doctors. I am sure they thought they were doing things correctly. But now your husband has to live with this. It must be hard as the wife as it is for me, a mother. Hugs, Vicki

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  • 4 weeks later...

someone out there please be kind and explain why 99.9% of nf2ers cant do CI's

but the ABI is an option. i'm out the door!

Grace wrote:

> Okay. I am going to see my neuro this Tuesday, but he has told me my

> MRI scans showed no improvemnt or disimprovement of my tumours.

> Because I have gotten Gamma Knife radiation on the right, the tumour

> has swelled twice it's size and has not gone down yet. This is

> scaring me, I wonder if radiation was best for me at all?

>

> Because now I have the left tumour to consider. I have not lost

> hearing yet, although it is the exact same size as the one on the

> right, but I have only lost hearing on that side?!

>

> I was told once I get radiation, I am no longer eligible for a

> hearing aid, is that true??!! I hear the cochlear implant does

> wonders, and many get their hearing back. Can I get the implant for

> the one on the left? Or both? Is it really true that there is no hope

> but to learn to lip read and sign?? I would like to hear my parent's,

> my sister as well as any future children's voices. What were your

> experiences? Please share with me.

>

> Grace

>

>

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,

Gardner is a Good Dr very caring and compassionate ... I'm sure she'll find something to help ... she & I became very close through Mikes illness ..Lois

Re: question

,

Are you seeing Dr Kathy Gardner? are you on neurontin?

Lois

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  • 11 months later...

Hi ,

According to my Dr - if my fibroids are bigger, then when they cut them out

there is more bleeding, which can lead to needing a blood transfusion. If they

are smaller, there is less bleeding. So, that is why my doctor put me on Lupron

- to shrink the fibroids. In my case, they did shrink in the 3 months (from the

size of a grapefruit to the size of a small egg). I am scheduled for a myo on

Tues (10/14). For some people on this website, Lupron hasn't worked as well for

them.

Hope this helps,

Claire

In a message dated 10/11/2003 9:12:45 PM Eastern Daylight Time,

sbstraus@... writes:

>

>

> Question :

> I am looking at potential myo. doc's (both R.E's) in my area.... and I might

fly out to see Dr. Indman for his opinion ...

> I am asking : Of 10 women, how many will need a blood transfusion ? I also

ask about microsurgical techniques.

> The nurse told me he only used microsurgery for FERTILITY patients.... ?

> The nurse also said the doc. told her that only 1 out of 10 would need blood.

> I thought the best myo. surgeons NEVER have significant blood loss during

surgery.....??

> True ?

> The other R.E. doc. I haven't asked yet, but will.

> That one does NOT EVEN do hysterectomies.

> I can always go out to Dr. Indman in CA., (who I would prefer), but the doc's

in my area would save me $$ since I would not have to stay in CA. , plus my

insurance would cover more.

> Thanks,

>

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Claire,

Just two more days till you are fibroid free. I just wanted to wish you the

best and a speedy recovery. I will be 5 weeks post op on Monday and I feel

good, not 100% but am thankful for the fibroids being gone. I still have pain in

my ab. It's a feeling like pulled muscles. I had a bad day yesterday because

I cleaned the bathroom. Should not have done that but we were expecting

company for the CUB'S game!!!!!! Go Cubs!!!!! Today I am just laying around

and

letting hubby wait on me!

The best to you,

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  • 5 weeks later...

According to the article below, the uterus of a woman who has never

had children is about 8 cm long by 5 cm wide by 2.5 cm thick. The

uterus of a woman who has had a child is about 9 by 6 by 4 cm.

Uterine Health: What is a Fibroid's Size Relative to the Uterus?

http://www.ivillagehealth.com/experts/womens/qas/0,,242103_194752,00.h

tml?arrivalSA=1 & arrival_freqCap=2

My doctor said the average weight of a fibroid-free uterus is 90

grams. After my myo, my doctor said my fibroid weighed about 300

grams.

Cheryl

> What is the normal size of a uterus? I just got back from getting

my ultrasounds and my uterus is 18cm and I have multiple fibroids,

the largest being 6cm.

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>What is the normal size of a uterus? I just got back from getting my

>ultrasounds and my uterus is 18cm and I have multiple fibroids, the largest

>being 6cm.

And can I piggy-back onto that question... frequently the literature seems to

compare fibroid sizes to various term pregnancies (i.e. 12 week pregnancy, 16

week, etc.). I've never been pregnant, so I don't know how big those

comparisons are! Any resource to let me know how big these are in measurements

I can understand?

Jen

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I find it perplexing that some doctors refer to a fibroid's size by

referring to pregnancy weeks. It's a useful comparison for a doctor

who knows the average size of a uterus in a 16-week pregnant woman,

for example, but it's not useful for most women, who are more

familiar with what a pregnant woman looks like on the outside. One

woman who's 16 weeks pregnant can look completely different from

another woman who is 16 weeks pregnant. Up until about the 7th month

of my pregnancy, most people were really surprised when I told them I

was pregnant.

Cheryl

> >What is the normal size of a uterus? I just got back from getting

my >ultrasounds and my uterus is 18cm and I have multiple fibroids,

the largest >being 6cm.

>

> And can I piggy-back onto that question... frequently the

literature seems to compare fibroid sizes to various term pregnancies

(i.e. 12 week pregnancy, 16 week, etc.). I've never been pregnant,

so I don't know how big those comparisons are! Any resource to let

me know how big these are in measurements I can understand?

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> I find it perplexing that some doctors refer to a fibroid's size by

> referring to pregnancy weeks. It's a useful comparison for a doctor

> who knows the average size of a uterus in a 16-week pregnant woman,

> for example, but it's not useful for most women, who are more

> familiar with what a pregnant woman looks like on the outside.

> Cheryl

And it would be completely meaningless for women like me, who at 24 weeks

pregnant had a uterus the size of a 36 week pregnancy, carrying one baby -

and that was normal for me.

Nan

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  • 2 months later...
  • 8 months later...

Jan,

I have a group of 6 wonderful drs...no one has ever dumped me over any of my illnesses and are very supportive witht dx of RSD and trying to put all their heads together to try to help me with this. I have an internist, GI, neurologist, rhumatologist, neurosurgeon and orthopedic dr. They all cunsult with each other and if 1 doesn't know the answer they call the others for opinions and find out the answer. I am sorry you have had such trouble with your dr...it is a shame that drs like mine aren't the norm....Ginny"Mr. Jan G. Loeb" wrote:

Dear Group:

I would like to find out, how many members have been discharged from there doctors because there doctors have been either frustrated with RSD and Treatments, or they just dont want to put up with what goes on with us with these disease.

I would like to take this Poll, so we can send this to someone in Government that a lot of people with Chronic pain are being dumped by there doctors to fend for ourselves without medical treatment.

Hugs

Jan

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  • 1 month later...

In a message dated 12/10/2004 1:19:43 AM Eastern Standard Time,

ksa2045@... writes:

> 2 weeks ago i decided to raise the am dose so now i take 1 grain in

> am 2 hours after food/iron/vits.

> and last week i upped to 1 grain in afternoon, (3-5pm). and i kept

> the .25 grain at bedtime the same.

>

> i wasn't planning on raising again soon but do you think i should

> cut back a little now and let whatevr needs to catch up catch up?

>

yes, that's my opinion. since you've added one grain in the afternoon just

last week, i would not add any more armour. but two things you may want to

adjust are in the morning....i would take that Armour BEFORE the food...and

then

wait 30 minutes or so before eating. I think that would give the Armour a

head start and it wouldn't have to compete with the food already in your

stomach.

Also, I would have been more inclined to have added a bit in the morning. As

in going to one and 1/2 grain in the AM, and adding only 1/2 in the

afternoon.

Although it's recommended that the Armour be a split dose, I've also seen it

recommended that a person take 2/3 in the morning and 1/3 in the afternoon.

So you might want to think about doing it that way. one in the morning is not

a very big dose to get you going good on your day...or at least that's my

opinion.

Cindi

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> In a message dated 12/9/2004 9:09:38 PM Eastern Standard Time,

> ksa2045@y... writes:

>

> > is adding .5 grain of Armour each week okay?

> > i've been on Armour now for 2.5 months and began to increase .5

> > grain/week two weeks ago.

> >

>

> we need a bit more info. but adding 1/2 grain EVERY week is not

good. but

> tell us how much you're on already. once you get up to 3 grains

you need to go

> much slower...well actually even before that you want to space it

out a bit

> more to see how your body adapts to the increase.

> cindi

>

> hi cindi

thanks for writing back. weird--- i swear , in my original post i

had the dose.....freaky. whatever.

okay, i am now at 2.25 grains/per day. i felt so crappy in the late

afternoon and evening even though i am/was splitting a 1 grain

daytime dose.

2 weeks ago i decided to raise the am dose so now i take 1 grain in

am 2 hours after food/iron/vits.

and last week i upped to 1 grain in afternoon, (3-5pm). and i kept

the .25 grain at bedtime the same.

i wasn't planning on raising again soon but do you think i should

cut back a little now and let whatevr needs to catch up catch up?

thanks again.

kathryn

>

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In a message dated 12/10/2004 3:12:47 AM Eastern Standard Time,

ksa2045@... writes:

> since i do the armour subling then the vits and iron supp i take

> with food won't get in the way, right?

>

right. :)

cindi

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In a message dated 12/10/2004 3:12:47 AM Eastern Standard Time,

ksa2045@... writes:

> i'm an exhausted deadhead in the mornings from no rest. i have the

> sleep apnea thing going on and am trying to figure out that piece of

> the puzzle too.

>

i believe the sleep apnea is a hypo symptom. my husband has told me that i

don't snore as much now that I'm on Armour. so some of these things should

just straighten out with time.

cindi

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> Although it's recommended that the Armour be a split dose, I've

also seen it

> recommended that a person take 2/3 in the morning and 1/3 in the

afternoon.

> So you might want to think about doing it that way. one in the

morning is not

> a very big dose to get you going good on your day...or at least

that's my

> opinion.

> Cindi

>

> oooooo thanks loads for your ideas cindi! it did cross my feeble

mind this am about trying to take the armour before breakfast.

since i do the armour subling then the vits and iron supp i take

with food won't get in the way, right?

i'm an exhausted deadhead in the mornings from no rest. i have the

sleep apnea thing going on and am trying to figure out that piece of

the puzzle too.

thanks again.

kathryn

>

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  • 8 months later...

LOL, Carol. I like the way you think. Sue

On Thursday, September 1, 2005, at 06:09 PM, Carol wrote:

> Sometimes it just takes longer to remember what we already know. All

> the new information just covers up the old - another problem of aging -

> we know too much stuff.

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Okay, Alan. Help out an American buddy. How many calories in a KiloJoule?

Robin G.

Alan wrote:

>

> >

> > I like franks, so baked beans, no added sugar, and franks sounds as

> though it could reasonable 1 day and an omelette the next.

> >

>

> Start reading labels more, particularly on processed foods:

> Heinz Baked Beans (from the can in front of me):

>

> Per 100gms

>

> Energy.........345Kj

> Protein........4.5gm

> Fat............0.4gm

> Carbohydrate..13.1gm

> Fibre.........4.0gms

> Sodium.........300mg

>

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> Okay, Alan. Help out an American buddy. How many calories in a

KiloJoule?

>

Hi Robin

The exact figure is to multiply by 0.23884589663 (source

http://online.unitconverterpro.com/unit-conversion/convert-alpha/energy.html)

However, that works out to the same as dividing kilojoules by 4.18 to

get to what you call Calories.

Just to confuse the issue, that's really kilocalories:-)

After all that, the simplest answer for a rough approximation is to

divide by four, so 1000 kj is approximately 250 Calories. You will

rarely eat foods that are measured precisely enough for the difference

to matter.

Cheers, Alan, T2 d & e, Australia

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Hi Alan

Just checked the can of supposed " Reduced sugar and salt " beans.

Per 100gms

Energy............302kj

Protein.............4.5gm

Fat..................0.3gm

Carbohydrate....12.6gm

Fibre................3.2gm

Sodium.............0.2gm

All in all quite unsatisfactory - I won't be eating them.

This stuff is a right con - charge 1.5 times the normal tin price and the stuff

inside is basically no different to the normal, wouldn't be any healthier for

anybody.

Thanks for the tip.

Rob

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Rob --I buy plain yogurt and buy DaVinci sugarless syrup -- available

online if you can't find it where you live. I mix the plain yogurt with

some ricotta cheese, DaVinci syrup different flavors and a few berries

for dinner dessert every night - it satisfies my sweet tooth and doesn't

raise my BGs very much. Of course since YMMV, you need to test first and

1 and 2 hours after to find your own parameters, but once you do, you'll

find which foods are okay for you.

You could also have this for breakfast.

Vicki

Re: Re: Question

> Thanks Judith.

>

> So it looks like todays figures are not too bad, could do with being a

> bit lower, but yesterdays were too high.

>

> Now I have an idea what I am supposed to be aiming for.

>

> It was all sounding like a foreign language to me, one that used the

> same words as english but in a different way.

>

> I have got a better idea on the figures now so I understand what the

> limitations are.

>

> Fruit is a no no and so is fruit yoghurt because of sugar levels - ah

> well I was getting sick of that anyway.

>

> Thank you once again for your time..

>

> Rob

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> You've got a good head on your shoulders, Judith.

> Your husband is a lucky man!

I like him and want to keep him!

And since the 5.3 A1c I haven't heard a single complaint about how

many pills I make him swallow! He's very good about his diet. We try

to find things he enjoys that don't bother him. For example, he loves

nuts. If this hot hot summer ever ends and I feel more like cooking

I'm going to try some low carb recipes for sweets. Meanwhile his

sweet-tasting treat is low carb ice cream and some low carb chocolate

on occasion.

Judy

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You've got a good head on your shoulders, Judith.

Your husband is a lucky man!

Vicki

Re: Question

>

>

>> I don't know because all I know is that it should be between 4 and 7

> according to what I have been told by my doctos.

>

> We use different numbers, but I found this in your units:

>

> 4 to 7mmol/l before meals.

> less than 10mmol/l 90 minutes after a meal

> around 8mmol/l at bedtime

>

>> I eat yoghurt, but it is a low fat version with bits of fruit in it

> - is this stuff all right, because of the sugars in the fruit.

>

> In the US yoghurt with fruit has a lot of sugar added. Also in the US

> food has information on the label. Look for the section and find the

> carbohydrates line. We just came back from a rip to Mexico and I was

> shocked to discover the resort's " plain " yoghurt had sugar added! It

> doesn't in my supermarket.

>

>> I was told to eat lots of fruit - is that right.

>

> See below. Many diabetics do not eat much fruit because of the

> carbohydrate content, especially not " tropical " fruit. My husband

> eats half an apple with peanut butter some afternoons as a snack. He

> also eats berries.

>

> Vegetables are a better idea.

>

>> Confusion reigns supreme and is driving me insane.

>

> The trouble is there is NOT agreement on diabetic treatment. The way

> I understand it, the medical profession believes in a low fat diet to

> avoid heart problems. The low carb people say help control your blood

> glucose by not giving your body so much carbohydrates. The dietitian

> in my husband's team is kind of in between. She discourages white

> bread, potatoes, rice, etc. and encourages whole grains, flax cereals,

> high fiber. Her carb recommendations are higher than we are on, but

> I've told her that we are not hungry, we feel good, Gil's blood sugar

> is excellent, and when we get too skinny we'll worry about it.

>

> That's kind of why I suggested a middle ground for you right now to

> reduce your stress and hopefully to make some progress. Then you can

> look around and say what direction should I go now.

>

> I'm sure it's extremely stressful for a lot of people to go against

> the recommendations of the medical profession. However, I've been

> watching them for most of my life (I'm in my 60s) and they have not

> done well. I'm used to taking care of my own health, and luckily I

> haven't had serious illnesses that a few supplements couldn't solve.

> I joke that they do a good job of sewing up big holes and they did a

> good job of putting my broken ankle back together. But for chronic

> illnesses? Not so good... In general they treat the symptoms. My

> preference is to go for the cause or as close to the cause as I can.

> So if my husband's body can't handle carbs, duh, CUT THE CARBS!

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  • 4 months later...

My sister had PN, starting about age 77. Lost feeling in her

feet, had pains in both legs, then lost feeling in her fingers

(couldn't knit or crochet any more). She was on a high dose of

neurontin just to be able to sleep.

She was NOT diabetic (was tested repeatedly) OR alcoholic. So

these may be the most common causes of neuropathy...but not the

only ones.

Barb, T2 in MI

Barbara Ward

Macomb County, Michigan

__________________________________________________

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