Re: Questions

[Guest guest]

Hi Crew,

I've been lurking for months and don't often post..but I do read. Some of you

know I've been around since the beginning.

I have a few questions and I hope some of you can help me...

I just found out today that I have several tumors on my spine. For some

reason, I was told long ago that our family's type of NF2 did not have them

on the spine. So...I never had an MRI on my spine, until a few weeks ago.

ly Im scared. I have had many surgeries for tumor removal but this is

only the 2nd location that is potentially dangerous.

My doc told me that I have two tumors that concern her. One is 1.5 cm on T

9-10. The other is 2.1 cm and is on L2-3.

As some of you know, I had FR (Fractionated Radiosurgery) back in 1996 on my

Acoustic Neuromas (and it seems successful..those tumors have either stopped

growing or died). Is this something available for these two tumors I have?

What is the max. size allowed for FR on the spine (if at all)?

Who has had tumors of this size or in this location removed? What are my

options? Possible (good and bad) outcomes? I know I will get the truth

here..and not the doc babble, grin.

Please write me back via this list or personally. I appreciate any

suggestions or feedback.

Thanks,

Ken Arcia

[Guest guest]

Ken

Like many crewbies... ya can play connect the dots on my spine. Just part of

it man. Hang in there.

[Guest guest]

Hi Cheryl:

I'm not sure what pop is, but dizziness is a sure sign of anemia. I

had moderate to severe dizziness, including a fainting spell, years

before I was diagnosed. It was more often than not associated with

some form of physical exertion--standing up or bending down too

quickly, acute fatigue and nausea. If your anemia is under control

you shouldn't be passing clots. Mine stopped when my HB climbed to

nearly normal. Clots (large ones) happen because you're losing blood

faster than your body can produce sufficient anti-clotting factor. I

would get a HB.

Donna

> Hi LOL,

> I have a few questions.

>

> 2. Is it possible to be anemic or have low hemoglobin even if

bleeding is under control with pop? It seems as time goes on I

become more and more extremely fatigued, gives a whole new meaning

to " Dead Tired " . I have been experiencing dizziness, and nausea

feeling when fatigue is at it's worst.

>

> Cheryl

[Guest guest]

Anemia can be very dangerous. You can think your bleeding is under control but

your counts can be low and you can have no iron stores even once you get your

counts up. It takes a LONG time to get anemia under control. Are you taking Slow

FE iron? You need to keep on top of this, your symptoms say you may need help.

It took me 6 months to get my count to near normal and I have yet to get my

stores built back up, like I said, it takes a long time. If you are a bleeder

(like me) then you get dragged back every month.

Cheryl wrote:

Hi LOL,

I have a few questions.

1. Has anyone had this vaginal burning just before starting their period? I

had this vaginal burning felt like it was coming from my cervix about 2 hours

before I started my period, then after I started the burning went away and I had

lots of dark clots plus my uterus felt like it was spasming (not cramps felt

like uterus muscles squeezing closed and opening). I wasn't in any pain, just

something that I have experienced until now.

2. Is it possible to be anemic or have low hemoglobin even if bleeding is under

control with pop? It seems as time goes on I become more and more extremely

fatigued, gives a whole new meaning to " Dead Tired " . I have been experiencing

dizziness, and nausea feeling when fatigue is at it's worst.

Cheryl

[Guest guest]

>

> 1. I see many people are told to lose weight prior to surgery.

Why?

>

#1 Drs want you to lose a few lbs to help in getting a ump start. It

also is to protect you, even 5 or 10 lbs is a big deal to your Dr.

It also serves to show the Dr that you are really dedicated to this

huge change. 6 family members of mine have had this op but 2 lossed

most of there hair and 1 gained all her weight back then some, all

because they were LAZY about there after care.

>

2. Do the different types (band, etc.) generally have the same

> results?

>

My Dr. told me that the lap band is easier on your body but you will

on advrage lose 60-70% of your weight and it takes 18mo - 3years

and R.Y. Gastric Bypass 70-90% of your weight and it will take half

the time but I think the slower the better because of all the exsses

skin it seems there would be more time for your body to ajust.

>

3. Generally, how much time is needed off work (desk job)?

> one week if lap. if you have a open op it could be 3weeks

> Those are the ones that come to mind right now.....I am sure I

will

> have more later...

>

> Thanks,

>

[Guest guest]

Actually the doctors want you to lose weight to help

shrink your liver (it allows better access to the

stomach for the surgeons) as well as getting you

started on the road to your new life.

Time off from works varies as to how you heal and how

you feel. My doctor said the minimum time off for a

lap surgery was two weeks, so it really varies on your

health and healing and the Doctor. I know for me I

could have worked (at a part time job) after a week,

but would have been extremely tired, two weeks rest

would have been much better.

So, I agree with alot of what you said, but it all

depends on the person and the surgeon.

--- wrote:

> >

> > 1. I see many people are told to lose weight

> prior to surgery.

> Why?

> >

> #1 Drs want you to lose a few lbs to help in getting

> a ump start. It

> also is to protect you, even 5 or 10 lbs is a big

> deal to your Dr.

> It also serves to show the Dr that you are really

> dedicated to this

> huge change. 6 family members of mine have had this

> op but 2 lossed

> most of there hair and 1 gained all her weight back

> then some, all

> because they were LAZY about there after care.

> >

> 2. Do the different types (band, etc.) generally

> have the same

> > results?

> >

> My Dr. told me that the lap band is easier on your

> body but you will

> on advrage lose 60-70% of your weight and it takes

> 18mo - 3years

> and R.Y. Gastric Bypass 70-90% of your weight and it

> will take half

> the time but I think the slower the better because

> of all the exsses

> skin it seems there would be more time for your body

> to ajust.

> >

> 3. Generally, how much time is needed off work

> (desk job)?

> > one week if lap. if you have a open op it could be

> 3weeks

> > Those are the ones that come to mind right

> now.....I am sure I

> will

> > have more later...

> >

> > Thanks,

> >

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Over 120lbs

astricBypass-LOSERS , " kharper701 "

wrote:

>

> wow, I thought it was close to impossible to gain that much weight

> after WLS because of malabsorption... how much did she lose and

gain?

>

>

> >

> > >

> > > 1. I see many people are told to lose weight prior to

surgery.

> > Why?

> > >

> > #1 Drs want you to lose a few lbs to help in getting a ump

start. It

> > also is to protect you, even 5 or 10 lbs is a big deal to your

Dr.

> > It also serves to show the Dr that you are really dedicated to

this

> > huge change. 6 family members of mine have had this op but 2

lossed

> > most of there hair and 1 gained all her weight back then some,

all

> > because they were LAZY about there after care.

> > >

> >

>

[Guest guest]

OMG! I can never let that happen to me --- NEVER. I want to get out of this

body for good!

wrote: Over 120lbs

astricBypass-LOSERS , " kharper701 "

wrote:

>

> wow, I thought it was close to impossible to gain that much weight

> after WLS because of malabsorption... how much did she lose and

gain?

>

>

> >

> > >

> > > 1. I see many people are told to lose weight prior to

surgery.

> > Why?

> > >

> > #1 Drs want you to lose a few lbs to help in getting a ump

start. It

> > also is to protect you, even 5 or 10 lbs is a big deal to your

Dr.

> > It also serves to show the Dr that you are really dedicated to

this

> > huge change. 6 family members of mine have had this op but 2

lossed

> > most of there hair and 1 gained all her weight back then some,

all

> > because they were LAZY about there after care.

> > >

> >

>

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[Guest guest]

In a message dated 2/4/2008 11:29:12 P.M. Pacific Standard Time,

big_booty_mama38@... writes:

Does anyone take anything natural instead of prescription meds for their

pain/symptoms?

Hi, . I tried natural stuff, but the only natural thing that works

at all for me is Melatonin, to help me sleep.

Love and gentle hugs,

Debi/Central Cal.-55

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48)

[Guest guest]

,

I take Cymbatla. And Lunesta for sleep. Nothing natural, sorry.

Jerilyn

>

> Hello everyone,

>

> Today I have another headache and its getting on my nerves.I never

got headaches and now here they come.UGH!! I have a couple questions

for yall;

>

> What do you take for fibro?

>

> Does anyone take anything natural instead of prescription meds for

their pain/symptoms?

>

>

>

>

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

> Never miss a thing. Make Yahoo your homepage.

>

>

[Guest guest]

I do take some natural supplements, and they play an important part, but

I would say that it would be difficult to control fibro without the help

of prescriptions.

These are the things I take. My doctor has a list, and you should always

let your doc know because some things, even herbs, do not play nicely

together.

Milk Thistle Extract: 1000mg., 2x daily. A well documented herb that

helps the liver cope with possible stress from meds, i.e. anything with

acetaminophen, some antidepressants, i.e. Effexor, birth control pills

5-Htp: 50mg., 3x daily. This encourages the body's natural stores of

serotonin. I find that it helps my gut, with is a location where

serotonin is needed. It seems to help with pain. It seems to me that I

don't really notice it, until I run out, then I start feeling all bloaty

and nasty, and my general pain levels go up. This is one you definitely

need to ask your doc about, especially if you're already taking a SSRI

or SNRI.

St. 's Wort: 300mg, 2x daily. I noticed that it does help with some

pain and RLS symptoms.

Those are the major players. I take others, but keep in mind that herbs

can have side effects and interactions, and you should consult with your

doc about the things you take.

[Guest guest]

I take Naproxen for fibro pain - either two aleve, or full prescription

strength depending on the severity of pain.

As for ibs - I take probiotics and eat yogurt, and try to eat a high

fiber diet.

For the GERD I take aciphex.

And the chronic sinus issues - I take allegra every day, flonase, and I

do a saline nasal wash at least once a day, more if I'm fighting off

sinusitis.

Plus I go to the chiropractor every two weeks.

My level of pain is much lower than most as far as I can tell, not sure

if it's because I do all of the above, or if I'm just too hard headed or

if I'm just a fighter, and a positive person. I consider myself a

fighter and a survivor who refuses to give up and let this thing rule my

life. I used to, I had to quit my job in 2000 but instead of going back

to work with a full time job, I started selling Avon so I could work

independently and work around the bad days. I used to be depressed but

my symptoms got worse and worse and worse and I was unable to eat. Out

of fear of dying, I fought harder than I have ever fought to overcome

that depression and I won that battle. It took several years and a lot

of fighting, but I did it. If I can win that, I feel I can win anything

and I will keep fighting every day for the rest of my life if I have

to. That doesn't mean I won't have a couch day when my body requires

it, but that just means I won't let this thing limit me from doing what

I wish to do. I've never been one to like being controlled, in fact I

despise anyone who tries to control me, yet this thing used to control

me. One day I just said not anymore and bore some fangs and said to it

" I refuse to be a victim to this thing anymore. " Hubby had fun with

that, because we brought out a stuffed pink monkey that I got for my

14th birthday and I labeled my monkey 'it' and kicked and punched 'it'

yelling " I refuse to be a victim anymore " and beat the snot out of it.

It didn't make fibro go away, but my attitude sure did change and when

my attitude changed, my body thanked me.

I live in pain like the rest of us. I'm in a lot of pain right now, but

I wear a smile and I'm going to keep wearing that smile as long as I can.

Sorry to ramble on and on like that, but I'm feeling pretty strong

today. It's been a difficult few months with the weather and flares and

bugs going around, and I'm feeling so good compared to that. I feel I

can take on the world, despite the pain I'm in right now. I just feel

happy and I know it's not the popular way to feel in a fibro group but I

hope this brings hope to many that if I can get this far, anyone can.

Because if you met me ten years ago you would never recognize me today.

Never.

wrote:

> Hello everyone,

>

> Today I have another headache and its getting on my nerves.I never got

headaches and now here they come.UGH!! I have a couple questions for yall;

>

> What do you take for fibro?

>

> Does anyone take anything natural instead of prescription meds for their

pain/symptoms?

>

>

>

[Guest guest]

My fibro and more is well-controlled with supplementation only, but I

don't play chemist with lots of individual things anymore.

FYI : St. 's Wort actually caused eye damage in me - something many

people are not aware of being an issue.

I'm reversing it now with supplementation.

Calderon wrote:

>

> I do take some natural supplements, and they play an important part, but

> I would say that it would be difficult to control fibro without the help

> of prescriptions.

> These are the things I take. My doctor has a list, and you should always

> let your doc know because some things, even herbs, do not play nicely

> together.

>

> Milk Thistle Extract: 1000mg., 2x daily. A well documented herb that

> helps the liver cope with possible stress from meds, i.e. anything with

> acetaminophen, some antidepressants, i.e. Effexor, birth control pills

>

> 5-Htp: 50mg., 3x daily. This encourages the body's natural stores of

> serotonin. I find that it helps my gut, with is a location where

> serotonin is needed. It seems to help with pain. It seems to me that I

> don't really notice it, until I run out, then I start feeling all bloaty

> and nasty, and my general pain levels go up. This is one you definitely

> need to ask your doc about, especially if you're already taking a SSRI

> or SNRI.

>

> St. 's Wort: 300mg, 2x daily. I noticed that it does help with some

> pain and RLS symptoms.

>

> Those are the major players. I take others, but keep in mind that herbs

> can have side effects and interactions, and you should consult with your

> doc about the things you take.

>

>

>

>

[Guest guest]

> FYI : St. 's Wort actually caused eye damage in me - something

> many

> people are not aware of being an issue.

>

> I'm reversing it now with supplementation.

Curly, how did this happen? Does it interfere with absorption of

certain vitamins? Was it vitamin A?

I'm glad you're able to reverse it. I agree with your not taking

stuff on your own anymore, without medical advice.

Z

[Guest guest]

I used st johns wort for anxiety for 2 years and i never affected my eye sight.

Curlyq5Family wrote: My

fibro and more is well-controlled with supplementation only, but I

don't play chemist with lots of individual things anymore.

FYI : St. 's Wort actually caused eye damage in me - something many

people are not aware of being an issue.

I'm reversing it now with supplementation.

Calderon wrote:

>

> I do take some natural supplements, and they play an important part, but

> I would say that it would be difficult to control fibro without the help

> of prescriptions.

> These are the things I take. My doctor has a list, and you should always

> let your doc know because some things, even herbs, do not play nicely

> together.

>

> Milk Thistle Extract: 1000mg., 2x daily. A well documented herb that

> helps the liver cope with possible stress from meds, i.e. anything with

> acetaminophen, some antidepressants, i.e. Effexor, birth control pills

>

> 5-Htp: 50mg., 3x daily. This encourages the body's natural stores of

> serotonin. I find that it helps my gut, with is a location where

> serotonin is needed. It seems to help with pain. It seems to me that I

> don't really notice it, until I run out, then I start feeling all bloaty

> and nasty, and my general pain levels go up. This is one you definitely

> need to ask your doc about, especially if you're already taking a SSRI

> or SNRI.

>

> St. 's Wort: 300mg, 2x daily. I noticed that it does help with some

> pain and RLS symptoms.

>

> Those are the major players. I take others, but keep in mind that herbs

> can have side effects and interactions, and you should consult with your

> doc about the things you take.

>

>

>

>