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  • 11 months later...

...

I've been in quite a few surgeon's offices and can't think of one that

didn't have piles of magazines, patient files, x-rays, correspondence,

etc. I hope your records get found.

Regards,

> I guess nothing would surprise me right about now. I am just

> aggravated. You know how sometimes everything seems to be going wrong

> a lot? Kind of like the world is against you? That's how I'm feeling.

> Just feeling sorry for myself. I'll get over it, but thanks so much

> for your words, because you are probably right. I have also wondered

> if they are sitting right under his nose as well. Who knows?! I'll

> post with whatever news I get this week.

>

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  • 1 year later...

Hi ,

Where in TX are you located ? I would highly recommend my doctor in Dallas. He is a neurotologist. Let me know if you would like his name and number.

Ilona

<anna@...> wrote:

Lynn and Phil,I was reading the physician profiles at House and it looked like Dr. Schwartz was a neurosurgeon -- so I did mean neurosurgeon.http://www.houseearclinic.com/schwartzMS.htmBut now I see that Dr. Brackmann is actually a neurotologist. I didn't realize until now that a neurotologist was the same thing as an otologist.http://www.houseearclinic.com/brackmannDE.htmI guess they both specialize in nerves and otologist just focus more on ears. Makes sense.> > Hi... regarding the labyrinth fistula....> > This structure is also called the "semi circular canal", there

are > 3 I> > believe, and sometimes the c-toma can grow on this... when this > happens it> > is considered to have breached the inner ear... and it creates a > fistula> > (hole) in the canal. The problem with this is that it can affect > the inner> > ear, (if you damage that, your hearing loss usually is permanent). > When the> > c-toma is attached to the semi circular canal, it has to be removed > and the> > hole, or "fistula" patched with tissue from around your ear. When > the> > c-toma is in this area, it is often accompanied by dizzy spells, > especially> > when you are in certain positions. For me it was if I was lying > down with> > my head turned slightly left and slightly elevated, I would get an > awful> > sense of motion... like being on a roller coaster or a

feeling of > falling.> > > > I am not sure if there is a difference between mastoidectomy and> > tympanomastoidectomy.. I think they always do something to > the "eardrum"> > when doing this surgery.> > > > I am not sure if the picture will come through but I am also > providing a> > link to this picture > > > > http://paperairplane.mit.edu/16> > > 423J/Space/SBE/neurovestibular/NeuroVestibular/2_Physiology/Media/SCCa> nals/SC> > anal2.jpg> > > > > > > > Lynn> > > > > > -- Wow> > > > > >

Everyone is so upbeat today. I'm so glad we have this place to > vent.> > > > That said, I'm going to let off steam. Stand back ;)!> > > > My ear is feeling great. The packing has dissolved (or at least > > feels like it has) and I have stopped using the drops. I'm not > going > > to the doctor for another week and a half, so I'm hoping by then he > > can see if the graft over my ear drum took. > > > > QUESTION: Am I the only person whose ear drum keeps bursting? > Mine > > was a tympanomastoidectomy rather than a mastoidectomy. > > > > Anyway. From what I understand, I still have a labrynth fistula > over > > my stapes which he wasn't able to get out during the first > surgery. > > He's going to tackle it the next go round, but is concerned. I

> feel > > like I should have a zillion questions, but I keep going blank. > > I'm trying to write things down as they come to mind. I guess my > big > > question is if this thing is so close to my inner ear and auditory > > nerve, do I need to be seeing a neurosurgeon? And how come I'm not > > dizzy? I'm so worried about this second surgery because it's not > > just a "second look" surgery, but a "let's deal with this labrynth > > fistula" thing. I like my doctor, but am worried about whether > he's > > dealt with THIS type of cholesteatoma before and whether or not I > > should be flying to L.A. or Miami or something.> > > > Today I'm obsessing over whether or not I should fly to The House > > Clinic. In reality, my doctor can probably do everything just > fine, > > but I'm in

worry mode and want to see someone who does removes > > labyrnth fistulas on a regular basis(insert eye rolling here).> > > > Okay. Vent over!> > > > I'm doing to start writing down all my questions and emailing them > to > > myself so I'll have a good list during my next visit.> > > > > > > > > > > >

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Ilona,

I'm in Austin, so hello neighbor! Thanks for offering the name of

your guy, but I think right now I'm just going to stick with mine for

now and see how he feels about continuing on. He hasn't expressed

any hesitance to do the procedure and has proved himself extremely

competent so far. As Diane suggested, I think the best thing for me

to do right now is let him go in there and finish. I'm also going to

express my concerns to him face to face next week. That is, I'll ask

him straight out if he thinks I need a neuorotologist.

> > > Hi... regarding the labyrinth fistula....

> > > This structure is also called the " semi circular canal " , there

> are

> > 3 I

> > > believe, and sometimes the c-toma can grow on this... when this

> > happens it

> > > is considered to have breached the inner ear... and it creates

a

> > fistula

> > > (hole) in the canal. The problem with this is that it can

affect

> > the inner

> > > ear, (if you damage that, your hearing loss usually is

> permanent).

> > When the

> > > c-toma is attached to the semi circular canal, it has to be

> removed

> > and the

> > > hole, or " fistula " patched with tissue from around your ear.

> When

> > the

> > > c-toma is in this area, it is often accompanied by dizzy

spells,

> > especially

> > > when you are in certain positions. For me it was if I was

lying

> > down with

> > > my head turned slightly left and slightly elevated, I would get

> an

> > awful

> > > sense of motion... like being on a roller coaster or a feeling

of

> > falling.

> > >

> > > I am not sure if there is a difference between mastoidectomy and

> > > tympanomastoidectomy.. I think they always do something to

> > the " eardrum "

> > > when doing this surgery.

> > >

> > > I am not sure if the picture will come through but I am also

> > providing a

> > > link to this picture

> > >

> > > http://paperairplane.mit.edu/16

> > >

> >

>

423J/Space/SBE/neurovestibular/NeuroVestibular/2_Physiology/Media/SCCa

> > nals/SC

> > > anal2.jpg

> > >

> > >

> > >

> > > Lynn

> > >

> > >

> > > -- Wow

> > >

> > >

> > > Everyone is so upbeat today. I'm so glad we have this place to

> > vent.

> > >

> > > That said, I'm going to let off steam. Stand back ;)!

> > >

> > > My ear is feeling great. The packing has dissolved (or at

least

> > > feels like it has) and I have stopped using the drops. I'm not

> > going

> > > to the doctor for another week and a half, so I'm hoping by

then

> he

> > > can see if the graft over my ear drum took.

> > >

> > > QUESTION: Am I the only person whose ear drum keeps bursting?

> > Mine

> > > was a tympanomastoidectomy rather than a mastoidectomy.

> > >

> > > Anyway. From what I understand, I still have a labrynth

fistula

> > over

> > > my stapes which he wasn't able to get out during the first

> > surgery.

> > > He's going to tackle it the next go round, but is concerned. I

> > feel

> > > like I should have a zillion questions, but I keep going

blank.

> > > I'm trying to write things down as they come to mind. I guess

my

> > big

> > > question is if this thing is so close to my inner ear and

> auditory

> > > nerve, do I need to be seeing a neurosurgeon? And how come I'm

> not

> > > dizzy? I'm so worried about this second surgery because it's

not

> > > just a " second look " surgery, but a " let's deal with this

> labrynth

> > > fistula " thing. I like my doctor, but am worried about whether

> > he's

> > > dealt with THIS type of cholesteatoma before and whether or not

I

> > > should be flying to L.A. or Miami or something.

> > >

> > > Today I'm obsessing over whether or not I should fly to The

House

> > > Clinic. In reality, my doctor can probably do everything just

> > fine,

> > > but I'm in worry mode and want to see someone who does removes

> > > labyrnth fistulas on a regular basis(insert eye rolling here).

> > >

> > > Okay. Vent over!

> > >

> > > I'm doing to start writing down all my questions and emailing

> them

> > to

> > > myself so I'll have a good list during my next visit.

> > >

> > >

> > >

> > >

> > >

> > >

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  • 2 months later...
Guest guest

Hey ,

I'd say it depends a lot on how your son heals. My doc told us at least 3

days, then whenever he felt like going back. I kept him out for home about 7

days just to be safe, but he was ready to go back in about 5 days!

Barbara

>From: " " <ecra4@...>

>Reply-cholesteatoma

><cholesteatoma >

>Subject: Re: Re: Hello and here's my son's story! Attn:

>

>Date: Wed, 20 Apr 2005 19:46:49 +0100

>

>I totally agree, my son awoke at 05:30 on the hospital ward and started

>helping the nurse do the rounds and helping the other younger children take

>their medicines, etc. Does anyone have an idea what duration my son should

>take off school, as i've been told 1 week by one person and 2 weeks by

>another and in the leaflet we were given it says 3 weeks?

>

>Thanks

>

> &

>(Dover, UK)

>

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Guest guest

I have spoken to his school and they WILL NOT take him back until May 8th just because at the moment he has stitches.

Re: Re: Hello and here's my son's story! Attn: >>Date: Wed, 20 Apr 2005 19:46:49 +0100>>I totally agree, my son awoke at 05:30 on the hospital ward and started >helping the nurse do the rounds and helping the other younger children take >their medicines, etc. Does anyone have an idea what duration my son should >take off school, as i've been told 1 week by one person and 2 weeks by >another and in the leaflet we were given it says 3 weeks?>>Thanks>> & >(Dover, UK)>

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Guest guest

HI All

My eight year old had C-toma in Nov. removed two of the hearing bones, leaving her with a hearing loss, and the school is ignoring the whole problem. Dr. has reccommended the FM system for the classroom but so far it hasn't been installed. And school is almost over for the year, and she is very frustrated with the outcome of all this. Anyone else have any luck with the school and the FM system? Does it help or not. Maybe I should really make noise at the school. They have decided she has NO hearing loss, and that she is a behavior problem instead! Any suggestions?

Shirley MomaBarbara Hatch <rdnckgypc@...> wrote:

Hey ,I'd say it depends a lot on how your son heals. My doc told us at least 3 days, then whenever he felt like going back. I kept him out for home about 7 days just to be safe, but he was ready to go back in about 5 days!Barbara>From: "" <ecra4@...>>Reply-cholesteatoma ><cholesteatoma >>Subject: Re: Re: Hello and here's my son's story! Attn: >>Date: Wed, 20 Apr 2005 19:46:49 +0100>>I totally agree, my son awoke at 05:30 on the hospital ward and started >helping the nurse do the rounds and helping the other younger children take >their medicines, etc. Does anyone have an idea what duration my son should >take off school, as i've been told 1 week by one person and 2 weeks by >another

and in the leaflet we were given it says 3 weeks?>>Thanks>> & >(Dover, UK)>

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Guest guest

> HI All

> My eight year old had C-toma in Nov. removed two of the hearing

bones, leaving her with a hearing loss, and the school is ignoring

the whole problem. Dr. has reccommended the FM system for the

classroom but so far it hasn't been installed. And school is almost

over for the year, and she is very frustrated with the outcome of

all this. Anyone else have any luck with the school and the FM

system? Does it help or not. Maybe I should really make noise at

the school. They have decided she has NO hearing loss, and that she

is a behavior problem instead! Any suggestions?

> Shirley Moma

We pursued it last year, but he was at a Catholic school-- so it was

hard trying to figure out even who to talk to at the school

district. The way the special ed money flowed in Minnesota-- he

could have tried to get one for the Fall. But they said that they

couldn't make any guarentees as the money might be claimed by

someone who was worse off-- totally hearing impared, wheelchair

bound etc. We decided to move at that point so didn't pursue it.

The first doc up here suggested we wait until the reconstruction and

see how that went. The third doc-- (second up here)-- was shocked

that we didn't pursue an amplification system.

If you are staying at the same school, I would work really hard at

getting one. It sounds like someone is being a real jerk in

thinking that she doesn't have a hearing problem. Get your doctor

to call. Also if there is a ish Rite Clinic in your area, they

may be able to help you find some non-school district resources.

Good luck!!! If the reconstruction didn't go well, we'll be

travelling the same path. All the teachers I've talked to about it

say that the amplification system is great for teaching as they

don't have to work so hard to project heir voices. And the non-

hearing impared kids really like it too.

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Guest guest

Wow! That is a long time. I hope you can find some things to keep

him busy and find some friends who will come over and visit!

> I have spoken to his school and they WILL NOT take him back until

May 8th just because at the moment he has stitches.

>

>

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Guest guest

Geez, they have a strict policy. I guess they 'helped' make your decision.

:)

Barbara

>From: " " <ecra4@...>

>Reply-cholesteatoma

><cholesteatoma >

>Subject: Re: Re: attn:

>Date: Thu, 21 Apr 2005 15:45:13 +0100

>

>I have spoken to his school and they WILL NOT take him back until May 8th

>just because at the moment he has stitches.

>

>

> Re: Re: Hello and here's my son's story!

>Attn:

> >

> >Date: Wed, 20 Apr 2005 19:46:49 +0100

> >

> >I totally agree, my son awoke at 05:30 on the hospital ward and started

> >helping the nurse do the rounds and helping the other younger children

>take

> >their medicines, etc. Does anyone have an idea what duration my son

>should

> >take off school, as i've been told 1 week by one person and 2 weeks by

> >another and in the leaflet we were given it says 3 weeks?

> >

> >Thanks

> >

> > &

> >(Dover, UK)

>

> >

>

>

>

>

>

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  • 10 months later...
Guest guest

, I had ear infections from a very young age and at age 9 the c-toma was discovered in my right ear. It was almost 30 years later that a c-toma was discovered in my left ear. I had had few problems with the left ear until my late 30's. C-toma can recur after it is removed. That is why so many doctors do a second look surgery. Be sure and look thru old posts on this site. You will find alot of information and explanation of the terminology. I wear a BAHA on both ears now. A BAHA is a Bone Anchored Hearing Aid. I had to go this route after reconstruction attempts in my right ear failed. "Regular" hearing aids did not work well for me for a couple of reasons. One reason was regular hearing aids that are worn in the ear made me very prone to repeated ear infections. Also, regular hearing aids were just

not strong/powerful enough for my level of hearing loss. The Baha® System combines a sound processor with a small titanium fixture implanted behind the ear. The system allows sound to be conducted through the bone rather than via the middle ear – a process known as direct bone conduction. If you would like to learn more about the BAHA, you can go to www.entific.com. Hope this helps. Ilona Parks <lsparks@...> wrote: Sandi, I am wondering when all of this started for you, my son has had a lot of ear infections, eardrum perf. etc. but it wasn't until this last year at the age of 13 that we have had the c-toma problems. Most of what I am hearing on this site is young children--4 and 5 year olds. Did your c-toma recurr after the initial problems. 's ENT here in GR tells me that once the c-toma is gone that it will never

recurr. That is not what I am understanding from the info. on this site.

Bring photos to life! New PhotoMail makes sharing a breeze.

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Guest guest

Ilona,

thank you for the information on BAHA. I just want to be well informed for s appt. in April. Everyone has been so helpful--it is much appreciated.

-----Original Message-----From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Ilona BranumSent: Monday, March 13, 2006 1:21 PMcholesteatoma Subject: RE: Attn:

,

I had ear infections from a very young age and at age 9 the c-toma was discovered in my right ear. It was almost 30 years later that a c-toma was discovered in my left ear. I had had few problems with the left ear until my late 30's. C-toma can recur after it is removed. That is why so many doctors do a second look surgery. Be sure and look thru old posts on this site. You will find alot of information and explanation of the terminology. I wear a BAHA on both ears now. A BAHA is a Bone Anchored Hearing Aid. I had to go this route after reconstruction attempts in my right ear failed. "Regular" hearing aids did not work well for me for a couple of reasons. One reason was regular hearing aids that are worn in the ear made me very prone to repeated ear infections. Also, regular hearing aids were just not strong/powerful enough for my level of hearing loss. The Baha® System combines a sound processor with a small titanium fixture implanted behind the ear. The system allows sound to be conducted through the bone rather than via the middle ear – a process known as direct bone conduction. If you would like to learn more about the BAHA, you can go to www.entific.com.

Hope this helps.

Ilona

Parks <lsparks@...> wrote:

Sandi,

I am wondering when all of this started for you, my son has had a lot of ear infections, eardrum perf. etc. but it wasn't until this last year at the age of 13 that we have had the c-toma problems. Most of what I am hearing on this site is young children--4 and 5 year olds. Did your c-toma recurr after the initial problems. 's ENT here in GR tells me that once the c-toma is gone that it will never recurr. That is not what I am understanding from the info. on this site.

Bring photos to life! New PhotoMail makes sharing a breeze.

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  • 9 months later...

" Racine wrote: '...One or more of the drugs are giving

some hallucinations, so if you talk to her, and something makes sense,

don¹t worry about it. Regards, ' "

... hehehe... Are you saying is usually " senseless " ?

Thanks for the smiles, while we are all wishing her well. Marty

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LOL. Good catch. [ ] Re: ATTN:

" Racine wrote: '...One or more of the drugs are giving

some hallucinations, so if you talk to her, and something makes sense,

don¹t worry about it. Regards, '"

... hehehe... Are you saying is usually "senseless"?

Thanks for the smiles, while we are all wishing her well. Marty

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  • 1 year later...

>

So, I just thought I'd let you know that I would rather not chance

it and I'll heat mine in my teapot instead. If there's a chance that

microwaving my water may lessen the health benefits of my KT, I'd

rather do the teapot. >

i was planning on using a teapot anyway - while i do use the

microwave alot - i try not to use all that energy to heat a glass of

water...but thanks for giving me the heads up!

i just picked up a scoby from lori (who i found out lives very close

to me!!) and will be heading to walmart to get a glass jar and tea

(i have a cupboard full of herbals - nothing plain and simple of

course) and i'll start later today!!!

i'll be using the recipe you gave me before (rae's) and hope for the

best!!! i'll keep you all posted!

lorena :)

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  • 11 months later...

>Hi. Thanks for the link. I have been referred to endo and we will

see what the next steps are. I will update you and again--thanks.

> http://www.endocrinetoday.com/view.aspx?rid=35932

>

> " This patient demonstrated the typical characteristics of an adrenal

adenoma in which the patient is generally younger (<50 years), lower

potassium levels and higher levels of urinary aldosterone (>30 ug/24

hr) but would have had the wrong adrenal gland removed based on her

imaging studies. "

>

> Val

>

>

>

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>Hi. Thanks for the link. I have been referred to endo and we will

see what the next steps are. I will update you and again--thanks.

> http://www.endocrinetoday.com/view.aspx?rid=35932

>

> " This patient demonstrated the typical characteristics of an adrenal

adenoma in which the patient is generally younger (<50 years), lower

potassium levels and higher levels of urinary aldosterone (>30 ug/24

hr) but would have had the wrong adrenal gland removed based on her

imaging studies. "

>

> Val

>

>

>

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I had seen this and was going to send them a note as they have the CT

labeled incorrectly. I suspect, nay hope, that the editor did this

and it was not corrected by the author.

You look at an abdominal CT as though you are looking from below up

toward the head. So if you notice the axial CT you note the large

mass on the left of the imarge (right side of the body) is the

liver. On the right of the image (left of the body) is the spleen.

So they have the adrenals labeled backward. Trust this did not

happen when the drew the blood samples. Will as for them to report

the 5 year follow on her.

I wonder if they took out the left adrenal with the adenoma or what??

I will get around to letter.

You will also note in the same issue of this that a good friend of

mine Dr. Carey is the new President of the Endocrine Society

and I am writing him to urge him to stress that all Endos need to

know more about PA and that BP should be measured correctly in the

Endocrinologist's office.

I will copy all the letter and ask for suggestions from our group

that we want him to stress.

May your pressure be low!



CE Grim BS, MS, MD

High Blood Pressure Consulting

Senior Consultant to Shared Care Research and Education Consulting

Inc.(sharedcareinc.com)

Clinical Professor of Internal Medicine Medical and Cardiology

Medical College of Wisconsin

Board certified in Internal Med, Geriatrics and Hypertension.

Interests:

1. Difficult to control high blood pressure.

2. The effect of recent evolutionary forces on high blood pressure

in human populations.

3. Improving blood pressure measurement in the office and out.

On Jan 30, 2009, at 5:18 PM, Valarie wrote:

> http://www.endocrinetoday.com/view.aspx?rid=35932

>

> " This patient demonstrated the typical characteristics of an

> adrenal adenoma in which the patient is generally younger (<50

> years), lower potassium levels and higher levels of urinary

> aldosterone (>30 ug/24 hr) but would have had the wrong adrenal

> gland removed based on her imaging studies. "

>

> Val

>

>

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  • 6 months later...

Hi ,

   I was going to come out to your retreat center this weekend, but i ended up

hospitalized (Still am) and therefore could not make it.  As you know, I have

thyroid cancer and my tumor has wrapped itself completely around my neck so that

I cannot swallow and I am now having breathing difficulties.  They had wanted to

put in a traech and then a feeding tube, but they don't think they can get a

traech through the tumor.  So it might be the end.  What do you think.  Should i

still be trying here or do I just take the rest of my money and enjoy what

little life I have left? Do you have anything for me at the center at this point

if I make it out of the hospital?

--

________________________________

From: VGammill <vgammill@...>

Sent: Friday, August 7, 2009 9:20:06 PM

Subject: [ ] unusual treatments -- extract from shark blood

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hurthle cell carcinoma

________________________________

HI ,

What type of thyroid cancer do you have?  I have thyroid cancer too and just

wondered what type you have that has gotten so bad.  I pray it is not the same

as I have!

 

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I have tall cell papillary carcinoma and then they found anaplastic carcinoma

cells on the last biopsy, so I am not sure how bad that is.

Re: [ ] Attn:

hurthle cell carcinoma

________________________________

HI ,

What type of thyroid cancer do you have? I have thyroid cancer too and just

wondered what type you have that has gotten so bad. I pray it is not the same

as I have!

------------------------------------------------------------------------------

Internal Virus Database is out-of-date.

Checked by AVG.

Version: 7.5.560 / Virus Database: 268.14.0/524 - Release Date: 11/8/06 1:40

PM

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Hello ,

You are obviously in a desperate situation and desperate situations call

for desperate actions. You are looking for a medical miracle and the

first step is to accept that such miracles may exist. Since you state

that you have very little time, you need something very fast, even

though it may not be the best longer term solution.

I have brought the Cesium Chloride to your attention for the simple

reason, that it appears to be by far the fastest acting reversal

substance. But it also appears that one has to be careful with the

dosing to prevent swamping of the body with the toxic products of tumor

disintegration. What I see on assorted sites dealing with cesium

chloride are deaths, which can be very reasonably assigned to toxemia.

The proof would be in autopsies on those who succumbed, despite the fact

that their tumor tissues actually did shrink after a very short period

from the commencement of the treatment.

I would definitely go that route if I were given less than a month

prognosis, but only for a limited time, as I would be rather reluctant

to trust cesium chloride for an extended period of time. Severe

alkalization of the body is quite likely to bring other potential

problems in a long run. Yet, it would give me a fighting chance to

decide what next. It is one a few affordable substances, which do not

depend on rather slow diet changes, except for a few minor supplements

to counteract some of the cesium effects, like depletion of some

minerals from the body. I would definitely watch if the cesium does the

job and as soon as I might observe that the tumor goes down, I would

decrease the dosage so that the tumor(s) would keep disappearing slowly.

Having a thyroid cancer would make it rather easy to observe without the

need for scans etc. at least in the initial 2 - 4 week period.

http://www.killcancercells.com/

Any other method I have researched will not do as fast, may be with the

exception of the well researched and reasonably documented Oleander

extract(s). It appears to me that fast results from Oleander depend on

at least starting with intramascular application.

http://drozel.org/eng/case_reports.htm

But I may be wrong and you may want to talk to Tony on

http://curezone.com/forums/f.asp?f=861 & c=0 & p=1

or on

oleandersoup/messages/17178?viscount=-30 & l=\

1

The group has actually Dr. Marc Swanepoel as a member, who does

have the knowledge and willingness to help you through.

I would personally consider oleander a better choice than cesium,

providing it reverses the illness fast enough. I would definitely follow

with it after the first month of cesium, should the cesium appear a

faster acting cure.

With kind regards, Slavek

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(Edited by moderator to eliminate long post string. Please remember to trim

your posts).

Many thanks Slavek,

Encouraging words are hard to come by! After reading what had to say

about Cesium I've pretty much decided not to touch that. I'm beginning to think

that you need layers of protocol for cancer and you need to keep switching it up

to stay one step ahead of it. So far I am strong, good appetite, positive

attitude and a willingness to entertain alternative treatments that have show

some evidence of effectiveness.

Cheryl

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