Newbie here

February 3, 2007

I decided to go for the injection again...with the same person. So

far, I am feeling pretty good. This injection seemed to go better

than the previous ones. I haven't been standing in one place3 like I

do at work though. I just hope to God that this one does something

good.

> > >

> > > From what I understand, they did find the right place to put it

> in.

> > > There was fluid in the area and they couldn't do it. I am going

> in

> > > for another injection on February 2nd.

> > >

> > > I have another quuestion. My left leg above the knee swells to

> twice

> > > it's size. This never happened until after the first steroid

> > > injection. Is this normal? Will this eventually go away. It was

> > weird

> > > and scarey at the same time. I had gone to bed and when I woke

> up,

> > my

> > > leg was huge. My knee was engulfed in the swelling. It feels

like

> a

> > > squishy mass.

> >

>

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

> Get your own web address.

> Have a HUGE year through Small Business.

>

September 23, 2008

Hi

It’s sad news you have been diagnosed with Cholesteatoma, but

good news your GP and her colleague found it – they can go years without being

found, doing more and more damage in that time.

The one piece of advice I would offer you is that you shouldn’t find

‘just’ an ENT, but should look instead for an ‘Otologist’ – effectively, an ENT

specialist but with further specialised training in the ears (as opposed to

general training in the Ears, Nose and Throat).

Also, you might want to ask those Otologists you do come across,

how many cholesteatomas they have seen and successfully removed. Word of mouth

recommendation is good; if you were perhaps to state your approximate location

on this board and ask for a recommendation, that would be a good start.

Good luck; I wish you the very best as you start this journey.

Kazzy J

From: cholesteatoma

[mailto:cholesteatoma ] On Behalf Of modestclouds

Sent: 23 September 2008 14:54

cholesteatoma

Subject: Newbie here

Hi. I was at my general doctor yesterday and

she found what she

believes is an early cholesteatoma in my right ear. She had another

doctor come in and confirm, because she had never actually seen one;

her colleague had seen several. Her colleague indicated it was so

small, she probably wouldn't even have caught it.

I hadn't noticed any hearing loss, pain, or dizziness. I went to my

doctor for near fainting upon standing, but it seems to be a

cardiovascular thing, not related to the ear. Of course today I swear

it hurts and my hearing is lessened

I had chronic ear infections as a kid (I'm 29 now), but no problems of

recent note.

Anyway, reading about this makes me increasingly scared, and I'm

quickly trying to find a really good ENT. If anyone has any

experiences from doctors in Minnesota, (particularly the twin cities)

I'd really appreciate it.

If any one has any other advice, I'd appreciate that too.

Thanks!

September 23, 2008

Dear Newbie,

When I first joined this group and was doing initial ctoma research, I scared myself silly too. I have come to find that too much information really can be a bad thing. You will get anywhere from 1 to 40 of these group posting emails a day, and you really just have to pick and choose what you read or you will find yourself overwhelmed and upset. I now only read the ones from the Doc in India who posts here and from new members like yourself, and pick and choose a few here and there.

My husband (age 27) had his first ctoma removed in Feb 08. He does have another one now, but the ENT says it's in a diff spot and much smaller than the first. He'll be having his second, and Lord willing, last surgury later this fall.

Take it one day at a time, know you're not alone and not a "freak" and if your insurance covers it, look for a neuro-otologist. I have found in my research that N.O.'s are more often than not, much more versed in Ctomas. We are in Nebraska, and the closest one our insurance covers is in Kansas City, so for now we have chosen to stick with our local ENT, who we have been fairly pleased with. Don't be afraid to ask alot of questions and get a second or third opinion if you'd like.

in Nebraska

From: modestclouds <modestclouds@...>Subject: Newbie herecholesteatoma Date: Tuesday, September 23, 2008, 8:53 AM

Hi. I was at my general doctor yesterday and she found what shebelieves is an early cholesteatoma in my right ear. She had anotherdoctor come in and confirm, because she had never actually seen one;her colleague had seen several. Her colleague indicated it was sosmall, she probably wouldn't even have caught it.I hadn't noticed any hearing loss, pain, or dizziness. I went to mydoctor for near fainting upon standing, but it seems to be acardiovascular thing, not related to the ear. Of course today I swearit hurts and my hearing is lessened :)I had chronic ear infections as a kid (I'm 29 now), but no problems ofrecent note.Anyway, reading about this makes me increasingly scared, and I'mquickly trying to find a really good ENT. If anyone has anyexperiences from doctors in Minnesota, (particularly the twin cities)I'd really appreciate it.If any one has any other advice, I'd

appreciate that too.Thanks!

September 23, 2008

Thanks Kazzy and . This board has already been really helpful

in determining what I need to ask for and what to expect. The sorta

good thing is that I am in the Twin Cities, and my insurance covers

University of MN ENTs (two which are board certified in neurotology.

Is that the same as an otologist, or are they slightly different?

The " bad " thing is that my insurance covers the Mayo Clinic too. I'd

prefer (of course, who wouldn't!) to go there, but we are a one car

household, and I don't know if it would be feasible to go there as

it's over 70 miles away. I mean, we're talking about a lot of

appointments over time, correct?

Thanks again!

>

> Hi

>

> It's sad news you have been diagnosed with Cholesteatoma, but good

news your

> GP and her colleague found it - they can go years without being

found, doing

> more and more damage in that time.

>

> The one piece of advice I would offer you is that you shouldn't find

'just'

> an ENT, but should look instead for an 'Otologist' - effectively, an ENT

> specialist but with further specialised training in the ears (as

opposed to

> general training in the Ears, Nose and Throat).

>

> Also, you might want to ask those Otologists you do come across, how

many

> cholesteatomas they have seen and successfully removed. Word of mouth

> recommendation is good; if you were perhaps to state your approximate

> location on this board and ask for a recommendation, that would be a

good

> start.

>

> Good luck; I wish you the very best as you start this journey.

>

> Kazzy J

>

> From: cholesteatoma

[mailto:cholesteatoma ]

> On Behalf Of modestclouds

> Sent: 23 September 2008 14:54

> cholesteatoma

> Subject: Newbie here

>

> Hi. I was at my general doctor yesterday and she found what she

> believes is an early cholesteatoma in my right ear. She had another

> doctor come in and confirm, because she had never actually seen one;

> her colleague had seen several. Her colleague indicated it was so

> small, she probably wouldn't even have caught it.

>

> I hadn't noticed any hearing loss, pain, or dizziness. I went to my

> doctor for near fainting upon standing, but it seems to be a

> cardiovascular thing, not related to the ear. Of course today I swear

> it hurts and my hearing is lessened

>

> I had chronic ear infections as a kid (I'm 29 now), but no problems of

> recent note.

>

> Anyway, reading about this makes me increasingly scared, and I'm

> quickly trying to find a really good ENT. If anyone has any

> experiences from doctors in Minnesota, (particularly the twin cities)

> I'd really appreciate it.

>

> If any one has any other advice, I'd appreciate that too.

>

> Thanks!

>

September 23, 2008

HI,

I also am from the twin Cities area Sorta (Glencoe, MN). My 3 year old daughter had her first surgery in June and is set for her next one on the 30th of Dec. She goes to childrens hospital and see's a pediatric ent. However when she first got diagnosed with this I got a few dr recomondations. I only picked Dr. Lander because he is speciffically for ped's. I was also recomended the Dr's at the university of MN. I was told by a good friend who also happens to be an adiologist that he has heard great things from his clients about them. I do remeber one neurotologist he said was good with adults and peds named Dr. Tina Huang. I hope this helps out. If you have any questions just ask me and if I can answer it for you I will.

Steph

From: modestclouds <modestclouds@...>Subject: Newbie herecholesteatoma Date: Tuesday, September 23, 2008, 8:53 AM

Hi. I was at my general doctor yesterday and she found what shebelieves is an early cholesteatoma in my right ear. She had anotherdoctor come in and confirm, because she had never actually seen one;her colleague had seen several. Her colleague indicated it was sosmall, she probably wouldn't even have caught it.I hadn't noticed any hearing loss, pain, or dizziness. I went to mydoctor for near fainting upon standing, but it seems to be acardiovascular thing, not related to the ear. Of course today I swearit hurts and my hearing is lessened :)I had chronic ear infections as a kid (I'm 29 now), but no problems ofrecent note.Anyway, reading about this makes me increasingly scared, and I'mquickly trying to find a really good ENT. If anyone has anyexperiences from doctors in Minnesota, (particularly the twin cities)I'd really appreciate it.If any one has any other advice, I'd

appreciate that too.Thanks!

September 23, 2008

Neurotologists have received additional training that involves the

nerves that pass through the inner ear. Since cholesteatoma surgery can

often take place near nerves in the area, the additional expertise is a

blessing. A definition of:

Neurotology: A branch of otology concerned with those parts of the

nervous system related to the ear, especially the inner ear and

associated brainstem structures. Also called otoneurology.

Source: neurotology. (2006). In /Mosby's Dictionary of Medicine,

Nursing, & Health Professions/. Philadelphia, PA: Elsevier Health

Sciences. Retrieved September 23, 2008, from

http://www.credoreference.com/entry/6682742/

Mosby's is a pretty well known medical dictionary and it's now in a

product called Credo Reference. Your local library might subscribe to

Credo Reference or another product that contains a reputable medical

dictionary. Often these nice sources are available to you in your home

if you have a library card.

There is a free online medical dictionary available via the U.S.

Government's Medline Plus web site. A site that I personally like a lot

in spite of what I ran into with this definition. See:

http://www.nlm.nih.gov/medlineplus/mplusdictionary.html

The definitions are supplied by Merriam-Websters, but the definition for

neurotology is downright maddening:

" the neurological study of the ear "

I hate it when dictionaries leave you hanging like that! Of course when

I look up neurological:

" of or relating to neurology "

So, finally, neurology:

" a branch of medicine concerned especially with the structure,

functions, and diseases of the nervous system "

You might find other doctors in your area using the following reputable

web site:

http://www.entnet.org/

You can look by state and specialty.

The important thing to remember about this disease is to keep after it.

Schedule regular appointments with your neurotologist after the surgery

- my doc kind of insists on it anyway. I visit him every six months and

hopefully just once a year in the future. That wouldn't be too bad if

the Mayo Clinic has a good neurotologist.

Try not to get yourself too worked up over this. The surgery isn't fun,

but it is considered minor - whether we agree with that or not ... and

my ear ... attached to my head ... not minor! But, I guess it's

relative. :-)

Matt

modestclouds wrote:

>

> Thanks Kazzy and . This board has already been really helpful

> in determining what I need to ask for and what to expect. The sorta

> good thing is that I am in the Twin Cities, and my insurance covers

> University of MN ENTs (two which are board certified in neurotology.

> Is that the same as an otologist, or are they slightly different?

>

> The " bad " thing is that my insurance covers the Mayo Clinic too. I'd

> prefer (of course, who wouldn't!) to go there, but we are a one car

> household, and I don't know if it would be feasible to go there as

> it's over 70 miles away. I mean, we're talking about a lot of

> appointments over time, correct?

>

> Thanks again!

>

> >

> > Hi

> >

> > It's sad news you have been diagnosed with Cholesteatoma, but good

> news your

> > GP and her colleague found it - they can go years without being

> found, doing

> > more and more damage in that time.

> >

> > The one piece of advice I would offer you is that you shouldn't find

> 'just'

> > an ENT, but should look instead for an 'Otologist' - effectively, an ENT

> > specialist but with further specialised training in the ears (as

> opposed to

> > general training in the Ears, Nose and Throat).

> >

> > Also, you might want to ask those Otologists you do come across, how

> many

> > cholesteatomas they have seen and successfully removed. Word of mouth

> > recommendation is good; if you were perhaps to state your approximate

> > location on this board and ask for a recommendation, that would be a

> good

> > start.

> >

> > Good luck; I wish you the very best as you start this journey.

> >

> > Kazzy J

> >

> > From: cholesteatoma

> <mailto:cholesteatoma%40>

> [mailto:cholesteatoma

> <mailto:cholesteatoma%40>]

> > On Behalf Of modestclouds

> > Sent: 23 September 2008 14:54

> > cholesteatoma

> <mailto:cholesteatoma%40>

> > Subject: Newbie here

> >

> > Hi. I was at my general doctor yesterday and she found what she

> > believes is an early cholesteatoma in my right ear. She had another

> > doctor come in and confirm, because she had never actually seen one;

> > her colleague had seen several. Her colleague indicated it was so

> > small, she probably wouldn't even have caught it.

> >

> > I hadn't noticed any hearing loss, pain, or dizziness. I went to my

> > doctor for near fainting upon standing, but it seems to be a

> > cardiovascular thing, not related to the ear. Of course today I swear

> > it hurts and my hearing is lessened

> >

> > I had chronic ear infections as a kid (I'm 29 now), but no problems of

> > recent note.

> >

> > Anyway, reading about this makes me increasingly scared, and I'm

> > quickly trying to find a really good ENT. If anyone has any

> > experiences from doctors in Minnesota, (particularly the twin cities)

> > I'd really appreciate it.

> >

> > If any one has any other advice, I'd appreciate that too.

> >

> > Thanks!

> >

>

--

September 24, 2008

Another thing to look for is a surgeon who has done a fellowship in otology or (for children) pediatric otolaryngology. Our surgeon, who is now an instructor in the ENT residency program for Harvard Medical School assures me that cholesteatoma is well covered in this sort of fellowship. He recommends a nuerotologist if there is a need for a cochlear implant or other types of tumors. Of course, I am sure we could all say that every surgeon is so different, some ENTs are much more trained and experienced than others.

I also would probably travel to the Mayo clinic, if it was me. I did Chloe's first surgery locally, but have travelled fifty miles to Boston for the nine additional. We are a one car family, but it really is not so many appointments once things are settled, and it is worth the inconvenience.

Good Luck,

On 9/23/08,

September 24, 2008

See, the problem is is that I couldn't find anyone with a fellowship

in otology that my insurance covered. Neurotology yes, simple otology

no. I figure I can keep the appointment with the neurotologist, and

perhaps see if she thinks another provider would be better for me.

Thanks for the advice though!

>

> Another thing to look for is a surgeon who has done a fellowship in

otology

> or (for children) pediatric otolaryngology. Our surgeon, who is now an

> instructor in the ENT residency program for Harvard Medical School

assures

> me that cholesteatoma is well covered in this sort of fellowship. He

> recommends a nuerotologist if there is a need for a cochlear implant or

> other types of tumors. Of course, I am sure we could all say that every

> surgeon is so different, some ENTs are much more trained and experienced

> than others.

>

> I also would probably travel to the Mayo clinic, if it was me. I did

> Chloe's first surgery locally, but have travelled fifty miles to

Boston for

> the nine additional. We are a one car family, but it really is not

so many

> appointments once things are settled, and it is worth the inconvenience.

>

> Good Luck,

>

> On 9/23/08,

September 26, 2008

>

> I am new to here but not to Scoliosis. I am 32 a mother of two, a

> wife, oh, sorry a mother of 7(forgot the 2 rabbits, 2 dogs, 2

kids,

> and also my biggest kid my husband) Just Joking, LOL!!

>

> I found out I had Scoliosis at age 5. Rapidly progressed and had

my

> first fusion at age 14 in 1991 then in 1993 had the rods removed

> because of severe pain. In 1999 I had another fusion T4-L4 and in

> 2002 had my rods removed because of severe pain, again.

>

> Now it has been a few years and I am starting to have constant

> moderate lower back and leg pain. Never had problems with my legs

> before and now they just stiffin up and hurt!

>

> I don't want to know if something has changed for the worse. I

feel

> like I am to old or this even though I know others out there older

> then I and still facing alot of challenges.

>

> I am here in Colorado and would like to find a support group. Up

> until recently I hardly ever talked to anyone about Scoliosis. I

> just don't meet people that have it around here. I started to

have

> pain and I got on the internet and have found a couple of sites

and I

> wish they had this when I was a teen it would of been nice to talk

to

> someone that understood exactly how I felt.

>

> Nice to meet everyone!!

>

Hi Adrienne, wecome 2 the site. I just joined a few mos ago myself.

It's a great site. I had my 1st surgery at age 33. I had a total

spinal fusion. My 2nd was in 2000, the very top screw popped lose so

it was taken out but then a yr later I had it all removed 2 see if

it would help the pain. It did'nt & the doc says what ever pain I;m

in I'll be in the rest of my life. So until I'm healed from God I'll

be taking 2 different pain pills & a muscle relaxer oh & a sleeping

pill because I'm always in pain & it wakes me up all through the

night. Please feel free 2 write me. Once again, welcome.

September 30, 2008

> >

> > I am new to here but not to Scoliosis. I am 32 a mother of two,

a

> > wife, oh, sorry a mother of 7(forgot the 2 rabbits, 2 dogs, 2

> kids,

> > and also my biggest kid my husband) Just Joking, LOL!!

> >

> > I found out I had Scoliosis at age 5. Rapidly progressed and had

> my

> > first fusion at age 14 in 1991 then in 1993 had the rods removed

> > because of severe pain. In 1999 I had another fusion T4-L4 and

in

> > 2002 had my rods removed because of severe pain, again.

> >

> > Now it has been a few years and I am starting to have constant

> > moderate lower back and leg pain. Never had problems with my

legs

> > before and now they just stiffin up and hurt!

> >

> > I don't want to know if something has changed for the worse. I

> feel

> > like I am to old or this even though I know others out there

older

> > then I and still facing alot of challenges.

> >

> > I am here in Colorado and would like to find a support group. Up

> > until recently I hardly ever talked to anyone about Scoliosis. I

> > just don't meet people that have it around here. I started to

> have

> > pain and I got on the internet and have found a couple of sites

> and I

> > wish they had this when I was a teen it would of been nice to

talk

> to

> > someone that understood exactly how I felt.

> >

> > Nice to meet everyone!!

> >

> Hi Adrienne, wecome 2 the site. I just joined a few mos ago myself.

> It's a great site. I had my 1st surgery at age 33. I had a total

> spinal fusion. My 2nd was in 2000, the very top screw popped lose

so

> it was taken out but then a yr later I had it all removed 2 see if

> it would help the pain. It did'nt & the doc says what ever pain I;m

> in I'll be in the rest of my life. So until I'm healed from God

I'll

> be taking 2 different pain pills & a muscle relaxer oh & a sleeping

> pill because I'm always in pain & it wakes me up all through the

> night. Please feel free 2 write me. Once again, welcome.

,

I am please to meet you. My dr's found that if they put me on a anti-

depressant pill that it would help to control my pain. It has

worked. Severe pain I don't have unless I over do it!! They didn't

want me to get caught up on alot of pain meds so early in my life

because I was so young. If you haven't already tried it I would

consult with your dr. even your primary. Take care and hope to talk

again.

Adrienne

>

January 16, 2009

-Thanks Dudley,for the info.Hello Fiona,my son is 14 years old.I

think,we both have circulation problems as well.I`m freezing to

death.We both have cold hands and feet,much of the time.Where do you

buy the remedies?Thankyou.Tina

>

> Hi Tina

>

> How old is your son?Â I have epilepsy and for quite a few years

now been suffering from fluid retention. I have been having test on

my heart the last 6 months or so, so I have been on the net trying to

find a connection. I came across this link which gives information

about a link between cardiac involvement and epilepsy. It may be

useful.

>

> http://professionals.epilepsy.com/wi/print_section.php?

section=cardiac

>

> Kind regards

>

> Fiona

>

> From: hayleyscocoabear <hayleyscocoabear@...>

> Subject: Newbie here

>

> Received: Friday, 16 January, 2009, 3:45 PM

>

> Hello:My name is Tina.I just recently bought a couple of Edgar

cayce

> books.My son has autismseziures,circlatory problems,puffy eyes.I

also

> have puffy eyes,poor circulation,thin hair.I`m interested in some

of

> his remedies.Massage therapy,castor oil packs,violet Ray,Wet cell,I

> think is the name,I don`t have my book handy.He says glandular

> imbalance,elimination problems,spinal lesions,are factors in

> epilepsy.Also glandular imbalance,may cause puffy eyes.I have taken

him

> for somechiropractic care,but he doesn`t cooperate very well.Any

advice?

> Need advice,using castor oil packs please.Best massage oil,for

> elimination,spinal lesions.Thankyou.Tina

>

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

>

January 18, 2009

Hi Tina

You could try having an Epsom Salt bath. I usually have them at night before I

go to bed and maybe 2-3 times a week. It draws the toxins out and is supposed to

be helpful for seizures as well. I have a weblink which tell how much per lb of

body weight to use. There is also another website which gives some good

remedies.

Remedies website......

http://www.earthclinic.com/

Epsom Salts Baths websites....

http://www.alternativehealth.co.nz/cancer/bath.htm

And the one below I just found.

http://www.racingsmarter.com/health/natural/epsomsaltbath.htm

http://www.ehow.com/how_4436053_epsom-salt-baths-treating-autism.html

Kind regards

Fiona

> From: hayleyscocoabear <hayleyscocoabear@...>

> Subject: Newbie here

> To:

> Received: Friday, 16 January, 2009, 3:45 PM

>

> Hello:My name is Tina.I just recently bought a couple of Edgar

cayce

> books.My son has autismseziures,circlatory problems,puffy eyes.I

also

> have puffy eyes,poor circulation,thin hair.I`m interested in some

of

> his remedies.Massage therapy,castor oil packs,violet Ray,Wet cell,I

> think is the name,I don`t have my book handy.He says glandular

> imbalance,elimination problems,spinal lesions,are factors in

> epilepsy.Also glandular imbalance,may cause puffy eyes.I have taken

him

> for somechiropractic care,but he doesn`t cooperate very well.Any

advice?

> Need advice,using castor oil packs please.Best massage oil,for

> elimination,spinal lesions.Thankyou.Tina

>

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

>

Links

>

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

October 27, 2009

May I ask where you ordered your Iodoral from?

Bonnie

Newbie here

I am new here, but not new to hypothyroid. I was diagnosed when I was around 18 and I just turned 41. I have been taking armour 2 1/2 grains for 4-5 years now and that dosage is working well for me. I began investigating iodine as I am concerned Armour will cease to exist and I did not want to return to the hell of a T4-only regimen again. About 10 years ago, I had even tried levothroid and cytomel separately, but that still is not as effective as Armour although it was better than t4 alone. Anyway, I have ordered some Iodoral but have some questions before I start. I have been reading everything in the files and following the posts, but I am not clear on the dosages of the companion nutrients required. Can someone tell me how much of the magnesium, selenium, Vit C and sea salt I should be taking every day? Also, what are the common symptoms of bromine detox? I want to know what to look for. Generally, how long does it last?I ordered 50mg Iodoral. Should I begin on that or start on 25mg and titrate up? Thank you for answering my questions. Lori Lville, CA

October 27, 2009

From Breast Cancer Choices. On Tue, Oct 27, 2009 at 1:59 PM, Bonnie <bonnieg@...> wrote:

May I ask where you ordered your Iodoral from?

Bonnie

Newbie here

I am new here, but not new to hypothyroid. I was diagnosed when I was around 18 and I just turned 41. I have been taking armour 2 1/2 grains for 4-5 years now and that dosage is working well for me. I began investigating iodine as I am concerned Armour will cease to exist and I did not want to return to the hell of a T4-only regimen again. About 10 years ago, I had even tried levothroid and cytomel separately, but that still is not as effective as Armour although it was better than t4 alone. Anyway, I have ordered some Iodoral but have some questions before I start. I have been reading everything in the files and following the posts, but I am not clear on the dosages of the companion nutrients required. Can someone tell me how much of the magnesium, selenium, Vit C and sea salt I should be taking every day? Also, what are the common symptoms of bromine detox? I want to know what to look for. Generally, how long does it last?I ordered 50mg Iodoral. Should I begin on that or start on 25mg and titrate up? Thank you for answering my questions. Lori Lville, CA

October 27, 2009

Can anyone order it from this source?

Newbie here

I am new here, but not new to hypothyroid. I was diagnosed when I was around 18 and I just turned 41. I have been taking armour 2 1/2 grains for 4-5 years now and that dosage is working well for me. I began investigating iodine as I am concerned Armour will cease to exist and I did not want to return to the hell of a T4-only regimen again. About 10 years ago, I had even tried levothroid and cytomel separately, but that still is not as effective as Armour although it was better than t4 alone. Anyway, I have ordered some Iodoral but have some questions before I start. I have been reading everything in the files and following the posts, but I am not clear on the dosages of the companion nutrients required. Can someone tell me how much of the magnesium, selenium, Vit C and sea salt I should be taking every day? Also, what are the common symptoms of bromine detox? I want to know what to look for. Generally, how long does it last?I ordered 50mg Iodoral. Should I begin on that or start on 25mg and titrate up? Thank you for answering my questions. Lori Lville, CA

October 27, 2009

Have credit card, will order. :-) I'm just " anyone " and it was just a regular online order process. http://www.breastcancerchoices.org/order.html

On Tue, Oct 27, 2009 at 4:26 PM, Bonnie <bonnieg@...> wrote:

Can anyone order it from this source?

Re: Newbie here

From Breast Cancer Choices.

On Tue, Oct 27, 2009 at 1:59 PM, Bonnie <bonnieg@...> wrote:

May I ask where you ordered your Iodoral from?

Bonnie

October 27, 2009

Thanks......for the info.

Bonnie

Re: Newbie here

From Breast Cancer Choices.

On Tue, Oct 27, 2009 at 1:59 PM, Bonnie <bonniegcommspeed (DOT) net> wrote:

May I ask where you ordered your Iodoral from?

Bonnie

October 29, 2009

There's a lot of info here that answers your questions: http://www.breastcancerchoices.org/iodineindex.htmlAs far as how much to start with... I started at 6.25 and worked my way up to 75, but other people started at 50, so I guess it's a personal choice and knowledge of how sensitive your body is. Good luck!

~WOn Tue, Oct 27, 2009 at 1:45 PM, Lori Linek <squeezle68@...> wrote:

I am new here, but not new to hypothyroid. I was diagnosed when I was around 18 and I just turned 41. I have been taking armour 2 1/2 grains for 4-5 years now and that dosage is working well for me. I began investigating iodine as I am concerned Armour will cease to exist and I did not want to return to the hell of a T4-only regimen again. About 10 years ago, I had even tried levothroid and cytomel separately, but that still is not as effective as Armour although it was better than t4 alone.

Anyway, I have ordered some Iodoral but have some questions before I start. I have been reading everything in the files and following the posts, but I am not clear on the dosages of the companion nutrients required. Can someone tell me how much of the magnesium, selenium, Vit C and sea salt I should be taking every day?

Also, what are the common symptoms of bromine detox? I want to know what to look for. Generally, how long does it last?I ordered 50mg Iodoral. Should I begin on that or start on 25mg and titrate up?

Thank you for answering my questions. Lori Lville, CA

March 25, 2010

Hi, Welcome to the group.

In a message dated 3/25/2010 8:45:02 P.M. Eastern Daylight Time, puffdigi@... writes:

Hi everyone,I am happy to join your support group. Today is day numero uno...and I feel guilty for loading up on food today and am feeling kind of miserable right now! Lol I am anxious to begin this journey! I am so sick of hating myself for being overweight. I cannot be one of those people that can be obese and accept myself..no self love here. Only because I know I have more potential to be healthier and prettier.I went to a weight loss clinic and learned about this diet. I will be taking the injections.I live in Knoxville, TN.I look forward to meeting you all!Rhonda

February 10, 2011

Hi, I am Michele and I live in San Diego. I have a variety of medical issues

and have had 17 surgeries, many being of an orthopedic nature. I just had my

left knee replaced on January 6th of this year. What an experience that was. I

have suffered with chronic pain for 11 years since I fell onto my back on a

concrete floor at work and had to have a 2 level neck fusion. I have been taking

narcotics since then, so my pain relief was challenging to say the least after

my knee replacement. It has gotten better, but there was a few days right after

the catheter was removed and I had to start getting up to go to the bathroom

that I wanted to just go back and undo the entire thing. Fortunately it improved

within a few days.

I have a situation that I don't think is too unique and I am trying to find

out if other may have a similar situation and maybe learn how to go about

getting more information. I have had five surgeries on my left ankle. It began

in 1972 when I was nailed by a truck was I was walking across the street. I had

my first fusion in my ankle in 1994 and the second one in 1999. I began having

problems a few years later. I also was having a reaction to my pierced earrings

and my black hills gold wedding ring. I would get these bright red blistering

sores where ever the jewelry was. My ortho did a bone scan and then asked me if

I was having a reaction to jewelry. He determined I was having an allergic

reaction to the nickle in my hardware in my ankle, so in October 2003 it was

removed.

Okay, fast forward to now. I feel like a complete idiot, but in light of all

of my medical issues, medication and so forth, I forgot the reason the hardware

was removed from my ankle. I can recall the surgery and so forth, but not the

allergy. The titanium was removed from my neck when they had gone in thinking

they would have to extend the fusion one more level, but it had healed so they

removed the plate. I just totally spaced and forgot about the allergy. I had my

surgery on a Thursday. A week from the following day (Friday, 8 days later) I

began to develop these red blistery sores around my staples. I looked at that

and a light bulb went off in my head. It hit me like a ton of bricks! I dealt

with it and put off going to the ER and the following Monday went into the ortho

department and had to have the staples removed. Because they had become embedded

it was extremely painful. I am just grateful the allergy didn't rear its ugly

head until the incision had some chance to heal.

I am a Kaiser patient. My ankle surgeon is Kaiser, and so is my knee surgeon.

Apparently my ankle surgeon either forgot to, or just didn't feel the need to

put down in my medical records that I am allergic to nickle.

I saw my knee surgeon post op a month later and he is down playing my

allergy. He said only a small percentage of people have an allergy to metal.

Well, that may be but I am one of that small percent. He told me all implants

have nickle. He said if he has to remove the implant he will have to put a block

in its place and just fuse my leg straight. This is anything but accceptable to

me.

I don't know what to do. I don't know how to find out what the signs and

symptoms of a reaction are if the implant is deeper inside. I have had ongoing

problems ever since the first reaction to jewelry. I am petrified something can

happen. Not having a knee is not really an option.

I am willing to take some of the blame for knowing I was allergic, but

shouldn't my health group take some for not noting in my medical records about

this problem?

Any advice is so appreciated. Thank you, Michele

February 11, 2011

HI, MICHELE...

I WAS ANXIOUS TO READ ANY POST FROM YOU, AFTER SEEING YOUR

" MUSTLOVEANIMALS " PART. I ADORE ANIMALS! A FORMER AKC JUDGE, MY HEART IS

NOW STRONGLY WITH RESCUE, AND WE HAVE 8 RESCUED DOGS AND 3 RESCUED CATS. I

COULD TALK ABOUT ANIMALS FOR HOURS, BUT ON TO YOUR KNEE SITUATION!

I HAD MY RT. KNEE REPLACED ON DEC. 16TH, AND AM GOING TO REHAB 3 x A WEEK.

IRONICALLY, TODAY I MET A GAL THAT HAD JUST GOTTEN HER SECOND

REPLACEMENT FOR THE SAME KNEE, AS THE FIRST ONE HAD TO BE REMOVED AFTER IT

WAS DISCOVERED THAT SHE TOO WAS ALLERGIC TO METAL. I ASKED

WHAT THE FIRST ONE WAS, AND IT WAS NICKEL. HER NEW ONE IS TITANIUM, AS MINE

IS. I WAS VERY INTERESTED IN HER SITUATION BECAUSE I HAVE AN ALLERGY TO

GOLD, AND WAS REALLY AFRAID OF BEING ALLERGIC TO MY NEW

KNEE. ALL IS WELL THOUGH, THANK GOODNESS! I ASKED HER WHAT THE SYMPTOMS

WERE THAT LET TO THE DIAGNOSIS OF BEING ALLERGIC TO THE KNEE. IT WAS VERY

SWOLLEN, RED AND HOT. I'M HAPPY TO PASS THAT INFORMATION ALONG TO YOU. SHE

IS DOING VERY WELL NOW WITH HER NEW

TITANIUM KNEE.

NEEDLESS TO SAY, I WISH YOU ALL THE VERY BEST! I RARELY POST HERE, BUT LOVE

TO READ AND LEARN. I JUST COULDN'T RESIST RESPONDING TO YOU!

CHEERS!

BARB LINDEN (OKLAHOMA)

-- Newbie here

Hi, I am Michele and I live in San Diego. I have a variety of medical issues

and have had 17 surgeries, many being of an orthopedic nature. I just had my

left knee replaced on January 6th of this year. What an experience that was.

I have suffered with chronic pain for 11 years since I fell onto my back on

a concrete floor at work and had to have a 2 level neck fusion. I have been

taking narcotics since then, so my pain relief was challenging to say the

least after my knee replacement. It has gotten better, but there was a few

days right after the catheter was removed and I had to start getting up to

go to the bathroom that I wanted to just go back and undo the entire thing.

Fortunately it improved within a few days.

I have a situation that I don't think is too unique and I am trying to find

out if other may have a similar situation and maybe learn how to go about

getting more information. I have had five surgeries on my left ankle. It

began in 1972 when I was nailed by a truck was I was walking across the

street. I had my first fusion in my ankle in 1994 and the second one in 1999

I began having problems a few years later. I also was having a reaction to

my pierced earrings and my black hills gold wedding ring. I would get these

bright red blistering sores where ever the jewelry was. My ortho did a bone

scan and then asked me if I was having a reaction to jewelry. He determined

I was having an allergic reaction to the nickle in my hardware in my ankle,

so in October 2003 it was removed.

Okay, fast forward to now. I feel like a complete idiot, but in light of all

of my medical issues, medication and so forth, I forgot the reason the

hardware was removed from my ankle. I can recall the surgery and so forth,

but not the allergy. The titanium was removed from my neck when they had

gone in thinking they would have to extend the fusion one more level, but it

had healed so they removed the plate. I just totally spaced and forgot about

the allergy. I had my surgery on a Thursday. A week from the following day

(Friday, 8 days later) I began to develop these red blistery sores around my

staples. I looked at that and a light bulb went off in my head. It hit me

like a ton of bricks! I dealt with it and put off going to the ER and the

following Monday went into the ortho department and had to have the staples

removed. Because they had become embedded it was extremely painful. I am

just grateful the allergy didn't rear its ugly head until the incision had

some chance to heal.

I am a Kaiser patient. My ankle surgeon is Kaiser, and so is my knee surgeon

Apparently my ankle surgeon either forgot to, or just didn't feel the need

to put down in my medical records that I am allergic to nickle.

I saw my knee surgeon post op a month later and he is down playing my

allergy. He said only a small percentage of people have an allergy to metal.

Well, that may be but I am one of that small percent. He told me all

implants have nickle. He said if he has to remove the implant he will have

to put a block in its place and just fuse my leg straight. This is anything

but accceptable to me.

I don't know what to do. I don't know how to find out what the signs and

symptoms of a reaction are if the implant is deeper inside. I have had

ongoing problems ever since the first reaction to jewelry. I am petrified

something can happen. Not having a knee is not really an option.

I am willing to take some of the blame for knowing I was allergic, but

shouldn't my health group take some for not noting in my medical records

about this problem?

Any advice is so appreciated. Thank you, Michele

February 13, 2011

Thank you for responding and sharing helpful information with me. I ended up

going to urgent care yesterday afternoon because of a pimple type sore that

cropped out of the lower portion of my healing incision. It just came up quick

and nasty. It was raised and red with a white head on it. My incision/scar began

to itch and burn. I didn't want to mess with it. The doctor decided to use

lidocaine and then obtain stuff for a culture. It was a doctor I have never seen

before. He said this was not unusual. I beg to differ. If I have material inside

my knee trying to make an exit at this stage of the game I feel something isn't

quite right. I am on antibiotics again.

It just gets better and better doesn't it?

>

> HI, MICHELE...

> I WAS ANXIOUS TO READ ANY POST FROM YOU, AFTER SEEING YOUR

> " MUSTLOVEANIMALS " PART. I ADORE ANIMALS! A FORMER AKC JUDGE, MY HEART IS

> NOW STRONGLY WITH RESCUE, AND WE HAVE 8 RESCUED DOGS AND 3 RESCUED CATS. I

> COULD TALK ABOUT ANIMALS FOR HOURS, BUT ON TO YOUR KNEE SITUATION!

>

> I HAD MY RT. KNEE REPLACED ON DEC. 16TH, AND AM GOING TO REHAB 3 x A WEEK.

> IRONICALLY, TODAY I MET A GAL THAT HAD JUST GOTTEN HER SECOND

> REPLACEMENT FOR THE SAME KNEE, AS THE FIRST ONE HAD TO BE REMOVED AFTER IT

> WAS DISCOVERED THAT SHE TOO WAS ALLERGIC TO METAL. I ASKED

> WHAT THE FIRST ONE WAS, AND IT WAS NICKEL. HER NEW ONE IS TITANIUM, AS MINE

> IS. I WAS VERY INTERESTED IN HER SITUATION BECAUSE I HAVE AN ALLERGY TO

> GOLD, AND WAS REALLY AFRAID OF BEING ALLERGIC TO MY NEW

> KNEE. ALL IS WELL THOUGH, THANK GOODNESS! I ASKED HER WHAT THE SYMPTOMS

> WERE THAT LET TO THE DIAGNOSIS OF BEING ALLERGIC TO THE KNEE. IT WAS VERY

> SWOLLEN, RED AND HOT. I'M HAPPY TO PASS THAT INFORMATION ALONG TO YOU. SHE

> IS DOING VERY WELL NOW WITH HER NEW

> TITANIUM KNEE.

>

> NEEDLESS TO SAY, I WISH YOU ALL THE VERY BEST! I RARELY POST HERE, BUT LOVE

> TO READ AND LEARN. I JUST COULDN'T RESIST RESPONDING TO YOU!

>

> CHEERS!

>

> BARB LINDEN (OKLAHOMA)

>

> -- Newbie here

>

> Hi, I am Michele and I live in San Diego. I have a variety of medical issues

> and have had 17 surgeries, many being of an orthopedic nature. I just had my

> left knee replaced on January 6th of this year. What an experience that was.

> I have suffered with chronic pain for 11 years since I fell onto my back on

> a concrete floor at work and had to have a 2 level neck fusion. I have been

> taking narcotics since then, so my pain relief was challenging to say the

> least after my knee replacement. It has gotten better, but there was a few

> days right after the catheter was removed and I had to start getting up to

> go to the bathroom that I wanted to just go back and undo the entire thing.

> Fortunately it improved within a few days.

> I have a situation that I don't think is too unique and I am trying to find

> out if other may have a similar situation and maybe learn how to go about

> getting more information. I have had five surgeries on my left ankle. It

> began in 1972 when I was nailed by a truck was I was walking across the

> street. I had my first fusion in my ankle in 1994 and the second one in 1999

> I began having problems a few years later. I also was having a reaction to

> my pierced earrings and my black hills gold wedding ring. I would get these

> bright red blistering sores where ever the jewelry was. My ortho did a bone

> scan and then asked me if I was having a reaction to jewelry. He determined

> I was having an allergic reaction to the nickle in my hardware in my ankle,

> so in October 2003 it was removed.

> Okay, fast forward to now. I feel like a complete idiot, but in light of all

> of my medical issues, medication and so forth, I forgot the reason the

> hardware was removed from my ankle. I can recall the surgery and so forth,

> but not the allergy. The titanium was removed from my neck when they had

> gone in thinking they would have to extend the fusion one more level, but it

> had healed so they removed the plate. I just totally spaced and forgot about

> the allergy. I had my surgery on a Thursday. A week from the following day

> (Friday, 8 days later) I began to develop these red blistery sores around my

> staples. I looked at that and a light bulb went off in my head. It hit me

> like a ton of bricks! I dealt with it and put off going to the ER and the

> following Monday went into the ortho department and had to have the staples

> removed. Because they had become embedded it was extremely painful. I am

> just grateful the allergy didn't rear its ugly head until the incision had

> some chance to heal.

> I am a Kaiser patient. My ankle surgeon is Kaiser, and so is my knee surgeon

> Apparently my ankle surgeon either forgot to, or just didn't feel the need

> to put down in my medical records that I am allergic to nickle.

> I saw my knee surgeon post op a month later and he is down playing my

> allergy. He said only a small percentage of people have an allergy to metal.

> Well, that may be but I am one of that small percent. He told me all

> implants have nickle. He said if he has to remove the implant he will have

> to put a block in its place and just fuse my leg straight. This is anything

> but accceptable to me.

> I don't know what to do. I don't know how to find out what the signs and

> symptoms of a reaction are if the implant is deeper inside. I have had

> ongoing problems ever since the first reaction to jewelry. I am petrified

> something can happen. Not having a knee is not really an option.

> I am willing to take some of the blame for knowing I was allergic, but

> shouldn't my health group take some for not noting in my medical records

> about this problem?

> Any advice is so appreciated. Thank you, Michele

>

February 23, 2011

I am really sorry you are having all these problems. I hope it all gets better

soon. There really is a life after TKR.

All the best, Joan

________________________________

From: mustloveanimals50 <mustloveanimals50@...>

Joint Replacement

Sent: Sun, February 13, 2011 5:21:02 PM

Subject: Re: Newbie here