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The peds reasoning in not giving the referrel is because my son has

other health problems and has been going through alot. She feels that

we should wait until things mellow out. She doesn't think it would be a

good idea to add another doctor to the already over 10 that he sees

now. Her excuse used to be that he was getting the proper care and

therapies he needed. Now that he obviously hasn't progressed thats not

her reasoning anymore.

Tasha

Liz <lizlaw@...> wrote:

>

> What is her stated excuse for not referring? >

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OK, I now understand your patience for her in that if you lose her then

you lose the one point of contact to all the 10 other docs and it sounds

like she has been generally helpful with those referrals. I think you

need to calmly and firmly explain to her that your research has shown

you that while not enough is understood about speech disorders, the

medical community is recognizing that they are the result of a

neurological dysfunction that is sometimes related to the malabsorption

of vitamins. So you may have a neurological and gastro problem on your

hands. You know your son's medical condition with speech is involved not

to mention whatever requires 10 different doctors for whatever stuff he

has that I do not know about and the person most qualified to help you

pull this all together and best address his needs is the very specialist

she is denying access to. If she does not do it you need to call the

specialist yourself, schedule the appointment with a referral

forthcoming and either get a new pediatrician or go to one just to get

the referral and later tell her a second opinion was needed.

bradensmom14 wrote:

>The peds reasoning in not giving the referrel is because my son has

>other health problems and has been going through alot. She feels that

>we should wait until things mellow out. She doesn't think it would be a

>good idea to add another doctor to the already over 10 that he sees

>now. Her excuse used to be that he was getting the proper care and

>therapies he needed. Now that he obviously hasn't progressed thats not

>her reasoning anymore.

>Tasha

>

>

>Liz <lizlaw@...> wrote:

>

>

>>What is her stated excuse for not referring? >

>>

>>

>

>

>

>

>

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That is how I got referred to a neurologist. I threw a temper tantrum. After

Cole got potty trained, I called and asked them if they wanted the urine

specimen that they couldn't get at his 3 yr checkup. The receptionist said no

too late. I said please have a nurse call me. Nurse called...she said no

didn't need it...too late. I said " late for what? What is the test for that he

is missing out on? " She said lots of things...among them diabetes.... I said

ok so I guess it can wait 6 months until he is 4...I mean no need to find out as

soon as possible if he has any of those bad things. My sarcasm came through

loud and clear. She was very nice and she had one of the doctors call me. He

confirmed what she said...he said they can't always get a specimen from a 3 year

old and no big deal. Ok...remember I am grandma...I have known this doctor

since he was 15. Really smart, great role model for my kids, was our first swim

team coach and I have the utmost respect for him as a doctor. We got to talking

about why no one has referred us to anyone except EI. I said... " When we see you

at the pool and you say 'Hi Cole' and he says 'Hi Cole' back, doesn't that raise

any red flags for you? " He said we had it covered. We were doing everything

possible. I said not true. There are biomedical interventions (for autism for

instance) that are working for some people. We don't have a diagnosis though of

anything but DDs so I am fumbling around in the dark...on the internet... " hmmm

that sounds like him...and also that...and that. He said ok, we can go that

route if you want...I think you would like this doctor. He is very interested

in things like that. So that is how we got there. Aggie

Re: [ ] Re: update

OK, I now understand your patience for her in that if you lose her then

you lose the one point of contact to all the 10 other docs and it sounds

like she has been generally helpful with those referrals. I think you

need to calmly and firmly explain to her that your research has shown

you that while not enough is understood about speech disorders, the

medical community is recognizing that they are the result of a

neurological dysfunction that is sometimes related to the malabsorption

of vitamins. So you may have a neurological and gastro problem on your

hands. You know your son's medical condition with speech is involved not

to mention whatever requires 10 different doctors for whatever stuff he

has that I do not know about and the person most qualified to help you

pull this all together and best address his needs is the very specialist

she is denying access to. If she does not do it you need to call the

specialist yourself, schedule the appointment with a referral

forthcoming and either get a new pediatrician or go to one just to get

the referral and later tell her a second opinion was needed.

bradensmom14 wrote:

>The peds reasoning in not giving the referrel is because my son has

>other health problems and has been going through alot. She feels that

>we should wait until things mellow out. She doesn't think it would be a

>good idea to add another doctor to the already over 10 that he sees

>now. Her excuse used to be that he was getting the proper care and

>therapies he needed. Now that he obviously hasn't progressed thats not

>her reasoning anymore.

>Tasha

>

>

>Liz <lizlaw@...> wrote:

>

>

>>What is her stated excuse for not referring? >

>>

>>

>

>

>

>

>

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Have you seen the neuro yet?

Gene and Aggie Birocco wrote:

>That is how I got referred to a neurologist. I threw a temper tantrum. After

Cole got potty trained, I called and asked them if they wanted the urine

specimen that they couldn't get at his 3 yr checkup. The receptionist said no

too late. I said please have a nurse call me. Nurse called...she said no

didn't need it...too late. I said " late for what? What is the test for that he

is missing out on? " She said lots of things...among them diabetes.... I said

ok so I guess it can wait 6 months until he is 4...I mean no need to find out as

soon as possible if he has any of those bad things. My sarcasm came through

loud and clear. She was very nice and she had one of the doctors call me. He

confirmed what she said...he said they can't always get a specimen from a 3 year

old and no big deal. Ok...remember I am grandma...I have known this doctor

since he was 15. Really smart, great role model for my kids, was our first swim

team coach and I have the utmost respect for him as a

> doctor. We got to talking about why no one has referred us to anyone except

EI. I said... " When we see you at the pool and you say 'Hi Cole' and he says 'Hi

Cole' back, doesn't that raise any red flags for you? " He said we had it

covered. We were doing everything possible. I said not true. There are

biomedical interventions (for autism for instance) that are working for some

people. We don't have a diagnosis though of anything but DDs so I am fumbling

around in the dark...on the internet... " hmmm that sounds like him...and also

that...and that. He said ok, we can go that route if you want...I think you

would like this doctor. He is very interested in things like that. So that is

how we got there. Aggie

> Re: [ ] Re: update

>

>

> OK, I now understand your patience for her in that if you lose her then

> you lose the one point of contact to all the 10 other docs and it sounds

> like she has been generally helpful with those referrals. I think you

> need to calmly and firmly explain to her that your research has shown

> you that while not enough is understood about speech disorders, the

> medical community is recognizing that they are the result of a

> neurological dysfunction that is sometimes related to the malabsorption

> of vitamins. So you may have a neurological and gastro problem on your

> hands. You know your son's medical condition with speech is involved not

> to mention whatever requires 10 different doctors for whatever stuff he

> has that I do not know about and the person most qualified to help you

> pull this all together and best address his needs is the very specialist

> she is denying access to. If she does not do it you need to call the

> specialist yourself, schedule the appointment with a referral

> forthcoming and either get a new pediatrician or go to one just to get

> the referral and later tell her a second opinion was needed.

>

> bradensmom14 wrote:

>

> >The peds reasoning in not giving the referrel is because my son has

> >other health problems and has been going through alot. She feels that

> >we should wait until things mellow out. She doesn't think it would be a

> >good idea to add another doctor to the already over 10 that he sees

> >now. Her excuse used to be that he was getting the proper care and

> >therapies he needed. Now that he obviously hasn't progressed thats not

> >her reasoning anymore.

> >Tasha

> >

> >

> >Liz <lizlaw@...> wrote:

> >

> >

> >>What is her stated excuse for not referring? >

> >>

> >>

> >

> >

> >

> >

> >

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We saw the neuro earlier this year. But, basically was only to

discuss why he was sleeping so much. We were in the room with the doc

maybe 2 min and he scheduled a MRI, was called and told were normal

results. Apraxia hadn't even been mentioned back then. I thought

about making another appt with them, since already a patient I don't

think I would need a new referrel. I'm not sure. Funny thing though,

I got a call from his speech therapists the other day and she stated

that she revised the eval she did on him a while back. Told me she

just corrected the spelling of one of his diagnosis. Seen her today

didn't mention anything about it. We got the revised eval in mail

today and it sure as heck said ..apraxia suspected, cannot be ruled

out..hhmm was she correcting her spelling or correcting

herself...just thought was funny..

>

> Have you seen the neuro yet?

>

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  • 2 months later...

Inspriring!

>

> Its been awhile since I have been on the board and thought I would

share what we have been learning about our daughter. We finally got

a second opinion to match what our kinesthesiologist has been saying

by someone more on the traditional side of medicine....Her speech

delay and low motor skills have to tie in with her cranial sacral

system (the easiest way to describe it is that it is the cobweb

system that connects the nerve endings and brain signals that helps

the body communicate) is out of whack which is why her skills are

intermittent. They are there, just not firing all of the time. This

is reversable but will take special massage type therapies from the

O/T P/T and S/T. The kinesthesiologist also recently went through a

new training that uses like a lazer pointer pen to target key points

at the bodies core to reconnect the system and get it to hold verses

shutting itself off. (going through stores with all of the

electronics and security

> systems keeps shutting her system off) The whole thing was most

likely created when our daughter was in the womb and got a viral

infection while in there or very shortly after birth that went

undetected. The vaccines just promoted further yeast growth to

contribute to the problem and then her therapists at the early stages

shut things down further by not going after the root cause and

telling her to " act like a trained seal on their command for

treatment " rather than working with her whole system, which

ultimately trained her brain to shut itself off further...Since we

have started this new regime of treatment we have heard her make many

more sounds, she is indicating whe wants to get down off of our laps

to try to walk even though her feet/legs don't know what to do

yet....and it has only been about two weeks....so there is light at

the end of the tunnel again...So for those that still may not have

answers...keep looking for them...it has taken us

> two years to get two different people that do not know of each

other to confirm what we have suspected...

>

> Debbie and Cadyn

>

> __________________________________________________

>

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Debbie,

I would agree that there is something amiss in our kids with regards to the

cranial sacral system.

This is why I promote crawling, creeping, marching & skipping (properly) daily

for our kids for a period of 4 to 5 months. Something elemental 'changed' for

Mark after we did this. While he did not immediately become a super-athlete,

there was a sense of body, self and space that magicly appeared after this. His

'systems' clicked together in a way that had not been there previously. This

set the scene for his abilities to do athletics today...... for 11 years, he was

a clod; after 4 months of redoing the 'basics'..... he has now the same athletic

proficiency of all other kids, if not more since I keep him in pretty good

cardiovascular shape.

Why is this? I can only think that this ties in with the brain, the central

nervous system and the visual system. The resulting changes have been

permanent. Such an overwhelmingly simple sollution to such a profound problem!

Janice

Mother of Mark, 12

[sPAM] [ ] Re: Update

Inspriring!

>

> Its been awhile since I have been on the board and thought I would

share what we have been learning about our daughter. We finally got

a second opinion to match what our kinesthesiologist has been saying

by someone more on the traditional side of medicine....Her speech

delay and low motor skills have to tie in with her cranial sacral

system (the easiest way to describe it is that it is the cobweb

system that connects the nerve endings and brain signals that helps

the body communicate) is out of whack which is why her skills are

intermittent. They are there, just not firing all of the time. This

is reversable but will take special massage type therapies from the

O/T P/T and S/T. The kinesthesiologist also recently went through a

new training that uses like a lazer pointer pen to target key points

at the bodies core to reconnect the system and get it to hold verses

shutting itself off. (going through stores with all of the

electronics and security

> systems keeps shutting her system off) The whole thing was most

likely created when our daughter was in the womb and got a viral

infection while in there or very shortly after birth that went

undetected. The vaccines just promoted further yeast growth to

contribute to the problem and then her therapists at the early stages

shut things down further by not going after the root cause and

telling her to " act like a trained seal on their command for

treatment " rather than working with her whole system, which

ultimately trained her brain to shut itself off further...Since we

have started this new regime of treatment we have heard her make many

more sounds, she is indicating whe wants to get down off of our laps

to try to walk even though her feet/legs don't know what to do

yet....and it has only been about two weeks....so there is light at

the end of the tunnel again...So for those that still may not have

answers...keep looking for them...it has taken us

> two years to get two different people that do not know of each

other to confirm what we have suspected...

>

> Debbie and Cadyn

>

> __________________________________________________

>

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  • 4 months later...
Guest guest

So glad to hear from you Rogene...You are greatly missed here.

We love you and looking forward to having you back after

recovery of course. I am praying for NO radiation and

quick recovery in the name of Jesus.

Well dont stress over the hair thing because is will grow back.

Happy healing to you !!!

Love

In a message dated 3/9/2008 4:11:11 P.M. Eastern Daylight Time, saxony01@... writes:

Thanks for all your prayers,

I'm still in the hospital . . . The doctor successfully removed all the tumor Friday.

I'll probably go home tomorrow after he removes the drain.

The jury is still out on radiation. . . depends on the path report.

I can't say I feel great - but this is all temporary . . . And, considering everything, I'm feeling pretty good.

Hubby brought computer to the hospital - but it doesn't work in the room . . . so I won't be online again until I get home.

The doctor was right. His hair cuts are awful!

Hugs,

Rogene

It's Tax Time! Get tips, forms and advice on AOL Money Finance.

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Guest guest

So glad to hear from you Rogene...You are greatly missed here.

We love you and looking forward to having you back after

recovery of course. I am praying for NO radiation and

quick recovery in the name of Jesus.

Well dont stress over the hair thing because is will grow back.

Happy healing to you !!!

Love

In a message dated 3/9/2008 4:11:11 P.M. Eastern Daylight Time, saxony01@... writes:

Thanks for all your prayers,

I'm still in the hospital . . . The doctor successfully removed all the tumor Friday.

I'll probably go home tomorrow after he removes the drain.

The jury is still out on radiation. . . depends on the path report.

I can't say I feel great - but this is all temporary . . . And, considering everything, I'm feeling pretty good.

Hubby brought computer to the hospital - but it doesn't work in the room . . . so I won't be online again until I get home.

The doctor was right. His hair cuts are awful!

Hugs,

Rogene

It's Tax Time! Get tips, forms and advice on AOL Money Finance.

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Guest guest

Rogene ~

Hello, glad your surgery went well. Sorry about the

cut, men will be men, I guess......Glad your tumor was

successfully removed. You are in my thoughts and

prayers, lots of drama at my house, long and involved.

Daughter was clean, all a setup.

I love you ~ DedeIt's Tax Time! Get tips, forms and advice on AOL Money Finance.

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Guest guest

Rogene,

Thanks so much for letting us know, we have been concerned.

Too bad about the bad haircut, but it will grow.

I am glad they got all the tumor. I hope the bone was clean.

Glad you can get home so soon.

Let us know how you are as soon as you can.

Prayers continuing.

Lynda

At 02:10 PM 3/9/2008, you wrote:

>Thanks for all your prayers,

>

>I'm still in the hospital . . . The doctor successfully removed all

>the tumor Friday.

>

>I'll probably go home tomorrow after he removes the drain.

>

>The jury is still out on radiation. . . depends on the path report.

>

>I can't say I feel great - but this is all temporary . . . And,

>considering everything, I'm feeling pretty good.

>

>Hubby brought computer to the hospital - but it doesn't work in the

>room . . . so I won't be online again until I get home.

>

>The doctor was right. His hair cuts are awful!

>

>Hugs,

>

>Rogene

>

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Guest guest

Rogene,

It is good to hear form you. I have been thinking and praying for you so much these past few days as I know everyone here has been also.

First of all, I am very happy to hear he got all the tumor out!!!!!! I remember in one of your first post here after you got the news that "you just want it out".....that part is now behind you!!!!!

Second, I will continue to pray for NO radiation. However, I also pray that whatever is needed to get you back to 100% is done!!!

Finally, as far as your hair, well yes it will grow back. BUT I am sure right now that does not help. You are the type of person who finds the positive things in everything, so I am sure you can play around with wigs, style your hair a little different or wear some cute hats. HEY, you could even join the purple hat ladies (or is it red), well you know what I mean :) It will grow back but since that does not help you in the now, just take care of yourself, stay positive and know that we all love and care about you so much!!!!!

Sending lots of love your way,

Beth

Update

Thanks for all your prayers,

I'm still in the hospital . . . The doctor successfully removed all the tumor Friday.

I'll probably go home tomorrow after he removes the drain.

The jury is still out on radiation. . . depends on the path report.

I can't say I feel great - but this is all temporary . . . And, considering everything, I'm feeling pretty good.

Hubby brought computer to the hospital - but it doesn't work in the room . . . so I won't be online again until I get home.

The doctor was right. His hair cuts are awful!

Hugs,

Rogene

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Guest guest

Rogene,

I am so happy they were able to remove the entire tumor. I will

continue to pray that you don't need radiation and that your recovery

is speedy.

Love, Lynn

>

> Thanks for all your prayers,

>

> I'm still in the hospital . . . The doctor successfully removed all

the tumor Friday.

>

> I'll probably go home tomorrow after he removes the drain.

>

> The jury is still out on radiation. . . depends on the path report.

>

> I can't say I feel great - but this is all temporary . . . And,

considering everything, I'm feeling pretty good.

>

> Hubby brought computer to the hospital - but it doesn't work in the

room . . . so I won't be online again until I get home.

>

> The doctor was right. His hair cuts are awful!

>

> Hugs,

>

> Rogene

>

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Guest guest

Rogene,

It's so great to hear from you. Please rest and take good care of

yourself. We miss you!!

Sis

>

> Thanks for all your prayers,

>

> I'm still in the hospital . . . The doctor successfully removed

all the tumor Friday.

>

> I'll probably go home tomorrow after he removes the drain.

>

> The jury is still out on radiation. . . depends on the path report.

>

> I can't say I feel great - but this is all temporary . . . And,

considering everything, I'm feeling pretty good.

>

> Hubby brought computer to the hospital - but it doesn't work in

the room . . . so I won't be online again until I get home.

>

> The doctor was right. His hair cuts are awful!

>

> Hugs,

>

> Rogene

>

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Guest guest

Rogene,

It's so great to hear from you. Please rest and take good care of

yourself. We miss you!!

Sis

>

> Thanks for all your prayers,

>

> I'm still in the hospital . . . The doctor successfully removed

all the tumor Friday.

>

> I'll probably go home tomorrow after he removes the drain.

>

> The jury is still out on radiation. . . depends on the path report.

>

> I can't say I feel great - but this is all temporary . . . And,

considering everything, I'm feeling pretty good.

>

> Hubby brought computer to the hospital - but it doesn't work in

the room . . . so I won't be online again until I get home.

>

> The doctor was right. His hair cuts are awful!

>

> Hugs,

>

> Rogene

>

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  • 1 month later...
Guest guest

> So as I wait for a sample of Digest...I ask myself, ok the stimming

> is gone.... Is glutenease all he needs?

Possibly. Are there any remaining issues that you want to address?

> Do I need to press the envelope because he has gut issues that I need

> to address so I need to stir the pot to get rid of them?

At my house, enzymes, certain supplements, and ALA chelation

eliminated gut issues and healed my kids' guts.

Dana

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  • 2 weeks later...
Guest guest

All kinds of stuff, in the morning I have an evaluation in Ft.

on a sympathetic nerve block on my RSD. Next day a PET

scan and a heart scan. Doing EMDR to relieve the fear of the

anti-hormone that will come down the road soon. Delayed chemo

because of side effects. Hope to do it on the 6th. May have to

change chemo types. Not ready to go to the hormone until more of the

actual cancer is killed. Working on lots of stuff. Will update

after I get the results of the PET and the doctor's take on all of

this. Will be doing guided imagery and visualization tapes to work

with the Femara instead of having it work against my body. Just

trying to do everything that will help me live the longest.

Lynda

At 08:59 PM 4/27/2008, you wrote:

>Lynda,

>

>I have been thinking of you. I hope everything is okay.

>

>Love, Lynn

>

> >

> > >I'm healing slowly but surely. Within the past 6 days I've gone

> > >from 1.6 inches down to 1.3 inches. Not very much but at least

>I'm

> > >making progress!

> > >

> > >Love to all,

> > >Traci

> > >

> > >

> > >

> > >

> > > " Feeling down? Saddle up. "

> > >

> > >~Author Unknown

> > >

> > >Be a better friend, newshound, and know-it-all with Mobile.

> >

> ><<http://us.rd./evt=51733/*http://mobile./;_ylt=A

> hu0>http://us.rd./evt=51733/*http://mobile./;_ylt=Ahu0

>6i62sR8HDtDypao8Wcj9tAcJ>Try

> > >it now.

> > >

> >

>

>

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Guest guest

Thanks for the update Lynda,It looks like you are staying really, really busy.I checked out EMDR therapy online. Looks really interesting . .. Kind of like Reframing . .. Do you know what I'm talking about? Are you doing this through the cancer treatment center? . . . I'd love to do it myself! Tell your Sis we appreciate the good care she's giving you! . .. Your spirits sound like they're much better since she's been there!Love,Rogene

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Guest guest

Lynda . . .You really are the strong woman in many women's lives . . . I know you'll leave no stone unturned to get well!You know you are in our prayers!Love,Rogene

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Guest guest

Rogene,

The EMDR is through a private therapist, sliding scale, thank God.

I think it is helping.

I am doing better emotionally, it can be a roller coaster, but I am

in the planning stages and working on my future. Cannot hold a

strong woman down.

I am working very, very hard on all the complementary therapies I can

get to help me through this. I am also going so far in the hole

financially that it hurts.

Eating better since the chemo is delayed. Having to take steroids to

keep down the hand foot syndrome that is delaying the chemo. Have my

feet on ice right now. 6th time this afternoon.

Will be seeing a podiatrist soon as I got infection in one toe. Got

rid of it, but don't want any more of that.

Still have my hair. Working on keeping it.

May have to change chemo the last few months.

Am looking at the other things that I might be able to do to get rid

of the final cancers that show up. like ablutation of the liver one

if it is still there and radiofrequency of the bone ones if they get

small enough. May need to do extra chemos to get them small enough

to do that. That may be a possibility. I am pushing to get the most

out of chemo so I can live longer on the anti-hormone. I think my

grandkids need me around. I am the strong woman in their lives.

So keep up the prayers. I will know a lot more by the 7th of May.

Lynda

At 09:30 PM 4/27/2008, you wrote:

>Thanks for the update Lynda,

>

>It looks like you are staying really, really busy.

>

>I checked out EMDR therapy online. Looks really interesting . ..

>Kind of like Reframing . .. Do you know what I'm talking about?

>

>Are you doing this through the cancer treatment center? . . . I'd

>love to do it myself!

>

>Tell your Sis we appreciate the good care she's giving you! . ..

>

>Your spirits sound like they're much better since she's been there!

>

>Love,

>

>Rogene

>

>

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  • 3 months later...
Guest guest

Hi,

I cannot relate to the mammo, mri and cysts from breast implants (I

had cysts before implants, but none since), but I can relate to the

hot feverish and toxic feeling in the breasts. Just before I got

desperately ill, I had the weirdness in my breasts that was

characterized by squeaking breasts (literally, they squeaked when I

massaged them) and they were so hot to the touch that I knew

something was wrong. I called the plastic surgeon and he acted like

he had never heard of such a thing. (I think they all act dumb about

these things. I know I wasn't the only one, because I've seen other

discussions about squeaky breasts on the internet). He did nothing,

offered nothing.

I believe that some kind of infection causes the fevered breasts,

even a subclinical one.

I hope you get it figured out, and I hope you don't crash into a big

mess like I did! Are you going to remove your implants?

Patty

>

> hi ladies,

> i posted to you all about a week or so ago regarding a red, hot

rash

> on my breast and a lump. Well here is my udate.

> I had an an ultrasound done(showed cysts that the doctor said

looked

> cystic) had a mammo done, found a cyst on left side now! Had an MRI

> done and the radiologists report scared me silly.

> Saw enlarged lymph nodes in axillary (armpit) saw inflammation on

> right side. wording on report* altho enhancement curves in this

> region do not suggest malignancy, an inflammatory carcinoma cannot

> be ruled out. somewhat more worrisome are the enlarged lymph nodes

> in the right axillary region which show enhancement curve

suspicious

> for malignancy " Implants are in place (saline). suggests biopsy.

> oK, SO THIS REPORT GETS SENT TO THE BREAST SURGEON. I went in to

see

> her and she did another ultrasound and guess what? NOTHING!

> everything is cleared. This is now about 2 weeks after the week of

> antibiotcs. The dr said it must have been an infection.

> Ok, of course this is what i wanted to hear but im a little

worried.

> Did the implants really cause all this 8.5 yrs after they were

> placed and then it just cleared??? the palapble lump is just gone?!

> Im still having sudden sharp pains in legs, hands. knees and bad

> lower back pain. I think this joint pain is from the implants Im

now

> relaising. The breast feels so much better. It was hot and red to

> the touch and I feared it was inflammatory breast cancer when i

> first got it 2 weeks ago. I do feel sort of a " hard to describe

> feeling " in my right breast....sort of like a pulling at times, and

> a hot toxic feeling in it. Make sense.

> Does anyone have any imput? Has anyone gone thru an mri, mammo, etc

> and had cysts showing that dissappeared??

>

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Guest guest

hi patty,

yes, im going to get them out. Ive seen that squeaking breast on the

implantinfo site. Ive never had that. Well I thought I was problem

free from these all this time until this episode with the red hot

rash and pain. So weird....but after reading what everyone hasgone

thru here I guess its all related to everything lese ive had and I

had no clue until now. I cant wait to get them out.

> >

> > hi ladies,

> > i posted to you all about a week or so ago regarding a red, hot

> rash

> > on my breast and a lump. Well here is my udate.

> > I had an an ultrasound done(showed cysts that the doctor said

> looked

> > cystic) had a mammo done, found a cyst on left side now! Had an

MRI

> > done and the radiologists report scared me silly.

> > Saw enlarged lymph nodes in axillary (armpit) saw inflammation

on

> > right side. wording on report* altho enhancement curves in this

> > region do not suggest malignancy, an inflammatory carcinoma

cannot

> > be ruled out. somewhat more worrisome are the enlarged lymph

nodes

> > in the right axillary region which show enhancement curve

> suspicious

> > for malignancy " Implants are in place (saline). suggests biopsy.

> > oK, SO THIS REPORT GETS SENT TO THE BREAST SURGEON. I went in to

> see

> > her and she did another ultrasound and guess what? NOTHING!

> > everything is cleared. This is now about 2 weeks after the week

of

> > antibiotcs. The dr said it must have been an infection.

> > Ok, of course this is what i wanted to hear but im a little

> worried.

> > Did the implants really cause all this 8.5 yrs after they were

> > placed and then it just cleared??? the palapble lump is just

gone?!

> > Im still having sudden sharp pains in legs, hands. knees and bad

> > lower back pain. I think this joint pain is from the implants Im

> now

> > relaising. The breast feels so much better. It was hot and red

to

> > the touch and I feared it was inflammatory breast cancer when i

> > first got it 2 weeks ago. I do feel sort of a " hard to describe

> > feeling " in my right breast....sort of like a pulling at times,

and

> > a hot toxic feeling in it. Make sense.

> > Does anyone have any imput? Has anyone gone thru an mri, mammo,

etc

> > and had cysts showing that dissappeared??

> >

>

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  • 4 weeks later...

Wow, Mark, Zero out of college now!!! And NOT living at home!!! Time

flies, really. Wish I had more time but am soooooo glad your family

are all doing so well. I actually just wondered about Zero the other

day, as I don't get to read all the posts here daily. So am so glad I

saw your update today!! My Aspie son is 19 and in college now, at

local community college; will transfer to a 4 yr.

>

> I just went into the database and updated my family info. Wow, I

> can't believe it has been 5 years since last I updated that info.

>

> We have had two more kids since then. We've adopted and

> Lillian in the last five years (that's 8 now) and Zero has graduated

> college and moved to Phoenix. Ty is now a college sophomore.

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  • 2 months later...

Anne,

I know you are working hard on finding a way to get those implants

out. I am sure your doctor can get insurance to pay for explant. He

may be knowledgeble in many areas. I think it would be great if you

didn't need to have a lift. Many women don't need one.

Here is what I don't trust Anne. You MUST have the scar capsules

removed. We have many indications that retained scar capsules, over

time, create additional health problems for women who have been ill.

It means that if you don't have the implants removed correctly, you

could stay ill. Not having a correct explant means two things: you

would not get better and you may have to go in to have another

surgery later to remove the capsules.

Mayo clinic has never given us any reason to believe that they

understand the illnesses women have faced with implants, or know how

to treat us. They have never helped one single woman on our group

who has had experience going to their clinics.

I understand your desire to have the implants out as soon as possible

with a doctor as close as possible and with the ability to get it

covered by insurance. That would be the easy way. It would be so

wonderful for us to be able to get great care from any plastic

surgeon we call, in any location in the country, and who all have the

same knowledge about a proper explant. For a woman who is not sick,

having an explant from any doctor may work out just fine. She would

be one of the lucky ones.

But for those who are sick, it is VITAL that the explant be performed

correctly, in order to ensure that the immune system can have the

best chance for recovery. Sadly for us, most doctors do not believe

that implants have made us ill, therefore don't take proper explant

seriously. We have a very few astute doctors who have in fact

recognized that implants have made women sick, and we are so grateful

for them because they treat us with compassion.

One of these doctors is Dr. Kolb in Atlanta, and the reason she

knows implants make women sick is because it happened to HER. She

saw firsthand how the symptoms developed in her own body with her

silicone gel implants. She's written about it on her own website,

www.plastikos.com

It's a hard choice Anne, and I know....I've been there. But let me

just say that the peace of mind you have from knowing you got them

out right by insisting on a total capsulectomy is worth the effort,

time and money you will expend. If you do not get the capsules

removed and over time do not get better, would you want to be in the

position of sitting there wondering if you would be better if the

surgery had been done right?

Patty

>

> There is nothing more encouraging than your notes... thank you so

> much. I also appreciate all the information that has been

> forwarded. I go back through the information whenever I'm feeling

> well enough.

>

> Monday evening I went to the hospital complaining of chest pain in

> the middle of my the left side of my chest. That breast (left)

> continues to feel uncomfortable and this discomfort goes in to my

> left underarm. My pulse today was 126 and should be between 70-75

so

> he put me on a beta blocker. My blood pressure is fine. He said

he

> also reviewed my records for the first time (I've been seeing him

for

> almost 2 years) and apparently he and prior drs. think it is

possible

> it is a panic/anxiety disorder. The said I'm releasing too much

> adrenaline. He does not think there is anything wrong with my

lyphm

> nodes mostly because he said I wouldn't have pain. I've complained

> of pain where my lymph nodes are (top of my leg/groin), abdomen,

> below ribs, in breast and underarm, and chest/neck area. All has

> been on my left side.

>

> My implants need to come out-I get it. All my complaints are on my

> left side and my left breast doesn't feel right. I'm afraid of

what

> they will find. I need to get them out.

>

> Wouldn't you think this doctor would know how to get insurance to

pay

> if he did the DOW explants? He felt my breasts would fall in to

> place without needing a lift but Patty you don't trust that? I am

> hoping to also be able to talk to some U of M surgeons. What about

> Mayo for explant?

>

> Anne

>

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Anne,

I have had painful lymph nodes for years, and it surprises me to see

that a doctor would say that lymph nodes can't become painful. I

experienced pain in the same spots that you are complaining about -

top of leg/groin, abdomen, chest, underarms. I also never had panic

attacks until I got implants, and I haven't had one since I had them

removed.

Sis

> >

> > There is nothing more encouraging than your notes... thank you

so

> > much. I also appreciate all the information that has been

> > forwarded. I go back through the information whenever I'm

feeling

> > well enough.

> >

> > Monday evening I went to the hospital complaining of chest pain

in

> > the middle of my the left side of my chest. That breast (left)

> > continues to feel uncomfortable and this discomfort goes in to

my

> > left underarm. My pulse today was 126 and should be between 70-

75

> so

> > he put me on a beta blocker. My blood pressure is fine. He

said

> he

> > also reviewed my records for the first time (I've been seeing

him

> for

> > almost 2 years) and apparently he and prior drs. think it is

> possible

> > it is a panic/anxiety disorder. The said I'm releasing too much

> > adrenaline. He does not think there is anything wrong with my

> lyphm

> > nodes mostly because he said I wouldn't have pain. I've

complained

> > of pain where my lymph nodes are (top of my leg/groin), abdomen,

> > below ribs, in breast and underarm, and chest/neck area. All

has

> > been on my left side.

> >

> > My implants need to come out-I get it. All my complaints are on

my

> > left side and my left breast doesn't feel right. I'm afraid of

> what

> > they will find. I need to get them out.

> >

> > Wouldn't you think this doctor would know how to get insurance

to

> pay

> > if he did the DOW explants? He felt my breasts would fall in to

> > place without needing a lift but Patty you don't trust that? I

am

> > hoping to also be able to talk to some U of M surgeons. What

about

> > Mayo for explant?

> >

> > Anne

> >

>

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